[marilu]

#1060732

Hello. I’ve been maintained on Synthroid after radioactive iodine ablation for Graves 17 years ago. Once in a while my TSH would either go up or down and my medication would be adjusted and within 3 or 4 months I’d be back to normal. Well for almost 12 months now my TSH has been in the hyperthyroid range and even after gradual reduction in Synthroid dose every 3 months, I am actually becoming MORE hyperthyroid with my TSH even lower each time. My MD is baffled, said this shouldn’t be happening. I take my medicine precisely as prescribed. I’d like to know if anyone else has experienced this and what was the outcome? I’m getting worn down from my heart racing, losing more hair, and having shaky hands. My MD is at UCLA and she had a conference with an endocrinologist regarding this and they couldn’t explain it either. Thanks for any insight you might have.

[Kimberly]

#1184374

Hello and welcome – we are fellow patients here, but there are a couple of issues to consider.

One would be if you lost a lot of weight prior to this issue, as it’s possible the dose just needed to be reduced.

Another is that if there was some thyroid tissue left after your RAI, it’s possible for the thyroid to regenerate and cause a recurrence of hyperthyroidism. Many years ago, the thought with RAI or surgery was that you could remove exactly the right amount of tissue so that the patient wouldn’t be hyper or hypo and wouldn’t need meds. But it proved nearly impossible to find the “Goldilocks” dose – patients either went hypo anyway, or they ended up having a recurrence of hyperthyroidism. These days, doctors either give a “fully ablative” dose of RAI to kill off the whole thyroid or remove the entire thyroid via surgery.

That’s good that your doctor is monitoring this closely. Hopefully it will just be a matter of reducing your meds in accordance with your labs, but if you do end up hyperthyroid again, you have the same three treatment options available to you – RAI, surgery, or antithyroid meds.

Take care – and keep us posted!

[Liz1967]

#1184375

Here is an article citing recurrence of hyperthyroidism years after RAI, in one case 22 years later. It is an older reference, 1995, but they concluded incomplete destruction of the thyroid as the cause.
http://www.ncbi.nlm.nih.gov/pubmed/15251585
As Kimberly said, years ago they found benefit in saving even part of a diseased thyroid. I think that thinking has changed over the years.
Hope this helps.

[marilu]

#1184376

Thank you, Kimberly. I never even considered after ablation that there could still be thyroid remaining. That must be what’s happening with me. I will just have to wait it out until they can determine after many, many months that lowering my Synthroid dose isn’t doing any good. I think my hyperthyroid symptoms are still pretty mild at this point after a year. I did have a bad bout with TED a while back with double vision and proptosis and that is my biggest fear, as my eyes are starting to bulge again. I know they don’t associate TED with the hyperthyroid state, and I guess it’s just a coincidence that this is happening, but it’s a scary feeling. Thanks again for your support and I will check back in as things progress.

[marilu]

#1184377

Thanks so much Liz. Please see my reply to Kimberly.

[Liz1967]

#1184378

Unfortunately, TED can recur years after it burned out. Incidence only about 5%, but it happens. If you still have remaining thyroid, both the Graves hyperthyroid and the TED can recur. Actually, the TED can recur even without a thyroid, but the hyperthyroid cannot unless thyroid remnants were left. If you have not seen an ophthalmologist, you need to do so. Eye measurements become really important even if there is no treatment to be done. Maybe a thyroid ultrasound would be of benefit, an easy procedure done during an office visit, usually with an ENT doc, to see if there is any thyroid tissue present. Anyway, maybe an ENT doc would be of help at this point.

[Kimberly]

#1184379

Hello – Agree with Liz1967 that a visit with an experienced ophthalmologist would be in order. You didn’t mention the recurrence of eye bulging in your first post; since this is occurring in conjunction with a bout of hyperthyroidism, this should be checked out ASAP!

Also, I’m confused when you are saying the Synthroid isn’t working. If your labs come back showing hyperthyroidism while on Synthroid, that means you are getting *more* T4 than what your body needs on the existing dose. Did you mean the current *dose* isn’t working – from the perspective of keeping your labs in the normal range?

Interestingly, we had a patient meeting in Baltimore earlier this month, and two of the attendees were struggling with severe eye issues many years after treatment. The endocrinologist who was doing the Q&A noted that it’s likely that they both had some thyroid tissue remaining. He said that there *may* be some benefit to a procedure called “Total Thyroid Ablation”, which is thyroidectomy followed by RAI to destroy every last bit of thyroid tissue. (Patients with high-risk thyroid cancer go through this procedure).

He noted that this seems totally counter-intuitive, as RAI is linked with an increased risk of TED, but this is something that will hopefully be researched more thoroughly in the future. Here’s one link:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.ncbi.nlm.nih.gov/pubmed/17299076

[Liz1967]

#1184380

Kimberly, it was interesting to hear about your meeting. I also have been hearing more about TT followed by RAI. In fact, I asked my thyroidectomy surgeon about it. He assured me he got it all, just as he does for his thyroid cancer patients, but still wonder about “mop up” type RAI. As these are antithyroid antibodies, makes sense to get rid of it all.

[snelsen]

#1184381

Marilee,

I am not sure, this might be a terminology issue, but when you wrote,
” I am actually becoming MORE hyperthyroid with my TSH even lower each time. My MD is baffled, said this shouldn’t be happening.” This puzzled me, for when the TSH number is lower, that means that you are more hyperthyroid.
If it goes above the range, it means you might be hypothyroid.

I sure do agree with Kimberly that you should see a (preferably a near-opthalmologist) or certain a regular ophthalmologist, to check out your eyes. Bulging eyes is a sign of TED. As a reminder, I had Graves in my early 20’s and “got” severe TED in my 70’s!1 So TED can occur decades and decades later.

I’m one of those people who had a sub total thyroidectomy, the theory then was to leave a little bit of thyroid tissue, with goal of being euthyroid. IT worked for me for about 40 years, then I needed to begin to take Synthroid.

I can never decide which was worse..Graves’ or TED. For me, it was TED, for I still have many issues with my eyes.
Shirley

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