Well I got an earlier appt with new rtheumy, so only another week to wait for that, thank heavens and I hope there is something he can give me. I went and had all my bloods redone as though I am starting out again, just waiting for them to come back.
Saw my endocrinologist and have now been diagnosed with primary hyperparathyroidism, but unless my calcium levels go up or my kidneys become more damaged, (another new thing), they won't do anything except watch and see. Has anyone else been diagnosed with this on top of everything else too?
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Someonesmother
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Yes me! But it was the other way around for me. The primary hyper parathyroidism was picked up first and was thought to be the cause of all my aches and pains. I had the op and when things didn’t get better I was referred to rheumatology. Am still waiting for a definitive diagnosis but am being treated for inflammatory arthritis.
I asked if this would be why I have so much pain and the endocrinologist said no not the level I have. Do you have to take high high doses of calcium to replace what the parathyroids did?
My levels weren’t particularly high but I heard that the levels don’t always predict the level of pain you will have. That being said, I think my PHT was pretty symptomless and the real culprit was the arthritis. The PHT delayed my diagnosis.
As only 1 gland was removed the other 3 do the job fine so I don’t need to take anything - my calcium was back to normal within hours.
I was lucky that my endocrinologist was happy to operate even though my levels weren’t that high.
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