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EndocrineWeb Community Advice

Hashimoto's After Thyroidectomy?

From: hyposherry - 48 weeks 5 days ago

Warning - long!

I had a total thyroidectomy because of thyroid cancer. I also have(?)/had(?) Hashimoto’s thyroiditis. I am trying to understand if/how Hashimoto’s can still affect me now that I don’t have a thyroid gland anymore.

I guess the first question is do I still have Hashimoto’s thyroiditis? After all, I no longer have a thyroid gland for my autoimmune system to attack and my understanding is that Hashimoto’s thyroiditis attacks only the thyroid gland. So, it’s not like Hashimoto’s thyroiditis is going to move on to another gland or organ like my adrenal glands or my pancreas now that my thyroid is gone, right? (I know Hashimoto’s encephalopathy can attack the brain, but that’s a different Hashimoto’s).

In addition, thyroiditis is defined as inflammation of the thyroid gland. So is it possible to have thyroiditis without a thyroid gland? I am not trying to split hairs here. I am really trying to understand if I am still subject to Hashimoto’s thyroiditis.

On the other hand, if Hashimoto’s thyroiditis is defined as the presence of antibodies to thyroid antigens, then maybe I still have it. I don’t know. Though those antibody tests were positive at one time, to my knowledge, they have not been run again since my thyroidectomy.

For the sake of furthering the discussion, let’s say I still have it. What can it do to me? It can’t have any effect on my thyroid gland because I have no thyroid gland. So I have an autoimmune disease that affects a gland that I don’t have. Sounds like a non-issue to me. Is that wishful thinking or does that make sense?

I know that people who have Hashi’s are more prone to have other autoimmune diseases as well but, so far, knock wood, there’s no sign of any.

Obviously, I have a boat load of problems due to the fact that I don’t have a thyroid gland to produce the hormones that control practically everything in my body. That’s why I don’t want to borrow trouble. If Hashi’s can no longer affect me, then that is one thing I can take off my plate. But if it can, for example, affect the way my body uses the synthetic T4 and T3 that I take (levothyroxine and liothyronine), then that is something I need to know.

I have not been able to find reliable, science backed information about this. Almost everything I can find about Hashimoto’s thyroiditis is written about its effects in people who still have their thyroid gland. If anyone can point me to some information about any post-thyroidectomy Hashi effects, I would appreciate it.

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9 Responses

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Hello! I saw no one responded to this, so thought I would. I have/had thyroid cancer. I just had my surgery last Monday. I also was told I have Hashimoto as my TPO was extremely elevated. So to answer your question, you will have Hashimoto even after a TT, as Hashi is an auto immune disorder and separate issue from the cancer. Hashi being an auto immune disorder will attack the thyroid causing goiters or hypothyroidism. In our cases, in addition to the Hashi, developed thyroid cancer - not related. Had the cancer not been there, over time the Hashi would have attacked the thyroid gland to the point of not working, which would have resulted in needing thyroid replacement med's either way. I am at the point now where I am trying to figure out the trigger point for my Hashimoto as it all starts from there. A doctor told me today it is hereditary from mom's side, but mostly what I have read is that it you get it from one of many possible infection points. One of the top 3 ways people can get Hashi is from the Epstein-Barr virus (also known as mono). Other triggers can be something as natural as child birth (the stress the body goes through can trigger an auto immune like reaction like Hashi). Now that my surgery is over and I am moving on with the RAI treatment, I am going to try to learn more about Hashi, how I got it and how to treat it go forward. I hope this was helpful! This is all that I have learned since I was also diagnosed recently.

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I am also interested in the affects of Hashimotos's after a thyroidectomy. My thyroid was removed 8 years ago and I have never really felt well since- nothing major, just basically below par but, also, I have developed pretty severe allergies in the last few years; I now have arthritis; I have never slept well since and am permanently exhausted.

So, have you managed to find any information on how Hashimoto's can affect you?

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Hi Hyposherry,

Thank you for posting on EW that you have been unable to find this vital information. Though you received some thoroughly informative replies, (thank you to ginganerd and kittylala), we know the importance of receiving information that is reliable and doctor-written and reviewed! We've noted your question, and plan to address is on our site as soon as we can. In the meantime, if you have any other questions, don't hesitate to reach out again.

Thank you!

