I would welcome any shared experiences or advice about my current situation. I have graves Disease. I was diagnosed in May of 2009 and had a near total thyroidectomy in July 2009. I felt great for about a month after the surgery. I was put on Levothyroxin immediately following the surgery. (the suggested doseage for my body weight) After calls to my enod and finally a sceduled visit in which I complained about racing heart and many other of the symptoms I remembered so clearly from the months previous to my surgery, he argued Ineeded to increase my dose of Levothyroxin. At that point I knew I was in search of a new endo! I found one who very gently guided me through 5 months of no drug use, and then put me on Methimazole. I have riden the rollercoaster of hyper to hypo and back again for the remaining months as we searched for the correct dose of methimazole.( I have been on that since April 2010. For the last 3 months I have had normal thryoid levels. I am presently taking 2.5 mg daily of the methimazole. In the past when I was hypo one of my first symptoms was foot pain. An aching, burning, tired foot pain localizing in the ball of my foot. I would get out of bed with that pain and infact it would be present even when in bed! I had begun having that sensation in Oct. 2010 and so assumed I was low. I was not! So I lived with it. In Marchof 2010 after 5 months of that pain, and realizing it was beginning to affect my activity choices and level I went to the Dr. I was then sent to a podiatrist. At the podiatrist appt after examing my feet he concluded that it was neuropathy from Graves disease. I had never heard of neuropathy in the feet from graves. I do have pretibial myexdema in both legs just on the from of my lower legs. I do occasionally feel shock like pains in my legs and feet. The podiatrist talked to me about a drug called gabapentin that is used with much success for this pain in my feet. He said it may take 4-8 weeks to note an improvement. I have been taking it for 3 days and already feel a huge difference. While I hated to add another pill to my daily routine it is amazing the difference I feel.
So have any of you had this neuropathy? And is it really connected with Graves? I have been tested for Rheumatoid Arthritis and Lupus, both came back negative. But I have also heard that those tests can sometimes come back negative even if you have that disease. I just don't want to miss anything here. I want to be a preventative as possible. I realize I cannot prevent the disease but do feel I can at least prevent some of the results of the disease. I am also following a strict food diet due to food allergies (intolerances) that showed up in blood work. No gluten, dairy, eggs, or beef. I have felt 100% better since implementing the new way of eating and am in hopes it will help my body into euthyroid.
I also struggles with Opthalmopathy in both eyes, once worse than the other. I am a candidate for lid surgery but at this point it doesn't appear I will need orbital decompression surgery. I use Restasis and gel drops to help my eyes, but it is my greatest discouragement at this point! I see double of print, my vision is blurry a lot, and my eyes sting and burn, and of course water a lot!
Thanks in advance for taking the time to read this rambling of my health issues and for any response you my give!
Have a good day!
"Don't count the days....make the days count!"