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.
I know I year has past and I hope you have some further answers. I am an active 58-year-old recently diagnosed with osteoporosis. (I had to push for a DEXA scan since I measured 2" less than I had since I was 14.) I too have high PTH indicator (108). My calcium levels are within normal limits as well as my vitamin D, but my vitamin D is on the lower end (31). I was put on Fosamax (a weekly Bisphosphonate) and was suggested to do Reclast.
I questioned doing the Reclast because of my high PTH and if it was determined I needed a different treatment option, I would have to wait to do so for a full year. They don't plan to retest my PTH for 6 months. My T-scores are -3.6 Lumbar Spine, -2.0 Right Femoral Neck, and -2.1 Total Right Proximal Femur/Hip.
In doing some research about my options, I ran across this doctor peer to peer discussion/training on standard protocol for osteoporosis - antiresorptive followed by anabolic. The studies showed that doing the anabolic agent first followed by antiresorptive yielded greater BMD and that the antiresorptive followed by anabolic blunted the BMD response. Don't we all want more BMD if we have osteoporosis!! I was told, however, I can't do the anabolic because my PTH is high. I too am researching and looking for a second opinion to determine if that truly is the case. Since the Parathyroid plays such a key roll in all of this, I want to have my questions answered.
Here is the link to the discussion if you are interested Google this: Combined and Sequential Approaches to Osteoporosis Therapy, source Cleveland Clinic
In addition, here are some additional sites I have found but haven't fully read them, just skimmed to see if they might yield some insight.
Endogenous intact PTH is suppressed during Teriparatide (rhPTH 1-34) administration in postmenopausal women with established osteoporosis - PubMed
Chronic hypoparathyroidism and treatment with teriparatide - PMC
Teriparatide in postmenopausal osteoporosis: uncovering novel insights into efficacy and safety compared to other treatments – a systematic review and meta-analysis - PMC
As new member, I can't post the links, but you should be able to get there as those are the names of the studies.
I hope this helps.
@jenniferinva2025, I noticed that you wished to post a URL to an article with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.
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"Endogenous intact PTH is suppressed during Teriparatide (rhPTH 1-34) administration in postmenopausal women with established osteoporosis"
- https://pubmed.ncbi.nlm.nih.gov/18520104/
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"Chronic hypoparathyroidism and treatment with teriparatide"
- https://pmc.ncbi.nlm.nih.gov/articles/PMC8087564/#Sec7
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"Teriparatide in postmenopausal osteoporosis: uncovering novel insights into efficacy and safety compared to other treatments – a systematic review and meta-analysis"
- https://pmc.ncbi.nlm.nih.gov/articles/PMC11457814/
May I ask who your endo is at Loyola...my daughter is on Synthroid (she's 32) and only has a primary care doc. As I have been diagnosed with osteo I've been telling her constantly to get an endo but she doesn't have recommendation yet. I have been on Fosamax for a year; having stomach issues so doc wants me to do a Reclast infusion (bypassing stomach) which scares the daylights out of me. Chances of side effects are not high however the side effects if they happen sure sound worse than the disease. Good luck to you!
Hi — my endocrinologist at Loyola Medical Center in Maywood Illinois is Rod Arceo Mendoza MD. Does your daughter have thyroid issues (rather than parathyroid issues like I have — in a previous post I mistakenly described what I had as hyperthyroidism instead of hyperPARAthyroidism, which may have confused some people — completely different condition and body part!) Dr. Mendoza is a great doctor with a good deal of compassion. Regarding the Reclast, my experience with it (other than the hyperparathyroidism, which it turns out was not caused by the Reclast, but by low vitamin D levels, according to my endo) has not been bad. Barring fatigue for a few days following the annual infusions, I haven’t had any bad side effects. I’ve had four infusions over four years. Drink a lot of water before and after the infusion and ask for the infusion over 45 minutes instead of 20 minutes and flush your kidneys well by drinking a lot of water afterward. After breaking 14 bones over the course of two decades, I haven’t broken a bone since I started the Reclast, and my Dexa scan numbers are getting better, and my bone breakdown rate is slowing as well. All in all, it is far preferable to being in a cast or a boot or having the two surgeries to put screws and a plate in my hip wrist. (Nothing like spending a week in the hospital during the early phase of the COVID pandemic.) Just be sure to have any invasive dental work such as extractions or implants done before you start. There is a protocol for women on Reclast who need extractions (I had to have two wisdom teeth extracted during my third year of Reclast treatment) and luckily my oral surgeon was trained by the professor who developed the protocol. It involves taking antibiotics and having blood drawn on the day of the extraction, which they spin in a centrifuge to create a clot that is placed in the hole where the tooth was to promote healing. It all went well. This was to prevent infection. Not sure about implants tho. My endo explained that the fear many of us have about osteonecrosis of the jaw (listed as a rare side effect of Reclast) has to do with the treatment for women with bone cancer, who get infusions every 6 weeks, not just once a year. This made me feel much better! Remember the pain and mobility issues that come with broken bones, as well as the risks associated with hip surgery, such as infection. I’d much rather deal with Reclast issues than any more broken bones or more metal in my body. Breaking my hip was devastating— as I was an active and very fit runner training for a half marathon when I broke it. I spent a full year in rehab, starting with a walker. I’m now running again and weight training but coming back from that surgery was really challenging. My mother also had severe osteoporosis and just took Fosamax (which gave her stomach issues as well) and ended up in a wheelchair because her hips broke so many times that there was no hip socket left on one side and she was left with a floating femur and no socket to hold it in place. Her quality of life was terrible. I’m glad I took this path and think it’s important for everyone to consider the risks and low quality of life associated with fragile bones. BTW, my endo also has me strength training with barbells 3x a week because stronger muscles mean stronger bones and she says the Reclast and the strength training together are much more effective than either one alone. Each time I think about skipping that group strength training class, I hear her voice saying “I can’t stress enough how important it is for you to continue strength training,” and I head to the gym! I recently read that “When your muscles go away, your bones go away.” That’s a scary thought! A good book to read is Next Level, by Dr. Stacy Sims, about how to stay strong and active after menopause. Very inspiring! Good luck on your journey. Happy to answer any other questions!