[lissaj]

in reply to: Just diagnosed with Graves #1170148

Hi. No they haven’t put me on any thyroid meds yet. Just lots and lots of Vitamin D. My vitamin D level started out at .5, now it is up to 45 after 2 years, but I have been taking 300,000 units of Vitamin D. My new doctor is scaling me back to 200,000.

I have elevated PTH hormone levels, but normal calcium.

They gave me a blood test for Celiac, but it came back negative. However my new Doc thinks I probably do have Celiac. He is sending me to a GI for tests and a biopsy of my small intestine.

I had several ultrasounds of my thyroid and parathyroid. I was told I had nodules, but the position and size was always changing. My new doctor says I don’t have nodules but a “heterogenous” thyroid and areas that can look like nodules but aren’t.

My GP thought I must have a parathyroid adenoma but none of my other doctors have thought that was the case.

I am a bit frustrated with my odyssey from doctor to doctor to doctor.

But I am really happy that I have found this forum. Nice to be in touch with folks who can empathize.

Thanks for your help.

Lissaj

[lissaj]

in reply to: Just diagnosed with Graves #1170146

Hi. I am also 48 and over the last year I have developed unilateral Graves eye disease. I also have Graves Disease antibodies. However my thyroid levels keep coming back normal range or slightly hypo.

I feel awful though. Terrible fatigue, joint pains, heat intolerance, irritability, weepiness, depression, the whole gamut. But I feel like my doctors are more interested in my test result numbers than how I feel.

My mother had Graves Eye disease in the 60s just after I was born and became part of a clinical study.

My older sister had papillary thyroid cancer.

My brother had vitiligo.

I have gone through 4 endocrinologists because the clinic I was going to kept firing them. I have since switched to a Clinic a hundred miles away in a major city that is one of the top 15 endocrinology clinics in the US. My new doctor is better than all the others put together, but I still feel as if he is more concerned with the numbers.

He did say that I have a “heterogenous” thyroid and that this indicates some sort of autoimmune problem.

My eye has proptosis, lid retraction, diplopia to the side and upward gaze, and my eye doesn’t completely close at night.

Does anyone else have this problem of feeling that doctors put too much emphasis on numbers, and what advice would you give?

Thanks,
Lissa Jane

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