I have Hashimotos. I'm having total thyroidect... - Thyroid UK

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I have Hashimotos. I'm having total thyroidectomy. If my thyroid is removed, will the Hashimotos cause a attack on other organs in my body

hashimomma profile image
17 Replies

Affect of thyroidectomy and Hashimotos on other organs in the body?

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hashimomma
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17 Replies
greygoose profile image
greygoose

No, I think it's pretty certain that Hashi's dies away with the thyroid. It doesn't attack other parts of the body.

But, having a TT for Hashi's is a bit drastic, isn't it? Why would you want to do that?

hashimomma profile image
hashimomma in reply to greygoose

Thank you so much for your input. I really appeciate it.

I have a large nodule on the left side, 6 x 3.3 x 5.2 cm. I have had ultrasounds done every year and needle biopsies every other year. This year, the biopsy came back "suspicious for follicular neoplasm". I also have small nodules on the right side that have remained stable over the years. I was planning to have a total thyroidectomy next week but now I am having some reservations about the total thyroidectomy. Instead, I am now considering a removal of the left side only. If I do that though, I am taking my chances on the right side nodules growing. I'm torn about what to do.

greygoose profile image
greygoose in reply to hashimomma

Yes, I see what you mean. In that case, it might be better to have it all out in one go and be done with it. But, it's not a situation I've ever been in, so I can't imagine what it feels like. I take it your doctors want to take it all out now?

hashimomma profile image
hashimomma in reply to greygoose

Yes, the recommendation is to have the whole thyroid removed.

I really appreciate your input. Thank you.

greygoose profile image
greygoose in reply to hashimomma

You're welcome. :)

Rosebud1955 profile image
Rosebud1955 in reply to hashimomma

My situation is similar to yours. I suffered for 12 months before I literally forced my doctor to do ultrasound. The ultrasound results suggested a biopsy, which I did. I had several nodules which were calcified(still don’t know what that means). The right side highly suspicious for papillary carcinoma. After being referred to a very experienced surgeon, he suggested a TT, nothing less. He said a high percentage of patients return for completion thyroidectomy in later years. It’s not always obvious until after surgery, especially if there is calcification. Most times the remaining thyroid does not produce hormones. I agree, it’s useless keeping it if it does not function properly, especially when cancer is suspicious.

I removed all in August 2017. I felt good for 2 weeks until the follow up endo interfered and lowered my dose because he claimed my tsh was too suppressed. I did not know about this forum, so I cooperated. It has been a nightmare for me since then. Thank God for this site, I gained knowledge and confidence to be my own advocate. I’m slowly improving with the help of cytomel (t3). I get my prescription from the endo and regulate my own dose. I now take t4 & t3. Now slowly shedding ounces. (baby steps). The fatigue has disappeared, just left with a few symptoms.

So, get all the advice possible and make the correct decision. It’s not always easy, you’re in a better position than I was in, at least you discovered this site prior to surgery, I only discovered it a year after surgery. I value the advice and knowledge from everyone here, I trust them more than I trust any doctor.

Good luck, recovery time for the surgery is short, no pain after surgery. The only problem is with the replacement hormone after surgery. Yuo’ll get all the help you need here.

hashimomma profile image
hashimomma in reply to Rosebud1955

Thank you for your post and writing about your circumstnces and experiences. It's very informative and it is helping me to make my own decisions about surgery. I am glad that I found this site too. Everyone has been great.

I was just recently put on t3 and t4 so hopefully my "roller coaster ride" will be short lived following surgery.

Do you have Hashimotos? I am concerned about what that looks like with no thyroid, post surgery.

Rosebud1955 profile image
Rosebud1955 in reply to hashimomma

Not sure if I had hashi, doctors would address my questions after surgery. Blood work before surgery was not explained to me, I was not as knowledgeable as I am now. Thanks to all these lovely people on this site, i’m much smarter now.

I have chronic Lyme so I most likely had hashi, they go hand in hand. I suspect because of the hashi, i’m having difficult regulating my doses.

hashimomma profile image
hashimomma in reply to Rosebud1955

How do you feel now? Do you know if you have high TPO, post surgery? Do you stay away from gluten? You've been alot of help. Thank you.

hashimomma profile image
hashimomma in reply to Rosebud1955

Thank you for writing about your experience and circumstances. All the information I am receiving is really helpful. I am so glad I found this site. Everyone's input is so informative. I'm glad to hear that your surgery went smoothly. I hope mine goes as well. Do you have Hashimotos? If so, do you know if the removal of the thyroid affects the Hashimotos?

hashimomma profile image
hashimomma

I have a large thyroid nodule on the left side. This year's needle biopsy came back suspicious for cancer. My doctor recommended a total thyroid removal.

hashimomma profile image
hashimomma

Thank you for your advice. I will make sure I have the appropriate meds before the surgery. Your input is very much appreciated.

humanbean profile image
humanbean

How do you feel?

If you have had thyroid function testing done at any time that you felt well, make sure that you get a copy of those test results and keep them safe. After surgery you will probably want to duplicate your results as closely as possible.

If you don't know what thyroid results made you feel well you won't have a clue what to aim for on treatment.

If you feel well now, then get tested before surgery. If you live in the UK you can get finger-prick testing done via the post. This test is the minimum you need :

medichecks.com/thyroid-func...

but there are more comprehensive (and therefore more expensive) tests available :

medichecks.com/thyroid-health

This is a very popular test package :

medichecks.com/thyroid-func...

And you need to know about this - it might save you money :

healthunlocked.com/thyroidu...

You can only get money off if the test you choose is not already on offer.

Why do you need a thyroidectomy for Hashis? It is eventually self-limiting in that the thyroid will be destroyed and you will be permanently hypo (as you will after the thryoidectomy). As far as I know TPO and TG antibodies don't attack anything else, but any autoimmune disease tends to make it more likely that you will have others. You'll just be completely hypo.

hashimomma profile image
hashimomma in reply to Angel_of_the_North

I am having a thyroidectomy because the needle biopsy came back "suspicious for folicular neoplasm". I have had a large nodule on the left that I have been monitoring for 10 years. In light of recent biospy results, the doctors are recommending a total thyroidectomy. I also have Hashimotos. I was concerned about what the Hashimotos would do if the thyroid was gone. (Somewhere, I read that the Hashimotos disease will attack another organ after the thyroid is removed but I don't know if that is true.)

Angel_of_the_North profile image
Angel_of_the_North in reply to hashimomma

Graves antibodies do, but I don't think there's any evidence to show that TPO does.

hashimomma profile image
hashimomma in reply to Angel_of_the_North

Thank you for the info and your input.

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