Possibility of wrong diagnosis Osteporosis Be Aware

[Daisi124]

Back in October was diagnosed with severe Osteoporosis, fractured a vertebrae stood at the kitchen sink. My T-scores were -2.7 hip and 4.8 spine. I was diagnosed over the phone following a Dexa scan. I was so shocked as this was all out of the blue. The doctor prescribed me Alendronic Acid. As I had little information from my GP who did not seem to know a lot about Osteoperosis I went to see a Rhuemetologist privately. He looked at all my recent blood tests and my Dexa results and told me all about OP . He told me that before any diagnosis of OP is made I should have had blood tests for Myeloma and parahyroid. He gave me a letter to give to my GP to request the tests, the myleoma one is a SPEP test. My GP gave me the blood tests and a and Bence Jones test urine test. When I got the results the SPEP test was missing but GP reassured me that all my tests were normal and so was the unrine test which would indicate myeloma.My Vit D3 was reaaly low (66) so my blood tests would be repeated in 4 months time. When the time came I rang GP for the blood forms, it was a different GP and he added the SPEP test. I got the results and the SPEP test is is not normal

Serum Total Protein Below Range 6.1gl (66.0 -87.0)

Serum Protein Electrophoresis (Immune paresis present)

Serium Paraprotein level (44mb) No paraprotein detected

I rang the GP and had a very bizarre conversation with him. This GP has been a doctor for around 40 years and he had no idea what the results of the SPEP test indicated. He said it could not be myeloma because my Serum Protein level was low, and it would be high in Myeloma not low. When I asked him what would cause the Serum Total Protein to be low he didn't know, nor did he know what Immune Paresis present means. I persisted and eventually he told me to hold on. I could hear him pressing buttons so assumed that he was looking it up on the internt LOL he was ages then came back and said he would make me an urgent appointment at the hospital as there was a remote chance that it could be Myeloma. The appointment came through yesterday for 21st March so not long to wait.

I was so upset I spoke to the Myeloma UK specialist nurse and she said:-

One of the tests carried out is to identify an abnormal protein (paraprotein) if this is evident it may mean that the total protein count is higher than it should be. I note that your total protein level is a little lower than normal and there is no evidence of paraprotein which is good news as around 80% of people with myeloma have paraprotein. It is also encouraging that your full blood count results and your kidney function blood tests were normal, these results are often negatively affected in myeloma.

Immune paresis means that some of the normal immunoglobulins (antibodies) produced in the bone marrow are lower than they should be. This can have a range of causes and warrant further investigation.

So I have an anxious wait to see what is going on. I am alternating between being convinced it will not be myeloma to despairing and thinking that it is

The point of this post is to tell people not to accept a diagnosis of Osteoperosis with out having all the relevant tests done to rule out secondary osteoperosis or myeloma which mimics OP, Insist until you are blue in the face. I am convinced at that GP's do not know much about anything to do with the bones apart from when you break one! It is a funny old world I was devastated when I was diagnosed with severe Osteoperosis and have had to go on antideppresents, now I am praying that it IS osteoperosis and not myeloma. I wonder how many other people in the UK are sat there with a diagnosis of Osteperosis that have not had any tests to look for other causes and are sat there not knowing. Shameful! Hope everybody is keeping well.

[Fruitandnutcase]

Poor Daisi, you have had a really rotten time of it, I hope things are a bit clearer for you after the 21st. Who would ever have been relieved to find that they have osteoporosis! I suspect there are probably quite a lot of people out there with osteoporosis who have not had a full range of tests.

Best wishes to you. x

[Daisi124 in reply to Fruitandnutcase]

Thank you darling, I will be sure let you know the outcome. I am quite upbeat but that is due to the anti depressants I have actually been laughing today🤣 At least my bones will have have a good looking at. I think it bad that you can get diagnosed with a serious life changing disease on the phone with nobody even seeing you. Whatever will be will be so fingers crossed. Hope you are keeping well x

[Met00]

Sadly this appears to be very common, someone has an unexplained fracture, has a DEXA scan, low t-scores so AA prescribed, never mind checking first for potential underlying causes. I'm so sorry that you've had all this worry, but such a good thing that you saw a rheumatologist who knew so much more about it than your GP. I hope that it proves to be good news in the end, at least relatively speaking.

