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