[Anonymous]

#1127468

I have a similar story. However, I never took such a large dose of Tapazole that I had to totally replace with Synthroid. I started taking Synthroid, because I was hypo even on a very low dose of Tapazole. Right now I’ve been off Tapazole since last September, and I’m currently taking 68 mcg. a day of Levothroid. My numbers have all been normal (last test was in Feb, I go back in June.) So I guess I’m a success story.

My problem is I can’t get past the feeling that I’m waiting for the other shoe to drop. I’ve been under a lot of stress over the past few weeks, and lost 4 pounds in 1 week, most likely due to stress. But a weight loss like that gets you wondering… Also, I get winded going up even 1 flight of stairs… My legs sometimes feel very tired… So even though everything’s normal, I don’t think I’m done yet. I guess it’ll be easier to think that I’m o.k. the longer I go without any abnormal test scores……….

[Anonymous]

#1127469

My friend the doctors notes from the class she went to said that the synthroid should be total replacement dosage and not partial. The goal being to totally replace the synthroid your body needs so that the body does not try to produce it’s own. Another doctor told me that for women the average total replacement dosage is 0.1 to 0.125.

Thought I would pass this on. It might help to prevent a relapse later.

[Anonymous]

#1039323

When I first got Graves disease, I was pushed towards using RAI. I called my sister and she read to me from her medical book about taking medication.

I called my doctor and cancelled my appointment and took PTU. It brought my disease under control but it became apparant that the disease would remain with me. I didn’t want RAI because I have heard that some people with eye disease experience more eye symptoms after RAI. Plus I wanted to retain my body parts. My girlfriend was in medical school and when I picked her up for Karate lessons she had just gone to a lecture on using Tapazol and synthroid together. She stated the Japanese have a 85% long term remission rate. However after using Tapazol and synthroid together for one to two years, the tapazol is discontinued and the synthroid is continued. After 2 years on Tapazol and synthroid, we slowly reduced my dosage of tapazol and then discontinued it altogether. I have a very good doctor and this was a team effort.

I take synthroid now to control my Graves disease if I were to discontinue it I am sure I would relapse. HOwever I am now in complete remission, my eye disease is totally stable and never worsened, I still have my organ and I plan on taking synthroid for years, so that my body does not try to produce its own hormone and end up overproducing it in the process. I had moderate to severe disease. Had I taken RAI I don’t think I would have come out as good as I have.

[Anonymous]

#1127470

Congratulations on your continued good health! What you’re talking about is Block and Replace Therapy. (BRT) It is the first line of treatment of Graves Disease in Japan and much of Europe.
I had BRT 7 years ago, and have been fully restored to health. I have been on a very low dosage of synthroid for the past six years, and have suffered no relapses. Infact, my doctor says I can come off the synthroid whenever I want. But, I prefer not to tempt fate, and, since it IS such a low dose, would rather continue on the synthroid indefinately. My doctor says I can do this if I wish.
The key to your success, and mine, I believe, is that we have continued to take synthroid following being taken off PTU or Tapazole. My doctor says the reason physicians in the U.S. have not been able to duplicate Japan’s 85% success rate is because our doctors took patients off synthroid too soon. It is very important that one remains on synthroid a MINIMUM of five years. The theory is to “let the thyroid rest and heal.”
I do hope more people investigate this very promising method of treating Graves Disease.

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