Primary Hyperparathyroidism : I was diagnosed... - Bone Health

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Primary Hyperparathyroidism

Cappuccinobaby profile image

I was diagnosed with osteoporosis whilst being investigated for hypercalcemia. Turns out I had a tumour on my parathyroid gland - primary hyperparathyroidism. I was told this caused my osteoporosis because the parathyroid glands control the calcium in our bodies. Mine was out of control and leaking calcium from my bones leading to loss of bone density or in other words OSTEOPOROSIS. I have now had surgery to remove the tumour. My bones will no longer leak calcium. With the help of calcium supplements, magnesium, boron, vit d3 and vit k my bone density will improve. My surgeon tells me that the osteoporosis may be reversed some what. Please get your calcium levels checked if you get an osteoporosis diagnosis......it may not be the case for everyone but a simple blood test could make a massive difference..

38 Replies

I would add to that, if you're diagnosed with osteoporosis please ask for parathyroid levels to be checked at the same time as calcium and Vitamin D, as it's possible to have hyperparathryoidism with normal calcium levels. Unfortunately many GPs don't routinely test for this following an osteoporosis diagnosis, yet it's essential to check for potential underlying causes.

Cappuccinobaby profile image
Cappuccinobaby in reply to Met00

That is very true. Normocalcemic hyperparathyroidism. Problem is lots of GP'S test calcium 1st and if it comes back normal range they take no further action so its important to be persistent

My endocrinologist did not check my PTH before putting me on osteoporosis meds and I didn't know to ask until about a month ago when I requested that he check it. He did the blood test and I am currently waiting for the results but I have since read that being on bisphosphonates can make the test inaccurate. Do you have any info or know anything about this?

Bisphosphanates are regularly used to reduce calcium levels. You really need to have parathyroid hormone calcium and vit d tested from the same blood draw with the blood for the parathyroid hormone being sent in an EDTA tube as it contains preservatives as parathyroid hormone spoils very quickly. Ideally it needs to be taken in the hospital haematology dept. If it was me I'd stop the AA then get my bloods re done. Look up hyperparathyroiduk.com. Good luck

Thank you. Unfortunately, I just had my 1st zoledronic acid infusion in November 2021 so that ship has sailed. In 2019 my 1st DEXA scan showed my lumbar t-score -3.9 and in 2021 my second showed my lumbar t-score -3.7 (so not a statistically significant improvement) but one of my hip numbers increased by 9% which might be a sign that the bisphosphonates kind of worked which might be an indication that it's not a parathyriod issue.

At this point, I am somewhat exhausted, nervous about what the future holds, and very disappointed with the US healthcare system and my doctors for just being so miserable. My bone loss could have easily been found much earlier when it was still osteopenia if I had a doctor who did his/her job.

My goal right now is one year of figuring out what I can because the zoledronic acid is in me now and it's not going away for years. I was diagnosed at 50 and am 53 now. I've never had a fracture. I woke up this morning and declared that I'm not taking any more drugs (infusions) for osteoporosis and I will try to deal with this naturally and if I only get 10 more years that is just the way it goes, but honestly, I might change my mind again.

I just can't believe I am having to do this much freaking work because none of my doctors bothered to order the DEXA scan for me earlier. I went through a very early menopause. They should have known to instruct me to get the DEXA way earlier and then it might have been caught at a time when I would have had a much better chance of reversing it naturally.

My current goal is to get a second opinion and to go armed with this list of tests betterbones.com/testing/wha... to all future appts. I know for certain that my endocrinologist never performed even one single urine test in the 5 years that I have been seeing him so who knows what has been missed.

Note, I did have low vitamin d that my endocrinologist did catch and I have really increased my vitamin d level. I take supplements but I think that my having stopped wearing sunscreen is what really helped most. I used to never leave the house without it because I have fair skin. Now, I get my 15 minutes of exposure on most days and just avoid peak sun hours.

Again, thank you.

