Has anyone else on Reclast developed hyperparathyroidism?
Hi all. I'm an athletic almost 67-year-old runner and weight trainer eating a plant based diet. I went on Reclast 2.5 years ago and about a year after my first annual Reclast infusion developed hyperparathyroidism. My endocrinologist had me on 50,000 Vitamin D for the past 2 years but levels keep going up (they went down briefly but are now at 132 PTH). My endo did not say what caused elevated PTH but I've seen a few references in online PubMed studies to Hyperparathyroidism secondary to bisphosphenates. Does anyone know about this? Any info you can provide would be greatly appreciated!
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About 2 years ago my parathyroid test and blood Calcium levels were high. Rather than risk local surgery, I contacted Norman Parathyroid Center in Fla. The doctor (tele visit) had me stop calcium supplements for two weeks and get tested at LabCorp. Low and behold, numbers from that lab were normal. In fact, the differences in parathyroid hormone were 2 x lower than the local lab. At that time, the labs were using different tests and different analytical standards. The blood calcium was high because of the supplements and wash out time was needed. I'd suggest getting another opinion or at least testing at another laboratory to ensure that your numbers are in fact high. The risk of surgery to the neck is too great, IMO, to not take that step.
Thanks for sharing this. I had something called secondary, non-renal, normocalcemic hyperparathyroidism, which means that my calcium levels were normal. My endo says that the cause of this was low Vitamin D levels, which is a common problem in people with psoriasis, which I have. I no longer have any skin lesions, which I attribute to more than a decade on a plant-based, low-sugar diet with alcohol intake limited to a glass or two of wine once or twice a month. Supplementing with high doses of Vitamin D still didn't raise my levels enough, so my endo prescribed Calcitriol, which is an activated form of Vitamin that is quite a bit more potent. With the Calcitriol, plus 7,000 mg of Vit D3 daily, my D levels are rising and the parathyroid level has fallen from 138 to 88, edging toward the high end of the normal range, which I think is 64. Apparently, the body works to keep calcium in balance as there is a narrow range that it needs to be in and pth hormone can rise to help achieve this. It's much more complicated than I realized ( I write for medical school magazines, but feel like I'd need a degree in endocrinology to really grasp the nuances of this!) I'm so glad, though, that I have a great endocrinologist at Loyola Medical Center in the Chicago area who patiently explains all of this to me, and that we all have this Mayo discussion forum so that we can compare notes. I agree with your advice, by the way!
I received 3 yrs of Reclast and then my % dropped after zi had a spinsl fx. Also my Ca and PTh rose substancaly
After testing and surgery one parathyroid this resolved but bone % dropped greatly.
I was doing great until Reclast but finally ended up on Evenity which I will never do again as pain was horrible. Wish I had seen this before my mess excerated. Now in pain and on a cane.
Adding to the conversation. I was diagnosed with hyper parathyroid before receiving my first infusion of Reclast. My endochronologist monitors it closely and i usually have an ultrasound yearly. There has been no significant change, but what i have found out is hyper parathyroidism can lead to brittle bones.
My Dr is suggesting Evenity or Fosamax as I can't take Forteo or Tymlos because I have parathyroid issues.
How long were you on Evenity before you had pain, and was it joint or muscle pain? Do you think you pain now is related to Evenity? If so, how long has it been since your last Evenity shot? Thanks.
Check with your endocrinologist, but my understanding is that hyperthyroidism only leads to bone loss if your calcium is not in the normal range. The hyperparathyroidism that I developed after a year on Reclast was called “secondary normocalcemic” hyperthyroidism, which means that my calcium levels were normal.