Living without a Thyroid Gland

Good afternoon. This is my 1st time on this site.  I had a total thyroidectomy 3 weeks ago.  They suspected cancer, but It ended up being benign.  Yeah.  

To back up a bit, I was diagnosed with Hypothyroidism at the age of 22 and then figured out the cause of the hypothyroidism was Hashimoto Thyroiditis at the age of 28. Well, over the years nodules were found on both sides of my gland and were monitored. About 6 months ago during my annual exam they noticed my gland was extremely enlarged and my nodules were abnormally large. Well, we ran all the tests and did a needle biopsy. The report came back as suspicious. At that point I met with the surgeon and the rest is history.

I am pleased to be through the scare, but now need to find out about living without the gland.  Over the last 3 weeks I have found myself to be very weepy and emotional. I am also very tired during the day, but struggle to get a good nights rest. I have also woken up with the feeling of panic attacks. My guess is that my dosage is off. Right after the surgery they put me on the same dosage of thyroid replacement medicine (150 mcg) I was on prior to the surgery. I have 3 weeks to go until I have my levels tested.

So, I am 31 and struggling with all the chemical changes in my body.  Sometime I feel as if I am going crazy with all the emotional lows I have. I should be elated that I am cancer free and able to move on with life as normal. But I do not feel that way. Help.

Can anyone offer me tips on how to cope and any suggestions on a healthy lifestyle (diet/exercise) regimen I can incorporate into my life. Any idea of some the hurdles I might need to prepare myself and my loved ones for??

Thanks

[airforcemomof2]

I'm going to post the same thing I did below...

Run..don't walk to your doctor and insist on Thyrolar!!  I was diagnosed with thyroid cancer in 2000 (was 23) and had a total thyroidectomy and was put on synthroid and was MISERABLE. I finally found a doc to listen and she prescribed Thyrolar which is a combo pill of both t3 and t4 and within 2 weeks I lost 15 lbs, lost the "brain fog", was no longer depressed..the list could go on and on. I have been on it now for 7 years and am a size 6-8, happy, normal and honestly don't even think about my disease. There are 3 different strengths, I am on Thyrolar-2. I know it will make a HUGE difference, it did with me!

Cathy

[dbdnyc]

do you notice a difference in your 'voice'? I'm scared of having surgery on my thyroid if my nodule is malignant as I'm a professional opera singer.  Thanks for any info.

[Rynne]

Hi  airforcemomof2,, I'm  brand new on this site.. I had my thyroid surgically removed also.. I'm 41 and it was done 2 years ago.. For me it has been a  struggle . I like you , was put on Synthroid and still on it.. Have been on the same dose now for over 4 months.. Prior to that, I was all over the map with my T.S.H.  I  found out that I had a microadenoma Pituitary tumor.. yipeeeee.. It was treated with meds and according to the bloodwork is  gone.. Thank GOd.. I however  every day  feel like a different person.. I'm thrilled to be able to breathe and eat again ( I had difficulty with this prior to the surgery-the thyroid was pressing on my wind pipe and esophagus)..  wooo hooo..  It's great to eat and drink and breathe but the  panic attacks and sadness is so unlike me.  I  know it is related to the thyroid  removal and Synthroid.. I also feel breathless from it and jittery..and can feel my pulse racing.. I  am most likely on too much of this stuff.. I have never heard of Thyrolar?? Can you tell me a bit more about it?  I am pretty miserable on Synthroid..   All the best to you.. I can relate to all of this.. thanks : ) Good for you, you are well and happy :) Wish to GOd I could atleast feel like me just a little bit again.. It's been 3 years of horror.

[sophiesudane]

There was no change to my voice.  I had a fabulous surgeon. In fact, I woke up and was able to speak right away. At the moment, I do have trouble speaking for long periods, my voice gets a little tired, but it is getting much better each day as the swealing goes down.

Do not be scared of the surgery. Just do your research and make sure you go to a surgeon who specializes in throat surgeries and especially surgeries for thyroid or throat cancer. Make sure you interview the surgeon and feel 100% comfortable with him or her. During this interview stress the importance of your voice.  The right surgeon will listen and put you at ease.

Best of luck to you. Let me know if you have any further questions.

[margherita]

Dear Sophie, your questions reflects mine. I am also 31 and going through the total thyroidectomy the day after tomorrow. I live in Italy and I have heard of only one drug.
What will happen after the surgery? I have not heard of emotional distress and panic attacks from doctors, but they often tend to be oriented to the physiolocial aspects of being a person rather than to the psycho-emotional ones.
I have had a good job offer and I am going to move to Spain starting my new carrier on the 3rd january.
This will be about one month and a half after the surgery. Now this is the time passed from your intervention, would you feel ok moving to a new state, in a new town with very few acquaintances there? Thanks for sharing your experience.

[ChitChatNine]

When we speak of emotional distress it actually can be coupled with medicine problems too ... believe it or not some of the ups/downs can be attributed to the loss of part of you and being it isn't Cancer is wonderful news to hear but at the same time makes you ? and wonder why me?  Why did I have this whole thing taken out and now find out it isn't Cancer?  These are some thoughts I wanted to add to the great info above.

I'd insist on bloodwork b4 the 3week mark given your symptoms ... I finally leveled out at 88mcgs after 11 mos of ups/downs and combos of strength of Synthroid and my TSH is 1.7 and I feel ok.  I had a partial 1/07 and the other side stopped working which sometimes happens.

WELCOME TO ALL those new names on this thread!!!

Cheryl

[ChitChatNine]

My daughter a few yrs ago had bilateral vocal cord nodules that finally went away .. her voice was more affected than mine!  The first thing they had me do in the OR (not even recovery) was repeat the vowels out loud ..... however, there are a few on the board who have had vocal cord complications to varying degrees .. it is something that can happen and does happen sometimes .. that is one of the *risks* unfortunately.

C~

[serenity_nz]

I had a total thyroidectomy one month ago and for the first two weeks my voice was deep and I could not hit any high notes. I couldn't even scream properly it came out deep but it is now back to normal. My operation went much better than I expected. I was out of hospital in two days and back to work in one week, and my occupation is telephone sales so I use my voice all day.  I am on 100mcg thyroxine a day and am almost due to have my post op check and have my thyroid levels checked. I am very fatigued, have a lot of headaches and aching joints. But it is early days yet and hopefully I will feel better when they get my thyroxine levels right.  I am very impressed with the scar.........by the time it fades and turns white I'm sure it will be hardly noticeable and can easily be covered with a necklace.  I have suffered no pain, only a vague feeling of tightness where my thyroid used to be and my wound was glued together instead of stitches which i thought was so much better.

[Josic]

I had a thyroidectomy 3 weeks ago and I'm still weak in the legs and my head gets tried.  I'm on 100 levoxyl and each day I feel an improvement.  Hormones out of whack are definite causes of anxiety, panic attacks.  Also different medications cause them.  Cytomel, prednisone have been causes of revving me with anxiety and panic attacks.  What I'm on now seems better but it takes awhile.  I go through days of crying and depression also.  I try to put a smile on my face and it sometimes help.  It's so weird when your really feeling down and you just smile how it changes things even just a little.

Well anyway, I have a lot of congestion and mucus in my throat still and when I wake up some wheezing, I was hoping it would go away but I guess I should see my medical dr. about that.  Sometimes we think everything is with the trauma of the thyroid removal but maybe not.  I want my voice back so bad, I need to scream at my boyfriend and I can't.  My Surgeon was shocked my voice was bad, he said when he did the surgery he thought it would come out real clear.  Well I still can't talk well 3 weeks later.  

Oh well good luck and hope you feel better.  Josi

[sophiesudane]

I want to thank you all for your support and encouragement.  I have now passed the 6 week point since the surgery and am feeling much better. I just had my levels tested and they were a bit on the high side. I was on .150mg of levoxyl.

My levels were:
Free T4: 1.97
TSH - 3rd Generation: .03

We're dropping my dosage to .137 mg.

My energry had been great, but I am struggling with anxiety and sleeplessness. But now I know that has to do with the fact that I my levels are now on the hyper side.  I think this slight adjustment should do the trick.

As for the scar, it is healing nicely, though there is some pain from time to time as the nerves are healing.  It is also can be very itchy!  But again that is the body healing.

Best wishes to all you.

[sophiesudane]

I hope your surgery goes well and you recover quickly.

At 6 weeks after the surgery, I think i would feel ok moving to a new place, as long as I felt I could find a god endocrinologist there. But then I am have a very adventurist nature.  Just listen to yourself and lean on your family and friends. I was amazed at how supportive everyone was.  I am so lucky to be surrounded by such lovely people.

Take care of yourself and keep me posted on how it all goes. :)

[DCOWAN]

I just had a total thyroidectomy 2 weeks ago.  They did find cancer, but i'm in early stage one for papillary and was all removed with surgery and did not spread anywhere.  YEAHH!! still waiting to go through the radioactive treatment in a few weeks so I'm currently going through the hypothyroidism state to get my body ready.  But I've been very lucky, i was home early the next day and working out (although at beginner levels) within 3 days doing light walking/biking and yoga.  I had a great surgeon!

Of course i'm afraid of all of the side effects i'll be experiencing now, but i've been very proactive with my workouts - now back to my spin classes and taking daily doses of vitamins and lots of water!!

the main thing I find myself struggling with is the restless sleep, that I need to focus on.

to those experiencing weight gain, anxiety, etc... you need to pamper your body right now.  give it plenty of water, eats lots of fruit and veggies - you need a clean/healthy diet and if you can, start exercising.  Pop a b-12, multi, calcium supplement everyday.  I started adding/eating more fiber just to help with digestion.  I found a great vitamin for hair/skin and nails.  All of these tings are natural ways to help your body bounce back and prepare it for the life we're now living without the thyroid.

i wish you all well!

[stella5349]

I am a little rushed this am but could not post someting to your intrest in Thyrolar.  Briefly both Thryolar and Armour Thryroid are natural Thyroid hormones. Some swear of it results and some do not. Synthyroid is synthetic not natural. Synthroid is a T4 therapy no eventually convert T3 into your body to balance you out. Thyrolar and Armour have the T1/T2 T3 - T4 and stabilizes the system I found quicker.

I could not convert T4 into T3 properly - so Synthroid no matter how much did not regulate me. Armour has helped and I am an advocate of it.

Please let me apologize for my shortness. I really must go. If you want additional info and more conversation on this IM me and I will go into this further.

[Josic]

Well I've been on synthroid for a couple months now and still not regulated.  Had my TT on Oct. 23rd but have had other problems with paralyzed vocal chord.  My TSH keeps going down and now at 0.01 so ENT dropped dosage again to 75mcg.  T4free is at 1.8.  I have always been very sensitive to medications so I am also to this.  It's all such a waiting game.  I never had patience but this certain makes you have it.  I'm still feeling down and it's been over 3 months.  Now I also have extreme arthritis in my feet when it was only bothersome once in awhile in one of my feet.  Now I have extreme acid reflux when it was only bothersome before surgery.  This surgery seems to stir things that weren't so bothersome up in my eyes.  

You always hear the Drs. say the thyroid surgery couldn't do this and the thyroid surgery couldn't do that well bull to that because I didn't have these problems before hand.  

I guess I'm just not right with these levels yet and it's depressing.  I haven't gained weight though I've lost.  But my levels have been to much as of yet.  Though at first I wasn't getting enough now I'm getting to much and only on 100mcg.  Well now down to 75mcg and see how that goes.  

Good luck on  your surgery but don't look for any short fire cures because it's all a waiting game unless your really lucky.  

Anyway not to get you down about this because I've had alot of other things going on with my vocal chord and acid reflux coughing choking and all that stuff.  It's getting better little by little but it's a slow long process for me I see.  

Josi

[Metrogrl]

Im new to this blog...I am 24 and had half my thyroid removed when I was 17 due to a Nodule that was >1cm. The needle biopsey came back inconclusive but when they removed it the results came back negative for cancer. It's now 7 years later and I have a lump on the remaining half. I have been able to live with out medication so far and even with the lump my thyroid is fully funtioning. I still have the symptoms of the hypothyriodism though, fatigue, moodiness, ect...but was able to balance it. However now there's a chance that the rest may need to be removed. My biggest concern is keeping wieght off. I am very active and eat very healthy but still need to keep an eye on my wieght to stay in the heathly range. I am also concerned with the fatigue getting worse. As I said i am very active, working a fulltime job, and training at the gym on my own, studying a martial art capoeira and attending 2 personal training sessions a week. I will say though that reading through previous posts has put my mind at ease a little. Well I guess i just needed to share my story. Thank you for reading.

[jRose4824]

I saw your Q and I thought I could be of help. I had a TT in Sept. of '07 and at first I noticed a difference in my voice. I couldn't speak loudly and the range in my voice was limited. However, after about a month or 2 my voice was back to normal. I know you're an opera singer and we wouldn't want that powerful voice to be ruined but health comes first. Thyroid disease is a serious matter. I also recommend getting a few opinions from doctors. Hope this was helpful!

[mrside612]

HI, my name is Joy. I read your posts and am about to have thyroid surgery. I had a FNA dec 19th 2008 and they found "atypia" I have had one nodule on right side for 7yrs and been watching it all along. in oct nodule began to grow  (now almost 3cm)and new finding on left side(very small) I have family history of thyroid cancer so docs are pushing me to at least have the larger side removed and more tests.I have tried almost all known thyroid meds(never heard of "thyrolar")in 7 yrs I haven't tolerated any of the meds,they cause rapid heart rates(over 140bpm) and very upset stomach always on the verge of throwing up.I have tried Armour and could only tolerate that for about 7 days. I have hypothyroidism and all those symptoms have had a feild day on my system without meds.I am scared I will be worse off if I have the surgery than I am now.I hear swallowing is a big issue after surgery too. any info you could give me would be wonderful. thanks

[authrjenn]

My experience has been 'Hyper" for the racing heart even though the docs said raise the medication. I lowered it until all symptoms disappeared. Once IO started my meds again I went slowly.After surgery, swallowing was probmatic for the first week, due to swelling, and the trachea tube they used during the surgery. Gentle hands do help! LOL Try and remember to gargle with salt water (warm) before and after the surgery. It helps Talking is ok until your voice is tired, then it sounds strained.It will wear off after 2-3 weeks. Don't worry. You will be fine.......

[biany]

Hi, I am 32 years old and I had my thyroid gland removed totally about 3 mo. ago. It wasn't cancer just a lot of nodules, one very large, etc. I was put on synthroid , at first 100mcg and after a mo. 125mcg (my current dosage). I have been feeling miserable and super tired and sluggish most of the time, I am due for another blood test soon. My question is does anybody know what other kind of test I should as my PCP for, other than the ordinary THS test? I want to make sure that they make sure my body can convert the T4 hormone into T3 and from what i know the T3 hormon level can only be  really tested at cells level. It's all new to me and I don't know much about this whole thing, only that I have not been myslef since the surgery. I know it takes time to adjust but if there is anything else I can do to improve my every day life, please let me know: foods that are good , foods that are bad, minerals, etc., exercise.
I've heard about the natural supplements like : Armour or Westhroid and Nuthroid but I don't know how wise it is to take them.
I need to do something because I am like a zombie most days, but the wierd part is that even thou most of my symptoms indicate I need a dosage increase, I have started to loose weight, inspite of the generall feeling of "slowness" that i experience. Please, any info would be greatly appreciated.

[Totie]

I am currently taking 125mcg of Levothyroid. I had my entire thyroid (hyperthyroidism) removed back in 94; for 13 years i was taking 200mcg of Synthroid. My doctor put me on Levothyroid and changed my dosage about a year ago. Never told me why, just did. I never became sick from taking Synthyroid. It did take about a year to finally figure out my dosage after my surgery. Right now i am having issues, but that is a story in itself.

It will take awhile to get you to your correct dosage.

[Totie]

I am currently taking 125mcg of Levothyroid. I had my entire thyroid (hyperthyroidism) removed back in 94; for 13 years i was taking 200mcg of Synthroid. My doctor put me on Levothyroid and changed my dosage about a year ago. Never told me why, just did. I never became sick from taking Synthyroid. It did take about a year to finally figure out my dosage after my surgery. Right now i am having issues, but that is a story in itself.

It will take awhile to get you to your correct dosage.

[Totie]

I am currently taking 125mcg of Levothyroid. I had my entire thyroid (hyperthyroidism) removed back in 94; for 13 years i was taking 200mcg of Synthroid. My doctor put me on Levothyroid and changed my dosage about a year ago. Never told me why, just did. I never became sick from taking Synthyroid. It did take about a year to finally figure out my dosage after my surgery. Right now i am having issues, but that is a story in itself.

It will take awhile to get you to your correct dosage.