Just a couple of other points. That's a huge difference between your t-scores, suggesting that one or both of them is in error. I would definitely ask them to explain how they can be so different, as bone density is usually lost at a similar rate throughout the body. The other thing is that 66 nmol/litre isn't an awful Vitamin D level. It's often recommended that it should be at least 75, or even 100, but it wouldn't take a lot of supplement to raise it to 75. On average 1000iu Vit D3 raises blood level by around 25nmol/litre.

[Daisi124 in reply to Met00]

Hi Met thank you for your reply. Luckily my appointment is at the cancer unit at the hospital where my husband goes (he has advanced prostrate cancer) We have been there numerous times and it is a small unit and I know all the nurses so I have confidence with them and will certainly be querying the Dexa Scan result,I will take them with me and maybe they might give me another one. I think they will also do a bone marrow test and an MRI. Re the Vitamin D3 When this all started my D3 levels were 71 and I had been taking 1000iu for years. My Rhuematologist suggest I take 2000iu until my next bloods which I did and my levels have gone down to 66 !! One of the causes that could cause a low total serum protein can be malabsorption but at my insistance I had my magnesium B12, calcium, phospates, folate etc all tested at the same time and they were all normal. The Doctor has put me on 20,000iu per week for 3 months then I will have my blood taken again. I have all the paper work for my blood tests, scan and xrays to take with me. Also I have a lot of back pain because when they did an xray (just before the dexa scan they said apart for the fractured L2 they said I had sclerosis at the L5-S1 and all bones in the spine were serverely osteopenic. I have no suggestion from the GP as to if there is any treatment for the sclerosis or any investigations so at least now I have been referred to the hospital I might get some answers as to if there is any thing they can do for me such as an operation. Any thank you so much for your reply and I will let you know what happens I go on the 21st so not long to wait.

[wellness1]

I'm so sorry for all you're going through Daisi and I hope your appointment on the 21st helps clarify things. It's really such a shame more thorough testing isn't done at the time of diagnosis and that you had to arrange to see a rheumatologist privately.

I hesitate to bring this up. With your own health issues and your husband's you have such a lot to contend with. The antidepressants seem to be helping you and that's so important. I was listening to a talk recently and antidepressants were mentioned as one type of medication that can contribute to bone thinning. I think it's a complicated issue because different classes of ADs (e.g., SSRIs, SNRIs, TCAs) affect bones differently and I've even seen something to suggest that within a class of ADs, different medications can affect bones differently. I only bring it up in case you want to ask about the particular AD you're taking. It might be reassuring to learn it's one that's considered better for bones.

It's important you feel well-supported. Stress and depression are also bad for bones. I hope things go well for you. Take care.

[Daisi124]

Hiya Wellness thanks for your reply. Yes you are correct about antidepressents. I am taking amitrypline which is not thought to affect the bones Some in that category do affect the bones and SSRSs. do for sure. I was offered those but declined. I spoke to the Ostepororsis society and they said i would be better with Amitrypline and I am not an a large dose 75mg. Also there is some evidence that Propranolol cancels out the bad effects on the bones of some Antidepressents and I am on those for palpitations. Now I am under the hospital I can make sure about every thing at the appointment. I had no choice really because I got so down I couldnt even go out of the house, but feel much better in my head now. Sorry to rush this but just put the dinner on. Thank you again x

[wellness1 in reply to Daisi124]

Oh good, you've looked into it thoroughly. Perfect. So glad you're feeling stronger now without having to worry about what you're taking. Best wishes, Daisi.

