Medical help so far useless - Bone Health and O...

Bone Health and Osteoporosis UK

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Medical help so far useless

Dexawhy profile image
10 Replies

I was recently diagnosed with a spinal fracture. GP referred me to a private consultant - a rheumatologist based at The Physician's Clinic, as she didn't think that on the NHS I'd be seen quickly enough. I had both an MRI scan, and a DXA - results didn't arrive for over four weeks, and when they did, they came with a three line letter saying I showed both osteopaena and osteoporosis, and that I might, in the future, need treatment. No medical advice, no prescription, physio not mentioned. For this, I paid £200. I am NOT impressed. Osteoporosis was the first thing I mentioned when I met the consultant, as I knew, genetically, that I was at risk, and the two reports came separately from the two radiologists, so all the 'great man' had to actually do was to send the reports, and dictate three lines. There's far more advice on online sites like this, and it's free. Treatment-wise, I'm now taking Calcichew, Vit D and Vit K2.

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Dexawhy
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Kaarina profile image
Kaarina

Hi Dexawhy

I am sorry to read your story. Your results not arriving for over four weeks is terrible. Boo! I would have been chasing them. Perhaps you did. I would not have been at all impressed either receiving a three line letter after a £200 consultation.

I suggest you also may like to add some magnesium to your treatment plan. I buy magnesium glycinate as I find this much kinder on my stomach than some of the other magnesium on offer. I have just started drinking kefir. There is at least one thread on Kefir here.

As you say one gleans more information from this community and the NOS than from some doctors. The NOS helpline is also a big bonus too.

I asked my GP to be referred to a OP doctor and I now see a doctor in the endocrinology department twice a year and we get on well as he listens and it makes me feel a little more secure knowing he is there in the background "looking after me".

Are you able to exercise with your recent spinal fracture or are you in too much pain?

Dexawhy profile image
Dexawhy in reply to Kaarina

I did chase, Kaarina, but didn't want to seems obsessive, even though I was! Thanks for the NOS mention - wasn't familiar with that, and will certainly use it. Would name/shame the 'consultant', but don't want to be done for libel.

Kaarina profile image
Kaarina in reply to Dexawhy

LOL Perhaps not a good idea to do that on here but I can well understand that you wish to warn anyone not to go and see this consultant. Here is the website for NOS in case you do not have it to hand. nos.org.uk/?gclid=CjwKCAjwj... The helpline number is on there too. I have not called a nurse but I have heard that those that do, have been helped greatly.

Dexawhy profile image
Dexawhy in reply to Kaarina

Thanks.

HeronNS profile image
HeronNS

Did they give you any numbers? Your t-scores? Images? For that money you should have got more than three lines. If your osteoporosis is, say, -2.5, you may feel quite comfortable not asking for medication at this point and using other methods to improve your bone density. If the t-score is significantly worse than that you may wish to consider medication. It is possible that two years of OP meds gives you the best benefit and the lowest chance of developing the serious side effects. Your call, of course, but natural methods have been shown to work and, I can't help myself, I must encourage people to research those methods also, especially as doctors are so keen to put us on the medication.

Dexawhy profile image
Dexawhy in reply to HeronNS

Just checked my DXA report, and it seems to be -1.9 and a 2- score of 0.5. Lots of other figures too, but can't interpret them.

HeronNS profile image
HeronNS in reply to Dexawhy

Anything less than -2.5 (actually I think I should say more, the math terms are a bit confusing to an innumerate like me) is within the osteopenia range, also known as low bone mass, and is not diagnosed as osteoporosis. So the nearer your negative numbers are to 0 the better your bone density so it looks like yours are not bad at all! :) Of course we have to remember that bone density does not equate to bone strength, and this is where the meds can lead us astray because it's increasingly been shown that the longer one takes them the more likely one is to develop microcracks and perhaps become vulnerable to what is called an atypical femur fracture. This is why it's best not to take the drugs unless really needed and only to stay on them for a couple or three years to get the maximum benefit. Because normal bone remodelling is inhibited (this means old bone is not removed) the bone density appears to increase, but unfortunately the new bone is being laid on an increasingly aging matrix which eventually will become brittle. So you may well not have had meds recommended because you don't need them. However you should have been given advice on how to maintain your reasonably good results through nutrition, supplements and appropriate exercise. Where a physiotherapist can help is giving instruction on how to move to protect the back, the right way to crouch down to pick something up from the floor, that kind of thing, plus exercises to maintain and increase strength in muscles which support the spine. It's also important to keep a good sense of balance as falling is a much greater risk for fracture than a t-score. We need more than calcium and D3 to maintain good bone health. A good, varied diet supplies most things, but if you are taking extra calcium you'll probably need to make sure you're also getting enough magnesium in order to maintain the balance of those minerals in your body. And Vitamin K2 will almost certainly need to be supplemented as the modern food supply is severely deficient in this vitamin and it's actually what guides calcium into the bones where it belongs. If you eat products of grass raised animals, never grain fed, you may be getting enough K2, but most of us don't these days and apparently we are not very efficient at making our own, although eating fermented foods may help a little.

healthline.com/nutrition/vi...

Gillymar profile image
Gillymar in reply to HeronNS

You talk a lot of sense especially re the meds’ being misleading. Eleven years ago when I was diagnosed with osteoporosis and put on alendronic acid nobody knew what the outcome would be. Seven years later when I had a femur fracture it was recognised that it could be the problem. I walked for two years on a broken leg in unimaginable pain having treatment for muscular trouble until a new doctor sent me for an MRI. I stopped AA at once and had the operation to insert a steel rod. Bliss ! However ten months later the other femur went . This was operated on in March this year but the result is not a good one. I now have a fractured vertebrae and am very immobile. Walking is very painful and I am unable to enjoy life as before. I spend a lot of time warning friends not to go anywhere near AA.

HeronNS profile image
HeronNS in reply to Gillymar

I am so sorry you are a victim of this. I think doctors should know better now, but unfortunately when you started the drug these really dire side effects probably weren't known. I hope you have registered a complaint. Can you get compensation from the drug company? Merck settled a class action suit involving Fosamax in Canada not long ago.

Dexawhy profile image
Dexawhy

Very informative. Thank you so much.

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