If you aren't going to have any more osteoporosis drugs give it a few months then go get your calcium and pth measured x

Sounds a strange thing to say but it’s good news that a ‘fixable’ cause has been found for your osteoporosis. There is real hope for your bones now. Good advice too, I am constantly shocked at the number of people on here who haven’t had their parathyroid levels (or in fact many other things) tested before being prescribed what are very powerful osteoporosis drugs.

I know I think it should be checked automatically

Like you Cappuccinobaby I was found to have hyperparathyroidism causing my osteoporosis and had the tumour removed last year. I was unaware of the condition which was picked up by an astute GP in my practice. It could so easily have been missed.

Have you had a new dexa scan done yet. I'm curious to know if your T score had improved x

"was picked up by an astute GP in my practice." How did they discover it?

Blood test for calcium parathyroid hormone and vit d. The 3 control the calcium in our bodies. If its out of whack the parathyroid constantly release calcium from our bones.leading to osteoporosis and/ or kidney stones as well as possible cardiac arrest if left untreated. A simple blood test is all that's needed. If calcium or parathyroid hormone are high its needs investigating x

I was diagnosed with osteoporosis and was encouraged to take biphosphonates and when they caused such bad side effects switched to Denosumab (Prolia). I then did research and found out about hyperparathyroidism. I had never heard of parathyroids before. I am now 5 weeks post op and starting to feel myself again. I am so cross that GPs, Rheumatologist and even the Royal Osteoporosis Society did not mention the possibility of hyperparathyroidism. I believe parathyroid levels should be tested as soon as osteoporosis or osteopenia is diagnosed or suggested and even if calcium is normal as normocalcemic is real, and surgery can help your bones heal.

Hope you aren't taking the osteoporosis meds any more and that your bone health improves

No I’m not taking the nasty drugs. My surgeon is convinced that my bone density will improve over time.

Mine said the same. I'm desperate for a dexa scan but sadly I'm only 6 months post parathyroidectomy 😒

I’m only 4 weeks. Are you on the hyperparathyroid UK Action 4 change Facebook site?

I am, do I take it you are?

I am! I posted yesterday with good news from SK!

You can only be one person then🤣🤣🤣

Are you LHN?

I am the very same 🤣🤣🤣x

I'm happy you are feeling better and I'm sorry you were unnecessarily prescribed such serious medications that, from my understanding of parathyriod related osteoporosis, would never have been able to increase your bone density.

I didn't know what the parathyriod glands were until a few months ago when I started searching for information on "how does the body regulate calcium" to see if I could somehow improve my calcium absorbtion rate and that's when I was hit with a bunch of parathyriod info. Then I discovered Dr. Brown's BetterBones.com list of tests doctors should be doing before slapping women on osteoporosis meds. betterbones.com/wp-content/... Note, my endocrinologist did not run these tests before prescribing bisphosphonates and I didn't know better. I took alendronate for 1.5 years, took a 4 month holiday, and then had my 1st zoledronic acid infusion in November 2021. I hate taking meds and am concerned about the potential side effects and the fact that my doctor doesn't seem to have enough time to answer my questions and didn't really check everything that should have been checked. When I saw him on 12/30/21, I asked him about my parathyriod and if he had ever checked my PTH levels and he said no and he then offered to run the blood test so I agreed. I'm currently waiting on the results. But since 12/30/21, I found out that taking bisphosphonates can cause high parathyriod hormone levels--my doctor didn't mention this.

Hi! I wouldn’t have known anything about it had I not been told by somebody. I asked my Consultant if they had checked it and they had but they did check it again. The thing is you would just think it’s Osteoporosis and that is that. You are very lucky they’ve found it. I’ve now had seven fractures in my back. I’m on treatment for it but five months into the second treatment I had another four fractures. I’m ok as long as I don’t do anything much. But I’ve always been used to doing everything. It’s very hard to let someone do it for me.

Have you been tested for hyperparathyroidism?

Yes I’ve been tested twice.

Do you know you know what your readings for calcium and parathyroid hormone are?

No idea. They don’t tell me anything and I never knew anything about it until someone mentioned it. I still don’t know anything about it.

