Hello everyone, this is my first post to Bone Health, but I have posted to other Healthunlocked forums recently as I’m trying to work through my various health issues. I’m in the UK and hoping to get some advice from those more experienced than me please.
I paid privately for my first DEXA scan in April 2023 at age 44 as I wanted a baseline due to my Mother having osteoporosis (worsening) and my Granny had it too. It appears I’ve already developed osteopenia (I’m perimenopausal) with a couple of vertebrae close to osteoporosis.
I appreciate these are not terrible results compared to most but I want to give myself the best chance of preventing, or at least slowing down progression, considering I’m quite young and have not yet gone through menopause. I realise there is probably an inherited aspect to this too.
The last few months I’ve been doing much research. My GP (rightly) said medications were not warranted but didn’t offer further advice past vit D, calcium and exercise.
Background - Before the scan I was already eating leafy greens at lunch and dinner, tofu a couple of times a week and plenty of almonds (I don’t eat dairy or meat). I used Chronometer for a couple of weeks to track nutrient intake and I seem to get between 500-1000mg calcium per day (no calcium supplements). I take a vit D supplement and keep my levels between 125 and 175 nmol/L. I also take 180mcg of K2-MK7. I struggle with weight baring exercise as I have a bad hip.
Since the DEXA scan I have started HRT due to perimenopausal symptoms but also hoping for bone protection.
My Father is Coeliac and I definitely don’t tolerate eating gluten on a regular basis. I can’t take the test for Coeliac as I would be really ill with IBS if I ate the required daily amount to get accurate results. I have now avoided gluten religiously for several months.
I take an antidepressant and have done for years, I suspect this may have an impact. I have also read iron deficiency can cause bone loss and I have been iron deficient with and without anaemia most of my life. I developed very heavy periods 7 years ago. I had a terrible, nutrient poor, processed diet until I was in my early 30’s. I now eat a wholefoods, plant based diet.
My serum calcium looks fine at 2.32 mmol/L (2.20-2.60). GP said a parathyroid hormone test is only warranted when calcium becomes high.
I have some questions I’m hoping someone with more experience could answer please?
1. Could there be a secondary cause that I’m missing? Or is there something I could change?
2. I don’t understand why L3 and L4 are so much worse than the other 2 vertebrae and the hip – it seems strange to me. What do you think, could the scan have been messed up? Is it worth doing a REMS scan to check?
3. Is it possible to have a parathyroid problem yet perfectly normal serum calcium levels? Should I pay for a private PTH test or can I rely on my calcium result saying there’s no parathyroid problem?
4. Do I or don’t I take calcium supplements? There seems to be evidence for and against. My diet intake is on the low side but I fear calcium supplements can build up in undesirable places. So confusing this one!
Any recommendations would be most welcome please 🙏
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Bertiepuss
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Hello Bertiepuss and welcome to the Bone Health forum. It sounds like you're being very thorough in your approach to bone health, which should stand you in good stead for the future. I'll attempt to answer your questions:
1. Your serum calcium doesn't give any indication of how much calcium is actually reaching your bones. Usually the body (through the action of the parathyroid glands) prioritises calcium in the blood, so if your intake is insufficient, your bones will lose out. As you say you've calculated you get 500mg - 1000mg a day from diet, there is a possibility that this may not be sufficient, particularly given that you have IBS (which can reduce absorbency of nutrients). It's also possible that your previous poor diet could have resulted in less than optimal peak bone mass around the age of 30.
2. The first thing I noticed was the difference between L3 and L4 compared to L1 and L2. Guidelines from the International Society for Clinical Densitometry recommend that if 2 adjacent vertebrae have more than 1 standard deviation difference, one of them should be excluded. Of course, with your results, it's unclear which of the L2 and L3 results should be excluded! I also noted that L3 and L4 are quite divergent from your neck of femur. Personally I would definitely question this, but I would also want to know the actual bone mineral density (BMD) measurement at each site for further clarification. The BMD should be lowest at L1, increasing with each lower vertebra and therefore highest at L4. Your t-scores suggest this may not be the case, in which case that also suggests a further error. The ISCD also recommends z-scores should be used in preference to t-scores for any pre-menopausal woman! So yes, if you can afford it, please do get a second opinion from a REMS scan! It's perfectly possible that an error has been made with one or more measurements, which could either mean your L3 and L4 scores are actually similar to L1 and L2, or errors have been made with your neck of femur and L1 and L2. Either way, your average spine score (which is what they should use, not any one or two individual vertebra score) should be similar to your neck of femur score. In addition, REMS will give you a bone strength reading, which is far more important than bone density!
