Just been diagnosed with severe osteoporosis out of the blue fracture of L2 without reason, Dexa score Hips -2.7 and spine -4.8. I had no real information about this from my GP accept to go home and start on Alendronic Acid (weekly) After researching I decided to go and see a private Osteoporosis specialist which is booked for tomorrow. My husband has just picked up an x-ray report from my GP as I want to take everything to the specialist tomorrow to save him having to repeat everything. The report says:-
Superior endplate collape of L2 in the midline
Potential end plate collapse
Sclerosis at the L5-S1 facet joint
Bones severely osteopenic
My Gp advised me not to take calcium as the Xray also picked up calcific density over the lower right renal kidney, I explained to him that I am probably calcium deficient as I do not eat dairy to microscopic colitus and he said it didnt matter, however I have read that Aneldronic will not work without sufficient calcium? I already take 1000 iu of D3 and have done for years. I asked him about a calcium blood test and he said there was no specific calcium blood test but not to worry as I would have enough calcium??
I am so scared this all came out of the blue with no warning, I am scared of leaving the house to be honest. I wondered if anybody knows of any better treatments that I might talk over with the specialist tomorrow that might be better for me than Alendronic? Also I have no idea what Sclerosis is? All answers are very much appreciated.
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Daisi124
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Hi Daisi, I’m not surprised you are feeling as scared as you are. It is such a terrible shock to be diagnosed with osteoporosis so I know exactly how you feel. When I was first diagnosed I used to cling to my husband like a drowning man to a life belt when we went out. Now I make sure I always wear really sturdy footwear and unless I am in town I use a pair of Nordic walking poles. I avoid surfaces that are muddy or slippery with fallen leaves etc. I’m also careful in the house, I no longer climb up on furniture etc these days.
You have had a lot of really good advice from Met00. All I can really add is for you to have a good look through the Royal Osteoporosis Society’s website. theros.org.uk/information-a...
This link on diet and healthy bones might help you boost your calcium containing foods, I never drink milk, don’t like yoghurt and although I eat cheddar cheese it isn’t something I take a lot of and I really don’t think that has much to do with my osteoporosis - especially as my Pilates teacher / physiotherapist has always said to us it’s D3 you need for bones - milk is for baby cows.
I do eat masses of dark green leafy veg and I do eat nuts and seeds and lots of other things on the list so discovered I was getting a lot more calcium in my diet than I first thought. sath.nhs.uk/wp-content/uplo... There are possibly lots of weight bearing exercises you could do too - the ROS has a section on that too - depending on how your bones feel. I particularly like this book by Margaret Martin and I’ve got a couple of exercise videos too. amazon.co.uk/dp/B015TGL5MQ/....
Again though it depends on what you can do without causing pain or making things worse.
I do Pilates but I’ve got an amazing teacher who is a physiotherapist with an interest in osteoporosis, she knows us and our poor old bodies well and she is super careful with my little group. As well as stretches, we do a lot of work on balance and strengthening our feet and shins etc to prevent further falls so you could work on things like that.
As for your rheumatologist, I can’t think of what he will say other than to take osteoporosis meds so I wouldn’t build your hopes up too high, I’ve got a feeling (and I may be wrong) that all U.K. rheumatologists believe in taking the meds. I’d make a list of questions you want to ask him / her and work your way through them. If you can take your husband in with you that would be good but it might not be possible because of covid.
Read up all about the different treatments available - for example you can take bisphosphonates as infusions rather than weekly tablets - and remember that when you taking drugs like Prolia / denosumab you absolutely must take a back up med which is usually some sort of bisphosphonate when you stop Prolia after the two years or however long it is you take it for.
Have you been checked for parathyroidism or anything that could be a contributory factor towards osteoporosis? Do you take magnesium along with your D3 and K2 Mk 7?
Sorry I’ve gone on a bit but good luck with tomorrow, hopefully you will come away with the answers you need.
