3 replies to this topic

[ChrishyperT]

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Hello, I am new to this site. I have had Graves for a year and I am on methimazole. I also developed thyroid eye disease (TED) a few months later, and I am still struggling with both. Since radioactive iodine is thought to potentially exacerbate the TED, my endo wants me to have a thyroidectomy. He said staying on the methimazole long term can lower my blood count #'s and lower my ability to fight infections. 

I read a few posts from people AFTER the thyroidectomy and it sounds like you can really have some negative side effects once it is removed, including calcium deficiency and intense exhaustion. Is this a common occurrence or is it more uncommon and only if something goes wrong with the surgery? I am otherwise a healthy, active 50 year old and I don't want my life to take a horrible turn after this surgery.

 

Will I have a chance to feel like myself again after this surgery?

 

Any experiences with this are greatly appreciated! Thank you, Christine

[Seattle]

Hi!

 

I'm new the site as well and newly diagnosed. I can't speak to the medication as I'm still waiting on an appointment.

 

Have you talked to an opthalmologist? Mine was able to bring a thyroid problem to my attention even before my GP. I'm not an expert by any means, but my understanding is that removing the thyroid doesn't solve TED. The antibodies are still present, so you might continue to have problems.

 

After watching some youtube vlogs of Graves sufferers talk about their eye problems, I was turned on to selenium and flax oil. After taking both of these each day (200 mcg of selenium, 3 tablespoons flax), I saw a noticeable difference within a week. I've also heard sleeping with a humidifier can help, as the more advanced you are, the more likely your eyes are not entirely closed overnight. If you haven't already, consider picking up a cooling mask. 20 minute cold compresses seem to help.

 

That's my 2 cents. I'm sure one of the regular, more knowledgeable folks will be along shortly!

[Allies]

Hi Christine

 

Sorry to hear you you have Grave's Disease I think it's a good idea to consider all your options and weigh up the pros and cons. I'm personally determined to keep my thyroid gland, so am biased towards long term, low dose anti thyroid treatment.

 

A lot depends on the quality of your doctor and the treatment you are given - and this is true whether you decide to keep your thyroid or not. It would be helpful to find out in advance how your doc plans to treat you if you decide to go ahead with thyroid surgery:. Is he/she recommending total or partial thyroidectomy? What is the proposed treatment post surgery? Which blood tests will they run to determine replacement hormone doses? Perhaps you could visit some forums or sites dedicated to hypothyroid sufferers - get an idea how people with low thyroid cope, the sorts of issues they have and how they deal with them. I did this about a year into my treatment and it did not inspire me to rush off and make my endos happy by agreeing to getting my thyroid removed. (The endos did inform me when asked that any replacement hormone would be adjusted according to my TSH level, which is absolutely nutso! )

 

Unfortunately there are no guarantees either way, and no quick fixes. There is a very slight chance that continuing with anti-thyroid meds could effect your white blood count (agranulocytosis - very serious and very rare) on the other hand it is almost certain that you would become hypothyroid if your thyroid is removed. If you have a fantastic doctor who pays attention to how you feel as well as your actual thyroid hormone levels (FT3 & FT4) then perhaps life without a thyroid gland is an option worth considering. Bare in mind that the thyroid gland also produces other, less well understood hormones (FT1, FT2 & calcitonin) and that the traditional post thyroid ablation monotherapy is a T4 only treatment, there is some suggestion on hypothyroid forums that monotherapy is not ideal for those without a functioning thyroid gland. So perhaps you could find out if your doc would prescribe a combination therapy (T3 & T4) or a natural desicated thyroid hormone if necessary. One of the other things to consider is that even a thyroidectomy is not a necessarily a quick fix, as it can take some time to determine what sort of replacement hormone will work for you and nail down the right dose.

 

I don't have any experience with TED, but my understanding is that it can crop up in response to thyroid hormone levels that are either too high or too low (as both of these situations cause an increase in antibody production, which in turn can lead to eye issues). Perhaps if you share your blood test results here, along with the reference ranges and medication doses someone may be able to help you interpret them

 

Cheers
Allies

 

PS Seattle has just posted some sound advice re TED, perhaps consulting an opthamologist before making any irreversible decisions would be a good idea

[mmztcass]

Hi Christine:

 

Welcome.  Other than to say if one's thyroid levels of the Free T3 is too high, Selenium cannot be supplemented.  It will make it go higher.

 

Can you post your thyroid labs?  If too low or not in the 'right' places within the normal lab reference ranges, TED can act up.

 

I have been on very low doses of MMI (Methimazole) now for 14+ years.  I work on keeping things as balanced for the labs, etc.  One can stay on the ATD (antithyroid drug) forever without any problems.

 

{{{hugs}}}