I posted on the thyroid forum the other day about a letter I had received from the hospital regarding the results of a DEXA scan I had in January, they were recommending that my GP consider prescribing Bisphosphonates for OP.
I phoned the hospital and asked for the actual results as I was not prepared to consider these drugs unless I really had no other choice.
Members on the Thyroid forum suggested the I post here on the bone health forum for people's thoughts. I now have the report and results and would welcome your thoughts and opinions.
For reference I am small framed ( 150 cm tall) and I am 59 years old. I had an early menopause and have probably been oestrogen deficient for about 15 years,I also have Hypothyroidism and am taking levothyroxine (75mcg )and T3 (12.5mcg , split into 2 doses ) daily. I suspect that my hypothyroidism has been untreated for about 20 years.
Report:
Sclerotic/degenerative changes are noted in the visualised lumbo-sacral spine.
L2-L4 BMD 1.023 T-score -1.5 Comment osteopenia
However L1 and L2 are osteoporotic
Individual vertebral scores:
L1 -2.2 L2 -2.4. L3 -1.1. L4-1.1
Left femoral neck BMD 0.810 T score -1.4 Comment osteopenia
I am not being complacent but I thought that these results show that I am just outside the osteoporotic range, I thought that the T scores had to be worse than - 2.5.
I would very much prefer to try and improve things, if I can, with exercise, diet and supplements before I take strong pharmaceutical drugs.
Many thanks in advance.
Written by
knitwitty
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You're quite right, these scores are only osteopenia, which means you have slightly reduced bone density compared to a 30 year old, but definitely not osteoporosis. However, there may be other factors that raise your risk of fracturing. Have you already had a fragility fracture (one that occurs with minimum impact, when most people wouldn't fracture, for example from falling from standing height or from coughing or sneezing)? If so, regardless of your scores, you would be considered to have osteoporosis and, having already had a fragility fracture would be considered at high risk of fracturing again. If you haven't had a fragility fracture, then I'm surprised they're suggesting osteoporosis medication. The scan report should also give your risk of fracture within the next 10 years (eg 10%) and should state what your risk factors are.
Thank you for responding, I have not had any fractures since I broke my wrist about 30 years ago , that was due to a fall on an outstretched hand, which resulted in a hairline fracture. No problems healing.
What do sclerotic/ degenerative changes mean please? Is that medical speak for wear and tear?
I haven't been given any risk assessment of future fractures, I was only given this current information when I said that I was not prepared to take any medications unless I was in possession of the actual results of my DEXA scan.
I think I already have a black mark against my name for questioning information they send to me, or don't as is the usual case!
I only agreed to a DEXA scan because the endocrinologist kept going on about the risks of taking T3 ( for my underactive thyroid ) those being most importantly heart problems and osteoporosis. I had only been taking the T3 for 5-6 months at the time of the DEXA scan so I feel sure that it has had no bearing on my current BMD.
I suspect that low vitamin D and early menopause would have had a much more significant part to play, anyway the results ( which I was dreading after the initial letter saying the I should consider bisphosphonates ) are nowhere near as bad as I was expecting.
I shall try and address the condition through exercise and diet and supplements in the first instance and ask for another DEXA scan in 12 months to see if I am deteriorating, I believe there is also a test for bone turnover via a urine collection over 24 hours so I'll try to look into that.
Many thanks for your input it is much appreciated.
Sorry, I don't understand the medical terminology, although I have heard degenerative changes used as a term for wear and tear, so that may well be what it means. From what you've described, I can't think of a good reason to start bisphosphonate treatment at this stage, though you might want to ask if they can explain why they thing it's necesssary as you only have osteopenia. My t-scores (hip and spine) are -2.6 and I'm 63, but medication isn't considered necessary as I haven't had any fragility fractures. The best thing you can do for your bones is weight-bearing exercise, with as high impact as is safe for you (best way is to build up gradually) - things like jogging, hopping, skipping and jumping plus exercising with weights and resistance bands. I was told to make sure my blood D level is over 75nmol/litre, preferably 100nmol/litre; the only way to achieve and maintain this is by monitoring it through regular blood tests. I also take K2-MK7, boron, magnesium glycinate, zinc and Vit C, but suggest you add just one at a time so that if you do have any side effects you can work out which supplement is causing them. I get calcium from my diet, which is also high in protein and low sugar and caffeine.
I’ve just been diagnosed with OP too and I know exactly where you are coming from with regard to bisphosphates. I agree, I also thought 2.5 was the magic number. Why do they want to start you on them if you only have osteopenia? Do you know?
