A member of a Facebook group for Osteoporosis was told that the reason for her osteoporosis could be that she has been having 3 monthly b12 injections without taking 5mg folic acid daily.
She has been having the injections for ME and has now found she has osteoporosis after a Dexa scan.
I asked if she knew her folate level, it was 15 so not low. I advised her that a maintenance dose would be enough unless her levels dropped.
I was jumped on by admin on the site, referred to a so called expert on b12 who runs a Facebook b12 support site and who was said to give advice on b12 at GP surgeries and most of my comments were deleted! I had said that if they would please show me any peer reviewed evidence I would be interested in looking at it but was told to join their Facebook b12 group as was the other member.
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The Facebook B12 group I was briefly in felt like the cult of Folic Acid.
Every single member suggested increasing Folate to 5MG per day, without knowing what existing folate levels were. Just that Folate is the key co-factor.
If someone doesn't have a low folate level, taking 5mg per day could make things worse surely?
I'm no medical person at all. But my gut feeling was that almost everyone was on some other type of acid.
It was probably the one I joined before finding the PAS site, I didn’t expect an osteoporosis site to do the same so was quite surprised to find the same attitude from admin on that site. Yes, it was almost like some sort of mantra that everyone had to chant to belong to the group. So very odd!
osteoporosis is a potential consequence of b12 deficiency - because B12 plays a part in cell reproduction - that generally manifests in macrocytic anaemia but there are other types of cell, including the cells that make up bones so ... it can also play a part in osteo-arthritis.. As folate is also involved in cell reprodcution a folate deficiency could also be a cause.THe face book groups do seem to have been infected with some misguided notions about folate and supplements and often seem to advocate a need to supplement everything in huge does which can actually be harmful in some cases -supplementing folate in doses intended to treat a deficiency is one such instance.
Food is as far as I am aware, the best source of vitamins and minerals and a really good diet would be one that ensured that you get all the micro-nutrients you need from food.
The caveat on that would be that B12 absorption problems can affect the absorption of other vitamins and minerals to a point where relying on food intake may not be enough. However, doses of 5mg should never be taken without medical advice and doses of 1mg+ have been shown to be harmful (folate trap)
Unfortunately there are many examples of 'group think' on social media. It isn't unique to social media but there are some factors about social media and the instant reaction that seem to make it more prevalent than it is in the real world - though there are examples of places where it has done real harm.
It's dreadful isn't it! As you say they won't listen to balanced reason. The best you can do is report them to Facebook but then it's a shame to lose the benefits that these groups can provide to people.
Osteoporosis is most commonly associated with Vit D deficiency. The Royal Osteoporosis Society played a key part in drawing up the guidelines. There’s a concept of bone lifecycle where there are osteoclasts and osteoblasts that cause bone cells to regrow. As you get older, the process slows down. Rheumatologists use bisphosphanate drugs to reduce the slowdown of this process,
There’s another kind of osteoporosis called transient (regional migratory) osteoporosis that affects younger people mainly in the hip and young women in pregnancy are mainly affected:
ncbi.nlm.nih.gov/pmc/articl...
This is probably the link with folate deficiency and I guess it’s one of the reasons why folic acid supplements are recommended to pregnant women.
The new name for transient osteoporosis a term coined in the 1950s is bone marrow oedema syndrome. The reason for the renaming of the disease is that MRI scanners pick up the swelling in the bone marrow. in patients who have the disease. The swelling of the jelly like bone marrow causes pressure on the soft inner subchondral layer causing fractures and lesions which will ultimately result in joint collapse.
Problems in the bone marrow are associated with B12 deficiency which is associated with folate deficiency.
I guess that’s the link between osteoporosis and folic acid but transient osteoporosis which is a rare condition may not be closely linked with classic osteoporosis which is common in elderly people. The diagnosis of osteoporosis using a Dexa scan is complicated correlating BMI with an XRay.