[Rick7656]

Had total thyroidectomy on 1/8/08. Was able to talk without voice troubles right after surgery. 1.6cm nodule on my thyroid. Had papillary thyroid cancer but was still encapsulated. Had my last body scan after a RAI pill treatment of 60mcg and I am cancer free/thyroid cell free. Like everyone else I'm sure, I was feeling horrible while on that low iodine diet. I have been on 150mg of Synthroid since 2/10. Feeling so much better (not sleeping 15 hours a day...back to a normal sleep schedule for the most part) but I think my dosage of the Synthroid needs to go up a little because I have a really irritating dry skin problem on my face (in patches, not all over yet) and my arms and legs. I see my Endocrinologist in 2 weeks for a followup and to check TSH. I still get tired sometimes (nothing like before the Synthroid, after surgery) but not sure if that's part of the Synthroid increase that I think I need or just being lazy for so long without exercise (doctor told me to take it easy until 4 weeks after I took Synthroid). I am anxious to start my old exercise/B-ball activity but afraid I might fall asleep at work until I see the doctor and ask him about the Synthroid increase.

Anyone with thoughts/experiences with dry skin and increase in Thyroid meds, please chime in. Thank you.

Thanks for reading. Rick

[llb4522]

I can't believe I found this site.  2 and half years ago I looked frantically for information about living with out a thyroid.  I had Hashimotos(sp) and 7 nodules that were growing, after needle asperation it was determined that they were suspicious.  I was reluctant to have my thyroid removed even though I had lived through years of hell with it disfunctioning.  I was so afraid of cancer and went forward with the surgery.  There was this nawing feeling however, that where I was headed was far worse. I chalked that up to "Anxiety"... the nasty left over of a disfunctioning thyroid.  But,  my hunch was right on.  With cancer you either die or live,  with no thyroid you exist.  With cancer, you do treatment and die or live, with no thyroid you dance the rest of your life trying to find a life inside the levels of a drug you will take the rest of your life or die.  No one told me the truth. So here I am.  Every day I take handfuls of pills, hormones, Armor, vitamins, D, calcium to counter my TSH levels.  I do pretty well until I look in the mirror and think about what to eat and when around the pills,  live for the bed and the dream of sleep.  My face is like my mothers after a couple of years at college. Shockingly older because I had missed the everyday view of her aging.  Only I see that daily in the mirror.  I want to know,  will the merry-go-round ever stop?  Can we ever get off? I want my life back, the one before Hashimotos, before surgery. Maybe I just want peace inside my skin.  Quiet. Help llb    

[bluedogmoos]

If you have had your thyroid removed for any reason you must take meds for the rest of your life. It is important that you do this. You can not just take your meds when you want to or if you have the money to buy them. You must take them as directed always.

[sophiesudane]

I understand the desire for peace inside your skin. Before the TT I spent years struggling with the huge emotional up swings, then down swings; the frustration of feeling tired, then feeling as though I cannot sit still or sleep; the changes to the skin and the body... at time sit was unbearable.

After the surgery, I figured the world would be right because I finally had the troublesome gland removed (I had Hashimoto as well).  But the swings were still there.  So I finally decided to spend some time experimenting to see if I could come to grip with the fact that I will have these swings for the rest of my life.  That perhaps instead of fighting them, I needed a new way to look at them.  I decided that perhaps I needed to look at them as a wave I must ride out.  So I went in search of solution to help manage myself and my sanity as I ride out the wave.  I went to a Therapist, I took up meditation, I started journaling, and I saw an acupressure person… I will be trying acupuncture next.  

Out of all these experiments I began to see on big pattern emerge, I started to be more kind to myself.  By doing things to take care of myself, I learned to not be so hard or to fight what was going on. When the swings come, for they will always come, I have learned to look at them as an observer of a wave.  

At first the wave feels like a tidal wave rushing over me and I am struggling to stay afloat.  At the peak of the wave, I begin to feel as though I am going to give up, that I can no longer tread water.  To get through the peak I start to journal ever day and meditate as often as I am able. I take long bathes, paint my toes, anything to pamper and care for myself.  Btw… when I journal… I focus on writing about what I am feeling, but ending the journal session with words of kindness and support to myself no matter how silly it can feel at time.  I have even carried similar notes of support in my purse for those particularly dark times.  Anyhow, with time the wave eventually dies away and the water recedes.  I soon find myself with my feet planted firmly on solid ground.  

I am not saying that my methods will work for everyone, but I think the overall tone may help… take care of yourself, be kind to yourself, especially in your most anxious or saddened state.  Remind yourself of all the wonderful and good things that encompass who you are.  I believe, with all my heart, that if you do these simple, yet very hard tasks, then you might be able to become more of an observer of yourself and of your swings (waves).  Perhaps you can one day say… Here comes the wave… I must hold on tight and ride this one out.  I must remember that there is always a wave, with the instant rush, the huge peak, but then the glorious recession where I will once again find my feet planted firmly on solid ground.

[quincytoo]

Wow what a great day to find this thread. I had my TT on Feb 19th 2008. Low Caluim levels kept me in the hospital a few more days. I made the mistake of returning to work too soon and have suffered for it ever since.

My throat still feels so very tight where the thyroid used to be and today I feel like it is really tight to the effect that I am having problems breathing. I went and had my blood tested to see if I am still low calcuimic, some weeks are better then others.

The dry skin is starting to get better slower but surely, I discovered Body Shop Almond body scrub and OMG  it is my new best friend along with Almond butter cream!!

My surgeon has me on 100 mcg of Synthroid as well as 200o mgs of calcuim and 50 mgs of robintal. I have been trying to caught back on the calcuim to see if my parathyroid have kicked in, somedays are better...

Can't believe the extreme range of emotions that occur. My sister had her TT (lots of thyroid cancer in my family) 20 years ago and warned me but I had no idea it would be like this!!!

She also is advising me to get my levels of Synthroid up to 175 (where she and my two brothers are) but also to look into another Thyroid drug??  Good thing we have had the same family docter for years and knows us well.

I am getting my TSH?? levels tested next Tuesday. I am bookmarking this thread what a great support :) Thank you all

[boblag]

I had my whole thyroid removed in 1/06 and my voice has never returned to the way it was. I lost about an octave off the upper range. I've been a musician for most of my life and used to love to sing and play guitar, but I don't really do it much anymore because I can't hit the notes. It's been the most difficult part of this whole experience, and has left me quite sad at times.

[Devrie21]

I too would like my life back as before.  I was diagnosed with Thyroid Cancer back in 1991.  I use to be so hyper and full of energy.  I was a runner and volunteer for anything and everything.  Now I'm always tired and sleepy.  Mood swings come and go.  My enegry is in the mornings, come mid day, I'm sluggish.  My Dr. says my hormones are leveled, but I sure don't feel it.  

I'm new to this sight, and it has brought me hope once more.  Reading the entries let's me know I'm not alone.  I've read so many good advices, I was reading from one of the entries about the medicine "Thyrolar".  I'm on Synthroid, and have been for 17 yrs.  I've been on the same dose for over 10 yrs.  In two weeks I have an appt with an Endocrinologist.  I will ask her about this drug.  I understand everyone who has recently gone thru this or are getting ready to go thru it.  It can be scary.  But you can live a normal live.  It may not be the life you had before, but you are living and can do close to every thing you use to.  In my case, I don't have the energy to run, but I walk.  Sure, I have to be more careful what I eat, even though I'm no where near the thin person I use to be.  But I'm still trying.  Thanks!

[minbumthy]

I recently went for my yearly where my gyno noticed i have a enlarged thyroid.  I went to a endorinoligist, I found out there that i have 4 cysts.  We have biopsied one and found a-typical or suspicious cells...the doctor has suggested i have my thyroid removed...I dont know what to think...I will see my doctor again for a cosultation and to schedule more biopsies...Iam so scared hearing the horror stories about tyroid removal...Iam only 24 and feel like this may be the end of any contentment or happiness...ALSO,  i just recently had a baby, I want to have more children and feel like my time is limited...CAN you have children after you have your Thyroid removed?  

[aln]

I had my thyroid removed in Oct. and it seems to me that the dr.s don't really want to help you. My Dr. put me on synthroid the day after surgery and wanted to keep me on that same dosage. I felt like **** for months and complained until he changed from 100mcg to 112. My entire thyroid is gone. I don't feel like 112 is enough but the dr. said my levels are normal and that's it. I dont know what to do....you'd think he was the one taking the meds. In the area I live there are not any good endocrinologists, so I see my surgeon. It's just frustrating.
I was wondering though, what would happen if you couldn't take your meds....I read somewhere that you will go into a coma and eventually die. I was just wondering if that's true. It would be great if the drs would tell you this stuff.

[llb4522]

I think a lot about what I'd be doing if I had taken another route. Not had my thyroid removed, cleared my system and taken a natural route.  I think about how I frantically searched the internet for a site like this one, where people were talking and sharing their stories, ideas and experiences.  Get a second opinion, on whether or not to remove your thyroid,  what does suspicious mean?  What does normal mean? What can effect the thyroid and nodular growths?  What are your other options.  I didn't get those answers I believed what the doctor said.  I had a radical proceedure, and I'm still wondering what that means.  It will effect your hearts health, it will change your bone development, it will effect your hormone balance and may put you in early menopause.  You can get doctors to tell you that after the fact.  But, you need to ask a lot of questions in more than one place before you have your thyroid removed.  What is your life like now?  What do you want it to become.  Be sure that you have what it takes to take a drug for the rest of your life, and more as your body changes as the result of this surgery.  All noduels, cysts, goiters are not created equal.  Take time and research hard before you decide what to do

[Devrie21]

If you don't take your medicine, everything that it controls will eventually stop working, including your heart, it can be fatal.  Years back when I was still searching for a DR. who can really help after having my thyroid removed, I found one who left me off my med too long.  I was going on 2 months without it, let me tell you, I swell up like a Blow fish, for every 4 steps I climbed (my job didn't have elevators and I worked on the 2nd floor),I had to take a break.  My knees tremble, the only time I was awake was when I was at work. My voice started getting deeper, it was hard for them to find a pulse.  There were so many other issues.  When he finally put me back on my meds, in one week, I was back to teh way I was before getting off them.  I will NEVER be of my meds.  I know what can happen.  Of course I dropped that Dr.  I agree with everyone who advice to get a second opinion,  even if finding a DR to level it after it has been removed.

[llb4522]

I was thinking tonight, maybe it's not that those of us who have had our thyroids removed are worse off than before,  maybe we were under the illusion that things would be better, maybe perfect.  Something we had longed for during the years our thyroids were dysfunctioning.  Were probably better off,  maybe we're not satisfied with a 50% improvement.  Maybe we wish for the impossible 100% that few people really every have.  I don't know.  It's the glass half empty or full theory that drives the way we experience this thing. Yes, it's complicated.  But one thing I am realizing as I read this is  it is our reality.  Most of you are handling it, moving forward, talking,reaching out and trying to find the best solution.  Maybe,  we're better off than all the people who don't know what a sunrise on a hopeful day feels like,  what the joy of sleep is even if it's only 4 hours,  What taking a deep breath and walking means.  Maybe the things we fight for, hope for and find little windows of joy in make us grateful and ultimately more alive than we could ever have been inside perfect bodies.
Just a thought tonight. Thanks Sophiesudane.

[graciewalter]

I had a TT a week ago tomorrow.  Came home from the hospital after two nights stay.  I had multiple nodes on both sides as well as an enlarged isthmus.  My thyroid was the size of two men's fists (side by side).  I have come home on thyroid hormone, calcium and Vit D.  I am starting to  get some energy back, but the steristrips are covering the incision and it itches.  My biggest problem so far is diarrhea.  I'm not sure if its from the Calcium or the hormone.  Has anyone had this same problem, and if so, what did you do for it.  I was diagnosed with Hashimotos thyroiditis. No cancer.  Thankyou!!

[mrside612]

I had my thyroid out April 14th 2008 and I guess it was a blessing in disguise,my large tumor was benign BUT the right lobe had hidden cancer that was not being decected, thank God the lymph node was clean,but had I waited my life would have been cut short, so for all the changes the surgery brought I guess anything is better then death. I am still so very tired and unable to get regulated yet, but my body has been thru a hard battle and I am winning.
To Graciewalter, I had diarrhea too after surgery its the anesthesia, it takes about 2wks for this to get out of your system( It did for me).
drink lots of fluids to keep up with the diarrhea.

[clarkings]

I had my thyroid taken out on 7/7/08  and today makes it 9 days after my surgery. I had a very large nodule on my thyroid and they suspected cancer. Thank God I've  found out its not cancer.  I spent 2 nites in the hopsital and was sent home on antibiotics and calcium meds. today calcium level is  back to normal. today  I was given  Levothyroid 178mg, I am keeping my fingers cross and see how it takes it effect. Right now my only problem is sleeping at nite, my neck is always tight and itchy, I teold my self its healing..
In a few weeks I will let everyone know  how i am doing

I wish everyone well and great success on you life journey

[mama_mads]

I am 46. I had a TT in October 2007 then more surgery a month later, the surgeon had left some of the thyroid floating in the wound.  When I look back I was very sick pre surgery.  My recovery has been great.  I do still need lots of sleep, and some days find it very difficult to get myself out of a titchy mood.  I am pretty sure I need to go and get my levels tested as these titchy moods, tiredness/fatigue and DRY SKIN are starting to drive me a bit crazy.  Although I still struggle with these issues, I am definitely far better than before surgery.  I had hypothyroidism, a very large goitre and suspected Graves Disease.

[fiddlestyx]

i had been looking for a group like this for the longest time. I am 17 years old and living without a thryoid since december 2007. it was so difficult to go back to school with less energy and crazy mood swings. i had to leave school because my english teacher asked me if i had a good lunch, and i burst into tears for no reason. i am the president of the student council and a commited musician, and days like today are some of the hardest. i had to work at the school for 8 hours, running around with a people-friendly smile on my face. i come home and my family suffers because i have no energy or tolerance left. any violinists out there who have this surgery: it took me 3 months to where i could play it comfortably, although i still accidentally hit my scar when i get to fun, fast parts. the biggest concern was to find a chin rest that fits. change that first, then the shoulder rest. also, i was wondering, does anyone have more info about the mood swings? and i was never given any information about a diet plan that could improve the way i handled this. any information at all would be helpful.

[cakeman]

My friend just found this forum for me knowing the tough decision I have to soon make. I have 3 nodules, after a biopsy last week, they suspect the right side may be cancerous. The 2 on the left have grown even in just the 6 months since my last ultrasound. My endo is on the fence whether I should remove the whole thing or leave half. She said leaving half will put me in a state of constant monitoring of the 2 remaining nodules and potential follow up surgery to remove them down the road. Aside from the decision to leave half or take it all out, my biggest concern is her steadfast belief in "the" numbers. My 'numbers' come back within normal range yet I have almost all of the symptoms of hypothyroidism. I am worried when she puts me on Synthroid, she is going to regulate me to the right 'numbers' and disregard my symptoms. She right now insisits "my numbers are fine". I have been studying and have a friend who is a physician and it turns out that the numbers are NOT always right. That you can in fact be hypo or hyper even with your numbers in the normal limit. I'm frustrated with her insistance that the numbers will tell all. Especially when I have heard of the horrible side effects of the meds. I believe that she will not adjust my meds to make me feel better, only to put the numbers where she wants them.

Any insight would be greatly appreciated!!!! My husband and I feel  very unguided as to what to do with the surgery. We are leaning toward a TT because we do not want to risk any return of cancer. It's a very big decision.

[cakeman]

And I meant to add, she was obviously against the use of Armour and rattled off a list of reasons why. I have spoken to 2 separate ND's and they strongly suggest using Armour and leaving some thyroid in. I have 2 seperate philosophies and am very unsure who to follow. They both have great points.

[AR-10]

This is my opinion, and I want you to know I have not had surgery.

I would have the whole thing removed and be done with it.

I would also find a doctor that knows more about thyroid numbers than just lab ranges. "Within lab limits" has nothing to do with optimal levels.

As for which medication to try after your operation, there is a lot of debate over that. I urge you to research that and decide what you would like to try first.

Best of luck, and welcome to the forum.

[cakeman]

thank you so much for you advice!!! I am at the point where I feel pretty confident that I should remove the whole thing. That said, I am now searching the internet for a doctor. I have emailed a half a dozen primary care physicians, internalist and endo asking them if they are willing to treat a patient based on symptoms not just the numbers. I'm feeling a little lost on how to find someone who will do that. Other than what I am already doing, just flipping around and who ever has an email contact, I am sending them an email.

any ideas on how to narrow down a doc?!!? ;o)   From what I 'hear' I don't necessarily need an endo once my thyroid is gone, even a primary can prescribe my meds?? I don't have a primary right now, my OB/GYN used to be a pcp but is no longer. So I am hoping maybe I can find someone who can be my general care giver and actually will work with me to find the best dosing!!!

thanks so much for your help!!!!

jenn

[AR-10]

I have an excellent PCP that has helped me through the process of finding several Endos, and he understands my condition and how to treat it better than some of the Endos I have seen.