[Arcadia10]

Fantastic that you did your own research and made an appointment with a specialist before blindly accepting your GP's diagnosis and drugs, Daisi. So many people just accept what their medical professionals say, and regret it once their health is damaged further down the track through no fault of their own.

In a moment of weakness, five years after I had been diagnosed with osteoporosis, I agreed to have Prolia injections after fracturing my left tibial plateau in what was technically an accident, so not a fragility fracture. Four years later, and after enduring 18 months of intolerable side effects from Prolia, followed by two years on relay bisphosphonates to get off Prolia safely, plus three rebound fractures from discontinuing Prolia (as the first bisphosphonate wasn't efficacious enough to prevent a spike in bone turnover), I kick myself every day that I let myself be scared into taking Prolia. I've since come to realise that my original GP who diagnosed my osteoporosis and was reluctant to put me onto the meds did so for a reason - the side effects plus the fact that it wasn't necessary to treat in my case as I hadn't fractured. Unfortunately other doctors are very trigger happy, and will precribe at the drop of a hat and without doing the neecessary tests to look for other reasons why a patient might be presenting with osteoporosis. So, like you, I've learned through bitter experience that GPs and even specialists do not know everything and are probably too busy to keep up with the professional medical literature or do ongoing education courses, and their patients suffer from their lack of knowledge.

I have made a point of educating myself in everything to do with bones and bone health over the past 3.5 years as I realised that knowledge is very empowering. If one is to have an intelligent conversation with a GP or specialist, one must be able to understand what they are saying and recognise that they are deficient in some areas which can result in being given incorrect advice or a wrong diagnosis. You are obviously doing this yourself, and are able to sift through the inaccuracies and track down medical professionals who know what they are talking about, so well done. We have to be our own health advocates these days. There are so many people on this site who've been given bad advice by their doctors, and are suffering the consequences. It's actually quite frightening.

Good luck with your appointment on 21 March. Fingers crossed that you don't have myeloma and another cause will be found for your abnormal test results. BTW, is your Serum Total Protein Below Range 6.1gl meant to be that or is it 61 gl (which is only slightly below range)?

[Daisi124 in reply to Arcadia10]

Thank for taking the time to reply Arcadia, you have been through quite a lot yourself and I wish you the best of luck with your treatments. You are right the reading should be 61 and not 6.1 LOL. I have been taking Alendronic nearly 5 months now and had no side effects whatsoever but I stick rigidly to the instructions. I take it as it tells you to first thing in the morning, I gallop down the required amount of water and stand up for 30 mins. I read somewhere that the 30 minutes standing upright is paramount to not get side effects but I read if you leave it longer than 30 minutes before eating or drinking anything there is better absortion so I leave it 90 mins to be on the safe side. I had no choice about the Alendronic as you can see from the results of my Dexa my bones are very fragile. I have learnt a lot from this site and take vitamin K2 -MK7 which I had never heard of before. I also take magnesium every other day. I have to be careful with magnesium as I have a huge kidney stone which they discovered on a xray when I had the fragility fracture. I was put on the waiting list for an urgent appointmnt with the kidney clinic but after 4 months I have just got the appointment which is for the 25th so one less thing to worry about. Thank you again for your reply. I will let everybody know on here how I go on at the hospital that are going to screen my bones on the 21st.

[Arcadia10 in reply to Daisi124]

I didn't realise you'd actually started taking the alendronate, Daisi. If there is another reason for your osteoporosis, it might not be necessary. I would have expected that the rheumatologist would have advised you to hold off starting it until you'd had tests done, hospital appointments, etc. I also hope that the GP who put you on it went through the side effects with you, and especially the things you should not do, like have invasive dental work, extractions, etc. I have been on alendronate for five months now, but want to wean off it ASAP because of the potential for rather dire long-term side effects. Anyway, I'm sure things will become a lot clearer for you in terms of what is causing your osteoporosis and whether you are on an appropriate medication when you have your appointments in a few weeks' time.