3. Although rare, there's a condition called normocalcaemic hyperparathyroidism, where your blood calcium is normal but your parathyroid raised. Unfortunately many doctors appear to be unaware of this! I would recommend going back to your GP and ask him to test for this too, which means checking calcium, vitamin D and parathyroid levels at the same time, as they all interact with each other.
4. I would definitely recommend increasing your calcium intake through diet. There are a number of good dairy alternatives fortified with calcium, for example soy and oat drinks and yoghourts, which give the same amount of calcium as is found naturally in dairy. If, however, that isn't an option for you either, a small amount of calcium supplement is unlikely to cause any health issues, given that you're taking Vitamin K2, which helps send the calcium to your bones. Calcium citrate is more readily absorbed than calcium carbonate.
HRT is recognised as being good for bone health, so that's a positive move you've made. You've explained that exercise is difficult, but I'd encourage you to do what you can. In most cases, exercise is actually good for the joints too and is definitely recommended for arthritis, having been shown to reduce pain and make surgery less likely to be needed! Of course it depends what's causing your bad hip, but it might be worth seeing a physiotherapist for advice on this. Are you able to exercise with weights and resistance bands, even if mostly while sitting? I'd also point out that you may actually have nothing to worry about at all, as if your neck of femur result is correct and your spine result should match that, then you wouldn't be far into the osteopenia range.
Hi Met00. Thank you very much for such a comprehensive answer, your reply is most helpful. I’m sort of pleased you think the difference from L2 to L3 is strange and needs a re-evaluation. I’m going to book a REMS for next year and have persuaded my mother to have one too. We are both quite small women and I wonder if DEXA is not that accurate for us. As you say, bone quality is very important. Interesting you said L4 should be higher in BMD than L1 as my mother’s DEXA scans, like mine, have been the other way round. Maybe a genetic thing? My Z-scores look quite a bit better, in fact are not osteopenic (just), barring L3 and L4. I did have a nasty fall down the last step of my stairs a few years ago. I landed heavily on my bottom which resulted in a hematoma that took about 6 months to fully reabsorb. I wonder if that could have done anything to L3 and L4?
The total spine T-score was -2.0 whereas hip was -1.6 so not so much of a difference actually, it’s just that L2 to L3 jump that’s puzzling.
Have you had a REMS personally yourself, if so, what was your experience please?
I’m waiting for MRI results on my hip so will have to see if there is a problem that can be corrected or whether the pain is actually referred from my back. Many years of physio have not helped hence the MRI, finally. I do use resistance bands for my upper body and do what I can that’s body weight based for the lower body but that doesn’t aggravate the hip too much. It’s something but really not enough to make a difference – no weighted squats or dead lifts for me!
Thank you for the info on the parathyroid, I will have to look into this further as it seems I cannot fully discount parathyroid issues just based on the serum calcium level. I will approach my GP, she is going to throw her hands up in despair that I’m back yet again!
Yes, I've actually had 3 REMS scans. My first one was 4 years ago, 15 months after my second DEXA scan. DEXA had given me a spine score of -3.6, while my hip score was only -2.5. I've got hold of my full DEXA results recently and seen that, like you, my lower vertebrae are less dense than the higher ones (back to front), and also like you, my L3 and L4 scores are much worse than my L1 and L2 scores! Dr Nick Birch, who did all my REMS scans, is of the opinion that L3 and L4 having lower rather than higher bone density than L1 and L2 is highly suggestive of an error. The REMS scans had the bone density increasing from top to bottom, as it should be, and the first REMS scan gave both hip and spine scores as -2.6. Will it be Nick that you're seeing for your REMS scan, or are you going to Paul at Profortis in Amersham? Both seem to come highly recommended!
Good luck with your GP. Perhaps it would be worth printing out some information about normo-calcaemic hyperparathyroidism to show her? I hope you also get some useful results from your MRI so that a way forward can be found to deal with the pain.