With any luck, I will soon be seeing my Endo once a year and my PCP can take care of my hormone levels. He actually understands test results and listens to me.

Finding a GOOD doctor of any persuasion is a process of seeing bad ones and shopping around. I've never done this personally, but I wonder what would happen if you walked up to the front desk and asked the receptionist what doctor THEY would go to. LOL!!!

My PCP came recommended to me by a friend who runs the ER.

I called a friend in the big city who is head of anestheseology at a big hospital and asked him to ask around for a GOOD Endo for me. He called me back the next day with a name and an appointment. I didn't see him, but that's another tragic tale...

Ask around. Start a thread. Introduce yourself and give us all the juicy details. Maybe somebody lives within a couple hundred miles of you and can rattle off a name in your area.

  

[cakeman]

Well so far so good!! I spent one night searching the internet for physicians in my area. I sent out about 6 emails to the receptionists explaining what I was looking for in a pcp at this time. Someone who will actually listen to ME and not just my blood work. I got 3 solid replies!! I have 2 appointments scheduled for next week already. Both said they told a specific doctor in the practice exactly what I said and they said they'd be happy to take me on as a new patient. So I am very very hopeful!! I feel at least they 'know' where I'm coming from and what I'm hoping for.  I have one other offer but the doctor is in Annapolis which is a good hour from me right now. I emailed there just in case I didn't get any other responses. But these 2 doctors are only 5 minutes from my office so they are extremely convenient!!

Thank you so much for the support! It is really hard to do all this leg work but I am hoping it will be worth it!!!!!!

[KSW72]

I came upon this site accidentally (?) while looking for weight loss recommendations for those who had thyroid issues...and it has been incredibly cathartic for me. To share a bit about my story:

I had a TT four years ago (May 2008) at 32 yo, both sides were cancerous and had radioactive iodine treatment a few weeks after surgery.  Was put on 112 mcg sythroid for two years, then 100 mcg (my current dosage).  Also trying to get pregnant now with fertility treatments, no success yet.

I took a six-month leave from work during my surgery because I wanted to recover properly and have time for myself.  I know I was lucky to be able to do that, and am glad that I did since I had been feeling so miserable for so long prior to my diagnosis.  I absolutely did not feel like myself and sometimes still do not.  I used to be energetic, active/athletic, generally cheery, and thin!  I am still some of these things (with a bit more padding), but often feel a part of myself missing (figuratively as well as literally).

All I wanted to do after the treatment was run as far as possible from anything that would remind me about my thyroid problems.  As you can imagine, you can only go so far.  I experience(d) many of the symptoms shared already - moodiness, anxiety, panic at times, fatigue, fogginess, weight gain, general sadness and discontent, and feelings of "why me?, what has befallen me?"

However, I have found that I can manage my life and myself well when I focus on the good things that are around me AND when I accept my changing lifestyle and expectations (mostly of myself).  I still struggle and often do not feel "on the ball" and feel emotionally off.  Journaling, yoga, meditation, a good diet, walking, massages, and having friends help me greatly.  This site was a good reminder to me and my husband that we are not alone in what can be a natural outcome of thyroidism and thyroidectomies.  But, it is important to keep sharing and trying to stay positive, and asking those closest to you to be patient, tolerant and involved.

That said, I am curious to know if any of you have diet/weight loss recommendations and have been successful in having children once going through surgery and treatment.

Thank you!

[gimel]

This outpouring of thyroid problems/concerns is just amazing to me.  I found myself wanting to respond to each post, but not enough time for that.  Instead, just let me try to provide some useful information I have found during my own journey from hypothyroid to a state of no more symptoms.  For general info, I recommend this site.
http://www.stopthethyroidmadness.com/
Please take the time to read about body temperature.  It is a category on the left margin.
This site provides a listing of top thyroid doctors, by state and by city.  
http://www.thyroid-info.com/topdrs/

[cricksand]

I had most of my thyroid removed in 01/00, I was 35. I had been treated like 18 months for nodules that were not cancerous. The one on my right side grew to be the size of a lemon and there were 4 small on my left. Which is why the surgeon took most of the left. I have been miserable. I am still tired, weak, hot flashes, and see blurry. I have used synthroid, levoxyl, Armour, and generic Armour. I have developed sensitivity to wheat and most other grains. I can't hardly stand to look at myself, I have gained 70 lbs. The doctors have put me on several anti anxiety meds and anti depressants, but I can not take them. It is very hard to consider the rest of my life like this, since the last 8 have been hell. I am so tired of being tired. Please let me know if any one has any suggestions. All I can do is go to work and come home and lay around. And pray that one day I find the answer.

Thanks

[Kbryant1965]

I had a half of my thyroid taken out in 2006 and a week ago had the remaining half taken out.  There were nodules on both sides that were growing and turn out not to be cancerous.  I was wondering if anyone has had a positive experience with their thyroidectomy?  After the first surgery I didn't have much trouble with the healing of the scar and my voice didn't change and didn't notice being anxious or tired in the last two years...I was never taking meds though.  Now I've started (yesterday) to take 100 mcg of Synthroid and I'm nervous because I don't see much good news in these postings.  Just wondering if everyone is having trouble and side effects?

[JLWH]

Hi All:

I'm reading through this thread with both a great deal of empathy and a tremendous amount of fear.  

I am going to have to go through thyroid surgery shortly and seeing all of your experiences, hearing the pain and sometimes despair that a lot of you are facing, it's both breaking my heart in wanting to give you all huge hugs while, at the same time, wanting to go throw myself in a lake lest I also suffer the same way that a lot of you guys are suffering.  

I hear the "keep a positive outlook" but, at the same time, also hear the "I'm still very much struggling just to get through from day to day" in your posts.

Are there "good stories"?  Stories where people actually do get their levels adjusted and go on to feel great and live good quality lives?

I am trying so hard to be as optimistic as I can since I don't know whether or not I am going to find that I am also dealing with Thyca or not and what I will have to deal with down the road, including the potential RAI.  It's hard to want to go through any or all of this when life seems so rough for many of you afterwards.  

Is there hope of a good quality life after thyroid surgery?  I'm already battling hypo symptoms now and it's not pleasant.  I was hoping that things would improve but, it seems that it may get worse.  

[JLWH]

I hear what you are saying because I have the same feelings, as I've posted above.  

I think both of us need some "good news"! :)

[featherduster]

I had TT surgery on the 26th of September. Haven't had my first appointment yet.  I feel great.  I felt horrible before the surgery. Sleeping while talking to someone was my specialty. Snoring while watching tv was a good one too.  My nodules were huge. My symptoms were many. Last night the doc called to let me know that they found a very small 1mm amount of Cancer in the pathology report. Said I wouldn't have to have treatment.  I know this is early in the plan, and I know that I may have some troubled times ahead. But I want everyone on here to know that there is a God who loves us and He would do anything for us if only we trust in HIM. Keep focused on HIM.  Let HIM do the rest.  Don't concentrate on the problem. Concentrate on the Healer.

[Soft52]

I had TT surgery on 24th September. I could no real voice to speak of before the surgery; the Dr told me the thyroid was not causing my hoarseness. I had a 1.8 cm nodule which was aspiration which showed follicular nodules which they could not tell me if it was carcinoma or not. I had the TT done and the 1.8 CM nodule came back as none carcinoma and I got my full vice back right after surgery. Which proves the Dr did not know what he was talking about with my voice? Six weeks of treatment for asthma and acid reflux med did not help. I tent back yesterday to get me pathology report back and the other shoe hit. They found 1.5 MM papillary carcinoma. I am waiting for an appointment with another Dr to talk about treatment. When I had the TT done they did not remove my parathyroid glands they are working wonderful. I do not know if they will have to go back and rove them or not. I am running the whole scale of emotions right now. I mean I am lucky they found it so early what are the odds I had two types of nodule in one thyroid and the bigger one is not cancer and a little 1.5MM is found to be cancer. I know the odds of betting this is in my favor and I should be grateful to God they found it now and I can get it taken care of. I started back to work yesterday and after the news yesterday everyone was upset and I was the one who had to be the strong one in front of everyone making them understand I am going to be fine, but when no one is looking I want to cry want to be that little girl in my mother's arms again safe from the world again.
I know things are going to get hard for a little while because I cannot take any thyroid meds until after the treatment and I have heard without your thyroid meds things can feel like they are going downhill fast. I know I am lucky and loved but I feel so alone right now. I do not know what is going to happen next. I have read everything on the internet I can but it just scares me more knowing I am not on the thyroid meds and do not know when I will get on them. How much weight I am going to gain, will I be able to keep working or will I feel so bad I will not want to work. I just want to be my hyper self again doing 4 things at one time and loving it again.

[Soft52]

Ok Yesterday I vented and it help me feel better, so today I wanted to answer a question that was asked are there any good stories out here. The answer is very much yes. I was lucky in the hospital the nurse that was taking care of me had a TT when she was 16. I would guess by looking at here is wa about 10 years ago and she is very happy and living a good life. She kept trying the thyroid meds until she found the right fit for her. She said it took about 6 months and she has been fine ever since.

Anoth story a friend of my mothers had the surgery 20 years ago when she was in her 50's she had cancer she is very happy and out going at her age that is a wonder in itself not all older people keep active but she and her husban travel and are happy.

So the answer is yes there are happy endings it just takes time and if you are happy and living without problems then you are not on the internet looking for other people to talk to fine the answer to the problem. For most people that is.

[gifillan]

In my 30's I had thyroiditis. I was put on prednisone for two months.I had no problems after that.After 4 children and twenty years,exercising daily and maintaining a dress size os size 6,I started to gain weight, suffer from depression and anxiety attacksand extremely aching joints and feet. I noticed my neck looked fat but thout it was just the weight gain. A year later I noticed it wasn"t just a fat neck. After tests and biopsy I had  a TT.Last Sept 07.Although I had all the symptoms my thyroid levels were normal.Someone explain that one to me. It has been a year since my surgery.I tried thyroid compounding meds.It just about killed me.I'm back on synthroid.Still heavy ;size 12. I still don"t sleep well at night even after taking a sleeping pill;and some nights just as I'm falling asleep I'll have an adrenal rush so bad that I feel like I'm having a heart attack. My blood levels are fine. I am starting to get the aching joints back again. It makes me wonder if the synthroid does everything It is suppose to do.Please please is ther anyone out ther that is still suffering as much as I am and is ther anything you have done to ease some of or all of these symtoms (symptoms).I'm 52 years old now,but feel like I'm 80.Oh and by the way:after the compounding thyroid meds my Dr. will not let me go on anything but synthroid.I would also be too scared to ask her because I went on the compouding on my own accord.without her blessing and that turned to be a bad choice on my behalf.Please help!!!

[Thypatient]

Perhaps just a change in brands might help.  I take the other brand Levoxyl (due to my insurance) and it seems to an okay med.  I don't want to sound like an advertisement but just wanted to throw out a suggestion to you.

Good luck.

[hazelhurst]

Just wanted to add another "good story" to the collection. I had a TT in 2006 for multinodular goiter.  Turned out benign, but I did spend a week in the hospital until my calcium levels were high enough. (I went into full tetany because my parathyroids stopped functioning the day after surgery).  After that, I was sent home on huge doses of calcium and other meds, and the doctor said if my parathyroids didn't kick in after 6 months, they were probably "dead," even though only one parathyroid was touched during the surgery. With all the calcium issues, I didn't stress much about thyroid levels, and I was lucky because I've never had an issue with that. I went from .125 to .150 mcg of levoxyl in order to maintain my TSH at pre-surgery level, but I don't feel tired or suffer any symptoms. In fact, I feel healthier than before because I've started exercising more often and eating healthier foods.  The best part of this story is that after 18 months, under doctor supervision, I slowly weaned off most of the calcium supplments, and my parathyroids have starting working again!  As for weight loss, I exercised for years and was very fit but wasn't losing any weight.  Then I tried keeping track online for one week of all the foods I ate every day, and was amazed to see how many extra calories I was consuming.  As soon as I started paying attention to the calories in a logical way, I started losing weight.  The free online programs provide a lot of guidance about what types of food provide protein, carbs, etc., and how much one should consume to reach the target weight.  

[Thypatient]

That's a great story!  Thanks for sharing it.

Continued health to you.

[prlgibson]

I am so glad that I found this site.  Today November 6, 2008, I just found out that I needed a biopsy done on my Thyroid.  I'm scared right now.  I'm going to continue reading all of the post for advice, hope, and encouragment.  I just want to say thank you for all of your postings.

[Thypatient]

Thank you for sharing.  It is indeed scary to be confronted with these issues.  Please take comfort in knowing that we are here to extend support to you.  In addition to contributing to a thread, always feel free to post a new one by ulitizing the green 'Post a Question' button above.

Sincere wishes for the best to you.

[prlgibson]

Thanks.  By the way, my biopsy is scheduled for this Friday Nov.14 2008 at 8:00am.  They are going to do an ultrasound that will help guide the needle to the nodule.  Will that HURT!!!!!  I'm not afraid of needles, but this sound painful.  I know that they will give me something to numb the pain, but the thought of a needle in the neck. YIKES!!!

[jy123]

Don't worry about your FNA.  I just got back from my u/s guided FNA.  You are right, they use local anthesia to numb the thyroid area.  All I felt was then the needle first went it, felt about the same as when you have your blood drawn.  After that I could barely even the presure.  Once the med worn off though, you might be a little sore.  I totally understand how you feel, though.   I was so neverous...Sending positive thoughts your way...

[Thypatient]

My dr skipped the biopsy, so I couldn't tell you how it goes.  I'm glad jy123 answered that for you.

Good luck and let us know how it went.

Take care.

[RavingMad]

I was hyper then had a TT in Jan '07 & became hypo. I started taking 50mcg thyroxine the day after surgery & have felt awful ever since, upping my med dose gradually to 200mcg. It's been like a rollercoaster ride, yo yoing between hypo & hyper, though my results were usually within 'normal range' - a few were slightly below or above the range.

I put on nearly 20kgs, constantly severely fatigued/tired, bad brain fog, had periods of depression then manic like episodes, dry/rashy skin, constipation, period probs, hair falling out/thinning & really bad fluid retention in my legs, thighs, face & eyelids/under eyes. No matter how high my dose was - the symptoms remained.

Out of sheer frustration I found an alternative/complimentary/holistic GP who was willing to run more tests & advocated & precribed Natural Thyroid Extract/Natural Thyroid Hormone (NTE/NTH). I've weaned off the thyroxine & am now on the natural stuff. It's only been a few weeks - but I can feel the difference already & I've lost 3kgs. I'm willing to give anything a go at this point, I just want to feel 'normal' again!

The best advice I can give to you - is to listen to your body - you know how you feel better than anybody else, keep up to date with due tests & always get copies of results to keep, if unhappy with a GP/specialist - get a 2nd or 3rd opinion, research & read as much as you can (pm me for some good thyroid diet books), take supplements/vitamins, get plenty of rest, exercise/chill out (I do pilates, yoga & swim when my back's ok), eat super healthy & drink plenty of water. Hope this advice helps & I hope you're feeling better soon.

Take care,

Rach

[prlgibson]

I survived the biopsy!  They had to numb me twice because I could feel the needle. Oh my goodness.  What a feeling!!!!  The doctor kepting asking me pressure or sharp, pressure or sharp. All I could say was sharp pressure, sharp pressure. After the second dose, I was ok.  Thank you guys for the positive thoughts.  It's been a week and I haven't heard back from the doctors.  Hopefully that's a good sign.

Thanks again,

[Soft52]

I had a TT in Oct I had cancer. I am on Synthroid the Dr has moved me up to 176 a day. I cannot take it all at one time my blood pressure goes way up for the first couple of hours then it starts coming back down. So the Dr changed me to taking synthroid 88 MCG two times a days.  I have not heard of anyone having to take the thyroid meds two times a day. Does anyone else know of anyone that has to break up the synthroid up like this? I want the Dr to change my meds to Armour but he just want to try this. When I start off with the new levels I feel great and think this will work but then I start feeling tired again and go back down hill as if my body adjust to the new does and I need more to stay at the same level. Is this normal?

[magpieannie]

My daughter is 8 and was born without a thyroid gland. She has been on synthroid since 3 weeks of age and has always done well on it until recently. She has begun having issues with her heart-PVC's (premature ventricular contractions) in her right ventrical. It is happening during moderate exercise and she feels it as an overly fast and strong heart beat.Do any of you, who have had your thyroid removed, have issues with your heart beat? Could she need her dose changed even though she is in normal range over 2 years now? She is on.88 micrograms. She shows symtoms (symptoms) of being on the hypothyroid side. What could be suddenly causing this? Could it be the synthroid itself? I am so worried about my little girl! If anyone has any ideas on this please let me know.