[Daisi124 in reply to Arcadia10]

The Rheumatologist told me that if it was mylemoa or the parathyroid my bones were so thin they would have put me on AA or something similar for a period of time anyway. I had a tooth at a couple of weeks ago when I had been on AA for 3 months and it healed nicely thank goodness Yeah! I had a bit of luck with that for a change. I will let you know how i get on when I get the appointment done.

[Fran57]

I am sending you a (very gentle) hug.Stay safe,

Fran 😉

[Daisi124 in reply to Fran57]

Thanks Fran, hug back. x

[MyCatsNameIsMouse]

You poor thing! Not knowing is the hardest thing. Is there anyway you can go and get a private bone health scan just to see if DEXA is accurate? I've heard really good things about the REMS scans in which apparently you have an appointment/consultation with a bone health specialist as part of the scan -he does the actual scans himself so there is no room for inaccuracies? Just a thought.... In the meantime, try and keep positive xx

[Daisi124 in reply to MyCatsNameIsMouse]

Hiya Cats thanks for your reply and sympathy, everybody on here is so kind The REMS seems like a good idea, i will take a look where I can get one in my area. My appointment at the hospital is on the 21st so not long to wait only 10 days. I do keep positive , the antidepressents I am on have certainly done the trick and suit my very well, I was even doing a slow dance with my husband last night! And I have been laughing despite the dire circumstances after my huband got diagnosed with advanced prostrate cancer for which their is no cure then in the middle of his treatment I broke my vertebrae and got the results of severe osteoperosis there has not been much to laugh about but now we both accept whatever will be will be and there is still a life to live for as long as we possibly can. We have been together 30 years and this had brought us closer together. Thanks again x

[MyCatsNameIsMouse in reply to Daisi124]

Onwards and upwards, lovely lady.. you seem to have any amazing energy around you -keep it up.... and don't let the bastards grind you down x

[Darcra]

Thank you Daisi124 for your very helpful reply.Will do some more digging. Trouble is my husband is also under the fracture clinic because is Femur hasn’t healed after 14 months but it’s the oncologist who is advising AA because of the two fractures in his back.

So complicated for us simple folk, and so worrying. x

[M3745]

You may have MGUS. When I was diagnosed with osteoporosis, I had bloodwork to check for secondary causes and my SPEP came back abnormal. MGUS is usually an asymptotic condition which can or never turn into Multiple Myeloma and should be monitored.

[buddy99]

I'm so, so sorry Daisi124 that you have to endure all this. I sincerely hope that all turns out to be well. Thank you for warning people to be too trusting of doctors and to rather make sure to fully understand everything before doing anything. My doctor wanted to put me on Prolia. Having had a multitude of medical mishaps in the past I called AmGen (the manufacturer of Prolia) and gave them all my data. Their medical advisor told me that they do not recommend I take Prolia. Let that sink in for a moment. The pharmaceutical company that has an interest in selling their product tells me not to take it. I went with their recommendation rather than the doctors, of course. As a patient you, unfortunately, have to be on your toes, always, always, always.

Again, thanks for this post and all my very best wishes that all turns out to be well for you.

[Daisi124 in reply to buddy99]

Thanks Buddy I will let you know what happens at the appointment

[Cappuccinobaby]

Hopefully the tests for myeloma will be negative. You then need to be tested for hyperparathyroidism a disease known to cause high levels of calcium in the blood leading to bone density loss and osteoporosis if left untreated A small operation to remove a faulty gland in the neck will improve your bones. However be aware bisphosphanates such as Alendronic Acid can lower blood calcium. Good luck for the 21st keep us posted

[Daisi124]

Hi Cappuccinobaby, I have been tested for parathyroidism but it was not that, I was rather hoping it was but no such luck. I do make sure I have enough calcium and the blood tests for that are ok. Thanks for posting and for the good luck I will certainly let all you kind people know what happens whatever the outcome x