Graves’ disease is in the news this week due to Barbara Bush’s passing. This article by Rosemary Black on endocrineweb states that Graves’ disease is a manageable disorder, provided you have received the proper treatment and follow-up care. The article mentions that there are 3 treatments available. I love the fact that the medical community has embraced the fact that you can live very well with this disease. It gives hope to those who are still struggling to improve or even maintain their health. However, there is some not so good news. The author then goes on to say “it’s easily treated.” My experience with the specialist, was not so cheerful. I was sent for a scan, then I was told my only treatment option was Radioactive Iodine. At the follow-up appointment after the RAI treatment, I was given a prescription for Synthroid. He told me he only prescribed “Synthroid, nothing else, so don’t even ask.” Then told me “I’m done with you. You can go back to your primary doctor. He can take care of you now.” All conversations with this doctor lasted a couple of minutes each. Yes, an easy treatment!
But, the author then goes on to say that regular treatment and follow-up care is essential. And it is! However, that is the area of my care where I have run into the most difficulty when dealing with Graves’. After about ten years on Synthroid, it seemed to quit working. I was so moody, crabby actually! I couldn’t deal with stress, I was gaining weight and I was freezing cold all the time! I wanted to try Armour Thyroid but no doctor would prescribe it for me. My long time doctor retired at that time, so I had to find another. Every doctor I asked for Amour Thyroid told me that is not the standard prescription for hypothyroidism, it’s not a stable medication, the supply of the medication is unreliable and you should just take Synthroid. When I state that Synthroid isn’t working, they would look at me like I was crazy. I kinda was!!! When I finally convinced a doctor to prescribe Armour Thyroid, he would only give me a month supply. Then, I needed more lab work. Every time I would call the doctor’s office to have more lab work done, the nurse would have to look for my current prescription, always asking “It’s 125 mg of Synthroid, right? When, I would say no, it’s 90 mg of Armour Thyroid.” Then, she would look again and finally say, “Oh, there it is.” Then, this doctor left. I saw three different doctors after that, none of them cared if I didn’t want to take Synthroid. The last one even cut the milligrams of Armour Thyroid from 90 to 60 so she could get me to go back to Synthroid. Her reason was my TSH was too low. She was totally deaf to the fact that 60 mg was not enough hormone to manage my symptoms. She just said she wished I felt better and to come back in 6 months so she could start me on a statin for high cholesterol. I never saw her again!
The good news is I now have a functional medicine doctor. He is awesome! My first visit with him lasted 3 hours! After all the testing was done and he tested everything, he gave me a complete treatment plan. He covered supplements, diet, exercise, a plan to rid the heavy metal in my body, where to buy supplements to get the best quality. He covered it all, along with “call me if you have any questions.” That visit was 2 hours!
I am happy to report I have not felt this good since being diagnosed with Graves’ disease. I totally agree follow-up care is essential, but I have found finding that care can be a challenge! I hope most of you have had better care, but I hear that’s not the case for many of you!
Have a great week!