[maryo777]

#1060419

I’ve been diagnosed euthyroid Graves with severe TED. My thyroid levels have always been normal so I’m not treated with any anti thyroid drugs. I went through high dose steroid therapy and didn’t respond. Block and replace therapy was suggested to me from another forum in order to drop the antibody levels. I have not been able to find any research or study information on it with the euthyroid patient. I’m wondering if you may know the pros and cons. It’s always been my understanding from my medical team that the thyroid levels don’t control the antibodies which is logical to me since my levels are normal. It doesn’t make sense to me to start using ATD’s since my levels are normal. Thanks for you help

[snelsen]

#1182515

Interesting diagnosis. Some questions from me.
Were you, at one time, hyperthyroid? How in the heck did they diagnose Graves if labs are within range.? Other clinical symptoms along with this? What prompted to think of euthyroid Graves? Did you have any treatment any other time for Graves?

My two cents.
Your problem now is severe TED.
Graves’ and TED are totally different diseases/Sydromes/whatever you want to call them, different antibodies, different processes.

I suggest you begin to see a neuro ophthalmologist to get a good baseline exam of your eyes for your TED. Severe TED is HARD! Just ask me.

As you are wondering, I don’t think block and replace, and/or any other thyroid hormone therapy has anything at all to do with TED.

Love to hear more information from you..
Shirley

[maryo777]

#1182516

Thanks for responding so quickly Shirley. I started seeking help for my eyes. Two ophthalmologists thought it was TED and both ordered blood work which came back normal. Due to that they diagnosed me with orbital pseudo tumor. Was at my primary for a 3rd blood draw and they called 911 as my heart rate and blood pressure were sky high. Blood pressure was 252/181. I’ve been on beta blockers and blood pressure meds since (2010). I went to a medical university ER who did the CT scans and antibody panel and they said I have Graves and TED. Thank God they referred to me their TED specialist. I’ve had OD, strabismus and now lid surgery trying to restore the damage to my eyes and may possibly need another. I also have chronic urticaria from the autoimmune disease and have been in a flair since strabismus surgery in August as the surgery made my thyroid antibody levels spike again. Besides the immunosuppressing drugs to lower antibodies, it was suggested in another forum I do block and replace which has never been offered nor can I find anything on it for euthyroid patients. I can’t understand where the anti thyroid meds would lower my antibodies since it is autoimmune that causes the thyroid dysfunction, not the thyroid dysfunction causing the autoimmune. At any rate, I display symptoms of both hypo and hyper and my medical team treats the symptoms individually. I’ve tried to stay natural path as much as possible. I’ve had blood draws every 3 months since 2010, still normal. I just can’t seem to get those antibodies down.

[Kimberly]

#1182517

Hello – There was an old study done in Japan with block & replace therapy that had great success in bringing antibodies down and bringing about remission. However, the results have never been replicated in any other studies, to my knowledge. Part of the problem is that with the high doses of anti-thyroid drugs required to completely shut down thyroid hormone production, the risk of side effects is much higher – so people with side effects (particularly severe ones) will drop out of studies like this. And to my knowledge, block and replace has *not* been studied in patients who are euthyroid.

The thyroid and eye issues are related (patients who are hyper or hypo have a higher risk of TED), but it’s not a perfect correlation. A presenter at our 2010 San Diego conference noted that about 40% of patients with Graves’ experience thyroid and eye involvement at the same time, about 45% experience thyroid issues first, and the remaining 15% experience eye issues before having any thyroid involvement. Sorry that you are experiencing a range of hyper/hypo symptoms – but that’s good that you are getting levels checked periodically.

[maryo777]

#1182518

Thank you for your response Kimberly. I wasn’t able to find much on it either. I have discussed ATD’s with my medical team but they were against it in my case. “Why try to fix something that’s not broke” is how My Endo worded it. Many thanks.

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