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

[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!