This is my first post so I am not sure how this works...I was diagnosed with Grave's two years ago and was not properly treated. Recently I visited a new endo and she decided to use radioactive iodine treatment - since then my TSH levels have gone from .005 to 85. Is this normal? I find mysel feeling VERY depressed, weak in my arms, cramps in my legs, weight gain, an "apple" face, and exhaused. I have been given synthroid - will this help with the symptoms (especially the weight gain)? I don't even remember what normal feels like...will this come? Thanks for your help...
What was the treatment for your initial diagnosis of Graves? I too have Graves disease and was put on Tapazole for about 18 months. Mine did not return quickly as most do but recently I have many symptoms of hyper even though my levels are in range.
I also have four nodules, one that is cold but has a blood supply so I am opting for surgery. The Endo that I went to years ago warned me about RAI since there is really no way to tell how much of the thyroid it will kill. Sometimes too much, sometimes too little so patients sometimes have to have RAI again but eventually, the majority of patients will go to the hypo side. Sounds like this has happened to you.
My advice is to find a good doctor that recognizes that even if your levels are in range, that range may not be normal for you. Unfortunately, there are very few doctors that are open minded and your thyroid controls so much of your body that many of us are on a rollercoaster for years before receiving the proper treatment.
Request copies of your labs and keep complaining until you find a doctor that will listen.
I was first put on Tapazole for about 6 months and then told to stop taking it to see if my body controlled the Grave's on it's own which it did not. I then went unmedicated for about a year and a half at which point I found a new doctor. The new doc had me go through the radioactive iodine treatment which was said to be "Not Productive" I think because instead of targeting only a portion of my thyroid it killed the entire thing. I believe this is why my TSH levels are now 85?
