Does anyone know if there's blood test than can tell if the calcium supplements are in fact going to the right place ( the bones) and not being absorbed into the bloodstream, if so what's it called?
I have been diagnosed, via the DEXA scan, with severe osteoporosis, but I don't understand the explanation for my calcium level being shown in the blood test as 'normal' .
My doctor insist that I take calcium supplements, which I have been taking, but how can we know if they are actually working?
The explanation I was given was that the body adjusts the level of calcium. I read that some people on this forum, have low levels of calcium so I am more confused than ever.
I've just started treatment with bisphonates and would like to know how to monitor the effectiveness.
I also noticed some black spots in my stools since taking calcium supplements. Is that common?
Another thing that has worried me lately, my blood pressure has shot up since taking alendronic acid. I wondered if there was a link. Is that a common side effect? My GP didn't think so, said it was 'an age' thing.
I have an appointment with the specialist on Friday, and in order to make the most of this precious time, I would like to go armed with as much information as possible so that I can ask the right questions.
I would be really grateful if anyone could shed some light on this and help my frazzled brain to understand.
Thanks in advance.
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Cheerleader123
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The most important thing to ensure with calcium is that it is going to your bones and not being leaked into your bloodstream. As simple blood test can check your PTH level - that is to say your parathyroid glands (nothing at all to do with thyroid) are working properly. If the level of calcium in your blood is raised, even slightly, it can be an indication of hyperparathyroidism and no supplements or medication will do any good until the offending gland/s is removed. As soon as osteoporosis is diagnosed this should be checked for but it often isn’t. I was lucky enough for an astute GP to notice this in a routine blood test and I had a parathyroidectomy in due course. Have a read of this. I hope it helps.
Thank you so much for taking the time to reply to my question. I'm glad your GP was on the ball and that you received the correct treatment. I will read the article now.
I had the PTH blood test before starting calcium supplements and bisphonate treatment and it showed a 'normal' reading. It will be interesting to see the results now that I've started the treatment.
So have I understood correctly, the test to see if calcium is being absorbed into the bones is called PTH?
As I understand it the test for PTH is to show that the parathyroid glands are not overactive, i.e. producing too much hormone which would lead to raised calcium levels in your blood in turn causing thinning bones.
Ah I see. Yes, apparently they are miraculously working ok, as my calcium levels were deemed normal and the PTH levels were also normal, even though I've had a lobectomy (10 years ago)
I am trying to find out how we can monitor where the calcium is going. To be sure, if that's possible, that the calcium is being absorbed by the bones.
I've had all the tests to show calcium, Vitamin D, parathyroid etc, but I have never had the one for bone turnover markers. This I will ask for when I see the specialist.
I'm reluctantly taking the supplements and the treatment, but want to be sure they are really working. I'd much rather a holistic approach to treating this.
I hope you can get an answer to your query. After much deliberation I decided against bisphosphonates of any sort and opted for supplements, calcium in my diet and HRT as I have to take a daily PPI.
Great to read of another of us who have been diagnosed with osteoporosis bravely in my opinion…rejecting osteoporosis medications for HRT. Myself - decided on HRT at 79 - was my concerns over side -effects: like possible low risk jaw necrosis with biphosphonates etc, etc. My other question was: do any of the osteoporosis medications actually rebuild quality bone? It seems not. And what happens when one has to cease taking time-limited osteoporosis meds? If one chooses not to be moved onto another osteoporosis medication? Does whatever imperfect bone improvement made cease etc, etc? Another puzzle is why don’t ALL GP’s order a bone marker & parathyroid test BEFORE starting any osteoporosis treatment? With follow up bone marker tests? I know that the excellent ROS has been running since 1988, when I pioneered a self-help chronic pain community charity. As I was a tad envious that they were, even then , sending sophisticated information packs around to every GP. And I couldn’t! So, why are some GPs still so uninformed about following a a strict and hopefully osteoporosis improving protocol? It is a horrible disease which surely merits as high a standard of care & investigation etc, as for cancer care. Was very upset, also, when my GPs - since 2,000 - have refused me a DEXA scan. The last one saying: “Good luck with that!” So, had to wait until I came to France, this year, to find out that I had osteoporosis. That is surely disgraceful…..My friend in Italy has had one every year since the age of 50. NHS preventative health sucks! I digress, as HRT was/is the original reason of writing: to reply to the above member for choosing HRT over osteoporosis meds.’ I recently kindly ordered my French GP equivalent to - SVP - put me on HRT patches! Plus also requesting the dose(a 50mcg patch x 1 a week. ) A years supply duly prescribed….Then to reduce to 25mcg from the 2nd year on if my DEXA scan shows improvement …..All at aged 79! Also bone marker & parathyroid test requested after reading this excellent forum. My French GP, bless him, didn’t seem to have a clue about either osteoporosis treatments or about HRT. My daughter - who is ‘in the menopause here. Tells me that HRT isn’t on there radar in France. ….The pharmacist was also amazed saying that I was unique! I them emd a Professor Richard Eastell: a bone metabolism Guru. (Whom I discovered speaking on a past ROS conference PDF) To ask him about HRT. As there aren’t seemingly any random control trials concerning HRT v osteoporosis medications trials. He kindly replied straight away. Advising bone marker tests and not agin HRT - bar possible increased stroke/HA risk/slight breast cancer risk. But at my age of 79…..isn’t everyone at risk! V healthy & active etcetera. Better end for now….
