# thyroid removal



## runninginthewind (Jun 5, 2016)

I am not sure where to begin....I was diagnosed with having hypothyroidism about 30 years ago. I have been stable on my medication up to three years ago. Since then my levels have been all over the place. I am currently being followed by pcp because I couldn't get in to my endo. I am currently in the hyper range and my latest test result are as follows. Free t4 2.05 - tsh .005 - t3 6.2. I am currently off any medication for my thyroid and will repeat blood test in two weeks.

I am really just very tired and frustrated. I am actually sitting here writing this and my heart is racing and I am having palputations.

My question is has anyone heard of having your thyroid taken out because you can't get it stable? If so what have been the results?

Thanks - would love to hear from someone.


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## Lovlkn (Dec 20, 2009)

Have you had TSI and TPO antibodies run lately?

To answer your question - yes, some people do have their thyroid removed due to inability to stabilize.

I was diagnosed hyperthyroid and struggled staying stable, labs monthly and dose adjustments often, then one day I spiked hyper and this was 4 years into anti thyroid med's. SO I decided to remove my thyroid. Once I got my replacement dose set, and a few other things such as low ferritn, low vitaminD, and adding Cytomel I am happy to report I have been stable for almost 7 years.

I have read about a few hypo people doing the same thing. Once the thyroid is removed, the up's and downs that go with it tend to go away.


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## jenny v (May 6, 2012)

10 years ago I started out hyper, then went hypo and then about 3 years ago my thyroid bounced back and forth between both with no warning. I tried for over a year to stabilize and I never could, so I had it removed. My thyroid was a beat up mess of scar tissue by the time it was removed and my surgeon said it should have come out years earlier. Sometimes after years of your immune system attacking it, your thyroid just goes nuts. It's dying off, but it's still trying to put out hormone, so it's all over the place.


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## runninginthewind (Jun 5, 2016)

Everyone,

Thanks for the responses. I have been asking to have my thyroid removed and I am told "NO". I am at my wits in. I guess I will have to put my foot down. Can someone tell me was it your suggestion or did your doctor suggest it?


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## joplin1975 (Jul 21, 2011)

Sometimes you have to work the system a bit. Mention that you are having difficulty swallowing or that you have a constant choking sensation.


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## Lovlkn (Dec 20, 2009)

> Have you had TSI and TPO antibodies run lately?


Can you please answer this question.

My surgeon told me if she wants to remove a thyroid the insurance companies never deny.

Can you go to a surgeon without a referral? My thyroid surgeon was a general surgeon who specialized in endocrine surgeries.

If you complain about your inability to maintain stable they would probably agree to remove it.


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## jenny v (May 6, 2012)

Have you ever been to an ENT? That's what got the ball rolling for me--endos forced me to keep it for 10 years even when I was feeling awful and an ENT was the answer for me.


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## runninginthewind (Jun 5, 2016)

Okay I am back with an update on me. I finally got to a new Endocrinologist and she diagnosed me with Graves disease. She put me on Methimazole two months ago. I went back today for a followup and while I feel somewhat better I am not 100%. My new blood work showed that my levels have dipped slightly into back into the hypo range. She also did an ultra sound on the thyroid. Well she said, that my thyroid gland is still very much in the hyper stage and that she was referring me to a surgeon for removal. I can tell you I sat there in disbelief. I have been asking for this for years.

So here are my questions:

What is the recovery time?

I know that I will be synthyroid the rest of my life but since the thyroid will be removed does your levels stay stable in the hypo range? Or can they still become unstable?

Thanks for your help.


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## joplin1975 (Jul 21, 2011)

Recover time varies. My doctor insisted that I take two weeks off, which I did, but I was taking calls and answering emails two days after surgery. You can not lift anything heavier than 25 pounds for at least 10 days. The bigger issue for me was feeling "off" -- in ability to concentrate, fatigue, just generally feeling BLAH.

People who have had their thyroids removed do generally stay more stable after surgery, but you will need regular (bi-annually or annually, once you find your dose) blood work just to make sure you stay stable. Changes in weight, life style, or hormones as you age can impact your synthroid dose. I've been on the same dose for five years.


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## jenny v (May 6, 2012)

Also, know that Synthroid is not your only option. It works great for some, but others do well on medications like Armour or Westhroid or Naturethroid.


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## AudreyCastle (Nov 30, 2016)

I don't know about the thyroid but yes my friends tonsils were removed since she every year in the winter season had problems with the tonsils and it was getting difficult for her to eat anything.


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