[Wolf52]

I had my thyroid removed only a couple of months ago but I can tell you the thyroid controls the heat rate. My heart rate whet up and my blood pressure went up. When I asked the Dr why he told me it just happens sometime. I month later at another Dr I found out something was wrong with my thyroid. I ended up having it removed. I have been on synthoid after the Dr said he got all the cancer and no other treatment was needed. I am coming off the medicine controlling my heart rate as the Dr raises the synthroid. So what I would do is call the Dr and tell him about what is happening to your daughter and see about getting her synthroid increased.

[dee541]

Hi all i had thyroid cancer and had my whole thyroid removed 9 weeks ago..My dad wasnt so lucky he died 9 years ago of thyroid cancer..So please have yours taken care of...My problem is i am still having pain in the site of the incision. I did have problems after surgery also. I wont get into that if you want to know you may e-mail me at ***@**** but i went to the DR. yesterday and she did a scan..And was i ever in disbelief i guess is the only way to put it..I have metal surgial clips in my neck and down in my chest..Now two or three ok. But i have over 30...Yes over 30... I was never told of this or even discussed that i might have to have all this before surgery.My question to anyone that may know is what are the long term side affects of this..Oh and i am allergic to metal my body always rejects it....I dont know what to do or even who to ask about this concern....shouldnt my Dr.of discussed this with me before hand?

[LJTen]

About Hypocalcaemia

A life-threatening situation can occur after thyroid surgery that I wish had been more emphasized by my doctors.  Your parathyroids can go into shock (or some removed along with your Thyroid)  and you can become hypocalcaemic.  Symptoms are tingling in hands and feet, followed by tingling in face.  This can get worse and worse and you can get muscle spasms.  You can go into convulsions and die.  You need to contact your Dr. and get to emergency hospital immediately.  They can feed you calcium intravenously and orally.  You might be put on high levels of calcium pills until your parathyroids start functioning again.

I was released from the hospital 23 hours after surgery.  These symptoms appeared 2 days after release. I started feeling them at 8pm and by 9pm was having spasms.  In the hospital, they fed me calcium both intravenously and orally for more than 48 hours and gave me vitamin D as well.   I continue to take large doses 2 weeks later, although it is tapering off as blood test show improvement and symptoms have not returned.

I understand this is rare (like 8%)  but it CAN happen.  Just be forewarned and know what to do.  Discuss it with your Dr. before surgery.  Ask her if you should have calcium in the home (just over the counter calcium carbonate (or oystershell calcium if you are not allergic to shellfish) to take  upon symptoms.   Tums, which are chewable and act quickly, might even be better, though I suggest checking with your Dr.

Cheers,

[caz14]

hi my names carrie i'm 21 years old and i was told 1 month ago i have follicular cancer i have already had half my thyroid taken out a month ago and now have 2 go back and have the other half removed in 2weeks. I was in shock when they told me and didnt really ask any questions has any body on here had it and can tell me a bit about the side and after effects? would really appricate it. thanks

[MAK_Missy]

Man.... I wasnt born with a thyroid gland at all... I dont know what it feels like to be normal (synthroid all my life), But the only thing that keeps me going is that a lot of people have it way worse and that I have a lot to be greatful for! I do appriciate the advice because, ill never give up on myself !!! WOOT! Thank you all!

[temenos2]

I had my entire thyroid removed last Thursday, August 20 th. I wish I had found this site beforehand.  The doctor assured me it was no problem not having one, I would just take the replacement and all would be fine and normal but it doesn't sound as though that is the case from what I read.  It will do me good to get some of this out.  I had no symptoms and blood tests showed my thryroid was functioning just fine. I had an MRI for a neck vertebrae problem and the doctor noticed my left thyroid was enlarged and reported it to my PCP.  I had an ultrasound and they said there was a large mass and referred me to a large New York State Medical University to a doctor who specialized in thyroid surgery.  She said she wasn't going to do a  biopsy because cancer or not, it had to come out. She said the other side was normal and just had one tiny nodule on it that was no problem so it was my choice whether to have the entire gland removed or just the enlarged side - I could tell her the AM of the surgery. I told her right then to remove only the enlarged side. She said if she looked under the microscope when in surgery and there was cancer on the enlarged side she would still remove it all. The AM of surgery I told her to not remove the normal side. Well, after surgery she said the mass was as large as a lemon and to big to get a good slice to look at but she was very suspicious it was cancer so she removed the entire gland.  She said she felt it was cancer but maybe it wasn't and we would wait until the lab report comes in. When I was discharged her NP said the doctor told her it was cancer so in a month I was going to have to take radio active pills and then be put in isolation for 5 days which worried me greatly. Then I couldn't believe it - they called 4 days later and said the pathology report came back and there was NO cancer. Well that makes me so THANKFUL but now I want to know why did I have the good side removed and is my life and health going to be good (or bad) going forward. I haven't been to a doctor in 20 years and have enjoyed perfect health.  Now I go to a doctor and I get all this. Their business is for you to be sick!  I am thankful to have gotten through he surgery but I am very tired and have to stay in bed most of the AM before I can get moving. I am on .15 MG of Levoxyl.  My wife says to think positive and everything will be okay.  I wish I could hear from someone who had their thyroid removed, takes the replacement and everything is going well for them. Well, thanks for listening. I really appreciate it!

[temenos2]

I left the above message on August 26 th @ 11:51 AM.  That evening I removed the bandages over my incision as the doctor said I should a week after the surgery. I am shocked.  All around the incision is a protrusion that is about the size of half a tennis ball-just sticking out. It really has me worried what this is and is it going to go away.  I don't know if it is swelling or what.  Did anyone have this after surgery?  I would appreciate any information if you had the same thing and if it went away.  Thank you for your help.

[jenger]

To answer  a variety of questions,
The fine needle  biopsy  is nothing to worry about. You are fully awake and it does not hurt. It is a valuable diagnostic.

In Feb 09 I had 1/2 thyroid removed due to a large growth on one side. Because my brother had thyroid cancer 15 years ago, my surgeon did not want to leave anything odd in there. Also, I was hypo and gained  weight slowly for about 5 years. Also I choked on food like you wouldn't believe.

so they took out half and I have done fine.
I did not lose my voice, and I was not too sore. My scar looked awful for awhile. then, Suddenly one day i looked and the black line I could see from thread was totally gone. I have NO scar to speak of and it has not even been a year.

Not needing meds lasted 2 months. I started gaining weight, retaining water, could not walk,  and my voice got hoarse. Also, my  thinking was fuzzy.
They put me on Synthroid. I took samples of 75 mcg for 2 weeks and then the pharmacy gave me the generic. Big mistake. Sorry, but it was.

My doc  wrote another prescrip that said BRAND NECESSARY on it and now I get the brand name instead of the generic.

Oh. My. Gosh. Such a difference. Obviously I am converting T4 to T3 because I am so much better, yall. And as for this idea of getting off of it or reducing it---that is just confused thinking.

my brother is a cancer survivor and takes 200 mcg    of    synthroid every day. He said it doesn't matter what you take. If you need a certain amt to function in your life then that is what  you take.don't be worrying about "getting off".

It's not like a drug for blood pressure or cholesterol that can be reduced or dropped because you lose weight and exercise and don't need as much. NO-- synthroid is different. Finding your correct level is necessary.

As for Armour, all i can say is I took that 11  years ago  and I ended up Hyper and my eyes bugged out. I was a freakin nut case. The  natural route has its limits as does the synthetic. Since armour has T4 And t3 in it, it is a little dicey.

I didn't need both because my thyroid was able to convert.But my doc at that time was so stupid.

I  had too  much T3 and I was messed up. This may be why I developed the nodule.

If you are on Synthroid and even after tweaking you don't feel better then tell the doc you want to try t3. And Synthroid takes a long time to become therapeutic.

It takes about 3-5 days for one pill to do a conversion in MOST people. I didn't feel myself for 3 months at least. I am only now getting back to normal with my thinking, my voice and my feet. I am also losing weight. I  need to lose 20 more lbs.

I am grateful I did not have cancer and I am grateful for a young Endo who is working with me.

do not be afraid of the surgery either.  the first night you might need pain meds, After you go home you won't notice it. Eat jello, soups and puddings for a week and you will be fine.  

Don't strain your voice tho trying to see if you can sing!! Everything is swollen in there. And you don't want to put strain on the stitches or glue.
Good grief girl.

[KATIE48]

I TOO HAD A COMPLETE THYROIDECTOMY 15 MONTH'S AGO,AND THEY STILL DONT HAVE MY LEVEL'S REGULATED,CURRENTLY MY LEOTHYROXIN WAS INCREASED TO 200mcg...FATIGUE DEFINATELY AN ISSUE.I HOWEVER WAS FOUND TO HAVE 8MM PEA SIZE CARCINOMA,I UNDERWENT RADATION I 181,AND HAD TO BE OFF MY THYROID MEDICATION FOR 6 WEEK'S UNTIL MY LEVEL WAS OVER 60,IT HAS TAKEN ALL THIS TIME AND THEN SOME TO GET IT DOWN TO A 5.I FEEL TERRIABLE ALOT OF THE TIME,THE ONLY BLESSING I HAVE SEEN IS THAT AFTER THE RADATION,I WENT INTO AN EARLY MENOPAUSE,(WHICH DIDN'T BREAK MY HEART AT ALL) NOW I HAVE HOT FLASHES...WOOOHOOO,LUCKY ME.CAN'T WAIT UNTIL MY DOSE IS REGULATED....I'M BEGINNING TO WONDER??  KATE IN OKLAHOMA CITY

[judy0]

I had hypothyroidism for several years and was on levothyroxine (generic synthroid)  I developed a multinodular thyroid that was pressing on my windpipe and esophagus and causing difficulty breathing and swallowing.  I really had no choice but to have surgery in June 09, a TT.  I am 54.  One nodule was as big as a golfball.  I am also a gospel singer.  I know that two problems of having your thyroid removed is that they accidentally take your parathyroid glands (you have 4 and they control your calcuim level) and also there is the possiblity they can nick the nerves that control your vocal cords).   When they raise the flap of skin under your neck to perform the surgery, it also affects your vocal cords as it causes trauma to the nerves, but that part can get better eventually.  You can have the option of leaving part of your thyroid gland in as it will pick up and take care of the body's needs but there is always the possiblity you will get more nodules and end up having a second surgery.  Or if you are diagnosed with cancer in the first surgery, they will go back in and take the rest of it.  Biopsies are almost ALWAYS inconclusive so I don't know why they even do them as they are very painful and rarely helpful.  Also if you leave part of the thyroid in you will have to spend extra money for periodic ultrasounds to monitor the other part of the gland and maybe more biopsies.  Your thyroid is like your master gland, it controls wheather your periods are heavy or light, skin dry or soft, regulates body temp so you are either too cold too hot, hair is think or thin, whether your pulse beats slow or fast, alertness or poor concentration and memory loss, joint aches, sleepiness or wired, and controls matabolism, how fast you gain and lose weight, ect.  Really the surgery is a personal choice (unless it is cancer/malignant) and your doctor can only tell you from the textbook examples, especially if they have never been there and done that.  I would suggest that you talk to your doctor about the importance of your singing career and how important that is to you.  Tell them about this site and how other post thyroidectomy patients feel and your concerns about that. I went to one doctor who made a joke of it and said, well I have only nicked 5 peoples vocal cords and laughed about it.  I got out of his chair and walked out and went to another doctor who cared about my concerns.  Try to know more than your doctor when you go and do put them on the spot.  It is your body, not theirs.  She ensured me she would do everything in her power to be careful there and to be careful and leave my parathyroids (that is even more important because hypocalcemia is very serious).  I made the choice to have my whole gland removed because I never wanted another surgery or to have to do ultrasounds and biopsies  forever.  (The second doctor (who did my surgery) was an ENT and specialized in plastic surgery as well so she was also concerned about scarring).  She did a great job, I did at first have some problems with my voice and over the year (one year tomorrow), my voice is back and continues to improve, although I cannot hit some high notes like I could before but I can still sing.  I couldn't do opera in the first place and know I couldn't now.  I would suggest to build a good rapport with your doctor and write down all of your questions and concerns and let your doctor know that you want a doctor who welcomes your questions.  Ask them of their success rates, stats on complications on their patients.  I am on 125 levothyroxine and have sleepless nights, mood swings, still feel tight in my neck, have a little problems swallowing, have a little problem breathing which is scary ( I think that is what causes us to panic is that we worry something is wrong).  My TSH is a little low but if I lower the dose to the next level, I can hardly go.  Anyone who has a TT will always be on medication.  So it is a vicious battle, especially finding the perfect dose.  I wish the best for all of you.

[JanessaSLP]

It is so nice to read all your comments.  I had a TT 6 months ago ( I am 29).  For many years I was monitoring a large nodule, which always showed to be benign after multiple aspirations.  About 1 year ago, another one grew and at that point, I started to have difficulty swallowing and breathing.  I am a speech language pathologist so I am very knowledgeable of the swallowing mechanism and the risks of an impaired swallowing mechanism.  I wanted them out.  The surgery went well and 1 week later I found out that both nodules were malignant (follicular carcinoma).  I underwent the radioactive iodine tx and was put on 150 mcg of Synthroid.  Since my surgery, I have lost 7 pounds and have honestly not been myself.  I feel like I am in a fog.  I am super irritable, worried all the time, have joint pains, and have had several panic attacks.  Now that I read this blog, I feel much better.  I am not the only one that is or has gone through this.  I wish my doc would have told me all this  would happen so that I would be prepared.  I have my next check up in August and will ask him about my other options.  I am having a really hard time coping with the changes in my body, but am optimistic that everything will be OK and eventually I will be the person I was before.  

[394spwuw45]

Wow - what a relief to know other people who have had this surgery are having serious emotional lows and anxiety problems.  I thought I was losing my mind.  It's been 18 months since I had my surgery and the periods when I don't feel good are really intense.  Does anyone know if there is something other than our thyroid medication (for me, 125mcg synthroid) that one can take to alleviate this?  Other than Xanex - which I do take before bedtime (just 1/2 blue tablet - which I think is .5mg).  The anxiety can be debilitating at times.  And it's starting to affect work.  Any suggestions would be appreciated.

[blsdnsvd]

How are your labs??? I had a TT 6mos ago and i'm having lot's of hypo symptoms including "Anxiety/Panic Attacks" and i know them all to well from suffering over 10yrs ago, however since the TT, they have returned. I am on 88mcg's and my TSH level is Normal so my Endocrin doesn't want to increase my med's, however I will talk to him about adding a T3 Med to kinda even things out and will see what his opinion is is on that one.

It seems as if everyone whose had a TT, has hypo symptoms due to the fact of not having a Thyroid, even when on T4 med's...it's just what it is. I was hesitant in having the surgery because of the posts i've read on this site but because my health is very important to me, i decided to get it over and done with and deal with the aftermath and that's what i'm doing. I do feel better than i did 4mos ago and that's a good thing and although my energy level depletes by evening, i'm able to work out in the gym daily with no regrets or set backs.

I'd advise anyone whose living without a thyroid to continue to monitor the symptoms and always stay in charge. Never allow a doctor to tell you that a hypo symptom is not due to the thyroid issue....alot of them will push the problem onto another specialist and before you know it, you will be seeing several doctors for a "domino" affect that occured from one problem. Having a good doctor who "listens" is key to feeling better.

[gettygirl73]

Just reading everyone's responses to recovery time from surgery. I'm going in on July 23 for my surgery. I have had Grave's Disease for 5 years and a goiter.  In March of this year, I had a bad thyroid storm and was in the hospital 6 days. Just hoping and praying my surgery goes well. Very, Very Nervous!!

[mabear3]

I am so excited to find this site!  I had a TT about 4 months ago.  I had multiple nodules which created a hyperthyroid.  The surgery was a breeze and I felt better than I had in years (I turned 40 this year).  However, lately I have been feeling exhausted and having difficulty catching my breath.  I just had bloodwork done and found out that my TSH level is 9.0 (could this be the cause of breathing problems?)!  I'm currently taking 150 mcg's of synthroid and my Dr. wants to increase dosage to 175 mcg's.  I'm wondering if my breathing problems are from anxiety.  I don't know if breathing problems (having to take really deep breaths) are a symptom of anxiety.  I haven't felt like this before.  Thanks so much for any advice anyone can offer!

[cconeal84]

I had my thyroid removed 9 years ago. I am exhausted all of the time. My doctor says my counts are "normal" When will doctores realize what is normal for one person may not be normal for the next person. I have an appointment with an endrocrinologist the 24th of this month. I'm hoping she can get me straightened out. I also go through crazy mood swings.