Thank you Fruitandnutcase. My main reason for seeking out a rheumatologist is I am not satisfied with my GP in his advice on the treatment. I suspect I am decifient in calcium for numerous reasons, one is I have been taking Lansoprasole for 23 years without any tests for mineral deficiency and this has now been linked to heavy mining of calcium from the bones. Also due to the colitis I eat little dairy, I used an online calculator that I was kindly given a link to on here and I have probably only been getting around 300 mg of total calcium daily. I am suprised that my GP told me not to take calcium supplements with AA because of a possible kidney stone despite the NHS advising GP's that it is necessary. I was even more suprised when I asked my GP for a calcium test and he said there was no general calcium test and that I would be getting enough calcium in my diet, again despite the NHS advising GP's that a calcium test was necessary and should be given before starting on AA. To answer your question no I have not been checked for parathyroidism, in fact I have not been checked for anything at all! I did have some routine blood tests done in May that included thyroid tests (routine Serum TSH and Serum T4 which were within normal limits but have no clue whether that would show parathyroidism? I have written the parathyroidism question down on my list so thank you for mentioning it. I am not taking magnesium so I have written that on my list also. Never apologise for going on, go on as much as you like, I am in the depth of despair right now, scared, in tears and afraid for the future as I have my husband at home with terminal prostrate cancer and it is a never ending battle to try and keep a happy face on. Any conversations on here are gratefully cherished so thank you again. On a side note I have booked a private ultrasound for a renal scan next week that will clear the possible kidney stone question up once and for all. My doctor originally referred me through the NHS but 4 weeks later I have heard nothing so what the hell might as well pay and get it out of the way.
I’m so sorry, you have far more on your plate than anyone deserves without getting the osteoporosis diagnosis so I’m not surprised you are scared stiff. Do you think it might be worth filling in the rheumatologist about your circumstances before you get started? I’d say you need to be treated with great kindness. Please let us know how you get on. ((( big hugs )))
Thank you so much for your kind words, I will fill him in beforehand, he needs to prepare for a lengthy consultation! I have a lot of questions about information I have found on here. I will most certainly let you know how I get on, the appointment is 8.30 am so at least I do not have to wait all day.
Hi Fruitandnutcase, well I am more scared than when I went, am near a complete meltdown. It was as you predicted a bit of a waste of time. He said the the diagnosis was severe and that I had very thin bones and that they had degenerated in line with a person decades older. He did however say that he would write to my GP to ask him to do blood tests for parathyroidism as you suggested and myeloma (bone cancer) I can hardly breathe with fear. I had never considered bone cancer before and was certain a dexa scan would have picked that up. So I paid £300 to come out no better off and more scared than ever. I have to wait until my GP gets the letter then go for the blood tests and wait for the result. Sorry to be such a wimp but I just can't help it!
No, you’re not a wimp at all. I remember how bad scared and down I felt when I was first diagnosed. I’m really sorry you feel worse than you did before though. At least you went in slightly prepared for it not to provide all the answers. When I was being treated for Graves’ disease, I went to see my consultant regularly throughout the year and I never saw the same person twice and only had one consultation in all that time where I came out feeling really good.
Did he come up with any ideas for treatment or is that still up to your GP?
Are you attending a hospital department that could help you? My hospital has a fracture liaison nurse. OK he scared the daylights out of me but he did get me started on diet and vitamins and they have a dedicated physiotherapist who helps with balance etc - unfortunately I didn’t get to her classes because of lock down, they were going to be about gaining confidence and balance etc but I spoke to her on the phone and she helped with the CRPS that I developed when the plaster came off so she was a godsend. I don’t know what I’d have done without her. You need someone like that who can give you confidence.
You could also contact the Royal Osteoporosis Society, they have a helpline you can call or email (you’ll need to look on the Healthunlocked Bone Health U.K. website for that) the people there seem to be very calm and very knowledgeable - that might be helpful for you, unfortunately it’s probably not going to improve your bones but it would be someone knowledgeable to speak to who might help you cope and be less frightened. It’s a very tough time for you and it’s not helped by all the other things going on in your life at the moment. x
Hi Fruit and nut, sorry for the delay in replying. To answer your questions. No I am not attending a hospital department. I was simply given the results of my tests and told the scores and prescribed AA over the phone! It is only because I am paying prvately I am able to get some more information. I am waiting for my GP to call me this morning to discuss what was said when I went to see the rheumatologist and see if he will do me a form for the blood test that the rheumatologist suggested. I just have to keep my chin up and hope for the best. I took my 2nd weekly AA this morning without problem, rather than fear it I look forward to it in the hope that every tab might make my bones stronger! LOL. I really want to get the blood test done for parathyroidism as I have a few indicators that might point to it especially that my Z score is very low. The NHS recommend doing one before diagnosing osteoporosis so I don't know why it has not already been done. Keep safe!
