Need to get incorrect diagnosis changed

[Kellycornwall]

I was diagnosed with osteoporosis 2 months ago following a DEXA scan BMD of -2.6. I’ve not had any fractures. My Dr then prescribed AA which I reluctantly started taking due to my fear of breaking my hip being greater than the fear of side effects (which are many).

After reading about REMS scans on this page, I contacted Osteoscan and had scans undertaken by Dr Nick Birch, an orthopaedic consultant last week. I intended (and still do) to have these scans for monitoring purposes. I was surprised when the results of these scans showed a BMD of -1.6 with quality bone. I have osteopoenia - not osteoporosis and I should not be taking AA.

I have handed in copies of these scans and reports to my Dr and I have a telephone appt. with her later this week. I want to get the diagnosis changed. However, as REMS isn’t yet approved in UK, I fear that she will not be able to change it and will continue to advise that I take AA. If this is the case I think I may need to get another DEXA done. I obviously don’t wish to return to the centre where I had my original done due to concerns about the machine or operator error. Could anyone recommend somewhere in London or 30 mile radius to have a DEXA scan with confidence? It must be accurate this time.

[Kaarina]

If you have the DEXA on another machine you will not be able to compare the results. You can only do that if DEXAs are done on the same machine. If you can find another centre with the same DEXA machine then you will be able to compare results. The results are only as good as the person who makes sure you are positioned correctly when having the DEXA and how knowledgeable the person is who interprets the results.

I have so much more faith in the REMS scan. I shall be having another one done in 2 years. I had my first one done in August. I knew that my DEXA scan result was rubbish. I never want another one again! REMS scans for me from now on. It is money well spent to my way of thinking. You do not have to continue with taking AA whatever your GP says. The choice is yours entirely.

[Kellycornwall in reply to Kaarina]

That’s how I feel Kaarina - and I will be continuing with the REMS. I’m just concerned about having a diagnosis on my records with refusal to take treatment when trying to get travel and other insurances. The whole experience has made me both upset and angry. How many other people have been affected.

[Kaarina in reply to Kellycornwall]

I did amend my message. Not sure if you read that. Getting a correct DEXA scan result appears to be pretty difficult to obtain .....

[Kellycornwall in reply to Kaarina]

Thank you Kaarina - the whole DEXA process was troublesome. The IT in the centre was down when I had the scan so there was an element of manual recording of info. The full scan report was not in a readable format due to blurred small print. My Dr has repeatedly requested a copy in a readable format from the administrating hospital - no response. I have telephoned the unit to get details of the machine and its calibration - always goes to voice mail. Unsurprisingly no response to a left message. If I do have another one it will have to be somewhere else - I have zero confidence in them.

[MaggieSylvie in reply to Kaarina]

I haven't got ostoporosis either and my DEXA scan in June was good. I am in the process of changing my GP and have just come to the end of my AA. Due to changes in my teeth, I am hoping not to have to renew my prescription, and I'm wondering whether I would be advised to continue with it (to add strength to my bones) for another 14 months, which would bring it to two years. I was prescribed it because I had four compression fractures. Is there any harm done (or any good?) by taking AA and EvacalD3 for ten months only?

[Kaarina in reply to MaggieSylvie]

I am sorry I do not know the answer to your question.

[HeronNS in reply to MaggieSylvie]

We can only speculate, but as AA stays in the bones indefinitely, unlike some of the newer drugs, there should be no harm in stopping at least for a while. If your teeth are at risk that's a good reason. Look up my story. Google 'healthunlocked my osteoporosis journey '.

[MaggieSylvie in reply to HeronNS]

Thanks for your reply HeronNS. That was my logic. I took my final EvacalD3 this morning! I would never have been put on AA and Evacal if I hadn't been in pain from compression fractures. Hopefully, they have done some good in that respect but I don't want to keep taking medication for a problem I've never had. I don't know if I am deficient in magnesium and I'm in the UK, so maybe not but it is the one thing I am prepared to take if necessary. If having a bath wasn't such a kerfuffle I would put it in the bathwater and get it that way. I read your story - quite different from mine - interesting. Now that I am able, I should really walk more (and winter is well on its way here - uugh). I can see the value of having two sticks rather than my one. Suppose you'd also need pockets!

[HeronNS in reply to MaggieSylvie]

I've heard having an Epsom salts footbath is effective. Maybe look that up, see if it might work for you? I suggest that Vitamin K2 is essential.