It’s not an easy decision to reject medication is it? Mine was prescribed over the phone by a nurse who knew nothing about me reporting the results of a DEXA scan I was sent for because I had broken my wrist. She simply told me I had osteoporosis and I would have to take Alendronic Acid. At the time I was being treated for MALT lymphoma of the stomach - can you imagine what an oral bisphosphonate would have done to me? Around the same time an astute GP noticed the calcium level in my blood was raised and referred my to an endocrinologist in case I had hyperparathyroidism which it turned out I did. AA would not have had any effect whatsoever until the offending gland was removed but despite this the consultant pushed me to take it and actually threatened me with what would happen if I didn’t. The gland was subsequently removed and I like to think that because of this surgery there was some improvement in my bone readings, Some months later I started treatment with an osteopath who asked how long I had had scoliosis - I didn’t even know I had it or for how long, it could have been decades! .This should have been pointed out to me at my DEXA as this reduces the accuracy of the scan quite considerably. It wasn’t. Good old NHS again. Fortunately I have a great GP who, being aware of my ongoing concerns about taking a PPI for my stomach issues, suggested HRT patches and I am only too happy to keep on with these and yes I am aware of the risks. I think considering the fact that I have taken a PPI for more years than I care to remember and suffered from hyperparathyroidism for heavens knows how long before it was detected the HRT I took for many years in my 40s and 50s may well saved my poor bones from being very much worse! I now refuse DEXA scans, they are of no use to me. If my osteoporosis is stable that’s fine, if it’s deteriorating then I’d rather not know as I am doing all I possibly can to control it and can do no more.
Hello back….Thank you for your kind reply. I have also purchased a MARODYNE LiV vibration platform. Just over €3,000. Not easy to find the money but I have re-listened - a few times - to its inventor: Dr Clinton Rubin. When interviewed by the excellent osteoporosis expert, physical therapist: Margaret Martin. Who cuts through so many issues concerned with osteoporosis. The difference between his vibration platform and the commercial ones is that he invented it for osteoporosis and it also vibrates up the spine. Hope this helps…every little helps!
Hello back….I, too, was using a low intensity vibration platform. Dr Clinton Rubin was v critical of the power plates with a stand, though. Re detached retina risks & ear problems etc. The ROS approved the one I bought but were doubtful of those using it with a hip implant. Whereas the MARODYNE LiV is OK. Re DEXA SCANS. I am reading: Dr Lani’s Bone Health Guide. She emphasis how much the scan depends upon the skill of the radiologist. The positioning matters v much, too. So your undiagnosed scoliosis would v probably affect the result. She also says that with any following scan the client(don’t like the word:patient - as it means: to suffer!). You must be positioned EXACTLY AS BEFORE…..WOW! Makes it all read as if getting an exact DEXA is a bit of a lottery, anyway…. In France, there isn’t an osteoporosis specialty, as such. As in the UK. So, it depends upon an interested rheumatologist, usually, tacking osteoporosis onto his area of interest. Not good enough. If ROS are reading this, shldn’t they be campaigning for osteoporosis being its own speciality? Maybe they are….As upon diagnosis, which is quite scary and overwhelming and puzzling, all of us should be automatically flagged on to see an osteoporosis consultant. It is outrageous to read of a forum member, for example, saying that she had been on an osteoporosis medication for 4 years, I think it was and had not had any bone marker or parathyroid blood tests. Only for her to then discover that her osteoporosis medication hadn’t worked, That’s surety criminal. As they all have side effects. With the alendroates, for example, affecting the jaw making dentists wary of treating you etc. I thought that my chronic pain members were all too often woefully mis/under-treated. But osteoporosis can be a life- threatening condition especially following hip/ femur fractures . We in the UK & here in France require specialist osteoporosis consultants. Must research to see if any other countries have the luxury of osteoporosis being taken seriously! Thank you for yr kind reply.
