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Thyroid Nodules Benign Enlarged due to high TSH

Hi, I was overmedicated for Autoimmune Graves - threw me into hypothyroid - high TSH, low T4.  I developed 3 large benign goiters very quickly and experienced neck swelling every time I took methimazole, reduced dose, continued.  I'm off methimazole for now.  I am considering radiation ablation.  Will this reduce my overstimulated now enlarged thyroid nodules.  Some of 2 inches long and I have 3 large.  Anyone have luck with reduction of nodule size with ablation?
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649848 tn?1534633700
COMMUNITY LEADER
Nodules are quite common with autoimmune thyroid disease.  Are you sure the nodules are 2 inches and not 2 cm since nodules are, typically measured in cm?  

Radiation ablation should reduce the size of the nodules, but did they tell you, depending on the dosage, it will also destroy the entire thyroid, so it won't produce necessary hormones any longer?  This will cause you to be permanently hypo and in need of thyroid replacement medication.

Do you know if these nodules are producing hormones on their own?  If not, they may reduce in size on their own, if your Free T4 and Free T3 can be normalized without  the radiation ablation.  This can sometimes be accomplished simply by adjusting the methimazole properly or changing to PTU instead.

There's also a procedure called "Block and Replace" in which anti-thyroid medication is given to block thyroid hormone production, then thyroid replacement medication is given to normalize hormone levels.  This might also be a consideration and could help shrink the nodules (provided they aren't producing hormones, independently of the thyroid).
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I can feel them, they are very large.  I am pretty sure she used inches. I have stopped Methimazole X 2 days because it was pumping my neck up with every dose and cutting into my windpipe.  Scary. However, mornings bring some swelling back anyway.  I have not been told if the nodes are producing hormone but Block and Replace seems like a great solution.  I have just ditched my endo doc, for ditching me, and I have an extremely good ENT surgeon who is setting up a referral with an extremely good Endo for a consult re surgery, no surgery etc.  Meanwhile I’m not using Methimazole for now.  The nodules have moved my trachea etc to the left, it’s kind of bent,  however swelling continues to come down a little at a time with intermittent swelling during active thyroid behavior.  This morning my big lump was almost flat.  It is now pumped up again but not cutting into my windpipe.  That is improvement in my eyes.  Do you know anything about common side effects of ablation, mainly does it shrink enlarged nodes, is cancer development still an option on the dead thyroid or any type of recurrent swelling?   Is it worth it - ?  Seems like surgery should be rather simple, it’s just below the skin, but there are complications that can happen I know.  Voice chords, windpipe, bleed out etc.  1 - 2%.  Any additional info on the above is extremely appreciated until I can get to my consult.  Thank you.
It's good that you will be seeing a good surgeon who can tell you the pros and cons of surgery vs ablation.

As I noted in my previous post, ablation will most likely shrink the nodules, because it will probably also "kill" your thyroid, which will prevent it from producing thyroid hormones.  This will cause you to be hypothyroid and you will need to be prescribed replacement thyroid hormones for the rest of your life just as if you have your thyroid removed.

If the thyroid is ablated, there wouldn't be any living cells for cancer to grow on, therefore cancer on an ablated thyroid would be very unlikely unless the thyroid were not completely "dead".  This would be determined by the dosage of radioactive iodine administered.  Only you and your doctor can determine if it's "worth it".

Thyroid surgery is relatively straight forward, although as you noted, it's not without risks, as is the case with any surgery.  Again, surgery would, most likely leave you hypothyroid (particularly if a total thyroidectomy is performed) and dependent on replacement thyroid medication for the rest of your life. This is common for those of us with autoimmune thyroid conditions - either Graves or Hashimoto's.  

It's possible your nodule swelled as it did, simply because of the over medication and once you're no longer over medicated, the swelling will subside and no longer be an issue.  You will, however, have to decide on how to proceed with treatment for your Graves Disease.  

It's important to note that TSH, itself, neither produces nor alleviates symptoms; it's the presence or absence of Free T4 and Free T3... what happened when you were over medicated with the methimazole was that it blocked your thyroid from producing the thyroid hormones, T4 and T3.  This, then caused your pituitary gland to produce TSH (Thyroid Stimulating Hormone) to try to stimulate your thyroid to produce the hormones.  When the thyroid didn't respond and T4 and T3 levels went down, the TSH kept going up as the pituitary's effort to stimulate the thyroid.   The lack of thyroid hormones could cause inflammation and the nodule(s) to swell.

Once the methimazole was stopped, the thyroid could begin producing hormones again and the swelling could be reduced.  The fact that a nodule swells to move your trachea would be an indication that perhaps it should be removed.  That would be a decision between you and your doctors.

The block and replace method consists of using anti-thyroid med to block production of thyroid hormones, then using replacement thyroid medication to keep thyroid hormones at a specific level.  I don't think this method is used very often anymore, as ablation and/or surgery are, typically favored.  
That was a wealth of information.  That is exactly what happened.  My Endo thinks it’s just the progression of the disease but the minute I went off the Methimazole, the swelling subsided nearly overnight.  I have had a week of minimal swelling and my nodules are nearly flat now.  I see the ENT tomorrow to discuss surgery.  I would love to avoid surgery and I will discuss the possibility of ablation.  I am not sure if it will work with the issue that I’m having with slight trachea displacement and a nodule “dipping” into the thorax region.  The latter making the surgery a little more difficult than just regular thyroidectomy which worries me.  Thank you so much for taking time to discuss this with me and if you know anything about the above that I just mentioned, please feel free to comment more on that as well.  
A good surgeon will be able to do the surgery without damage.  I've had 2 surgeries on my vocal cords and I'd trust the ENT who did them to do a thyroidectomy if the time came to have one.  I'd not want anyone else to do it, especially, if there might be complications.

Personally, I'd be more inclined toward surgery than ablation, but that's me.  The decision is between you and your doctor(s).
Thank you so much.  Your comments are comforting. My ENT physician is a former chief of staff and chief of surgery and just was awarded a “service” award ...I believe it was caring based.  I think I’m with the right person.  Surgery is scary and you want to be confident in your surgeon for sure.   Thank you again for your kind responses.  
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