[Anonymous]

#1027096

Just wanted to send a post. I’m now 9 months post RAI and doing great on a small dosage of synthroid. I stop in and read the posts once in a while. Just wanted you “newcomers” to know that, while you may not believe it right now, things will definitely get better. This time last year I didn’t believe a word of that! I was so sick. And then I was so sick and tired of being sick and tired! Just hang in there, work with your doctors, and keep up a positive attitude that “this, too, shall pass” as my grandfather often said!

[Anonymous]

#1096121

I am so happy to have found this sight. It feels like I am going through this all alone sometimes. I was dianosed last summer with Graves. I also found out I was pregnant at the same time. Unfortunately I lost that baby, but we have a healthy, happy 2 year old keeping me very busy right now. My symptoms were a very rapid heartbeat, easily winded and hot. Didn’t loose too much weight. I had the radioiodine treatment (is that the RAI I have been seeing?) last December and in March I really started feeling lousy. My eyesight worsened, I have double vision, I can feel the stare with my eyes, they are bulging slightly and have changed a few milimeters since March. I also have pain on both of my shins, like a bruise. It hurts pretty bad, but only if I touch it or bump it. Endo just referrerd me back to primary Dr. I also started having extreme back spasms about 1 week after radio iodine treatment. I was in tears from the pain. It would last about 7 – 8 hours, always at night. That seems to have gone away. I do sitll have back pain, but nothing like before. Is anyone else experiencing any of these problems? Does it get better? I have been on my correct dose of Synthroid for about 2 months now.
Thanks
Marcie

[Anonymous]

#1096122

Hi, Marcie:

First off, you may, or may not be on your ultimate correct dose of replacement hormone. Sometimes we fluctuate a bit when we are first put on replacement hormone. The RAI (the treatment you did) causes thyroid cells to die off over time, not necessarily all at once. So we need to check our blood levels relatively frequently at first (every three months or so) to make sure that we are, in fact, on the proper dose of replacement.

Back pain is not generally associated with either the treatment or the disease itself.

The eye disease can come at any time. There is a hot phase that lasts about 18 months to 3 years, during which you can see unwanted changes to your eyes’ appearance and function. After that, there can be a slow remission of at least some of the symtpoms that have developed. You absolutely should be seeing an opthamologist about these changes. There may be nothing the doctor will be willing to do at this point in time, but you need to be watched.

As to the shin soreness you would need to talk with your doctor. There can be lots of reasons for it, only one of which might be associated with the Graves disease. Remember our bodies take a beating while we are hyperthyroid, and the muscles are adversely affected by excessive thyroid hormone. Maybe it could, therefore, be something like shin splints. But there is a problem associated with Graves’ disease and closely associated with the eye disease called pretibial myxedema. This is an autoimmune issue where an antibody causes a thickening of the skin of the lower legs. It usually does not cause pain. But it can cause pain if one of the lesions (if that is the proper term) is located too near a nerve.

We aren’t doctors here, so we can neither adequately diagnose problems nor can we recommend treatment. That’s why we always suggest people talk directly with their doctors.

Bobbi — NGDF Online Facilitator

[Anonymous]

#1096123

I found out I have Graves because of the thyroid eye disease (TED) – that was about 19 mos ago. Fortunately, I saw a neuro-opthalmologist that deals a lot with Graves patients, so he knew the phases to watch. Fortunately for me, I was a good candidate for radiation therapy on the eye muscles (behind the eye) to stop the active antibodies that were attaching the eye muscles, swelling them and forcing the eyes to bulge, double and blurred vision, at the 6-month mark. The radiation therapy worked and slowly all of those symptoms disappeared. I was finally over the “active” phase of this and able to have eyelid retraction surgery about 6 weeks ago. I have better vision now and bulging has stopped. To learn more about Thyroid Eye Disease, you can go to this website’s home page, following blocks on the left side of home page to Medline Plus, and then go to medical info, even drug info. There are other websites also with this type info, as well as books this BB recommends, like The Thyroid Solution. Hopefully, you can get to a neuro-opthalmologist near you (I have to drive 2 hrs) real soon. Local PCP cannot handle this, nor can a regular opthalmologist (normally). That’s it from Joy in NoGA mtns.

[Anonymous]

#1096124

Thanks for the info. I am seeing an opthalmologist but everything seems so general. I may look into something more specialized. It seems like my vision changes daily, but I may still be adjusting. It is good to hear what others have gone thru. I pick up a little bit more information each day. Thanks again, and I hope you are recovering smoothly.
Marcie

[Author]

Posts