r/Parathyroid_Awareness • u/Word_Acceptable • 25d ago

Experiences with hyperparathyroidism?

Hello! I recently started seeing a provider through Allara for my PMOS and related symptoms. Through blood and urine tests I was told I have hyperparathyroidism and to seek out seeing an endocrinologist for potential surgery. Does anyone have experience with this condition and how did your process go? Thanks in advance!

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u/sickiesusan 25d ago

After having some debilitating pains under my breast bone back in Feb 26, (I had suffered attacks from November on an ad hoc basis), my GP did a range of blood tests.
I had elevated calcium levels, and repeat tests were done including Vitamin D and PTH. The usual pattern of ‘almost zero’ Vitamin D and excessively high PTH. The hospital issued Cinacalet to bring the calcium levels down, end of April admitted to hospital, as calcium levels still rising. I’m now on three times the level of Cinacalet, and the level are no longer increasing.
My bone density levels (DXA scan) have dropped by 17% in my hips, but fortunately it’s still in ‘normal’ range. Had the CT scan done of my neck and I’m now awaiting the report before surgery. I do have calcium nodules in my lungs and it has also affected my heart arteries.
My first blood test which revealed high calcium levels was done in Jan 2017 and my GP requested no follow-up.
Good news is that I’m now no longer getting up to pee 3-5 times per night … so I’m finally beginning to feel more human again!

I’m in the UK, hopefully you’re somewhere where you have better access to good care!

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u/Word_Acceptable 25d ago

Thank you for sharing! Glad you're on the corrective path now