Are you in the UK? If you are you can request copies of ALL your test results no matter whether they are bloods xrays or scans. They are about you and you own them no one else. If you ask for blood results they also show the range used by the labs so you can see where your levels lie. Ask for them in writing 😊

I totally agree, our GPs need to know more about this silent killer. Killer maybe too strong a word but the effects on our bodies with the calcium moving from our bones into our blood and the consensquenses in kidney health is very damaging. I also had a parathyroid removed (December 2021) due to hyperparathyroidism. I had been previously diagnosised with osteoporosis many years ago and was first given medication for it, which I stopped taking as I didn't like the side-effects etc . My first symptom of hyperparathyroidism was acute exhaustion. Initially my doctor told me I should exercise more as she thought I looked 'healthy' but luckily for me, decided to do a round of blood tests. When the calcium level didn't look right she asked for a parathyroid test and was surprised to see my levels showing hyperparathyroidism. It took about 18 months of further scans and tests before I was finally given the op and although initially I didn't feel that much better and my levels of parathyroid fluctuated in the first 6 months or so after - I'm not sure why - I am now experiencing a higher energy level and enjoying life a bit more. Thank you to other contributors for raising this important issue and also stating that calcium levels don't always show if you have it.

Has your osteoporosis improved and how are your calcium and parathyroid levels now ?

Hi Cappuccinobaby, From my last Dexa scan which was about 2 years ago my OS has 'stabled' i.e. not got any worse since my first scan more than 15 years ago and considering I haven't taken any medication for more than 10 years I was quite happy. My last blood results taken in October have normalised. But the biggest indication for me was my energy levels. I am getting back into walking cross country, up and down hills, in all weather. Yes I still get tired but I'm not a spring chicken. I don't take calcium supplements because of reduced kidney function but do recommend VitD3 with K2 which I take by spray into the mouth as my stomach doesn't seem to allow absorption via the stomach lining. I hope this answers your questions and wish you a successful recovery. Happy New Year!

Thank you. I'm still new to it all. My osteoporosis was diagnosed as part of hypercalcemia investigations. My t score is -2.7 at the hip. I had surgery to remove a parathyroid adenoma in June 2021. I am currently supplementing with magnesium, boron, vit d3/k2 (mk7 ) in spray form and calcium. I have my 6 month post surgery bloods due in the next week or so. I still learning about post surgery life. My energy levels are amazing as is my cognitive output. Majority of my pain has gone. So far so good. I'm always interested in how others are coping . Here's to continued good health x

Happy that was caught and YAY because your bones might just get back to a good density now that you have had the surgery. Do you know if one can have normal calcium levels and still have a parathyroid issues?

Yes there is something called normocalcemic primary hyperparathyroidism where parathyroid levels are high and calcium normal because you have a lower set point for calcium which for you could mean slightly high calcium is actually really high for you. Look up Dr Larian he is based in Los Angeles and hyperparathyroiduk.com x

A year and 10 months ago I had the same surgery. Had a parathyroid adenoma removed. My primary care dr for years never brought it to my attention that I had high calcium in my blood! I finally after 8 years woke up and took notice of my labs and questioned why my calcium was so high.... he finally said I may want to see an endocrinologist! Good grief! My done density did show improve the somewhat but this past year I became lackadaisical and didn’t exercise properly or watch how much calcium I was eating....my bone density scores went way down because of it! I’m now trying to get back on track with free weights and eating 1200 mg of calcium everyday. Women need to be aware... men too! Have your calcium checked when they do blood work!

I can't get 1200mg calcium from my diet. I get around 7-800mg so am supplementing with 500mg per day along with 300mg magnesium 50iu vit k ( mk7 ) 2000iu vit d 3 and 3mg boron plus I try and walk 5 miles a day so fingers crossed my next dexa with show an improvement 😊

I agree it is difficult to get calcium requirements from food. I eat cream of wheat in the morning with 1 cup almond milk and that’s 629 mg. I add a cup of calcium rich oj for an additional 350 and a smoothie with kale and another cup almond milk with fruit and that gives me my daily requirement with no need to take a supplement

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