Hyperparathyroidism and parathyroidectomy

[GinJones]

We know that overactive parathyroids (hyperparathyroidism) is a side effect of treatment (and possibly of the  underlying biochemistry of XLH even without treatment), but we don't know the extent to which it exists or what treatment is generally used.

Sometimes adjusting or discontinuing treatment can reduce the parathyroid hormone (PTH) levels, and other times Sensipar (cinacalcet) will reduce PTH levels, and sometimes neither treatment works. Some patients undero either partial or complete parathyroidectomy (removal of the parathyroid glands), but it's complicated surgery and if the parathyroidectomy is partial, we've heard of cases where the glands regenerate and become enlarged again.

Have you had overactive parathyroid glands, and if so, what treatment did you have and was it successful?

[Debbie McFarlane]

Hallo all, I am a 59 year old who has  been on treatment of one alpha & phosphate Sandoz ,for many years - over the last year my blood calcium and parathyroid levels have gone high for no apparent reason, my endocrinologist  keeps reducing the one alpha, but the levels just keep rising.  He is not a specialist in xlh and I want to find out as much information that I can pass on to him and hopefully get to the bottom of what is happening to me. After reading through some articles I am now wondering if it is not the one alpha that is the problem but the phosphate Sandoz. Has anyone else had this happen to them? Thankyou

[GinJones]

According to the Clinician's Guide to XLH, which you can download for free with a link here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3157040/

the elevated parathyroid hormone is due to too much phosphorus supplementation in relationship to the one-alpha (or, as more common in the U.S., calcitriol):

PTH levels are routinely measured, as secondary hyperparathyroidism is common. Increasing PTH levels may be corrected by increasing the calcitriol dose or by reducing the phosphate dose.

So, when PTH is high, the calcitriol (or one-alpha) should be INCREASED or the phos DECREASED. Not the other way around.

Note that the Clinician's Guide is somewhat outdated insofar as it doesn't discuss burosumab treatment (which does not appear to raise PTH levels), but the information about previous treatment regimens is still good.