I hope that by now your GP has called and you get your parathyroid blood test done. I haven’t looked but is there a list anywhere of all the recommended tests that should be carried out when diagnosing osteoporosis?
That’s a very good positive way to look at your AA well done.
I've seen this list posted a few times. It's a very thorough list of tests to rule out secondary causes of osteoporosis and some are for specific medical concerns or used to monitor treatment. The ones listed under 'Standard Blood Panel' might be a good reference Daisi124 .
I'm so sorry you and your husband have so much to contend with. I think your attitude of trying to keep your spirits up and support one another is briliant and will really help see you through. Best wishes to you both.
Hi Fruitandnutcase, an update from things you suggested. I had a barrage of blood tests, one of the was parathyroid, it came back normal, I also had a full bone profile done which all came back normal, weirdly in the circumstances, I had tests for myleoma which also came back normal. My calcium levels were within normal range as well (2.34 mmol) I had normal thyroid tests done and my TSH level is normal but my serum T4 is above normal range, it is 22.7 and should range from (12 to 22.0) I have not spoken to the doctor about that yet, the receptionist phoned me and said that that particular test should be repeated in 3 months. I am now reading that a high T4 serum can cause bone loss and increase fracture risk? So 3 months seems to be a long time without doing anything if that is the case given that severity of my T score -4.8 on my spine My D3 is 77 which is considered normal here, range should be (51-250). I am speaking the doctor tomorrow as I ended up in A&E on Sunday with a severe fecal compaction, I will spare you the details as it was not a pleasant experience! This was as a direct result of the pain medication my GP prescribed so it needs to be changed. So I will mention the serum T4 being above normal range as I do not want it to hinder the treatment of AA for the bones. Thank you so much for all your help with this and thanks aslo to anybody else who joined in the discussion x
I’m so pleased your results came back all looking ok. At least you have ruled out a lot of unknowns.
It might be worth posting all of your thyroid results on the Thyroid U.K. part of Healthunlocked - or even just looking through the bone related posts on there - someone there will probably be able to give you more information about your thyroid levels and how they might affect your bones. The people who use that site are very knowledgeable.
Your vitamin D3 at 77 is quite low even though it is within the recommended range.
For the sake of my bones and my thyroid health I would want mine to be nearer the top of the range - well at the moment mine is 162 (50-200) which pleased my fracture liaison nurse - he told me ‘you can’t overdose on Vitamin D3’, I imagine you probably could if you really tried but basically he wanted me to be well up in the vitamin D3 range.
Don’t envy you with the fecal compaction, that must have been absolutely dreadful and the last thing you need with a fragile spine hopefully your GP will get that all sorted out.
It’s such a minefield balancing everything isn’t it. Good luck with it all
Thanks Fruitandnutcase, I have a phone appointment with the GP tomorrow I am going to mention my D3 level. I made a mistake last night it is only 71 not 77 and for people with osteoporosis it is recommended that it should be at least 75. They obviously do not match up the blood test results with current illnesses at my surgery. I am also going to mention about magnesium. I have no problem taking magnesium but dont know if it would interfere with Alendronic Acid? It says that you need to tell the GP about any supplements you are taking. My GP probably will not know about the magnesium he seems to know little about either AA or Osteoperosis. I am taking 1200iu of Vit D but have upped it another 1000iu from today. How much supplement do you take? Hope you are doing well and thank you for your great replies.
I take 3000iu most of the time as a rule but I check my vitamin D levels regularly throughout the year. Also take magnesium - I take capsules and also have magnesium baths and rub on body cream, vitamin K2 Mk7 - it’s supposed to direct the Vit D3 to your bones, I take boron and an algae based calcium supplement - I didn’t get on at all well with the calcium the GP prescribed - that really upset my IBS, I tried calcium citrate for a while then found the algae one which seems ok so I take a little of that as a base then top up on leafy green veg and seeds and Nuts and other calcium rich foods. I also take a plant based omega 3 oil which I discovered quite by accident (when I ran out of them and didn’t take them for a while) makes a huge difference to my very dry eyes.
I wouldn’t expect too much from your GP - fracture liaison nurse who stressed the importance of vit D3 and said you couldn’t take too much hadn’t heard of taking K2 along with vit D - I knew about it through the thyroid forum - but as a lot of people take both that and magnesium I carried on and taking it. Not sure how you know if the K2-Mk 7 is directing the calcium to your bones though. I just take it anyway. K2 can interfere with anticoagulants though but then so you could need guidance with that.