[desperatejen]

hello there...i just found this site, and i am so hopeful for my husband, nick, who is 23, and had a TT two years ago.  He was on state insurance then, but has been since dropped.  the dr. took his thyroid, all four para thyroids, and messed up his voice box a bit...we cant afford the calcitriol, but the levothyroxiene makes him sick, cant really afford an ent. because we cant afford pre-existing condition insurance.  My Nick is tired all the time, his body aches so bad it makes me cry...Pleas help me help him.  He is so young and hardworking, it kills me to see him in so much pain does anyone have any suggestions??

Desperate!

[magpieannie]

This is an old and long thread. You probably won't hear from many on here. Your best bet is to copy and paste a version of this into a brand new Post.

[gog186]

Hi, I'm a 29 year old male, got my thyroid taken out when i was 12 and not taken any medication or suppliments and living a normal healthy life... not sure if this is natural or not but said i'd post it anyways....

[gimel]

Are you sure the thyroid glands were totally removed?  Or could it have been a partial thyroidectomy?  Have you ever had any thyroid tests done (for T4 and T3) to verify some level of thyroid hormone in your blood?    Something doesn't add up, because you have to have thyroid hormone to function and survive.

[magpieannie]

That is not possible! You would have died along time ago if this were the case, as you cannot live without thyroid hormone. I'd get an ultrasound of your thyroid area to see what is there if I were you. Something is definitly not right here!

[sandalwoodalley]

This is an old thread but I would like to add to it anyway.  I just had a Total Thyroidectomy, a TT, three weeks ago.  If I had read enough beforehand, I might have opted to preserve half my thyroid gland, despite having a micro carcinoma, papillary thyroid cancer, under 1 centimeter in size on the right thyroid lobe or side, along with three nodules untested on the left.

Lots of people have nodules, and lots of people live with intact thyroid glands containing small papillary carcinomas, for long periods, with no impact on their health.  Autopsy studies on car crash victims show that a good portion of the population over 50 lives in relative good health with such micro-carcinomas.
Like mine, these are sometimes discovered by chance when some other neck problem leads to imaging studies that reveal nodules that then must be checked out.  In my case, one of 4 nodules looked suspicious, and was in fact malignant.  All doctors seemed to think I should have a total thyroidectomy.

So I did, and now I regret it--I think in the future, those few American surgeons and endocrinologists who argue that we should take a watch and wait approach with these micro-carcinomas will win out.  While some people do do fine on synthetic thyroid hormone replacement, a ton of us apparently do not, or at least have to spend a lot of months or years figuring out what cocktail and dosage works for us.  Eventually, genetic studies of other medical research will lead to discoveries that will help endocrinologists figure us out by "type" and prescribe hormones accordingly, perhaps, but that is likely decades away.  In the meantime, my advice is to keep any part of your own thyroid--even if just a rim of the gland, hopefully a whole lobe--that you can.  Folks seem to do best when they retain some of their own thyroid tissue.  
That said, if, like me, you have had a TT, keep at it till you get the odd combo of doses and drugs that works best for you, so that you feel as good as possible.  I think I will have to take two separate doses of a T4 every day, not one daily.  I currently get hoarse-voiced, sob, breath very slowly, get gut pain, and start feeling suicidal, all of which appears to subside with an extra tiny sliver, maybe 10 mcgs of Levoxyl, in the evening or afternoon.  Why not?  I'll try anything to treat this insane, previously-unknown-to-me set of symptoms.   If my endocrinologist does not approve, I will go elsewhere.  I will not be a nice, docile, obedient, overly patient patient when simple logic tells me to help myself survive first then stabilize.

[annag1957]

Hi all, just read the most recent posts.  Had left part of thyroid removed two years ago, in 2008 because of an almost 2 cm nodule that had grown on and into that side of my thyroid. The surgery went fine, great ENT/surgeon. Have had no bad side effects on meds. Now, I have a nodule on the right side of my thyroid. In Sept. 2010, it was 2 cm and after a needle biopsy is was reduced to 1.7 cm and showed no cancer.  Went in two weeks ago in Nov and the nodule has grown to almost 3 cm. I go in for another needle biopsy on Jan. 10th. At that time we will discuss whether to take the rest of my thyroid out, or keep checking on it.  Right now the size of it is bothersome. I am very aware of it. Not really afraid to have the surgery, more concered with the after math of living on the right doses of thyroid meds, tiredness, anxiety or panic attacks. I forget that not having a properly functioning thyroid can cause these things. Actually made me feel a little better to read these things. Just thought I was being lazy needing naps in the afternoon and just feeling tired a lot of the time.  Anyway, thank you all for any comments on how you cope without your thyroid, they will be very much appreciated. Anna G.

[claudstuff]

I understand you concerns for I had my second lobe removed about 7 years ago and was doing pretty good after having the first removed about 12 years ago...... But now I am a wreck.  I am so reliant on the meds to feel good, keep my weight at a good level and to keep just feeling normal.  Sooooo whatever you do..... DO NOT have your second lobe removed.  There is so much more that can go wrong.  Now my doctor is about retired, so now he says I have to start over with another doctor, pay all those fees again and welllllll it keeps going on and on from there.  I am finally realizing after all these years there are alternatives.  One you need to find a good doctor that understand that when he is giving you enough replacement hormone, the nodules will no longer grow.  You need to also understand that your body will change, you will see and experience changes based on your hormones as you age and what is needed to feel healthy.  You also need to know the parathyroid is the distributor of calcium in your blood, so having no thyroid will cause you possible bone density loss at an high rate!  After now with aches and pains in my body and bones, foggy memory, spinal pain and much more, I recommend DON'T DO IT.

[KMW33]

I urge you to find a doctor who will help you.   My thyroid was removed in April.   Before that, I had to take thyroid medicine because I couldn't function.   I lost my good health for 3 years, all the while the doctors told me my levels were fine, yet I deteriorated.   I tried the synthetic thyroid for 8 months and didn't get much better.   Finally I was given the name of a doctor I could go to to get 'natural thyroid.'   I have to pay him out of pocket, but it is not a lot of money and the bio-identical thyroid I take is T3 AND T4, not just T4.   Don't accept being sick.  You can get well, but if you just rely on doctors who only want to look at a blood test, you will not get your life back.
An endocrinologist will be no help.   It's truly sad, as evidenced by how many posts you see of everyone who feels so unwell included in these comments.   You are going to have to get to someone who will treat YOU.  You know how you feel and how bad your life is.   Find someone who will listen to you.

   I got my life back.   I could barely walk and I went years without sleep and sometimes 5 days at a time unable to even fall asleep.   When you get thryoid medicine that actually helps you, your body will recover.  

[KMW33]

I urge you to find a doctor who will help you.   My thyroid was removed in April.   Before that, I had to take thyroid medicine because I couldn't function.   I lost my good health for 3 years, all the while the doctors told me my levels were fine, yet I deteriorated.   I tried the synthetic thyroid for 8 months and didn't get much better.   Finally I was given the name of a doctor I could go to to get 'natural thyroid.'   I have to pay him out of pocket, but it is not a lot of money and the bio-identical thyroid I take is T3 AND T4, not just T4.   Don't accept being sick.  You can get well, but if you just rely on doctors who only want to look at a blood test, you will not get your life back.
An endocrinologist will be no help.   It's truly sad, as evidenced by how many posts you see of everyone who feels so unwell included in these comments.   You are going to have to get to someone who will treat YOU.  You know how you feel and how bad your life is.   Find someone who will listen to you.

   I got my life back.   I could barely walk and I went years without sleep and sometimes 5 days at a time unable to even fall asleep.   When you get thryoid medicine that actually helps you, your body will recover.  

[KMW33]

Just to add:   Anyone who has pain in the bottom of their feet or who has been told they have fibromyalgia, I strongly suggest you get some thyroid medicine.   All the other medicines they will push on you to help with 'symptoms' will only make you sicker and not treat the cause.   There is a very good chance you are subthyroid and if you could get the thyroid hormones you need, you will feel well.    Isn't that supposed to be the goal here?

[Syberbunni]

Anyone who has pain in the bottom of their feet or who has been told they have fibromyalgia. Funny his is what I am going through right now. I am on 10mg. eIavil for fibromyalgia which i do not believe I have. Gluten free diet for celiac disease. Which it is possible I have this, my 11yr dd has full blown celiac. I have hashimoto's I am currently on 75 mcg synthroid for underactive thyroid. I truly believe this is the root of all my pain. In recent years my pain in my is very bad at times. The bottom of my feet are so tender. I often have to change shoes through out the day to help with the pain not being point to one area if that makes since. I am having my thyroid removed in July. My doctor is willing to put me on the armour but not until September. He is worried that if I have my thyroid removed, go off the elavil, & switch thyroid meds it will be to much on my body. But, most posts i have read about recovery after a tt removal people seem to do best on a free t4 & free t3. At lease he is willing to do it at some point. I do feel he is proactive with me. It is just hard waiting.

Tera

[Dlhenson]

I had a total thyroidectomy 6 years ago. It was cancer. My voice was fine. I did and still continue to have problems with my dosage. I don't have health insurance and just opened my own business and don't have the money to see a doctor. I've been on Synthroid and Levyxol.  Both didn't help any. The last time I was tested I was taking 300mmg and it was still not enough. I'm constantly tired and emotional, gaining weight like crazy and sore all over.

I need some help. I'm at a lost for any kind of solution. I read forums and research, and cant find somehing even closely related to my situation. Any ideas?  

[sky1962]

i stumbled across this site and have been reading the posts.  seems to be a supportive, intelligent and compassionate group of people.  my surgery is set for 5 days from now and i am scared, though, with everyone saying how bad they feel afterwards.  i feel fine.  i just felt a lump on my neck.  my bloodwork and thyroid levels are normal.  i had an ultrasound done and it showed a large solid nodule on one side and a cluster of 14 baby nodules on the left side.  the fnb's came back "inconclusive".  surgery scheduled to take out right side due to size and good chance of cancer, left side will be biopsied while on surgery table and will stay or go accordingly.  am i setting myself up for a self-inflicted nightmare by going through the surgery?  is surgery recommended to support the surgeon's livelyhood?  i feel fine, maybe i should just leave it alone?"  i am so confused!  thoughts?

[Jdy124]

I lost my thyroid 20 years ago. Adjusting to synthroid was difficult but eventually I found the level that was right for me.  One size does not fit all. When you find the level that works for you,regardless of the blood levels, stick with it. I take a combined dose .088 for 5 days and .100 for 2 days week. It works for me. Once I tried Levothyroxine for a week. I couldn't think or walk straight and went right back to Synthroid.  . Be careful when your doctor lowers your dose without asking how you feel.  My internist suggested I lower my dose because my TSH was a little too high.  Within weeks I was struggling to walk, breathe, even stand upright. Went back to my endocrinologist and was placed back on my usual dosage. Felt normal again in a couple of weeks.  Thyroid meds are powerful, a very little bit can make big changes. Find an endocrinologist you can work with and work as a team.  I don't think about my thyroid at all. What ever discomfort you are having can be resolved. Find the right doctor, the right meds and the right dose for you. It's a journey. Be proactive.

[Jdy124]

Had my thyroid out 20 years ago because of thyroid cancer.  Don't miss it a bit.  Getting use to meds and finding the right dosage for me was a challenge but your endocrinologist will work with you. Eventually I found  just the right levels for me.  There will be some side effects but they are different for everyone. Be patient, proactive and know that there are solutions.  Read as much as you can and ask questions.  Be sure you understand what T4 and TSH mean. If you keep one lobe of your thyroid you'll be fine.  If you don't you'll still be fine.

[Cherylab44]

I had my thyroid removed 4 months ago...I am a total wreck...I don't know what to do anymore. I feel empty inside. My dr. waits for 8 weeks before testing me. I have hypo thyroid. I had no idea that I had thyroid problems until the nodules were found in my neck. A total of 13 were there. The biopsy showed 2 spots that were cancer. Since losing my thryoid I feel worse than I did before. I am on 100mcg's right now. I can't lose weight, sleepy all the time, muscles ache, freeze at all times. Will this ever go away. I'm 46 years old and some days fell like why go on. I am honestly scared most of the time. I feel I have no control of my emotions or feelings. I lost my job due to a simple mistake that I knew I was doing, but never thought about it until after the fact...what am I to do? Any advice would be very much appreciated.  

[gimel]

With that history and those symptoms, I'm sure that your 100 mcg dosage leaves you under-medicated.  It would further help members assess your status if you would post your thyroid related lab test results and their reference ranges shown on the lab report.

[Cherylab44]

my last test was July 21st...the level was 7.6. I don't understand this stuff but the dr. said it was really high.

[gimel]

I expect that the test was for TSH, which is inadequate testing to diagnose and treat a thyroid patient..  TSH is a pituitary hormone that is affected by s many variables that at best it is an indicator, to be considered along wtih more important indicators such as symptoms, and also the levels of the biologically active thyroid hormones, Free T3 and Free T4 (not the same as Total T3 and Total T4).

So the first thing you need is to be tested for Free T3 and Free T4, along with the TSH.  Then you should be aware that just having results for FT3 and FT4 that fall in the lower end of their ranges, is frequently associated with being hypo still.  Members frequently report that symptom relief for them required that FT3 was adjusted into the upper part  of its range and FT4 adjusted to around the midpoint of its range.  Since hypo patients are frequently low in other areas, you should also request to be tested for Vitamin D, B12, zinc, iron/ferritin, and selenium.

A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not just test results.  You can get some good insight into clinical treatment with this link to a letter written by a good thyroid doctor for patients that he consults with from a distance.  The letter is sent to the PCP of the patient to help guide treatment.

http://hormonerestoration.com/files/ThyroidPMD.pdf

When you go back to the doctor for the needed testing, you should ask if the doctor is going to be willing to treat you clinically as described.  If not, then you will need to find a good thyroid doctor that will do so.  If you will tell us your location, perhaps some member can give you a recommendation based on personal experience.

[Jobabi]

I am on a cancelation list to have my Thyroid removed I have been border line Hypro for 19 years they found 4 lumps and they want it removed . I am over weight and I am scared to gain more weight when I have my thyroid removed ,the Dr wants to put my on Thyroxine after surgery would I be better on Thyrolar-2 is it avaiable in Canada?

[gimel]

Of course weight is affected by a number of variables, including calorie intake, exercise, and also metabolic rate.  Metabolism is, of course, affected greatly by the levels of your biologically active thyroid hormones, which are Free T3 and free T4 (not the same as Total T3 and Total T4).  Free T3 is the most important because it largely regulates metabolism and many other body functions.  Scientific studies have also shown that Free T3 correlated best with hypo symptoms, while FT4 and TSH correlated very poorly.  

No need to be overly concerned about weight gain after thyroid gland removal, if you have a good thyroid docor.  By that I mean one that will treat you clinically by testing and adjusting levels of Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief shoudl be all important, not just test results.  

If you have maintained a reasonable intake of calories and maintained moderate exercise, yet you have still had weight issues in the past, that would make me wonder if your doctor has been adequately testing and treating you for your borderline hypo condition.  If your doctor is one that has the "Immaculate TSH Belief", or uses "Reference Range Endocrinology", then that could explain any lack of testing and treatment.  

I think you can learn a lot about clinical treatment.from this letter written by a good thyroid doctor for patients that he consults with from a distance.  The letter is sent to the patient's PCP to help guide treament.  You might consider giving a copy to your doctor and asking if he is willing to treat you in this manner.  If not, then you will need to find a good thyroid doctor that will do so, or else you will have to worry about weight gain.  It is not a matter of the  brand of thyroid medication.  It is about the right type and amount of meds necessary to relieve hypo symptoms.  Many of our members report that symptom relief for them required that Free T3 was adjusted into the upper part of its range and free T4 adjusted to around the midpoint of its range.  