[MaggieSylvie in reply to HeronNS]

I can't easily get out of the bath - that's the problem - it has to be set up with an inflatable cushion. I suppose soaking the feet might be enough but it would be nice to immerse my whole self. Not sure about Vit K2 as I have blood cancer.

[HeronNS in reply to MaggieSylvie]

Vitamin K2 works differently from K1, but, yes, in your case I'd definitely seek informed medical opinion. Unfortunately most doctors still seem terribly uninformed about Vitamin K2.

You can find it in some foods, like dairy and meat from grass-fed (never grain-fed ) animals, some fermented foods, especially Japanese fermented soy which is the source of the supplements. I've never tried it and understand it's an acquired taste!

[Hidden in reply to HeronNS]

Dear MaggieSylvie, you could ring the ROS helpline so they can explain spinal compression fractures and how this would fit in with the drug treatments. On their freephone number 0808 800 0035

[HeronNS in reply to Hidden]

MaggieSylvie I think this reply from ROSAdmin2 is for you.

[Kaarina]

I sent a copy of my REMS scan to the medical centre I attend, asking it be put on my file as my DEXA result was incorrect. Whether it has been done or not I do not know. When I next see a medic at my medical centre I shall asked if they will check it is there. I have not taken OP medication for a number of years. My latest DEXA stated I no longer had OP but I knew that was incorrect. The REMs proved the DEXA incorrect. Of course I have OP and have done so since 2012.

[Kellycornwall in reply to Kaarina]

I will do the same. I hope REMS gets approved here soon and is available to all. Thank you for your advice.

[Linnet3]

I had a very similar experience to yours: first Dexa scan 2015 spine -2.6. I managed to persuade the medics that I could try self-treatment with diet, supplements and exercise. Second Dexa 2019 on a different machine spine -3.8, which I struggled to believe, but was also panicked by and started AA. Gave up after 3 months due to severe heartburn. Tried Raloxifene but also no good. Finally got a REMS scan end of 2020 (two were cancelled due to lockdowns): like you my spine reading was -1.6, and much more consistent with hip/femur readings. My GP asked me to send the results through, although I haven’t checked whether they are on my record. I don’t feel I can trust Dexa scans ever again, and have decided to live my life and stop worrying about osteoporosis. I too was very upset and angry by the whole experience. I don’t know what to say about travel insurance, sorry.

[Kellycornwall in reply to Linnet3]

Thank you for letting me know - it’s a scandal

[Yogi_Bear]

Hi Kellycornwall, I think those of us who have had both a DEXA and REMS probably have had a similar experience - my DEXA accords my spine with severe osteoporosis whereas and REMS puts it into the osteopenia category. It doesn't necessarily mean the one of the other is correct. They both provide you with information though, along with your doctor and consultant which should then allow you to decide your own treatment plan - pharmaceuticals, supplements, diet and exercise regime. You do not have to take the advice of your doctor. I don't take the recommended pharmaceuticals and will continue using both DEXA's and REMS either annually or biennially in order to assess my progress.

Meanwhile, in relation to your travel insurance, having a diagnosis of osteoporosis should not affect your policy unless you have had a fracture in the previous five years. Hope this helps.

[Kellycornwall in reply to Yogi_Bear]

Thank you - that’s reassuring.

[Cappuccinobaby]

Get your GP to check your calcium, PARATHYROID and vit d levels from the same blood draw with the blood for parathyroid testing to be sent off in an EDTA tube. They need to rule out hyperparathyroidism which if left untreated leads to osteoporosis kidney stones or both. If you have hyperparathyroidism it can be CURED by simple surgery. If you find out that either your calcium or parathyroid hormone is high normal or high have a look at hyperparathyroiduk.com it's an excellent support group. I was diagnosed with hyperparathyroidism following a dexa scan I've just had surgery and my surgeon says my bone health WILL improve

[Kellycornwall in reply to Cappuccinobaby]

Thank you for your advice - I will speak to GP.

[Cappuccinobaby in reply to Kellycornwall]

👍👍

[Nottinghamryan2]

Hi,I think that both scanning methods are useful and very different , don’t condemn a result as inaccurate because it isn’t what you want to hear, trust your instincts about your own body,

Take care x

[Kellycornwall in reply to Nottinghamryan2]

Thank you for your advice. Have you had both scans?