Very interesting that you also found DEXA gave lower density measurements at L4 compared with L1. Thank you for relaying your experience with Nick and that REMS seemed to give a more accurate picture with spine and hip being the same. Out of interest, are you a smaller framed woman?
I was planning on seeing Nick only because one of his mobile clinics is closer to me than Paul’s.
Thank you again for all your help, I really appreciate it. I’m very grateful you’ve taken time out of your day to answer my questions even though my situation is not dire, unlike so many others on this forum. I’m so sad to read stories of multiple fractures and disability. I’ve got more research to do especially regarding the parathyroid which I had sort of put on a back burner and you’ve help me to make up my mind that having a REMS scan is worth the investment. Wishing you all the best and a happy new year!
Following your DEXA scan have they measured your calcium urine output.. At the specislist metabolic bone centre I went to. They did do this. They discovered that though I was eating plenty of calcium in my diet I wasn't actually absorbing it....it was bring excreted out. Thry checked my parathyroid glands but for me mine was very low vit D. This meant I had developed Osteopenia. This did correct and I move back into range with high dose vit D. I keep that level high in range. However I then had bc diagnosis and the estrogen inhibitor I was on for 7,yrs also did damage, ended up yet again Osteopenia treated with intermittent Alendronic. Not happy but in fairness it has again got me back in range. I'm due back for a check up. I'm not small frames.
This may not be off help to you but they do need to look widely at causes and take preventative steps. Osteopenia should not be left. And it appears you have a family history that they should consider.
Thank you for your reply waveylines and for telling your story, I’m sorry you’ve had to go through BC and all that’s brought with it regarding your bones ☹
When I told my GP I had had a private DEXA scan because of my family history she was very dismissive and said ‘we don’t screen people at your age, it’s normal to have osteopenia once in your 40’s’. At that point I hadn’t done any research about osteopenia/porosis so was naïve. I was hoping some advice would be given, tests run, but all I got was to take calcium, vit D and weight baring exercise. She agreed I could have another DEXA on the NHS in 2 years time and that if things were worse in 2 years then I could think about taking a bisphosphonate if I wanted.
I asked if there were any tests I could have done to find a reason why I had reduced BMD at age 44. She said no, there was nothing else, my serum calcium level was fine on a test 6 months previously. No mention of a referral or any follow up tests; ‘just wait until you’re worse and then we’ll give you a medication’. I’m sure my GP thinks I go overboard with my health and I should just get on with life and ignore my various unpleasant symptoms as they are all in my head!
I did do a urine calcium test privately (not 24 hr, it was a dried spot test from Osteolabs). The report said I was excreting calcium at a normal rate therefore indicating I’m not loosing too much calcium.
I am just learning about healthy bone practices and what to look out from reading bone health websites and watching lots of youtube videos over the last few months since the DEXA. I’m also learning more since joining Healthunlocked 6 weeks ago. I didn’t think any more about parathyroid until Met00 mentioned there is a possibility of normal calcium levels but high parathyroid hormone. I doubt my GP will be interested in testing so may have to look for a private test. I’m so tired of fighting the NHS over the years!
That's so shocking Bertiepuss. Sorry that has happened to you. Apologies but I never take the word of a GP on a specialist area anymore. After all my GP told me that when I said I couldn't tolerate any direct sunshine due to a skin condition and should I be concerned. She said, " no nothing to worry about." So of course a few years later a major leg bone snapped when I walked on it. The plus was it got me into the Metabolic Bone Centre, where they still review me periodically. They thoroughly investigated. The same GP also missed the large leg bone breakage saying the swelling was an 'anomalie' . An xray showed it was no anomalie but the a&e doc said it can't be broken cos you can still stand up (painful though) & sent me home untreated with an appointment in 3 weeks with bone specialist. He was hopping mad when he found out what they had done...my leg had to be xrayed reset and plastered. Honestly you couldn't make it up.....
So check check and check again is my motto......I suggest you seek a second opinion. Pick wisely who that is.
That’s horrific, I’m so sorry, how that could have happened to you is criminal ☹ I have come to realise that the medical profession is not really going to help you with your health and that you must research everything yourself…and probably pay out of pocket to have the necessary tests. A sad situation. I will double check everything as you say. Thanks you again for your advice.