For Physicians of Patients Taking Thyroid Hormones
I have prescribed thyroid hormones for your patient because his/her symptoms, physical signs, and/or blood tests suggested that he/she had inadequate levels for optimal quality of life and long- term health. If there were clear improvements, I maintained the thyroid supplementation. Mild-to- moderate thyroid insufficiency is common and an unrecognized cause of depression, fatigue, weight gain, high cholesterol, cold intolerance, atherosclerosis, and fibromyalgia. Thyroid supplementation to produce higher FT3 and FT4 levels within the reference ranges can improve mood, energy, and alertness; help with weight control, and lower cholesterol levels.
Your patient’s TSH may be low or undetectable, even though their free T3 and free T4 are within the reference ranges. Why? We are taught that the TSH always perfectly reflects a person’s thyroid hormone status, supplemented or unsupplemented. In fact, we have abundant evidence and every reason to believe that the hypothalamic-pituitary axis is NOT always perfect. In clinical studies, the TSH was found not useful for determining T4 dose requirement.i The diagnosis of thyroid insufficiency, and the determination of replacement dosing, must be based upon the patient’s symptoms first, and on the free T4 and free T3 levels second. The TSH test helps only to determine the cause. Even here, “normal” may not be good enough. The labs’ reference ranges for free T4 and free T3 are not optimal ranges; but only 95%-inclusive statistical population ranges. The lower limits are below those seen in studies of healthy adults. They define only 2.5% of the population as “low”, but hypothyroidism is more prevalent than that.
T4-only therapy (Synthroid, Levoxyl), to merely “normalize” the TSH is typically inadequate as the H-P axis is often under-active to begin with, is more sensitive to T4, and is over-suppressed by the once-daily oral thyroid hormone peaks. TSH-normalizing T4 therapy often leaves both FT4 and FT3 levels relatively low, and the patient symptomatic. Recognizing this, NACB guidelines call for dosing T4 to keep the TSH near the bottom of its RR (<1) and the FT4 in the upper third of its RR; but even this may not be sufficient. The ultimate criterion for dose adjustment must always be the clinical response. I have prescribed natural dessicated thyroid for your patient (Armour or Nature-Throid). These contain T4 and T3 (40mcg and 9mcg respectively per 60mg). They are more effective than T4 therapy for most patients. Since they provide more T3 than the thyroid gland produces, the well-replaced patient’s free T4 will be around the middle of its range or lower, and the FT3 will be high-“normal” or slightly high before the AM dose.
Excessive thyroid dosing causes many negative symptoms, and overdosed patients do not feel well. I suggest lowering the dose in any patient who has developed insomnia, shakiness, irritability, palpitations, overheating, excessive sweating, etc. The most serious problem that can occur is atrial fibrillation. It can occur in susceptible patients with any increase in their thyroid levels, and is more likely with higher doses. It should not recur if the dose is kept lower than their threshold. Thyroid hormone does not cause bone loss, it simply increases metabolic rate and therefore the rate of the current bone formation or loss. Most older people are losing bone due to their combined sex steroid, DHEA, Vitamin D, and growth hormone deficiencies. The solution is not life-long hypothyroidism or bisphosphonates; one should correct the hormone deficiencies.

Fraser WD et al., Are biochemical tests of thyroid function of any value in monitoring patients receiving thyroxine replacement? Br Med J (Clin Res Ed). 1986 Sep 27;293(6550):808-10.

[magpieannie]

Thank you for sharing this letter! It is dead on! This is a great reference for us all to print and have on hand as a refresher and to be used as needed when looking for a doctor who truly "gets it"!  God bless!

[Brucergoldberg]

OK this is a very old post that seems to be getting bumped.  It is very scary as I am looking at a possible single lobe removal in the next couple months.  There are so many conflicting stories regarding if people are better with a TT.  Some people do fabulous, others seem to be close to death and can never get normalized.  What a horrible disease this is.  

My right lobe hurts so bad, it gets worse at night.  IT gets worse when i take thyroid replacement.   My symptoms have changed so much over the year and a half, and now amazingly, the neck pain seems to be at the top of the list.  Im very confused after reading this post.  

[babynikki27]

Hi everyone had my thyroid removed 3 days ago, and wanting to learn all i can about learning about living without a thyroid

[Brucergoldberg]

Why did you have it out?

[blsdnsvd]

Wow..where is that doc located so I can move?? lol. I need his help badly!

[activemother]

I just found this forum and have much to share about my own experience with a TT ( Dec 09).  I am still trying to find the correct thyroid med and dose for me.  Fortunately,  My PCP, Endo and Gyno all colloborate well together.   In many ways I feel as though collaboration between drs  is critcal.  However, finding a drs who are willing to be partners in health might be a challenge.  Additionally, careful reaearch and selections of surtions may not always lead to the best outcomes based on the "small and unlikely" chances that something might to wrong.  
A little history...several years of monitoring "harmless" nodules lead to a 3 benign FNAs when there was a dissovery of hurthle cells.  TT was our final decision as having FNAs regularly was something that I did not relish in my furture.  At the time, I was told that thyroid replacement therapy is THE easiest and most effective drug on the market and that many people were on T replacement therapy and doing well.  I found who was supposed to be the best dr in the area... I ended up with a paralyzed vocal cord and sensitivities to the medications.  I have not felt like myself since the surgery .  To top it off, I LOVE to sing and have been deeply effected by the inability to transition smoothly toward the notes that I used to hit.  Yes, I am thankful for a benign result from my TT but still struggle in many ways.  I want to remain positive but feel overwhelmed at times.   Has anyone had these same challanges?      

[JazzMimi]

I would suggest to anyone having difficulty with thyroid replacement, read the book or go to the website "Stop the Thyroid Madness" by Janie A. Bowthorpe M.E.D.
A couple of statements from the back of her book for example:
"A patient  revolution has produced far better treatmet strategies that work."
"A large percentage of patients have adrenal dysfunction, low ferritin/low iron, excess Reverse T3, low B12 or Vitamin D, or more imbalances with need treatment."
Check it out, it works, many people are finally getting the help they need!

[sundodger69]

I have not had my thyroid removed but the doctor says I should as it is "suspicouis".  I have had two biopsies and they have been all over the map.  The few have been atypical but the doctor is hanging everything on the first diagnosis of being "suspicious".  My thyroid is working fine, I feel fine so really do not want to have it removed but everyone of the experts says it is the conservative thing to do so that I do not have to worry about cancer in the future.

What does anyone say about this?  Would you have it removed knowing it was benign after going through all you have been through?

Thank you.

[Danniabg]

Hiya
I discovered my nodule last Oct, it was observed for 6 mths and grew 8mm during that time.  I asked for FNA and was told it was painful and not reliable and was told I should have the nodule removed.
I found a good surgeon, and the intention was to have only the nodule removed, however there ws evidence of more on the same side of my thyroid and I lost 2/3rd of my total thyroid.  The nodule was benign.
Like you, my thyroid was working fine pre op which was July this year.  4 weeks ago I am now Hypothyroid, though when I asked the surgeon what did it mean to have that much thyroid out, he said it mean't nothing, so I wasn't expecting to have to be on meds for the rest of my life.

Lots of people I know tell me you just pop a pill and you will be fine, but reading some of the messages on here worries me that I won't be.  
I am fine at the moment, I have minor complaints so far.

I am so glad I have found this forum as the support is amazing.
I hope it will help you come to a decision about what you should do, all I know is when I had that lump in my throat and could feel it on swallowing, it woke me in the night coughing, and the worry it might be cancer, I just wanted it out.  But knowing what I know now, I would have opted to keep it for as long as I could.
I didn't want to lose my thyroid but that was the risk I took.

Good luck with your decision
Nikki

[QuinnyB]

I am 21 years old and had my thyroid removed in 2006 when I was 16. I was diagnosed with Hyperthyroidism when I was about 12, after going to several doctors who said that what I was experiencing was "normal." During the time that I went undiagnosed I was skinnier than a rail, had a resting heart rate of about 100, and my eyes and thyroid were bulging so far out that I don't know how any doctor could claim I was healthy. I even had to be taken out of PE, because my heart rate was so high and I was so frail.

I was finally diagnosed when I moved to NM in 2002, by a doctor who saved my life. I went on pills to bring my heart rate down and to suppress my overactive thyroid. The results were pretty incredible. I began to gain weight, my heart rate decreased, I could perform activities without feeling exhausted. However, the pills I was taking to suppress my thyroid hormone were not meant to be taken for long periods of time and could cause severe kidney damage.

in 2006, my physician, my family, and I decided that we needed to have my thyroid removed since it was still hyper and I could not stay on the suppressant drugs forever. We had moved to CA and found a WONDERFUL surgeon (Dr. Handsmen) who would remove my thyroid. It took just under 3 hours to have my total thyroid removed, and he left all my parathyroids intact. My recovery was smooth and I could speak right after the surgery. The only problem that I had was the anesthetic had made me nauseous, so I was throwing up after the surgery, which is VERY uncomfortable when you have an open wound on your throat.

My scar is now barely visible, and unless I point it out, no one notices it. I am very blessed to have had found such a great doctor to diagnose me, or I probably would have died. My surgeon was also wonderful and didn't harm any parathyroids which is incredible. I am also extremely blessed to have a mother that KNEW what was happening to me was not "normal" or a "phase."

Today, I am on 100mg of Synthroid. I am pretty exhausted and depressed and in a fog all the time. Its hard to get out of bed a lot of the time. My thyroid has been a constant struggle for me since I was 12, and it's hard to remember what it feels like to feel normal and healthy.

I noticed a port about a drug called Thyrolor, and I am making an appointment to see my physician ASAP to see if it helps me!

[petra04]

I just had half my thyroid removed 2 weeks ago and so glad I did.Results came back as follicular Adenoma with a small follicular varient papillay cancer.I also was diagnosed with Hashimoto's disease and now its all starting to make sense as to why Ive been feeling the way I have for most of this year.As for the other side,Im more of getting it all out as its already degenerating and incase theres more cancer also.I cant wait to get on some hormone treatment and get on with my life feeling good again.I too have been emotional,moody,heart palpitations,dry hair,weight gain,always tired,dont sleep well,brain foggy most days,I'm sick of it all and a single mother of four,not easy with this going on.Have a do xmas everyone, will keep posted.

[BLell]

I've been reading all of these posts for about an hour now, and I am totally stressed out! My husband was recently diagnosed with Graves disease about 5 months ago I started realizing huge changes in his personality and mood swings about 2 years ago, things that are very unlike him. So it made sense to find out he had a hormonal imbalance. This is a little off the medical track....but after reading all of these it seems like life after having it removed can be pretty rough. And he does not ever notice that he is effected, or acting differently. Should I be preparing for extreme personality changes?  

[wadiha1]

cathy i am happy that you felling good i want to tell me more iam on synthroid too but after 10 years i am felling very bad please let me know if you been taking any thing beside thylor

[paplow]

Does anyone have hot flashes from high thyroid?

[hana555]

Hello All,

I need help. When I was 18 years old (now 26) I was diagnosed with graves had two nodules, both benign but huge so the doctor removed them.  At times I feel so blessed for not having a more serious condition. But from then till now nothing has been the same. I recently took a blood test and the doctor told me I am now leaning more to the hyperthyroidism side. My hair is falling, I cant get pregnant, bathroom issues, restless sleeping, weight loss (maybe a little), heart pinching. Im scared all the time and nervous. I am in Canada, I have not had a doctor sit me down and talk to me, help me, advice me on what to do. All they want to do is shove pills down your throat and watch you walk out the door. Can you go from a hypo state to a hyper state over time? If so what needs to be done to stabilize these hormones? Please please please, any advice would be appreciated!

Thank you

[mobec]

i just came across this sight and would like to know what you uses for your nail and hair, mine is falling out like crazy, please help

[mll3247]

Well, I have taken the time to read ALL these posts and I am so glad I did.  I went for an annual maintenance in January and the nurse practitioner sent me to get a sonogram done because she felt a bump in my neck which I had not felt nor can I still feel.  Nevertheless, I went for the sonogram and the next day they wanted me to do a nuclear test because they found various nodules.  I went for the up scan a week later and it came out I have one cold nodule.  I went to an ENT Specialist who said that because of my age that cold nodule could be 40% cancer and his suggestion was to cut half my thyroid and during surgery, he would determine if the entire thyroid comes out if it is cancer.  Disgusted with the thought and scared/nervous/in denial I started searching for a second opinion.  I went to a Chief Oncologist well recommended for a second opinion and during consultation he did a sonogram himself and told me I have an enlarged thyroid and a goiter on top of the 1.2 cm cold nodule and his recommendation is to remove the entire thyroid (even if is not cancer since it may grow more).  I am scheduled for surgery in April, 2012 but honestly don't feel up to it since my symptoms are minimal (do suffer from anxiety and panic attacks already but control them with Librax and I do have a little trouble swallowing but nothing major and have been like that for years now).  I am not a pill taker (don't even take pain killers unless is absolutely necessary).  After reading all of these posts, I have come to realize that I may be better of NOT having surgery and if it is cancer, I think I would have other symptoms which are more noticeable....  I will pray about it more and meditate to see what God wants me to do!  Thanks to all of you for your input and I sure hope that those of you that already had it done, find a solution or the right dose soon.  If I end up having cancer, then I will have to deal with drastic procedure later but for now, I trust God will guide me in the right direction, he always does.  Thanks!!!

[Jcee22]

http://www.altsupportthyroid.org/t3.php

CHECK OUT THE SITE ABOVE!!!

25yr/male

I have been researching forever to figure out my problem.  I have had HEAD FOG, unable to FOCUS, muscle cramps, all kinds of wide range WEIRD symptoms.  This has been going on since I was 12.  I thought it was part of growing up.

This past january I had a TT due to papillary cancer.  They took 6 lymph nodes out of my neck.  Praise GOD my sister found my cancer doing an ultrasound.  she went to school for it and wanted to check mine out.  Guess I owe her, huh???  My doctors havent listened to my symptoms of the disconnected feelings, dream-state, always tired problems.  

UNTIL NOW.  After surgery I was given cytomel, a form of T3.  It immediately took all of those symptoms away.  I can't praise GOD enough for giving me the insight and motivation to keep looking for an answer.  

I hope this post helps SOMEONE.   PRAISE GOD!!

[onedaisy56]

Like most of you so glad I found these posts. In 2008, finally got pregnant and found lump in my neck at the same time. Lost the baby we tried so hard for. All test came back back incunclusive. Doctor went into remove half of thyroid. Suspicious of cancer removed whole thing and para thyroid as well. It was cancer. Had radiation. Put on synthroid which made me ill for the first two weeks. I have been living in missery ever since. It has even starting to impact me at work because I can get emotional. My husband and parents also notice the change and accuse me of not taking the synthroid. I have told the doctor that the synthroid is not helping all my symptoms, he of course is not concerned. I thought I was all alone, until I found all of you. Someone recently told me that they added a small amount of cytomel in addition to their synthryoid and it has seemed to help. Has anyone else tried this? Reading your posts makes me think I need to try and live different and not like my high energy life before cancer. I think I have set unrealist expectations for myself. It makes me mad when people say they understand because they have a friend or a relative that has thyroid problems. I don't think you can truley understand the misery until you have lived it yourself.

[gimel]

Please post your thyroid related test results and their reference ranges shown on the lab report so that members can assess the adequacy of your testing and treatment.

[Suzanne54]

Had my left side of my thyroid taken out feb 29th ... Was told I would not need any medication from surgeon ..... But thyroid doctor said yes I would ... My mass was large and instead of 1:15 hr surgery it was three hours ..... It has been one week and I have no energy .... My emotions are bad ... I had expectations of being back and going Monday and I just not moving from bed too much ... I am making up my questions for the surgeon on the 14th and taking notes on the various medications if they say I am needing it ... I am NOT a medication person and anything foreign going into my body ... They do not warn you of the after effects .... Although I couldn't sing anymore and had a lot of pain .... Another question is could someone tell me when I can start singing again .... I know baby steps but really had a crying day yesterday and I had no idea why .... Thanks :0)

[gimel]

Seems doubtful to me that the remaining part of your thyroid gland could produce enough thyroid hormone to satisfy your total requirements.  Also sounds like you are starting to feel some symptoms from the loss of thyroid hormone.  I think it would be a good idea to see if you can get some testing done to find out what your thyroid levels are.

The specific tests that would be best are for the biologically active thyroid hormones, Free T3 and free T4 (not the same as Total T3 and Total T4), along with TSH.  If the doctor resists testing for those, just insist on it and don't take no for an answer.   Free T3 is the most important because it largely regulates metabolism and many other body functions.   Scientific studies have shown that it correlated best with hypo symptoms, while Free T4 and TSH did not correlate.

Once test results are available, please get a copy of the lab report and post results and reference ranges and members will be glad to help interpret and advise further.

