Hyperthyroid Treatment Options Advice please!

[Sue1706]

Hi Folks, this is my first post, though I have been following most days since being diagnosed with autoimmune hyperthyroidism in February 2016. I have learnt a huge amount from this site, for example to ask to get B12 tested (sure enough I was deficient), and to go gluten-free,

Though my thyroid levels have never been very high, I have very high TPOab antibodies - >1300 last May, >600 this February. I have been taking carbimazole from the start but I still have had a very rough 18 months, and the thyroid clinic have not managed to keep my T4 and FT3 in range, it fluctuates between being underactive and overactive when the most microscopic adjustments to dosage are taken - ie at 12.5 I go overactive and at 15mg underactive.

I will be seeing the endocrinology consultant in a couple of days and I am expecting that his next step will be to propose RAI, a prospect that does not appeal to me. Can anyone give me any advice please? One particular worry for me is about the antibodies - I have had (fairly mild) thyroid eye disease, which I have been told is inactive now, but I wouldn't want to trigger that off again.

And also....as the thyroid went askew I developed muscle spasms and burning pain in my neck, back, and shoulders, and I also became extremely fidgety. It has been very disabling and I am being treated by a neurologist for it. He tells me that with antibodies as high as mine the brain can be affected, but (hopefully) that it will be temporary. It is always far worse when my FT3 is too high, but it never really goes away. Has anyone else out there had anything similar?

Any advice is very welcome. I suppose my current big question though is how best to bring down those antibodies and what happens to them when you have RAI?

Thankyou all

Sue

[Clutter]

Welcome to the forum, Sue1706.

Having thyroid eye disease (TED), however mild, indicates you have Graves disease. Have TSI or TRab antibodies been tested to confirm or exclude Graves?

TPO antibodies usually burn out when the thyroid is removed or destroyed but Graves antibodies do not disappear and may go on to attack other organs, most often the eyes. RAI can make TED worse. If you are going to get rid of your thyroid gland you might consider thyroidectomy instead of RAI.

There are posts on Graves and Thyroid Eye Disease underneath Topics on the right side of the page. You can also use the search function for more information by typing "RAI" or "Radioactive iodine ablatement" into the Search Thyroid UK box top right of the page.

[Sue1706 in reply to Clutter]

Thanks for your reply Clutter. Initially it was classed as Autoimmune Hyperthyroidism, but more recently the words Graves disease have also been used. I have been referred to the thyroid eye disease specialist, who says that I have had TED but that it is currently inactive.

I have only had the TPOab tests, no suggestion of the others - should I ask for them to be done?

I would much rather keep my thyroid, but having had the last 18 months fluctuating between being over and underactive, and having such persistent neuromuscular problems, I am beginning to think that keeping it is maybe not the most sensible idea. BTW when they class things as underactive, it has always been only the T4 - I don't think that the FT3 has ever gone below normal range. I am beginning to wonder if it would really be such a problem to let things tick away with T4 being beneath range as long as FT3 stays within. As it is, when the T4 goes beneath, they always panic and adjust the carbimazole and then next time I am tested I have gone back to being overactive!

[Clutter in reply to Sue1706]

Sue19706,

As you have TED you almost certainly have Graves disease.

As titrating Carbimazole dose is proving difficult block and replace may be worth discussing with your endocrinologist. This involves prescribing a higher dose of Carbimazole to block all of your thyroid production which is replaced with Levothyroxine.

[Sue1706 in reply to Clutter]

Thanks again Clutter. Yes, I have been thinking of block and replace too - I gather that the carbimazole slightly supresses the auto-antibodies so maybe a higher dose would be beneficial as mine are still high. Do you think I should try B&R before agreeing to RAI?

[Clutter in reply to Sue1706]

Sue1706,

I think it is worth a try before permanently destroying your thyroid gland which will make you hypothyroid within a year.