[Bobbi]

#1074937

Thyroid storm is a rare, but medically dangerous situation that sometimes occurs with hyperthyroidism. The thyroid goes berzerk and starts pumping hormone into the body in huge amounts. It creates a medical emergency situation. It does not happen all that frequently, and when it does happen it is usually because of untreated or undertreated hyperthyroidism. If someone is effectively treated with any of the options, storm typically does not occur.

As to why your endo is so concerned about that possibility that he has sent you directly to surgery, only he/she could tell you. It might be personal preference, but it might also have something to do with the way you responded (or didn’t respond) to the ATDs. But anything any of us contribute here would only be a guess.

Antibodies are like keys that fit one specific lock. They are created by the body with a specific tissue or combination of proteins in mind, and they leave everything else alone. So antithyroid antibodies do not attack the liver, or other organs, and they don’t protect us against diseases: they attack the thyroid with the purpose of getting rid of it. Removing the thyroid eliminates (hopefully) the possibility that you will ever again be made ill by hyperthyroidism. Will you still have Graves? Technically yes. None of the treatments available to us eliminate the antibody that is making us ill. Will thyroid issues make you ill again? Most likely not, provided you are on the proper dose of replacement hormone. There is a slight possibility that the surgery will not take out enough thyroid tissue to prevent hyperthyroid conditions (the number was about 10% of the time twelve years ago, when I was treated). So, the surgery should "cure" your hyperthyroidism, but you would still "have" Graves (not that you would be ill any longer from it).

And while you may know folks who have been hyper all of their lives, they have not necessarily been hyperthyroid. The term "hyper" is the same, but the medical situations are vastly different. Years on end of being hyperthyroid would be debilitating and life threatening.

[Ski]

#1074938

Just one thing about whether you still have Graves’ after surgery. At our most recent conference, the doctor said that they are starting to refer to Graves’ as a syndrome, rather than a disease, because it encompasses several conditions. You are treating the thyroid issue, but you are still at risk for the eye disease (thyroid eye disease, we refer to it as TED) and also for pretibial myxedema (PTM), which is a very rare rash on the shins and/or swelling in the tissues of the foot.

Hyperthyroidism is the most dangerous condition of the three, and surgery will treat the hyperthyroidism. The others may or may not occur, no matter how you treat the thyroid, they could occur at any time (now or later), and they require separate treatment by other medical professionals (ophthalmologist for TED, dermatologist for PTM). Since they are autoimmune conditions as well, you may be able to reduce symptoms by reducing your stress levels. Stress stimulates the immune system, which (for most people) is a good thing because it helps your body fight disease that may come on during stressful times. For us, it can escalate symptoms, so we need to be careful about stress and also about taking substances that purport to "boost the immune system." Once your thyroid is gone, the thyroid antibodies can’t affect your thyroid hormone levels, but the antibodies that go with the other two conditions could still affect you.

[Mickey65]

#1074939

I work with a lady who has Graves and had a thyroid storm. It all happened about 20 years ago.

She did the RAI the first time, and about 8-9 years later, her thyroid grew back and she went hyper again. So they set her up with RAI and it was an internist who gave it to her. Apparently it wasn’t enough and 2 month later, she was given another dose and then got sick a few days later and was in the hospital for 7 days until they could bring her down.

Even after all that – she still recommended the RAI to me – but based on her experiences, I’ll be careful about any additional RAI doses!

[Ski]

#1074940

Hi Mickey,

The story about your friend actually sounds more like she did not have enough of an RAI dose at first in order to completely kill off her thyroid, and each subsequent dose was yet again too small. More likely than having the thyroid grow back is that the thyroid tissue was not completely killed off with the first dose, because then the antibodies could attack the remaining active tissue and force it to release an enormous amount of hormone that rendered your friend hyperthyroid again.

I say this only to point out that she was probably ill not because she had multiple doses, but because all of them were too small, and tissue remained that reacted to the antibodies, ultimately producing a storm condition [which, even under these circumstances, is very rare ~ I feel that is also necessary to point out]. There is a small contingent of doctors who believe they can give you "just enough" RAI to make you normal. In the end, the doctors we’ve spoken to at the most recent conference agree that there is no such thing, specifically because of the scenario I mention above. With any active thyroid tissue, it is possible to create a reaction from the antibodies in which the patient becomes hyperthyroid again. For that reason, most doctors will now recommend a large enough RAI dose to ensure complete destruction. If you have completely destroyed the thyroid with the RAI, it can’t react any more.

I have gone through this myself ~ my endo and I believed in total ablation, but the dosing radiologist thought differently, and never asked either one of us before choosing the dose I received. Had I received a large enough dose at first, I would have been spared many years of trying to get back to normal again.

[Hopeful23]

#1019907

Today I went to my endo to do a 4 week follow up. He did my blood work over, pregnancy,liver panel and cbc. To make sure meds arn’t affecting anything. I was told he will be removing my thyroid and set me up with a consultaion with a surgeon. I am lucky to have worked at this hospital and worked closey with a surgeon that specializes in thyroidectomys. He showed me my last results which read 17.4 and .003. I am suppose to meet with him 10 days after surgery and immediatly begin my synthroid during recovery. I guess my question is why did he immediatly route to surgery and not RAI cause my levels or personal preferance?? I forgot to ask him. He just said this was dangerous levles and he didn’t want thyroid storm to happen? What is thyroid storm and what is dangersous my levels now or not getting the surgery. I know people that have been hyper their whole life. Also, will i have graves disease still or will that be gone when my thyroid is removed….thanks so much, im so nervous how this will effect me. I mean I have to get surgery I have no choice but will this make me better or just a better option than treating graves or taking the RAI route???

[Hopeful23]

#1074941

Wow, this is all so interesting. I am so happy that my case will just be a thyroidectomy because I dont think I could deal with all that. I mean i know surgery has its cons but for me personally even if he recommened the RAI I would have gone the surgical route….I have to much anxiety to take that much and know that it could come back and cause more complications. I just want it out and call it a dang day…id rather deal with hypo cause I see my sister go through it and she feels a heck of a lot better than I do on a bad day and thats usually because she forgets to take her pills…lol…thanks for all this information it really puts life into prospcetive….im just eager to get my life back and become a 23 year old college student..thats all i want ” title=”Sad” />

[DianneW]

#1074942

You should be aware that even with thyroidectomy there’s a small chance that you can become hyperthyroid again. None of these three treatments is 100% effective, unfortunately.

Unlike with RAI, with surgery it rarely occurs that if a small amount of thyroid tissue remains, more can grow back from that remnant. Again, keep in mind this doesn’t happen very often, so it’s something you shouldn’t worry about at all. It’s good to know what can happen so if it should, you don’t waste time thinking it can’t be THAT (just as many people are never informed that the eye disease can rarely occur many years after the thyroid is successfully treated).

On the whole, surgery is usually a very satisfactory choice. People tend to get thyroid levels stabilized fairly quickly and avoid some of the fluctuations that can occur with the other treatments, which can lead to resuming "normal life" much faster. The antibodies that are associated with thyroid autoimmunity tend to slowly normalize once the thyroid has been removed. Normal thyroid levels and lower antibody levels have been shown to be associated with less severe eye disease.

The people I’ve known who had surgery got well again very quickly, and most of them ended up feeling like Graves’ Disease was no big deal once they got treated. I hope you’re one of those.

Good luck with your surgery and I know you’ll be feeling better really soon!

[Author]

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