I’m not a medical person but I know that unless there was a very good reason for the bisphosphonates then if my results had been like yours then I would want to try exercise, diet and vitamins and minerals before starting on powerful drugs. Alas only one of mine was below 2.5
If you haven’t had your vitamin D tested then you should definitely do that.Dont know what blood tests you’ve had done but as well as my DEXA I was tested for calcium, hyperparathyroid, low vitamin D, liver profile and some other things of things plus in the fairly recent past I’m in remission from Graves’ disease (hyperactive thyroid), I’ve currently got RA, plus a strong family history of OP and a recently broken wrist. So alas - much as I’d rather not I’m on the nasty drugs.
I think sometimes it is easier for them to prescribe a pill and hope you B****r off, unfortunately I can be a pain in the neck and remind them that to make an informed decision I need to be in possession of all the facts.
They have asked my GP to do a test for Vitamin D but I haven't called them yet as I'm not sure how the blood test clinics are operating at the moment, I will do that next week.
I take 3000iu of Vitamin daily because I could not maintain a reasonably healthy level of vitamin D on anything less, I also take K2, magnesium, zinc, Co Q10 and vitamin C, I have recently started taking Omega fish oils as I read they are useful for bone health.
I was put on PPI's for acid reflux some years ago and took those for quite a while,I had a gastroscopy which discovered I had a hiatus hernia and H Pylori infection which was treated. The GP was happy to keep repeat prescribing the PPI's but following some research on these forums I ascertained that I was probably suffering from low not high stomach acid and I weaned myself off them, I now take apple cider vinegar diluted with water if I have any reflux problems and that seems to do the trick, I also seem to have far fewer incidences of reflux since my hypothyroidism is better under control.
I suspect that my vitamin D levels could have been low for many years as I suspect my thyroid function has been low ( but scraping the bottom end of the normal range ) for many, many years which has also contributed to the osteopenia.
Sorry for asking but do you know if sclerotic / degenerative changes are medical speak for wear and tear?
Thanks again for responding, I hope you do not suffer too many side effects from your medication, at least these forums provide a safe caring space to ask questions and just have a moan if need be.
Gosh PPIs! They are not good for OP I’ve been prescribed them in the past and I was shocked to see that when you read the patient information leaflet that although they are only intended in the short term yet people can be on them for years. I cleaned up my diet and stopped them.
A GP prescribed them recently too but I wasn’t convinced that I had excess stomach acid and did the bicarbonate in a glass of water first thing in the morning test and I’m pretty sure it was too little acid that was my problem. In view of the fact that so far after a month on alendronic acid I haven’t had any reflux problems . I’m wondering if that was because I had low stomach acid before I started the AA but I don’t know.
I take pretty much the same vitamins as you are taking although not the omega 3 oils and I soak in magnesium baths and use magnesium sprays and eat eggs seeds and nuts instead of taking magnesium and zinc.
I would love to have ignored the powerful drugs and gone for minerals, vitamins and exercise but I was already doing lots of weight bearing exercise plus I already have a pretty good diet and my Pilates teacher/ physio who I really respect said that if her numbers were like mine she would take the meds. . She also said that if my lumber spine was -3 then my upper spine which isn’t checked would be at least that if not more.
I think degenerative changes looks like it could be age / wear and tear but I can’t figure out what sclerotic changes means.
Had to laugh at you saying b****r off. That’s exactly what I thought when I was always being told that should my Graves’ disease relapse then I would have radioactive iodine treatment - to me that’s a way of saying exactly the same thing because you take the RAI and they’ve got rid of you for good- no more cluttering up the endocrinology dept. You might feel awful but that’s not their problem. Fortunately I haven’t had to blot my copy book with them on that one but I will if I have to in future.
I’ve got a book here called Exercises for Better. Bones by Margaret Martin. A lot of the exercises are similar to my Pilates exercises but she has an interesting section on common gym exercises that you should not be doing.
What would we do without these forums, go mad probably!
Thank you again for responding, I'm glad to hear you are not experiencing too many side effect of your medication.
I sometimes think that the doctors just want to get rid of us as swiftly as possible and prescribing a pill is the quickest way to do that sadly.
Too many people just go along with whatever their doctors tell them particularly people from my mother's generation, my mum gets exasperated with me for questioning things but I have been proved right on a number of occasions, I would honestly have more respect for some doctors if they just admitted they didn't know the answer to the question you are asking them instead of trying to dismiss your questions.
