Living without a Thyroid Gland
by sophiesudane, Oct 16, 2007
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??

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Member Comments (231)
by airforcemomof2, Oct 16, 2007
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!

by dbdnyc, Oct 17, 2007
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.
by Rynne, Oct 18, 2007
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.
by sophiesudane, Oct 18, 2007
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.
by margherita, Nov 12, 2007
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.

by ChitChatNineBlank, Nov 12, 2007
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!!!

by ChitChatNineBlank, Nov 12, 2007
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.

by serenity_nz, Nov 13, 2007
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 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.
by Josic, Nov 13, 2007
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