Thanks in advance for any responses.
I was shocked to be diagnosed with Graves disease in early 2004. I was in my early 40s and had always been extremely healthy. I had recently been on a diet and was incredibly pleased to be losing weight for the first time in my life. I felt fine. at my six-month Dental check the hygienist noted that she felt something on in my throat area and suggested I ask my regular dr on my next visit. I did. She scoffed at the idea but ran the blood tests anyway. She immediately referred me to an endocrinologist who then diagnosed me. He felt strongly that I should get the radiation treatment or have surgery but was willing to have me start the methimazole immediately. it took going up to 40 mg a day before my thyroid levels stabilized. Unfortunately I also gained 50 lb during that period. Gradually, over the years I have been able to reduce the amount of methimazole until a year and a half ago I was only on 5 mg a week. Suddenly within 2 months my levels went way out of whack and I had to quickly increase my methimazole. Over the last year my thyroid levels have been completely stable on 25 mg per week. However, I have been struggling with two new symptoms.
The first began just before my thyroid levels went out of whack and involves unexplained random internal pain between my knee and ankles in both legs. None of the doctors I have been to have any idea what it could be. It is not constant and seems to move around some. Almost like it is in the bone. Bone density test showed normal.
Second issue has been the puffiness of my upper eyelids. It is really severe and bothering me immensely. They feel heavy all the time and are pressing on my eyelashes, causing an increase in mild eye infections.
I have been reading some of the posts on this topic. My endocrinologist said clearly that it is not caused by my thyroid levels being off but by the antibodies from the graves disease that are in my body. She did not give an opinion on whether I should have a blepharoplasty or not but deferred to the ophthalmologists. I have had two ophthalmologists, each of whom I have only seen once, both tell me that a blepharoplasty would help me immensely. I am not convinced just as I am not even sure that they are aware that I have Graves disease. I have a consult with the surgeon again tomorrow morning.
I am wondering about this TED - is it an actual diagnosis that is separate from whether one has Graves disease or not or is it a possible symptom or manifestation of having Graves disease? And what exactly is TED? I get the feeling from reading that it is more than protruding eyes or swollen eye muscles? Are those swollen muscles different from swelling in the eyelids themselves? Medications for my eyes like drops and antibiotic creams and anti-inflammatories and cold compresses, Etc have not reduced the swelling. Thus, it does not make sense to cut off the excess skin of the eyelid (which is how they explained the blepharoplasty helping) if the swelling is still present.
I feel extremely blessed to have experienced such remarkably good health in spite of having Graves disease these past 15 years. I have started taking selenium and I'm wondering how long that would take to have an effect on the swelling. Thanks again. So happy to have found this form.
Edited Swell2018 (Sept. 24, 2018 10:40:38)