I'm new here and feeling very confused with symptoms of both Graves and GCA/PMR. Last summer I was diagnosed with Graves, had antibodies for both Graves and Hashimotos, was put on methimizole and beta blocker. Stopped the drugs in December as the blood tests were trending toward hpyo. Latest TSH: 12/1: 1.65 (0.34-4.82). 12/15: TSH .55. 1/8: TSH 1.73
Finallly saw a rheumatologist on 12/28 that I had scheduled last summer before the thyroid problem. At that time I was having sacral joint, ankle, back pain (maybe the PMR?) In December I started having severe shoulder, neck pain and head pain in the occipital area, back of head, a particular spot. He tested sed rate and CRP, sed rate was 69 mm/Hr (0-25), and CRP was 2.1 mg/dL, (range <=1.0). He scared me to death about losing my sight with GCA and put me on 40 mg of prednisone. He didn't order a biopsy, said they were somewhat unreliable. I also tested positive then for a UTI and took antibiotic for that at the same time. I didn't have symptoms of a UTI other than some back pain, but I'm 74 so I guess that's not so unusual.
Tested again on 1/16 after being on the prednisone for 10 days and the rates were: sed rate: 17 (0-25), and CRP 0.2 (<=1.0). All in range, but I'm having an awful time at night with waking up after a few hours with pounding heart, shakiness, tight chest, a little head pain,( not bad), getting cold, and then very tired. He wants me to reduce to 30mg prednisone since tests are in range. I did for one day but the neck pain got worse and the headache is "hanging around", not painful, but not right either. I worry constantly about my vision. I'm very nearsighted and switch between glasses and contacts so hard to tell if type is unclear sometimes.
But the waking at nite, etc., were the some of the same symptoms I had when hyper with the Graves! I'm so worried about my sight I don't know what to do at this point. Would the UTI have caused the inflammation to go up so high and then back down so quickly? Can you be at risk for GCA problems if the blood tests are in range? Can Graves cause the sed rate to be that high? Now I'm stuck with the prednisone? How does the sed rate and CPR level correspond to what's going on the the PMR//GCA?
Confused about what to tell and ask each doctor to find out what's going on. It is hard to get in to see the rheumatologist but he is responsive to phone calls. Haven't called the endo about being on the prednisone. I don't know how to sort this out.
Sorry about this long tale, hope it makes sense from lack of sleep and prednisone. Thanks in advance for any advice!