[Anonymous]

#1076188

I’m afraid that I do not know much about the steroids treatment, Nina, so I annot give you any comments about the cramping. If it were me, I would check with the doctor, or a pharmacist (or both). It could be that the cramping you are experiencing is associated with the steroids, but if not, the doctor would be able to give you the best advice.

As to the issue about RAI. The eye disease is a separate disease from the thyroid disease. They are closely associated, obviously, but treating one does not treat the other. There has been a study, which as far as I know is still respected, that showed that in 16% of people who had RAI, the symptoms of the eye disease temporarily worsened. It was thought that the RAI stimulated the immune system (and anything that does that can cause an increase in the antibodies, and thus, an increase in symptoms). The study abstract that I read did not define “temporary”; nor did it indicate how much worse the eye symptoms got. Nevertheless, in cases like yours, where there is rather horrific eye disease, even a 16% changes of worsening (temporary or otherwise) is not ideal. There is sometimes an option of having the thyroid removed surgically, if the thyroid aspect of the disease is not well-controlled. This would be something to discuss with your doctor, though. But that same study showed that surgery did not result in any temporary worsening of the eye condition. The study was published some time within the past 10 years in the New England Journal of Medicine, if you want to look it up.

I hope this explanation helps.
Bobbi — NGDF Online Facilitator

[Anonymous]

#1020162

Dear fellow TED patients,
About 3 weeks ago I started to receive the first of 9 IV infusions of 1000 mg of a steroid called SoluMedrol because I wss in danger of losing my vision in my left eye because of optic nerve involvement. Apparently this only occurs in 5 percent of all cases. The results were dramatic, but I’m now concerned because of the high dose of tapering oral Prednisone the eye MD prescribed === starting at 60 mg q day for 14 days and then only tapering by 10 mg every 2 weeks. Suddenly I seem to be experiencing cramping in my hands and feet which is a new symptom. I’m wondering if this is caused by the steroids or if the steroids are suppressing my Tapazole even though the Endo MD increased my dose from 10 to 20 mg q day. Has anyone had experiences such as this? If my eye symptoms recur as serious as they were after the steroids are completed, I may need to have radiation treatments on the eyes. This sounds very frightening. If anyone can relate to my questions and concerns, I’d be most appreciative. So far the Endo MD hasn’t advised RAI as he fears it would make my eye symptoms more severe. I’m confused.
Thanks evrryone for reading this and my thoughts are with all of you. I’m so very grateful for this bulletin board. It has brought me much comfort over these past months. Nina

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