Ok rant over, I know they are not all like that , I must just have been unlucky.
Too right, before I was diagnosed with Graves I thought I was actually mentally ill or had dementia.
I don’t think I would have survived without TUK. It’s an amazing group full of knowledgeable and supportive people, HealthUnlocked has so many amazing support groups. A terrific resource.
When I was teaching if I didn’t know an answer I used to say ‘I don’t know, why don’t we look it up together?’ Maybe some of our medics need to say the same. 😉
Couldn't agree more, I used to be a teacher and said exactly the same thing on many occasions, nobody can be expected to know everything and most people think more of you if you admit that fact.
I always used to tell the children I taught that we all continue learning for the whole of our lives, we only stop on the day we die, I wanted my pupils to see learning as a lifelong journey, one of exploration of things that interested them as well as learning things to pass a test .
Developing enquiring minds was one of the most important things a far as I could see, I taught primary children and always felt the too much emphasis ws being placed on too narrow a curriculum.
I started learning a new language (Italian ) almost a couple of years ago now, it's very hard work but exceptionally enjoyable, and I had a few opportunities to test out my new language when I visited my son who was studying in Venice last year, I'm sure the locals had a good laugh when I attempted to speak their beautiful language but they were very helpful and gracious and hopefully it will help me to retain the few grey cells that remain in the depths of my ageing brain!
TUK has saved my sanity on many occasions, I just wish some of the endo's would use it as a resource, they might learn something.
My readings were - 4.5 spine and - 2.5 hip ie Osteoporosis and Osteopenia. I am on Levothyroxine and take Risedronate. Hormones are related and I am epileptic so medication for Epilepsy affects it.
Hello.I realise your post is dated 2 years ago but thought I would ask a question as I too am taking epilepsy meds ( since 2001: Tegretol Prolonged Release and Levetiracetam) and have been diagnosed with osteoporosis. I am aware that longterm use of epilepsy meds are linked to osteoporosis. I discussed this before with my Epilepsy consultant and decided to reduce my epilepsy meds but cannot come off them completely as they have successfully controlled my seizures for years. My latest Dexa scan results are disappointing as they show quite a jump in my spine scores (from -2.6 in 2020 to -3.2 in 2022). Like you, I must take the epilepsy tablets. It is a difficult situation to be in. I just wondered how you are faring with osteoporosis scores now, assuming that you have continued to have Dexa scan monitoring since you wrote your post two years ago?
Right now, I feel very concerned about my recent results.
Hi, many thanks for post. I have not had another scan since 2018 and so far have not had problems with the medication I am on - Risedronate Sodium. I was told they would do another dexa scan if necessary but so far so good.
Thanks for getting back to me! I’m very glad things are sounding ok with you on Risedronate. This is a medication I may be going on after my dental treatment ends in December. I think I am so concerned about my recent Dexa scan results change that alarm bells are ringing in my head. Take care x
My results in 2018 were -4.5 (spine) and -2.5 (hip) in 2018, so not sure what they would be now. Glad to hear you are going on Risedronate Sodium after dental treatment ends in December. It is essential that the dentist knows all the medications you are on both now and in the future. I am on new epilepsy medication since March but at the moment, all is good.
Really glad to hear that. Thank had my first seizure in 2000 when I was 40. It took months to get the right combination of epilepsy meds to control the seizures but I’ve bern great in these tablets for years. Naturally my consultant and epilepsy nurse are very reluctant to change my medications now. However I have reduced them a bit. No one wants my seizures back, certainly not me. I am in a flux. I am so baffled about the leap in my Dexa scores in two years from -2.6 spine in 2020 to -3.2 in 2020 despite all my hard work in diet, weight bearing exercises, weighted vest, supplements vit k etc etc. I’m trying to get a copy of the results sent to me x
If I had your dexa scan results, I would not go on any of the so called "bone-building" drugs. Do your research, take vit d, vit k, get required calcium from food, get on exercise program, don't smoke, eat properly... I have osteoporosis & caved in to pressure and have been on boniva i.v. every 3 months. Side effects may not be worth it. Also, takes a long time to even determine if the toxic, bone building drug is doing any good. Again, do your research. Good luck and stay safe.
Thank you for responding, I am coming to the conclusion that I will pursue the non drug route to building up my bones first , also I think I am going to ask to have a repeat `DEXA scan in another year or two to actually determine whether I am deteriorating or not.