Hello again, I had a very successful conversation with a GP at my surgery today, I began telling him that I was very upset and that seemed to trigger him into listening to me, we were talking for a good 20 minutes. I asked him about the D3 and that I had my concerns that it was too low in view of my bone score, he agreed with me and subscribed 20,000iu to be taken once a week for 10 weeks and then retested. I also told him about various other blood tests that were a little over or under recommendations and he went through them with me and said none of them were in any way concerning so he would repeat them in 2 months time. I mentioned the thyroid and that I did not want to wait 3 months before having that re- tested, again he agreed and said he would do that in two months time as well. So at least I got some reassurance and some VitD3 loading tablets. I asked him about the magnesium and he said i could take a supplement but would test my magnesium and other vitamins at the same time so in another 2 months time. I am doing ok atm, I did have a set back the night before last. Up until them my back pain from the fracture was receding and I was managing to move around without much pain....... but then..... in the night I had a series of very bad coughing fits which jarred by lower back no end and now the pain is right back where it started. I hope I did not break anything else, or re-break the original one. The coughing I put down to being weaned off Lansoprasole (PPI) as the tickly coughing started within 2 days of that, so I started taking them again yesterday morning and asked the doctor to put my prescription back on. He agreed. I cannot be worrying about what might happen with those further down the line in the distant future at the moment I am more worried about the here and now and recovering from the spine fracture and avoiding breaking another bone in my spine through coughing. I have been on PPI's for 23 years already so another year or so will not make any difference. The main concern about long term PPI's is a malabsorbtion of calcium and magnesium and working on the basis my calcium level was fine indicates I do not have a malabsorption? The magnesium as I said I have not been tested for yet. Hope you are doing well. Have a good weekend x
You are not a whimp! You have so much going on. I always says life is not fair and some how we find the strength to fight on and not give in. I pray for you and your husband. Its goid that we all have this forum to chat with people and find information to help along the way. I am scared to take osteoporosis meds and my bones are also thin. We find strength through expressing our thoughts and ideas with others. I hope you find a plan that works. Let us know.
Thanks for your kind words Kitchen buddy, I feel as though I have no option but to take osteoporosis meds mine are so thin in the spne -4.8, however after letting the information sink in for a few days I have resigned myself to just getting on with it, I can either carry on with life or sit in the chair waiting for the end! My husband has advanced incurable prostrate and is on some serious drugs himself, luckily he is responding to treatment at the moment. It is important we both try and keep our spirits up and support each other. Talking to people on here has been a great help.
Make sure before you agree to any medications all the relevant tests are run to rule out "secondary causes of osteoporosis". As Fruitandnutcase has pointed out there are a lot of things you can do to help yourself, even when taking medication. Although you are nervous of AA some of the older drugs like that are probably a lot safer than the newer ones which appear to be accompanied by a suite of unintended and often disastrous consequences.
Thank Heron, all replies are reassuring, just being able to chat about it with someone helps. I will let everybody on here know what the specialst says tomorrow. I am armed with all my results and a list of questions to ask him so he better prepare for a lengthy consultation, might as well get my monies worth.
I may be wrong but I believe high blood calcium is a sign calcium is being leached out of the bones by hyperparathyroidism - a malfunction of the parathyroid glands. A secondary cause of osteoporosis.
You could well be right, I tried to find the list of blood tests the hospital wanted me to have - I couldn’t find it but I know they tested for hyperparathyroidism and I had calcium and adjusted calcium tested amongst other things as part of a ‘bone profile’ blood test plus vitamin D.
You just may have a point. My doctor always says my calcium level is normal so why do I need calcium. Maybe we need other minerals to help our body absorb calcium. sometimes doctors don't look at the whole picture. I am going to have my parathyroid checked too.
Well, that would be Vitamin K2, also make sure you're getting enough magnesium. Calcium supplementation can, apparently, lead to calcium/magnesium imbalance. If you opt for a magnesium supplement, take it at a different time from calcium so it can be properly absorbed.
A normal calcium level is a good sign. It's a higher level which could trigger cause for further investigation. But always good to check, especially as "normal" is not always perfectly identical from person to person.
Your doctor is mistaken to believe blood calcium levels tell you that your calcium intake is high enough. Unless there are specific problems such as hyperparathyroidism, the blood calcium level is kept within a narrow range, meaning that if you don't have a high enough intake, it will stay in your blood and your bones will lose out.
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