[jacqg13]

Hi  
As of tomorrow, it will be one week since I had a total thyroidectomy. (Friday March 2nd, 2012 was my surgery date). Although I did not expect a miracle, I was hoping on some improvement in my short temper. Well, that is still here. A little bit about my history, was diagnosed with Graves disease/hyperthyroidism in August 2011. I definitely know I was affected by the disease though for a lot longer than that. It changed almost everything about my personality and I fear it will be forever changed. I did have complications with my surgery which could possibly still be causing me the aggression. Like I said, my surgery was last Friday but I just got out of the hospital. My parathyroids were most likely bruised which can cause a calcium deficiency. However, my body went into a severe state of hypocalcemia after the surgery and went completely numb. It felt as if I had facial paralysis and my lower extremities were also numb with the occasional pins and needles. I went on multiple treatments daily of intravenous Calcium gluconate for the acute treatment. They let me go home after 6 days even though my levels of calcium are still below the normal limits with prescriptions of taking 5000 mg of calcium carbonate and 2 pills daily of calcitrol prescrition strength daily (and if my numbness gets as severe as it was before to go straight to the emergency room). I am 34 years old and find it very discouraging that I have become a short tempered person especially when that was never who I use to be before my thyroid hormones went haywire.
I have hope and faith that this will pass and things will get better, but tonight when I lost my temper so quickly, and then I started crying because I felt so bad, I fear that this is who I might forever become. I am single with no children and dont want to be this way forever. I am must include that I am a full time student, studying nuclear medicine technology which is a very difficult program and demands my time everyday. I have managed my Graves disease very well throughout my schooling and even scheduled my surgery to take place during my spring break so I dont miss any educational requirements. My family stopped talking to me last year right after I was diagnosed because they basically thought I was crazy and they didnt like that I had become so outspoken about my feelings when I had never behaved like that in my life. I would get very irrational around my family often. Im gonna have to say that my family were the ones who experienced my emotional outbursts. I didnt behave like this around other people. I dont think my family knew exactly or still know what I was going through medically, emotionally, and physically. Even after my being diagnosed I think they just felt it was best for them to stop talking to me. So basically what I am trying to say is that I know I have a lot of stress in my life without the Graves disease. Then the loss of my familys support (my three sisters support mainly) I think added to my hurt/pain. Which I think may have increased my aggression in this time span. I was never physically aggressive just very outspoken about my feelings
However, I want it to change for the better. Is there anyone on this board who has good advice.
They started me on 100mcg of synthroid daily since the removal of my thyroid. I feel no different since the surgery than I did the day before surgery. I really have no idea of what to expect. please any encouragement would be so appreciated!
Tomorrow will be one week and I am unsure if my hypocalemia is playing a role in my mood swings as well.
Jacque+Graves=angry

[louloucc]

Hi I am 30 weeks pregnant and have thyroidoxicosis and my consultant said I might have to get thyroid removed after I have my baby I am really scared about it I have had a very horrible pregnancy because of my heart racing etc..is there any reason for me to worry about getting it out. They have also just diagnosed me with graves disease and I am on neomercozol and beta blockers

[grizwald89]

Hi everyone,
I honestly don't know what to think. In October last year I was sitting on my break and for whatever reason my hand went to the left side of my throat and I found the lump, I looked in the mirror and yes could see it easily. I went str8 to the walk-in clinic, I work in a pharmacy so knew the doc and knew he was very good and very thorough, my gp moved to another province so had no doc of my own, next to impossible to get one. Anyway right away he ordered an ultra sound and blood work. The result was, due to the large size, no unfortunately I didn't ask, it was recommended to rule out cancer. So was now seeing a local surgeon.
The reason I didn't ask was because my family does not do well with cancer. I have lost my father (68) to cancer, and a brother (45) to cancer. Not thyroid, but it's amazing what goes through your mind when you hear that word. I saw my mom and remaining siblings going through what we all did when we watched my dad and brother become the shadow of the men they were and to be honest lost it right there, the doctor told me that if you must have cancer this is the best, it isn't aggressive and has a very high success rate, which is little comfort when I have that image in your head, but he didn't know that until after.
Anyway, 6 months later and the 3rd FNA biopsy, after 2 inconclusive ones, came back with follicular cells. I think he said cells I was too busy concentrating on follicular. I am now waiting to hear from Cancer Care Manitoba and I think he mention a pathologist, but not sure, for what he suspects maybe total removal of my thyroid, there is a smaller nodule on my right side as well. Like I said my family does not do good with cancer and I'll be 41 next week so it is a no brained if I have the choice. They will not know if it is malignant until after it is removed.
My TSH is 2.65 which apparently is normal, as of late October, but put on a lot of weight in the last year and cannot get enough sleep, but like some of you can't seem to get to sleep or stay asleep also my hair thinned out. My moods have been all are all over the place.
Anyway I just wanted to post, it really helps knowing there are others out there to help. My family and 2 very close friends that know are wonderful and made it clear they are there for me in anyway. I am so lucky to have them all. Please any of you not sure whether or not to have the surgery, please do if there is even the slightest chance you may have cancer. In addition to my dad and brother in watched an aunt and a cousin (only in his 20's) die of cancer, you do not want to go that way, nor do you want your loved ones to watch you, believe me.

[grammaof7]

Get off the synthroid. I took it for years and was miserable. I felt like i had the flu everyday. my doctor prescribed armour, but, at the time it was unavailable. I found out about compounded thyroid meds and my doctor prescribed that for me. Much better than synthroid. that is the worst thyroid medicine ever!

[Haigo]

I'm 25 years old and discovered a lump on my neck. Went to my dr and got blood work and an ultrasound of my thyroid. The blood work is totally normal, but the u.s. showed cysts and solid rumors all over my thyroid. (mostly on my left side) the largest being 3mm in size. I went to an ENT and he said that my left  thyroid needs to be taken out. I'm so nervous reading everyone's comments. I don't want any side effects. I'm happy, healthy and hard working. What should I do?!

[Danniabg]

Hiya Haigo
Try not to get too stressed out right now. Don't worry, a lot of have been where you are right now, and it's not all bad news ok :)

Basically, your story is the same as my own.
I had 2/3rds of my thyroid removed last July, and 6 weeks on I became hypothyroid.
I take my thyroxine everyday, and I don't feel any worse off.
In fact, if anything I feel better and yet I wasn't hypo before the op, though when I look back at symptoms I think maybe I was or at least borderline.

I read these forums and freaked out, especially this post.
But it doesn't have to be negative. Maybe I got lucky, as I quickly found the correct dose and I feel fine, and millions of others out there, who don't post here feel fine too.

All I know is, when I had that lump growing very fast in my throat and they didn't know if it was cancer, I wanted the fecker out!!
At first I was angry that I then turned Hypo, but it's ok.

I hope that you continue to be healthy and happy, it's just a case of finding what works for you, my thoughts are with you, good luck x

[Haigo]

Thanks for the encouraging words. It feels like the end of the world...for a minute. Haha! I hope surgery goes ok and that my body can adjust :) thanks again! You don't know how much I needed to hear that.

[MarchSol]

Hi,

I have been through thyroidectomy last yr November 2011, and since then the problem is that i have low calcium levels. i feel tired and always in muscle cramps. I am taking 150 mcg of thyroxin a day but still i am having a calcium loss. please help me im afraid i will get osteoporosis at anearly age . I'm 30 and haa 1 child. It is benign -Thank God. I am also taking 6 tablets of calcium vitamins plus 3 tablets of vit. D a day but still low of calcium. Please help my email address is alueta_mirasol***@****. Thank you

[darleanl]

I had the same thing happen to me  It is a alful feeling too.  I went for a blood test recheck day after release thought it was part of healing  They called me had me back in the hospital for 3 days  

[thryoidoutat2]

Hello there. I had a my complete Thyroid removed at 2 yrs old - now 45 :-) I'm taking a .25 mg of Lexapro and that helps with the moodiness, anxiety, depression for me.

[Marianna1982]

Hi Cathy!

I had a total thyroidectomy about 2 and a half years ago and about 2 years ago I have been suffering with anxiety, panic attacks, depression, brain fog and not feeling like myself AT ALL!!!  I have been SOOO frustrated with my the endos I've seen.  A couple of them said that it was 'all in my head.'  I keep telling them that I simply have not been the same person since my thyroid was removed but they don't listen to me!  I'm so afraid that I'll never be the same again. I would love any advice that you could give me!

Marianna

[djpklp]

Wow. Thank you. Just what I needed.

[sunnylover]

hi there my name is brittany and i am 21 and got my thyroid removed when i was 18 ..my story is very similar to yours besides i got a 2nd surgery to get the other half removed. now i dont have a thyroid..i am searching and searching for alternative things i can do for having no thyroid..there really is not any information..i have found eating raw vegis, fruit, tes, iodine, fiber, sea vegis,yoga and exercise is the best i can do to feel normal...lets keep in touch ...do u take synthroid?

[gimel]

This is a very old thread that keeps showing up occasionally.  Very few, if any of the members on this thread are active on the Forum now, so I thought I would throw my two cents into the discussion.  

Without a thyroid, there is really nothing that can replace the need for thyroid hormones (meds).  The key to feeling good is to take the right kind of thyroid med, in the right dosage to relieve hypo symptoms.  Many of our members, myself included report that symptom relief for them required that Free T3 was adjusted into the upper third of its range and Free T4 adjusted to around the middle of its range.  

A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not just test results.

If you will please post your thyroid related test results and their reference ranges shown on the lab report, members will be glad assess the adequacy of your testing and treatment.  

[MSD55]

I had a total thyroidectomy in 2007 and am adequately replaced with generic LT4.  Now I have received standardized instructions to hold my thyroid replacement hormone for 4 weeks prior to a test.  Can I do that?  How bad will I feel?

[sassyonesotrue87]

you become a whole different  person I too had a total tyroidectomy and was scared chitless of the sugery I was panicy and scared half out of my wits but now thats its over and put  behind me I am on levothyrxine I have a few bad things from it like itchyness and wellheadaches  but im doing well I dont know who this new person is im not all over the map my emotions and my thoughts are in normal range. before omg I was sooo hyper and you couldnt talk to me without freaking out geeze and now omfg i dont reconize me  im totally a different human being it was  a god sent when i had this done done be scared embrace it you will feel better two to three weeks after the surgery trust your doctor and your self stay postive have people with you durning surgery you will need that support and help for the first two weeks

[gimel]

How long ago was your TT?  If you don't mind sharing with us, what is your med and dosage and what do your test results look like for Free T3, Free T4. and TSH?

[Brucergoldberg]

what on earth are you having done?  are you having a uptake?  if so, why?

[sassyonesotrue87]

my total thyroid operationwas december 20 2011 believe me i was scared out of my wits  i am taking levothyroxine 75 micro grams ive ben on it since  january of 2012 my blood results that were taken is 2.4 and holding  its been staying there hasnt done any changing i dont like the levothyroxine but i can tell you this having the total thyroid operation i dont reconize myself im  a totally different person

[gimel]

Does the 75 mcg of Levo seem to be adequate for you, or do you have hypo symptoms?  It just seems like a low dose after a TT.   Is the 2.4 you mentioned a TSH test?  If that was the only thyroid related test done for you then you need to get some further testing done.  I'll explain further after you post your answers.

[blsdnsvvd]

it seems that most who have had a TT is in that "club" as well. I am also one who hasn't been "me" since the operation. My dosage started much lower than yours with slow increases. I have realized that every raise in dosage causes my TSH to drop and doesn't move the other numbers, therefore, I am fixed at 100mcg's. I stil have hypo symptoms and other ailments that makes life hard to manage. I have added lots of supplements to my daily regimen to kinda push me along.  

[gimel]

There is a difference among slow, or gradual increases in thyroid medication, and what I would describe as "glacial", in your case.  When are you going to fire that doctor and go to a good thyroid doctor?

[Brucergoldberg]

I actually feel pretty much the same after the TT.  Maybe a little better.  But what test are you doing that he is making you get off the meds?  Im with Gimel - is there something here we are missing?

[kl42]

i feel good!! 2 years later and a dozen dose changes and 3 med type changes!! after tt

[Brucergoldberg]

Im on a compound of t4 only.  I feel much better than on armour, almost got switched to levoxyl but fought my dr. and stuck it out on this compound.  I don't think any of us will feel "normal" again, but there are times when I forget i have this awful thing especially in the mornings.  Compared to the way it was before, this is much better.   Im with ya kevin.

[blsdnsvvd]

If i could find a "good thyroid doctor" that exists on this earth, don't you think that I would have one by now, LOL??? I have been without a thyroid for 2 and 1/2 yrs now and am on my second endo whichi i do not plan to go back to because i almost lost my religion on the last visit. Until i find a "decent "non tsh relieve" doctor" I will be on the right track but until then I will use my gp to monitor my levels, therefore I wll know where I stand as far as that is concerned.

[Brucergoldberg]

I think we are all never going to feel "normal" again.  Its like a 3 legged dog.  we all have three legs.  We will never know what its like to have that fourth leg back.  Once in a  while we may get close to having that fourth leg, and other times we may forget we only have three legs,  but we will never be 4 legged again.  

[AJWS6]

Wow ! this is a long thread, they should create a section for TT patients.  

Right on Kevin, I'm right behind ya.  Wonderful you've regained your life back.    

Yes, feeling run down, drained and tired, can make one's hope, feel like it's diminishing at times.  Countless patients recover and so will all of us, that recieve proper care/treatment, how long this takes, varies between patients.  

We have to keep fighting, pushing for what we believe in, eventually each of us will win the war :)  

[kl42]

yes you can get back to 100 percent!!!  even better than before. takes time and alot of tweaking doses. being on top of it

[cocosmama]

I dont' want to scare you, and I'm not a professional singer, but I can't sing like I did before my TT.  Its been 2 years since the surgery and I felt terrible telling my cousin that I just couldn't sing in her wedding recently.  However, I read that Rod Stewart had a TT years back and he said after 6 months he was ok.  You are a professional so you surely know vocal exercses that will help and I bet after some time resting you'll be able to get your voice right back.  Ask about scar tissue - I some times think that is what I'm dealing with.  Good luck! :)

[shy1966]

Hi Rynne, Im 45 yrs old, I had my thyroid removed in april,this year, I felt better for a while,  eat,breath better, mine started with a goiter,then nodules,it pressing on my windpipe and esophagus, stayed tired all the time,, but now,Im feeling tired all the time, the doc says my levels are fine, and theres nothing else that can be done,, Im so tired of being tired,

[Mc1956]

I had my thyroid out 4 days ago and didn't know really what to expect but after reading everyone's posts I'll be asking lots of questions when I see my doctor in 10 days. Had so many of the sypmtoms others have listed over the past few years but put it all down to menopause. Feel good at the moment except for the tingling and numbness between the calcium meds. Fingers crossed.

[Lolamae69]

Hi my name is Lola I am a singer also I had the same fear that you had but I went ahead and had mine removed @ Vanderbilt Dr. John Phay he is like in the top 10 in the country I could not sing for year or more but my voice did come back with alot of pratice and some vocal training but I find when i try to sing really loud like i use to my throat feel irritated . I sometimes wish I had taken the radio active pill to kill it off instead of surgery just search you heart you'll do the right thing for you.

[von84]

Hi :)
I would suggest you speak to your doctor and up your dosage. Give it 2 months to kick in and see if it makes you feel better. If that doesnt help i suggest trying Armour - was the best thing i did!  Read up about it. Lots of great info on the net. P.S - dont worry too much about what the blood test results show. Not every human being is going to feel normal being within the 'range'. Everyone is different. It all depends on how you feel.

[Ashkars]

Hey well I'm 15 and have been diagnosed with multiple thyroid nodules, so many that they can't even count and the biggest being 1.7cm with cancerous cells, I have an overactive thyroid and they have said that I may have thyroid surgery in January even though the nodules are growing- I'm really worried that it will be hard on my future as so far I'm constantly tired even when I wake up, I can't sleep till 4am and I can't concentrate at all in class. It's really taking its toll and I'm rather worried about all this. Will I be able to have kids when I'm older? Will I get my energy back? My concentration? Will my blood pressure be at normal range? I'm In year 10 next year and have a couple of year 12 subjects and if I can't focus they will take me out, it's frustrating. I'm trying so hard yet I'm not getting anywhere... So many questions and no answers.

