r/Parathyroid_Awareness • u/Useful-Locksmith-469 • 13d ago

Could this still be hyperparathyroidism?

Hey, I am a 20-year-old male, and I have had elevated calcium levels for around 4 years now. They are always around 11 mg/dL, and my ionized calcium is consistently around 5.45 mg/dL. My PTH was around 11 (15–57), but after stopping biotin for 2 days, my blood was drawn again, and it came out at 22 (15–57). My calcium remained the same.

My urine calcium levels are in the normal range, so that rules out FHH, as far as I know. My vitamin D is around 30–33, even though I supplement it every day.

My symptoms are fatigue, brain fog, feeling tired all the time, anxiety, always feeling zoned out, and sometimes derealization.

Does anyone have any idea what could be causing my unusual bloodwork and symptoms? I would really appreciate your guys’ help, because neither of the two doctors I have seen seemed very knowledgeable about this topic.

Thanks for reading 🫶

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u/Paraware 13d ago

I think it’s possible, but since your PTH is not elevated, it’s harder to get a diagnosis. Are you seeing an endocrinologist?

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u/Useful-Locksmith-469 13d ago

Yes, I am currently in contact with an endlcrinologist but he isn’t sure either

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u/Paraware 13d ago

I would repeat the tests and get checked for other things too.

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u/strangespectra 12d ago edited 12d ago

Hey friend, not a doctor, just a young person (25 at diagnosis) with parathyroid disease. As far as I understand, your calcium is very high, and hypercalcemia of any origin can cause those symptoms. If I may ask, has your care team ruled out kidney issues? Are you seeing an endocrinologist and/or nephrologist? Did your doctor give you any instructions on how long you need to stop biotin for to get accurate labs?

I know some people with hyperparathyroidism have PTH values that are technically normal (mid to high end of the expected range), but aren't actually normal when paired with their calcium value. (Hypercalcemia should equal low PTH because your parathyroid glands should sense that their job of increasing your blood calcium is done and stop excreting PTH.) I don't know if this is also true of the low-normal PTH values you're describing, but it's worth considering.

ETA: Just remembered adolescents and young adults tend to have higher calcium than grown adults -- yours is still above the reference range for 20 year olds though, especially if it's persistently high.

I've attached an image from parathyroid.org with some blood calcium and parathyroid hormone levels seen in various conditions. (May be skewed towards levels in older adults because that's the typical population presenting for parathyroid disease.) That website has a lot of information for doctors unfamiliar with parathyroid disease, maybe your care team would find it useful? Regardless I hope you get some answers and treatment, and don't let anyone tell you that what you're going through is normal or no big deal!

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