It appears that people with B12 and folate deficiency often have Vit D deficiency but I don’t know if the link is well understood. Food plays a part (Vit D fortified milk played a major part in turning rickets from a common to a rare disease). However the main source of Vit D is sunlight and there’s a complicated process by which sunlight gets converted into Vit D which can be disrupted by gut problems (e.g lack of the elastase enzyme); however apart from the faecal elastase test there aren’t many other clinical tests to check where the process has failed.
Thanks for the link, I found it very interesting as with my last three pregnancies I had awful right sided back, hip and leg pain during the last three months. It worsened with each pregnancy and never completely resolved after the last one. I was told it was wear and tear arthritis the first time, I was 24! Next time sciatica, then the last time that it was sciatica and that my sacro-iliac joint had slipped out of alignment and I had a couple sessions of physiotherapy. I was given paracetamol and codeine for the pain and serotonin tablets to help me sleep, I had iron tablets and injections for iron anaemia but can’t remember taking anything else.
This was a long time ago now and I hope things have improved.
I have osteoporosis of the spine, osteopenia of the neck - picked up around the time that B12 deficiency found and low ferritin and folate. The Dexascan was done only because I was post-menopausal and had broken parts of both of the large bones at the top of arms - the bit that goes in the socket (or doesn't on occasion !) Luckily these were broken in two seperate incidents about 10 years apart. One buttonholed- and required a pin, the other one needed later keyhole procedure so not straightforward. I have prescribed D3 and Raloxifene for the osteoporosis. Previously given Risedronate which did not agree with me. Then monitored attempts to get by on D3 alone weren't entirely successful so Raloxifene added instead by rheumatologist. Okay though. The folate and ferritin were each treated with a prescribed 3-month course of tablets because although not below range, were low enough to be a possible cause of hair loss and bleeding gums after B12 injections were started. My folate and ferritin then dropped quite quickly again, and continued to do so despite later taking multivitamin and mineral tablets daily to try and boost it. Rather unstable and erratic for a couple of years, which is why they are regularly checked by GP.
My MMA was tested 6 times over 3 years before I got down to a "within range" result.
I had the best blood test results in November last year that I've seen since 2015 when all this started. I have now stopped taking the multivitamin and mineral tablets and have not seen any deterioration since or hair loss/bleeding gum symptom return.
B12 is now very high, as I self-inject frequently.
I saw no reason for 5mg of folate, either for B12 deficiency or osteoporosis.
Final MMA result : 205 nmol/L (range: 0-280 nmol/L)
Results in October 2020:
B12 : > 2000 ng/L ( range: 197- 771 ng/L)
Folate: 19.8 ug/L ( range: 4.6 - 18.7 ug/L)
Ferritin: 82 ug/L ( range: 13 - 150 ug/L)
A folate level of 15 does not seem low to me either.
It was suggested to me that an optimum level would be in the upper third of given range.
For ferritin: above 60 ug/L (GP advice) or around 80 ug/L (oral medicine consultant advice).
Thank you everyone for all your very helpful and informative comments. I’ve had problems with low ferritin and iron anaemia for most of my life, Endometriosis/adenomyosis meant I needed a hysterectomy at 40 which is probably one of the reasons for my osteoporosis. IBS and osteoarthritis for many years. Diagnosed with osteoporosis 15 years ago after badly breaking both bones in my wrist. Fibromyalgia 14 years ago. About 5 years ago my mild asthma became very much worse and difficult to control. A little over 2 1/2 years ago diagnosed with pernicious anaemia, I also found I had low vit d, and my ferritin was once again on the low side. I believe I had pernicious anaemia for many years before finally a doctor tested my b12. It was really only after my PA diagnosis and struggling to get enough injections that I became a bit of an internet researcher to try to get well that I realised how little knowledge doctors had about PA/b12 deficiency and other illnesses. I can well understand why in this age of social media many of us go to the internet and self help groups as it’s exactly what I did myself. Sadly much of the advice given through these groups is flawed and people can easily be taken in by so called experts that seem to know what they’re talking about as we desperately want help.