[yesstream]

I had my thyroid removed 8 years ago. I was told I had thyroid cancer and that I will be fine after the surgery as long as take my medicine. I had complete trust in my doctor. Surgery went well. Unfortunate thing was the timing. I was going through very volatile divorce at the same time. I experienced chocking betrayals from many "close friends" as well. 2 month after my surgery my divorce was finalized and i was left dealing with the after math. I fell into morbid depression, unbearable grief and anxiety attacks etc. It seemed logical to be so devastated after what i went through. It was very hard to tell how much the removal of my thyroid contributed to my morbid depression. At some point  I started to notice how my grief and depression became too disturbing to many witnesses. I noticed my friends loosing patience with me... I noticed how people where disturbed by the fact that it has taken me so long for me to get over the loss I experienced... I have noticed how even my closest family is unable to relate or understand my depression that has completely changed who I am. I simply don't feel like myself. I have suffered from suicidal thoughts for over 7 years now... it's almost daily... and it's because how I feel. I feel dead. I do snap out of it now and, thank God. I do have moments when i feel great but i know I am in the swing. I am still learning to cope. It has been something that I at first refused to get used to and I held on to a hope that it will pass and i will start feeling better. But after 8 years of living as my own shadow, as a ghost... i am slowly coming to accept that I am living with disability. I feel that after my thyroid got removed, I developed mental disability. For 30 years of my life I had no idea, no way of understanding why someone would want to kill them selves. I was full of joy and energy, enjoying my motherhood etc. I was on successful path. I had no problem getting jobs. I had ambition. After the thyroid was removed... I slowly lost my ambition. I have developed significant stigma in the eyes of most everybody. there are very few people left in my life who remember me and who love me unconditionally. for the most part I feel incredibly lonely and isolated and too often absolutely terrified. My memory has never been great, it has always been anecdotal . but after the surgery, it's no longer even funny. I have no self-trust or self-confidence left. I have been on a free fall for past 8 years... I used to blame it all on my ex and the divorce... but is it really just that? the more I research and study the more it seems to me, that the reason why I did not have the strength to face my life's great challenges, was the fact that i have no thyroid. the anxiety and depression  I was experiencing, crippled me. I have been taking my medication all along. My body weight has not changed. I am slim and fit looking as always ( super grateful for it! ). i have noticed some hair loss. my hair has thinned for sure but my skin is soft. no constipation. I have enjoyed active sex life with my partner(s)... i have ended number of relationships myself. I have not really attracted the kinds of people I could spend rest of my life with. I have been in relationships not to be alone... since i am most terrified of being alone... because of my depression and anxiety... it has been a nightmare... 8 years of nightmare for me.  have watched my life falling apart... basically my life have been ruined ( for the lack of better expression ) and I am struggling great deal with guilt... because i can't help but to blame myself in all of it... now and then, I can step outside of myself and see the bigger picture. Under different circumstances my life could have been different. But New York City ( where i live) is very different from where I grew up. In New York everyone is out for themselves. You are sick. Too bad. And I am saying it without any resentment. We don't have society and civilization that would prevent people falling through the cracks. I am viewed as costumer. But as a broke individual ( i feel broke physically, emotionally, spiritually which has led to being broke financially) I simply don't count anymore. It's a point where one can step on a spiritual path. I am facing my death after all. I have been face to face with my death for past 8 years. I am like a tiny grain of sand in the whole picture

[Brucergoldberg]

Great post YESSTREAM.   im 8 months out and just living with my family is quite the challenge.  I can relate to everything you have posted.  I am 8 months post op, but dealt with this for another 2 years prior.  I resent almost everyone in my life for not having any compassion for me during my "bad times" and instead calling me names or telling me that they had a long week, or "i am tired too"  etc.   My ears ring, im shaky, i am irritable, i am tired most of the time and i just want to sleep.  I get excited about some things in life, but frankly if a giant bomb hit the earth tomorrow, I dont think I would care too much to be frank.    Sad, but true.

[Brucergoldberg]

I just sat down and read this thread and all 160 responses for the first time.  Seems a lot of people have come and gone on here.  Looks like a lot of people left and i pray its because they got better.

For me i didnt have much choice.  I had painful thyroiditits, I couldnt swallow and just the pain from wearing a t-shirt was very taxing.  I went from 180 to 156 pounds and the only thing that showed up was the hashimotos.  The dr's were perplexed and half of them said i should have the thyroid out, half said i was making a mistake.    Well here i am 7 mos later, the only thing that has changed is the pain is gone.  I still get the waves of anxiety every day and I literally resent almost everyone who tried to get close to me.  My focus at this point is survival, making enough money to support my family and to keep them from all leaving me.  Honestly if i was them, i would of been gone a long a$$ time ago.  

[troper31]

I am sooo apprehensive to get this thyroid excision. I want my thyroid! I have no nodules and have been hyperthyroid since '06. Meds dont work. We've been going up and down for years. I am of sound mind and body besides my damn thyroid being overactive -_- all this anxiety talk and panic attacks and sleepless nights has me worried. I bought a book about thyroid treatments written by a woman that had hers removed and said the same things a lot of you guys were saying about symptoms after the surgery and she regrets even having it done. I never read the book in its entirety but before I make a decision, Im going to do that. ...Im 31, no kids yet, and I want them. I know that being overactive is dangerous to a pregnancy... ugh. Well, maybe Ill just remain having furry children (my pets). I have also been to a homeopathic doctor that tried treating me naturally, but I kept with that for about 6 months. I wonder if I change my diet and lifetyle entitlrely i it will have a positive effect on my thyroid. Does anyone know about a special diet for Grave's Disease? Man, I think I may just contact Dr. Oz... later guys!

[bellsmom44]

Hi I just had my Thyroid taken out yesterday. I have a little pain but other wise i feel ok. Oh and I have a slight headache. I haven't had much time on meds yet to comment but thought you should know you aren't alone. I'll keep you posted.

[Danniabg]

Hiya
I'm glad that you're not in too much pain.
You may find it tiring to talk/sing early on and it could last some weeks months even, but take it easy.

What medication have you been put on?

[melissa2007]

Hi Everyone

I have my thyroid removed due to cancer for 1.8 mm.  I had surgery in May  3, 2012 of this year, and had radiation done.  It was not fun at all. I lost my voice but my ENT told me that I should get my voice back,  I am  slowly  getting my voice back but not 100 percent,  I cannot sing like I usual yet..   I am currently taking .112mg(112mcg) Levothyroxine.  I feel ok, but i feel charles horse on my legs, and I my hands sores some day and some day I don't.I feel tingling on my hands too.    I get panic easily which I don't like.  My endocronologist keeps telling me that my thyroid is right but I don't feel the same as I use to be.  I am taking two calcium  morning and night and one calcitrol.   Sometimes I don't even know if that the medicine right for me or not.  I just don't feel the same person anymore.  I am glad that somone like me is voicing out their concern like me.

[susyq400]

hi i had a total thyroid removed and they damaged both sides of my voicebox, cant talk breathing and swallowing is difficult. so please be aware although rare it could happen.

[susyq400]

hi i had a total thyroid removed and they damaged both sides of my voicebox, cant talk breathing and swallowing is difficult. so please be aware although rare it could happen.

[Leannazuk]

That is absolutely beautiful. I have been struggling for the past year my TT was in august 2010. Surgery was good, voice not bad at all and I am a teacher so need to use it all day long, initially it ached especially when teavhing physical education because I was raising my voice, even now if I sing( and I sound like a cats chorus haha) it aches and that's 2 and a half years on. My doctors have reduced my medicine down because according to my blood results for 18 months I had too much thyroxine. Now I have gone the other way and I am hypo again, I feel depressed, tearful, I don't know who I am anymore??? I either fall asleep at 6pm at night and wake at 3/4am or I don't sleep at all. I can not remember the last time I had a decent nights sleep. I am constipated and have very dry skin and I have now developed an irregular heart rhythm along with chronic pains in my hands and feet, I have also been recently diagnosed with Raynauds Disease and low vitamin B12,( very low vitamin D since surgery). I feel like it's a constant merry- go-round!!! First one thing then another. My family I am sure are sick to death of me always saying " I don't feel well, I don't have energy to do that etc etc etc". I'm fed up with myself.

However, I am a true Aries and I am wilful and stubborn and NO way am I letting this bloody disease control me, I just need to get my levels balanced perhaps a change in medication, I am on levothyroxine 100mcg for 4 days and 75mcg for 3 days, this is clearly the wrong dosage for me!!!!! My TSH is 0.6 and T4 is 14. Whereas it was TSH 0.17 T4 17/18 (they say this is too high). After surgery I had TSH of 46 and T4 8, I was very I'll then oh my never want to feel like that again!!!! I have gained weight and can't lose anything I've always been tall and slim but it's all gone on round my bum and thighs and makes my pains were because I'm heavier!!!!

Anyway my mum found this site for me, I am 40 years old and feel like I am 70 seeing endo on Friday 4/1/13 so here's hoping that this new year gives me back my old self pre- hashimotos, when I could laugh, smile and enjoy being alive because as the lady before said it's like just existing.

Your post is inspirational especially when you find yourself wondering "will I ever be me again?". Much love,peace and health to you all, let's beat this blasted disease together!!!!!!!
Love leanna

[Danniabg]

http://www.*************************/t4-only-meds-dont-work/

http://www.*************************/recommended-labwork/

I can't remember if we can post links or not, but you need to check out the site I've linked above. Also if on FB join the Stop The Thyroid Group on there as there are many people suffering before of mistreatment/misdiagnosis.

Nikki

[Danniabg]

Ok I see 'stop the thyroid madness' got blocked out. :(
You can google it though of course :)

[nobody321]

I was reading these comments and saw yours, i'm 16 and had half my thyroid taken out last year because of a nodule, and when i had the biopsy done it came back inconclusive too, all ended up coming back benign. Anyways, my question is, almost a year after, did you ever end up having pain quite a bit above the scar? And I feel breathless all of the time, plus I've gotten bad anxiety... Don't even get me started about the mood swings. Did you ever figure out if something else was wrong? Or did/do you have these symptoms too?

[gimel]

This is a very old thread and I doubt that you will reach Metrogrl.  So let me try to substitute.  

Since you had a semi-thyroidectomy, it is very likely that your symptoms are related to being under medicated.   If you will please post all of your thyroid related test results and reference ranges shown on the lab report, and tell us about your medication and dosage, members will be better able to assess and advise further.  

[jewel229]

Hi Leannazuk. I got my thyroids removed in May 2011. I had thyroid cancer and nodules on my left thyroid. I went to Atlanta to a doctor that does endoscopic thyroid removal. The surgery went well and I've been cancer free for almost two years. My advice to you is to get on vitamins with your thyroid medicine. You have to wait 4 hours after you take your thyroid med before you can take vitamins. I've researched these vitamins but make sure you check with your doctor as well. The vitamins are:
Calcium 600mg chewables (2 daily)
B Complex
Vitamin E
Biotin
Prenatals because this vitamin gives you all vitamins needed for women
Men should take a multiviatmin.
Papya Enzymes (chewables) Enzymes helps to digest your food properly
Coconut pills
Please check with your doctor before you take extra vitamins. But I can a difference with my skin, my hair has never fallen out after radiation.
Good luck to you.

[meme199]

I had my thyroid removed 10 years ago after having problems for 30 years. It was cancer at the time I weighed 199 pounds and 5 weeks after having it removed I weighed 246.5 they put me on synthroid 200mcg and have been on same doseage. I have been losing weight and was down to 190.5 pounds on 2/11/13. On 2/13/13 about an hour after taking it at 5am about 6:30am I woke up having trouble swallowing it cleared up but happened again on the 14th but worst. Went to the doctor same day my weight was back up to 199 had blood work done they called me and said I needed to drop my doseage to 175mcg and not to take it on the 15th but start new synthroid on the 16th. Started it then and am down to 191 but feel sick on my stomach and am having chest pains every time I eat.Help Please.

[gimel]

What was the reason given for dropping your dosage?  Was it based on TSH test results?  Please post your thyroid related test results and reference ranges shown on the lab report.

[djj1223]

I had pains and trouble breathing when I exerted myself much at all.  I had a CT scan done last week & they found a mass.  5.2 cm long & behind my sternum.  Not sure of the width, because originally it was 3.4 cm wide, but that was just on one side.  When they did the biopsy, they found a bigger mass on the other side as well.  I'm waiting for results.
I am told that I will have to have my thyroid totally removed.  Nothing I read is encouraging.  But my sister-in-law has been on thyroid meds for about 40 years & is doing just fine.  I have high hopes.  I'll keep reading and keep you posted.

[Marie0456]

Thank you for your post. I have been Hypo for 28 years. Last fall my T3 plummeted and I was diagnosed with a tumor on my Pituitary gland. They have me on meds. I was thrilled to here it can go away. Everything I have read before you said it never goes away and people eventually have to have it surgically removed. As for Synthroid, insist on the same brand of whatever you use. Do not allow them to substitute generics or your numbers will be all over the chart. Hypo and Pituitary problems can cause depression. Just an FYI.

[Barb135]

Not everyone requires a brand name of levothyroxine; some do very well on generics.  I actually did better on generic levo than I did on Synthroid.

[djj1223]

I do not have cancer!!  Yea!  Now, just waiting for surgery to be scheduled.

[Barb135]

CONGRATULATIONS................ Awesome news.

Best of luck and do keep us posted.

[sikasadog]

You will never feel "normal" on Synthroid.  I couldn't get the doctor to give me anything else either but since having had my thyroid removed, and going to a naturalpath, I now use Naturthroid (or westhroid) and it is great since it has all the Ts (3, 4 etc..). The regular doctors don't want to give you this cuz it is too hard (they say) to regulate. So I suffer because they are too lazy to help????? gimme a break.

[Brucergoldberg]

Speak for yourself.  There are tons of people that feek great on synthroid.  I feel much better on synthroid in less than a month than i ever did on naturethroid or armour.  Everyone is different.

Some people convert fine on synthroid.  Others dont and need t3.  

[roxy333]

Had my thyroid out due to a 4cm nodule and compression syndrome. Started on synthroid at 137 mcg now on 175mcg. I am larger than when I was 8mths pregnant. My TSH was 40 2 mths ago and is now 12. I cant lose weight despite working out like a crazy person. I am worried the cancer may return because it is important to have a TSH <1. Any ideas tips? What should I do? Is this normal? My surgery was in Nov 2012 its now April 2013. Shouldnt my TSH be less than 12?

[tiffany360]

I had my Thyroid out almost 2 years ago, they thought I had cancer and it came back that I didn't. When I had my check prior to the surgery the doctor said that my thyroid was very enlarged. I felt different, gained some weight, was very emotional, and had no energy.
Now that time has past since the surgery things are going good. I started out on the lowest medication, and over a 6 month period I was bumped up to the highest of 200mg. I have been on the 200 mg now for some time and it seams to do the job. But there are times that I don't have a lot of energy. I go back every 3 months to get my levels checked, and changed my diet.

[gimel]

Please post your thyroid test results and reference ranges so that members can further assess the adequacy of your testing and treatment.

[Brucergoldberg]

You may need some t3.  Some convert well, others dont.  

sidenote:  drives me nuts when people come on here and try to say that anyone on a certain drug will never feel well.  Speaking from my experience it may take a little trial and error before you find the one that works for you.  I have been on everything, they all make me feel bad but synthroid has made me feel the best of the worst.  So i say "stop! The Stop the thyroid madness posts!   No everyone does well on armour.  Not everyone does well on synthroid.  Reading through this post its almost like their are drug reps in here and its really sad.

[Danniabg]

Shouldn't it be all about choice?
Sadly regular Dr's do not give us that choice.
I'm in agreement that NDT doesn't work for everyone, just as T4 doesn't either, but there wouldn't even be this argument if only we were all better informed as patients.
I can only go by personal experience and share with others so they're better informed. It's so much easier to go along with the routine treatment though I have to say, but I just got so sick on it so I'm glad I found an alternative.

[Brucergoldberg]

agreed.

i still feel like crap, but personally synthroid has worked for me better than armour.  But i know im hyper.  hoping for a decrease soon.

[buenolawless]

I do not know if you will read this post. So many years have past since you wrote the profound words that struck a chord inside me just now. I am new person to this site. It was three years this week since my total Thyroidectomy. I lived with Graves disease for far too long therefore was pretty much forced to have my thyroid removed by my Endo. Now three years later 34 years old, 200 mg of Synthroid , 5mg of Lyothyronine, folic acid, vit D, high blood pressure, mycrocytosis, and 60 pounds heavier. Not to mention my blood sugar is off!!! Finally my Tsh t4 t3 levels are at low level of normal. Why can't I lose weight then despite the constant heavy workouts 4-5 days a week and healthy diet. My Primary Doctor said the other day "maybe you should accept that this is how heavy your are suppose to be and deal with it" then hearing from my Endocrinologist that my levels are almost normal. What is a girl without a freaking thyroid to do???? Finally my Endo agreed after three years to put me on Armor. Have not started it yet however I am hopeful. I have to say that it feels really good to talk and see that I am not alone. Any suggestions from those who understand would be so wonderful. Namaste ~ Audrey

[Brucergoldberg]

Well I personally can tell you I  certainly feel better after my TT than before my TT  (those months leading up).  For me , it was a personal decision. I didnt have to do anything, i didnt have cancer, graves or nodules.  I just felt horrid, couldnt take medication and my throat hurt.  I think having it out was the right decision for me.   you are 3 weeks out.   At 31 days I felt the worse, and then gradually a little better.  I was at maybe 30% then.  Now im more like 65%  with 100% being perfect.  Sometimes I can taste the normalcy, and every week things seem to get closer in the mirror.  Have patience.   Once you get balanced, your numbers come in for a landing you will feel better and chances are the weight will go out the door.

[ChitChatNine]

I feel better than with my own thyroid. I may not be in the majority, but this is how it's been for me and I'm going into my 6th year.

C~

[Brucergoldberg]

chit chat

what are you taking?