My scoliosis would undoubtedly have affected the DEXA results, it would have been good to have been informed of that at the time as well as being tested for hyperparathyroidism. More failures on the part of our wonderful NHS! My osteopath, whom I rate very highly, is of the opinion that as all women lose bone density as they age too much emphasis is placed on diagnoses of osteoporosis especially as the drugs used for treating it often do more harm than good. Perhaps she has a valid point so maybe France has got it right.
Hello, I've asked for the bone marker blood test (P1NBP) from 3 different doctors.
My GP, an Endocrinologist and an osteoporosis 'specialist' who turned out to be a rhumatologist.
The endocrinolgist thought it would be interesting to have this done, but preferred to wait to hear what the 'specialist' decided, the GP said it was only used if the other blood tests (CTX) flagged up anything abnormal and would only routinely order this test if I was taking a different medication, or had a specific illness.
The 'specialist' reiterated what the GP stated, that this blood test (P1NP) wasn't necessary as a measure for osteoporosis and said that crosslaps (CTX) were the tests routinely used to measure the bone turnover.
The factsheet from the ROS website has some good information about the different tests.
My last blood tests were done over a year ago (March 2023) which included the parathyroide (PTH) blood test and the crosslaps CTX, plus a whole plethora of tests to check liver, kidney function etc. and all showed a normal reading apart from low vitamin D.
I had a Dexa scan in Novemeber 2023 and was diagnosed with severe osteoporosis so based on this scan I have been advised to take alendronate for 2 years and have blood checked again in 6 months time and have a follow up DEXA scan in 2 years!
I wrongly thought the specialist would be able to at least recommend a nutritionist, physiotherapists (with osteoporosis knowledge / experience)- nada!
I also raised the question re: HRT and was told that this wouldn't be an adequate treatment for me.
As I am taking extra calcium supplements with vitamin D3, and I am worried that I'm taking too much calcium (because I already consume a lot of calcium in my diet), so the specialist agreed to have this checked and has ordered a 24 hour urine test to check my calcium levels.
There is nothing wrong with calcium in your bloodstream. It is quite necessary for it to be absorbed there from the digestive tract. It can also be released from the bones into the blood. The dynamics of the systems involved in maintaining/modulating your serum (blood) calcium levels and bone density are complex. There is no one test. A picture emerges from looking at serum calcium, DEXA, parathyroid, vitamin D, bone turnover markers, etc.
It is the perfect subject to discuss with your specialist. If you want to do your homework in advance of your appointment, I would advise calling the office and asking for prepatory reading material based on this question. That material should fit the way that particular specialist thinks about and explains it to patients, which should put you a step ahead in any in-person dialogue.
Hi - you may want to look into Vitamin K2 also. There are articles out there that suggest it helps direct the calcium supplements towards the bones. Also I believe it’s ideal to take calcium supplement with vitamin d to help with the absorption. I try and get as much calcium as I can via diet (including a drink of kale/cucumber/celery/apple/beetroot juice & water - tastes better than it sounds !) plus Viridian calcium and Vit D supplement plus K2. Appreciate everyone is different though. Hope this helps & good luck with your consultant.
Will measure how much I put in over the next couple of days and let you have it. - re the vitamin K - there is K1 and K2 and it’s the K2 that helps direct the calcium to the bones. Think K1 is involved in blood thinning. It’s worth reading up on.