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Thanks hyposherry for asking this question!
I've been wondering the same thing. I was diagnosed with a papillary carcinoma in 2008, had a TT and the results showed cancer in my left lobe and Hashimotos in my left. My GP dismisses my concern and no one has ever explained what happened.
It makes a whole lot more sense to me now, as a teenager I was always tired, put on weight, hair loss and I stopped being able to eat nightshades (tomatos, potatoes etc) without a reaction (intolerance not an allergy).
I find I'm still tired a lot, lose hair, dry skin, sore joints and I put on 30kg post surgery in 3 years- I find it very hard to lose weight even with a strict diet. I'm on thyroxine to suppress my TSH but I've never had a full thyroid panel done, my GP thinks it's a waste of time as I've got no thyroid... I'm currently looking for a new dr!

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First of all let me say, I'm so glad to find this page and find others who share my same experience. I had thyroid cancer and TT in 2012. I for the first year after surgery felt pretty good, since then, every year has gotten worse. The last year has been the absolute worst for me. I too have Hashi's and am trying to find answers on what can and if there is anything to help with symptoms. My joints and muscles especially in my hands, arms, feet and legs hurt so bad to the point of tears at times and my GP can give me no reason for this. I feel like everyone thinks I'm crazy. They tell me my TSH is fairly close to where they want it to be but I feel like even a small amount off sends symptoms crazy. Can anyone give any advise? Or have any comments or suggestions???

Jen Kingsbury

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I've been trying to work through this and find out what it means as so far my doctors have dismissed my Hashimotos and thought that my thyroid is gone, I'm having thyroxine so it's no longer an issues.

I have not been satisfied with this response as I don't feel 100% we'll, I feel tired and exhausted easily, I get sore joints, I have trouble losing weight (after putting on the 30kg post surgery) etc.

So I've been doing some research etc in alternative approaches and decided I needed to get some further opinions. I saw an integrated GP (I'm in Australia) last week, and discussed it all with her. It's not so mush that I have Hashimotos per se, it's that the underlying causes are probably still in play so number 1 issue was to heal my gut and to get some further tests done. I'm having my reverse T3 looked at, as well as the thyroid antibodies (no one has ever asked for these in my normal thyroid blood tests I get every 6 months) and a bunch of other stuff.
I go back at the end of this month.
I've also booked to see my original Endocrinologist as well- see them in June, so I'll see what happens. I'm trying to get the medical help I need with those who are supportive and not just following the standard response. I'm taking charge of what help I need, from people willing to have some of my questions answered.

I'd still love to hear about a position from medical people attached to this site.

Hope that helps

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Hi Hyposherry,

You are not alone in your struggles with the after effects of having your thyroid removed. Let me cut to the chase and tell you that you can still have symptoms of Hashi after a thyroidectomy, because it is an autoimmune condition. The thyroid in this case is not the culprit. Now although genetics play a role and may make you more susceptible, that does not mean it will affect you or that you cannot change the way your genes express themselves (thereby affecting your susceptibility).. There are other factors involved in Hashi. First and foremost, you must clean and repair your gut. Gluten sensitivity among other foods and leaky intestinal lining period will lead to autoimmune symptoms and in yours and many others' cases who do not know it, it will affect the thyroid. Gluten not only slowly erodes the intestinal lining, it eats away at the protein of the thyroid. Although you no longer have a thyroid, you can see how the gut, as well as diet and lifestyle affect the rest of the body as well. I hope this helps. You can also take a natural desiccated thyroid supplement to give your body the T4 and T3 it needs. Adrenal support is also necessary simultaneously with thyroid support. I am here if you have questions or need further support. I work with clients often in your boat, so you are not by yourself.

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ANY info you could provide to those of us without a THYROID but who are suffering from Hashi's would be appreciated. I see this was 31 weeks ago... IN OTHER WORDS: like our docs, it's ah, you'll feel better eventually. Well, NO I DON'T.
I felt like crap before they took my thyroid and I feel like crap now. My arms most days feel like they weight 1000 lbs. My feet are hot to me but cool to the touch. I have 0 energy and haven't lost any of the weight I gained due to the "dead" thyroid that's gorter had wrapped around my vocal cords. We really do need so sound advice. I saw 2 endo's and 2 ENT's. Now my endo treats me like I'm 5. HELP US UNDERSTAND!

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I'm in the same boat. No thyroid. still feel crappy. Endo acts like you're a nut job. I wish there was more info somewhere on Hashimotos. I don't want to feel like this the rest of my life!

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