Living without a Thyroid Gland

[sophiesudane]

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.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 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.