[Nottinghamryan2]

Hi kellycornwall,

Yes I have after seeing about the REMS on this forum , I have made lifestyle changes including taking up Nordic walking but have continued to take AA as prescribed with minimal side effects and a positive attitude as it feels right for me to do so.

I had to pay a small supplement on my travel insurance but haven’t had any fractures diagnosed I think it depends which company you insure with,

Take care x

[Kellycornwall in reply to Nottinghamryan2]

Thank you Nottinghamryan2It is so difficult to know what to do when the results are so different -1.6 REMS -2.6 DEXA. Plus the IT systems were down when DEXA was done so some info recorded manually.

Thank you for your response.

You take care too x

[karmel]

I am of the mind not to have either a DEXA or a REMS again. The two DEXA scans I had were on different machines at different hospitals and could not be compared with each other. One of the DEXA reports included images that I did not understand and were not explained to me the same with the REMS images on the report, the combining Matrix of REMS BMD and Fragility score or how the REMS scan measures the strength of your bones . My weight on the report was 47 kgs, and yet when I was weighed during the consultation it was 44.7 kgs which in imperial measurements, is quite a few pounds out. I cannot do any more to improve my bone strength, than I am doing now, supplement and dietary wise or exercise why. I do not take any op meds, as the rheumy, my gp was going to refer me to, said she didn't need to see me because I was exercising, without even knowing my exercise routine.

[Kellycornwall in reply to karmel]

That sounds terrible. I too am having difficulties understanding the DEXA - mainly because the administrating hospital sent an impossible to read (due to small print and blurring) to my GP. Despite repeated requests they haven’t sent it in a readable format - so much for patient care - bordering on contempt for something that is routine to them but so important to me.In respect of the REMS scan, have you emailed Dr Birch direct or phoned Osteoscan? They appear to be a responsive organisation and could explain the confusing part of their scan report.

I find the whole meds issue stressful. I’ve been on AA for 2 months now - no gastric problems to date, but still have substantial hair loss, twitching eye and tinnitus from the drug. Bone pain and swelling seems to have abated. Strangely I appear to have out on 7 pounds since starting the meds!

In light of my REMS scan and report, I will be discussing stopping the meds with my GP. I don’t rule out starting them again in the future, but if I don’t need them yet I don’t think I should be taking them and should keep them in reserve.

Difficult - its a damned if you do - damned if you don’t situation.

I hope you can get some better medical advice - it is so difficult to know who to listen to or read because of the conflicting information.

Good Luck.

[karmel in reply to Kellycornwall]

I had an allergic reaction to AA and had a lot of gut issues and had to stop taking Risedronate. I found that the all the reports of the scans I have had didn't explain, for a layperson, what the images of the scan meant, neither my husband or I could understand the "acquisition sample for verification of Focus and Depth" images . I would have thought that if your body weight has not been entered correctly then the results might not be accurate. My own gp said that even doctors do not understand the scan results when I queried the results with her and said that she could understand why patients were so confused. She said that the DEXA scan shows whether your have op or not, and that is the information that doctors go on.

[Kaarina in reply to karmel]

I agree with Kelly, email Sarah or Nick Birch with your queries.

[karmel in reply to Kaarina]

Thanks I think it should have been explained to me in, in layperson's terms, at the consultation what the scan result images "acquisition sample for verification of Focus and Depth" meant. I am in awe of those that have had the REMS or DEXA scan and have fully understood and have not had any issues with the reports.

[Kaarina in reply to karmel]

I admit I do not understand it all but I was so relieved to get a reading for my spine with the REMS that apparently the DEXA is unable to do for me and has not been able to do the past two or three scans. I have scoliosis. The latest DEXA told me I had no osteoporosis which is rubbish. I was diagnosed with OP in 2012 . So I look forward to having another REMS in two years time and if it is the same result he and I will be happy. I take no OP medications now (I did take strontium ranelate for about 2 years a good few years ago now ) but I do take supplements and tot up many steps on my pedometer each day. Well over 10,000 each day and often double that or very nearly double.

[karmel]

I personally think that medical practitioners should explain\interpret, in layperson's terms, what the result of your scan means, at your consultation so can ask them what the images mean. I don't think that they can explain what each individual image means in an email. I guess some procedures/meds/treatments don't always work out for everyone.