I am a little surprised that bisphosphonates are being considered as a first response to someone with osteopenia rather than full blown OP but nothing surprises me these days .
I shall stick to the supplements and find a good exercise programme for building my bones.
I really appreciate you taking the time to respond, I hope you stay well and that the Boniva turns out to improve your bones.
Apparently, if your scores are borderline osteopenia /osteoporosis, taking bisphosphonates is a preventative measure.... to prevent further bone loss and so becoming fully osteoporotic and so risking fragility fractures. .
Sclerosis means becoming rigid, abnormal hardening of body tissue.
I didn't see this and your previous answer or would have replied sooner.
thank you for responding, I know all doctors are not like some of the ones I have encountered, one of my best friends is a GP and she has no problem admitting she doesn't know everything.
Regarding your second point, I would be interested to know if you take bisphosphonates and what your BMD readings were when you commenced taking them and if your BMD has improved.
The side effects can be extremely unpleasant and if they do not necessarily prevent fractures, despite increasing BMD, I'm sure you'll agree one needs to weigh up all the pros and cons before starting to take them.
Thank you for responding , I appreciate your taking the time to reply it is good to hear a variety of opinions.
I agree with you about going down the natural route and I do likewise. I was also prescribed PPI's and took them for over a decade on repeat prescription (without any monitoring,). Alas that was before I took responsibility for my own health and researched everything, and not relying on what doctors tell you. Nowadays I question everything .
I was unaware that all the 'Prazole's should only be taken for a very short course and definitely not years which ended up with me getting osteoporosis. I stopped them and instead use Slippery Elm which is just as effective, and don't need to take them very often so I think taking PPIs were actually keeping the problem going!
Also why are are our bones being compared with a 30 year old? "Oh your over -2.5 so you automatically need to take drugs " (with all the side effects. )My eyesight, hearing, lungs, energy levels, etc etc can't compare with a 30 year old so why should bones?
I had a Dexa scan 2 years ago following a fall on black ice, and advised the next one would be in 5 years.
Many thanks for responding, I'm glad you are doing well using a more natural route.
I can't seem to get my head around why they would expect there to be no change to your bone density as you age and so compare your BMD to a 30 year olds, it does seem a little odd. I have a few more wrinkles than a 30 year old but that is considered normal.
Do you mind me asking what your T scores were when you had your DEXA scan?
I think that PPI's are the work of the devil but I only found out about the damage they can do after doing lots of research myself, the doctor said they were completely harmless!! I bet he didn't take them himself !!
Apparently, it is after age 30 that your oestrogen hormone output starts decreasing which has an effect on your bones. So the age 30 is used as a marker for a 'before and after' test, if you like.
Thank you for responding, I do sort of understand the logic behind measuring bone density at the peak , but what I can't get my head around is the expectation that bone density would not decrease at all as we age.
I'm beginning to think that it is another example of medicalisation of everyone as they age.
We all know they keep moving the goal posts to enable more people to need pharmaceutical drugs for things that were considered quite normal a few years ago, statins and cholesterol being one of the favourite ones.
My first Dexa scan was -2.5 for hip and -2.6 for spine. So I think myself very lucky with these numbers and that I've never had any symptoms or experienced pain. Only reason for Dexa scan, as mentioned before, was due to a fall on ice on outstretched hand resulting in a fractured wrist.
Thank you for letting me know what your results were, I'm really glad that you are doing fine using natural methods .
I broke my wrist about 30 years ago with a fall on an outstretched hand, but of course being in my late 20's nobody thought it anything unusual.
I don't consider my readings to be particularly awful, and still in the osteopenia range rather than osteoporotic range. Hip (femoral neck -1.4) spine -1.5 ( but L1 -2.2 and L2 -2.4) obviously the other L3 and L4 were lower.
One thing the does bother me immensely is the fact that the original letter recommending I consider bisphosphonates ( a copy of which was sent to my GP) actually says I am already in the osteoporotic range, if I had not requested the actual results and had not been an awkward b****r I could have started on these drugs totally unnecessarily .
I have also been on the Sheffield University FRAX prediction site which suggests that I am well within the comfortable zone for fracture risk over the next 10 years. The report I received from the hospital makes no mention of the 10 year fracture risk.
I have decided I shall ask to have a repeat DEXA in another 18 months to check if things have worsened / improved/stayed the same . If the endo and/or GP don't want to do that I shall have to think of a good reason why that is maybe the wrong approach.
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