PTH is made by four tiny parathyroid glands in your neck. These glands control calcium levels in your blood. When calcium levels are too low, the glands release PTH to bring the calcium levels back up into a normal range. When your calcium levels rise, the glands stop releasing PTH. Measuring PTH can help explain the reason for abnormal calcium levels. PTH blood test can help your doctor figure out whether your abnormal calcium levels are caused by your parathyroid glands. If your test shows that your PTH level is appropriate for your calcium level, then there is some other cause of high or low calcium levels. Your doctor may recommend this blood test if you’re showing symptoms of hypercalcemia (too much calcium in your blood) or hypocalcemia (too little calcium in your blood). This is not a test for how much calcium is getting to the correct places in your body, including your bones. Bones are the largest "storage" of calcium in the body...but calcium is also important for blood clotting, cardiac function, muscle contraction, improving cholesterol levels, and preventing preeclampsia in pregnancy.
How can you find out if your bones are getting enough calcium? To my knowledge, there is no specific test available.
Vital is to obtain enough but not too much organic calcium through foods, Vit D3, Vit K2 and Magnesium. Vit D3 is most important in the interactions, but K2 puts it in the right places. Calcium can be dangerous if you are taking the "rock" inorganic type...Tums is an example....organic such as algae calcium is safer...but many doctors are lowering calcium or stopping the supplementation, especially if you have cardiac problems. Ask your doctor specifically if the type you take is safe.
I've had numerous surgeries in the last two years, 12...had pre-op testing, and the last one was reviewed as clean, clear arteries, "no seen" heart disease, which was the same as the last MRI and CT scan. Vit K2 is vital for those "clean" arteries as well. I learned this from my mother's cardiologist years ago...he didn't get her to stop taking the Tums 3x a day...he tried, but she was stuck with bad info from years back...She only started K2 the year she died, with 600 blocks in her 100 lb body...not enough time to work.
Thank you so much for taking the time to reply to my query. My PTH levels were ok apparently as was the calcium levels. This caused my confusion as to why I had to take the supplemts. I will bring this up with my consultant tomorrow. I'm taking calcium carbonate and I've tried asking for a different one from GP, without success. I also include enough calcium through my diet and this was another concern that I make have too much calcium now. I haven't had a blood test since taking the supplemts or treatment so will discuss this also during my appointment. Glad you've got the all 'clean' and I'm so sorry to hear about your mum.
I just started taking Vitamin K2 along with my calcium and magnesium (all at different times). Would you mind sharing the dosage of the K2, D, magnesium, and calcium that you are taking? Sorry about the loss of your mum.
Remembering we are all different...I have my Vit D3 checked twice a year, and live in a very sunny area. Vit D3 I take in the morning, 5000 iu. Levels stay at 60. I have autoimmune, so I need it higher as we don't convert from the sun well. Calcium supplements I do not take at all, my calcium is monitored 4 times a year, and because I take Tymlos, calcium levels stay at 9.8 to 10.0, and the "line is 10.0" for blood calcium to be safe...per the doctors at Tampa FL who took out my parathyroid tumor...Norman Parathyroid Center. Lab level values are not accurate and allow a higher number due to children being included in the numbers...children can be higher, not folks over 35. But when I was taking a supplement, it was True Osteo, which has a great combo product. Vit K2 , MK7 I take in the morning, it's 180 mcg. In the evening I take MK4, 400 mcg. Magnesium I take the glycinate form 3x a day, 400 mg per dose. I take this amount to help with autoimmune conditions, it helps with over 300 processes in the body...the standard amounts are in most cases far too low. If I'm having tons of muscle spasms, I'll add an extra dose. My last scan (for pre-op) showed zero heart issues, zero blocks, the radiologist asked what I was doing to keep them all so clean. Vit K2!!! Two other supplements I use are BioGaia Osfortis, which is a probiotic for women for their bones; and Lactoferrin, which comes from mother's milk and helps bone growth, both have clinical research for good outcomes.
I believe that the protocol for prescribing bisphosphonates is that calcium+vitD3 supplements must be prescribed alongside. That is because bisphosphonates can cause calcium depletion in the body (due to the slowing down of bone resorption). It's in GPs' instructions to prescribe them together.
Regarding your GP's rather dismissive response to your report of a sudden increase in your blood pressure, I don't think that age-related increase would be a sudden event. In my opinion (I should add, I am not medically trained) it would seem far more likely that any sudden change experienced shortly after starting a new drug would be very likely related to the effects of that drug.
Thank you for replying to my query and for the clarification regarding the supplemets. That makes sense now. Just need to get to the bottom of these new symptoms and armed with this new information, plus all the replies above, I now feel confident about what I need to ask.
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