Sadly that is true. Forums are very useful too with helping you in this process. Am sure you will get great advice/feedback from others experiences..... So keep posting. And there are gems in the medical world without doubt.... It's finding them. Have you been seen at your specialist bone metabolic centre at all? They usually cover several health authorities but it's their area of expertise. Can't help thinking this would be a wise move. Prevention is always better than cure. So don't agree with your GP leaving things with your family history.
Absolutely. You are entitled to a second opinion......youve not really had a first tbh!!
I've just done a quick search. Mine is in Sheffield and a lot of people in the North travel to it . I've just done a quick Google and there's one in Cambridge, Oxford, Nottingham probably others. I don't know where you are. You would need to check them out. It's so wrong your GP hasn't told you about them.... Lol
Thank you for this, I’ve learnt something new, I will do some research. I’m in the Southeast. I will attempt to put in request for referral to my GP, she’s going to face palm her hand when she sees it’s me again! Thank you again for your help, it’s much appreciated.
No probs. Hope it works.... Is there another GP in the practise you can see to request this? The situation with mine now is I go for a dexa scan... They then send results alongside recommendations of what to do plus next review time. The GP Surgery have to put request back in for the scan... I find I have to prompt them. Mine are now three years apart but were annual originally. They no longer see me face to face. Shame but I'll take it as good news!The best bit is I've been kept in normal range because of this specialist centre at no additional financial cost to myself.
Basically, I have to make a request through the app. It is then assigned to whichever GP they think is best for that problem. This may or may not be ‘your’ GP. You then receive a notification with either an appointment time for a face to face or a telephone appointment as they see fit or you may receive an email with notes from a doctor about what to do next. This note may say they will not see you and will do nothing. If you get to speak to a GP, follow up communication is by text, this service does not let you reply to the text so you then have to start the procedure through the app again if you have further questions. It works for very simple issues but as soon as it gets more complicated it becomes most tiresome. You cannot request to see any GP in particular and you are not allowed to change from ‘your’ GP unless another GP is willing to take you on to their list. They can refuse this request. What a system ehh?
Sounds like my current GP Practise. Lol.... GP who rang me yesterday said she couldn't make assessment on phone said she was recommending I be seen this week face to face. No app so rang and was told am down for another phone call next week.... Go figure!!Hmmm..... How about if you wrote a snail mai letter but hand deliver giving a brief history of your medical history, family history and then state I wish to be referred to....... Metabolic Bone Centre for a second opinion on my bone health as I am really concerned as I have already been diagnosed with Osteopenia I'm going to end up with Osteoporosis, if this is not addressed and would like to prevent this as much as possible. Ask that the letter is put on your medical file, copy in practise manager. And state you would like a response within three weeks.
🤔😅 It's probably the only way to evade modern technology systems now..... They don't like letters being put on your nedical file, makes them nervous about litigation if they don't react so you should get a response. Hopefully they will be sensible and refer you on! 🙄 Doh!! It does make you realise that patients best interest is not at the top of their pile. 🤞🤞🤞
You're welcome. Forums like this have helped me so much too, so I'm more than happy to share what I've learnt over the years. Just be aware though that I'm not medically qualified, just well read!
Met00, you might not be medically trained but your life lived experience and many hours of research is far more useful than anything the GP has ever told me! Did you get your parathyroid hormones checked by the GP when you were first diagnosed?
No, I had to ask for that 4 years later, when I first learnt about it! I had the blood test again recently, in case anything had changed in the last 5 years. Fortunately both times my GP agreed to the blood test, and is also willing to do regular Vit D and calcium tests - not all of them will.
Sounds like your GP is fairly proactive (maybe you have to badger them!) which is good. I will ask my GP but don't hold out much hope so may have to order a private PTH test. Thanks to you I spent yesterday evening reading up about normocalcemic hyperparathyroidism and I will follow this up as you have brought to my attention that it needs to be at least excluded. Thank you!
Would you happen to have info on best way to get a legit REMS scan in California? I sent a message to what I thought was the REMS company but no response after a week so not sure if I contacted the right company (I googled it).
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