Luckily for me, I had a GP who was very supportive and worked really hard to get referrals to relevant consultants, following up leads, advice, suggestions while trying to find a frequency of B12 that was effective for me. [Although most of the consultants seemed to know surprisingly little about B12 deficiency.]
Luckily for me, my manager at work helped me to join the PAS before I went off on what became long-term sick leave- and the people here on this forum gave me hope, links, encouragement and kindness.
Luckily for me, I've never been on Facebook !
Sorry to hear that you have had such a struggle for a PA diagnosis, and had so many health problems along the way. It should not have been a stretch to get to a reason for checking your B12 serum level : there were plenty of warning signs there.
My b12 had never been checked before, my serum level was only 58 and I had every symptom by the time it was checked.I have found that the neurologist I had an appointment with did seem to have even less idea about b12 deficiency than the GP, who at least admitted that he didn’t know much about it, just that “everyone else manages on 3 monthly injections “.
I am pleased that there are doctors who don’t think everyone needs the same treatment.
For my osteoporosis I did try three different makes of bisphosphonates over a year when I was first diagnosed. I had awful stomach/heartburn problems with all of them so refused to take any more. I was then prescribed calcium with Vit D tablets and I took these for some time. Then I did some research and asked for my calcium level to be tested, as it was good and I have a calcium rich diet I stopped taking them. I now buy vit d, vit K2 mk7 and magnesium, but not in the high doses recommended by Facebook groups. I do weight bearing exercise when I can, only Pilates and walking.
I did have Dexa scans every 3 years but last time on the results slip it said book an appointment in 5 years (cutbacks?), I have to make a note and ask my GP to book these. Last time the report just said as it was a different scanner it couldn’t be compared to the previous one, just that I was osteoporotic. From the results report it seems my spine has worsened but my hip score has slightly improved.
My GPs have never remarked on it since I stopped the AA etc.
I do a lot of walking too. Seem to have lost my shock absorbers in lower spine so I can't run. I have been doing lower back exercises from a sheet sent to me by the rheumatologist, but can't do some of them at all, so I just do more of the ones I am able to do.
I also stopped taking bisphosphonates -because of jaw pain -and have recently been given Raloxifene instead, after a trial of about 2 years on just the D3 (800iu daily). Seems to be working- but how can you tell ? Dexascan due in 2 years to check progress- rheumatologist said that this treatment and monitoring is to improve my future outlook.
Meanwhile I have broken a rib. Nothing to be done about it really -it would mean a long wait in A&E to be told that they won't x-ray what they can't mend. Informed the reception at GP's just so it is on my record - only to be told that I need to speak to a GP and to phone back at 8am. the next day to book. This seems a pointless waste of a telephone appointment where diagnosis would be impossible. So will send a letter instead.
Five years sounds a long wait if anything is showing up as worse than before. I would've thought this to be a routine monitoring frequency if stabilised ?
Probably more likely to be increased backlog than cutbacks- and evidently Dexascan machine having to be thoroughly sterilised between each scan to reduce covid risk has increased the waiting time.
Just trying to do a rolypoly over the bars in the playground. Should be an age restriction in place ! Obviously not quite the Olympic gymnast I believe myself to be.
I had a fall, was taken to A&E and had broken ribs a couple of years before my osteoporosis diagnosis. Like you say they don't xray unless they suspect you've punctured a lung or something as they don't do anything about it so there isn't any point. Very painful, especially when your family starts cracking jokes!
I've turned 70 now so past the age when they seem to follow up with anything!
I don't know why the FB groups have not been shut down. They are sometimes informational, but more often all they offer is to take huge amounts of Folate, because we all know B12 will not work without 5mg of folic acid everyday! That in addition to a dozen other co-factors that must be taken or else nothing will work properly. They can be dangerous to some people. I find it interesting that some of the members enter the group crying for help and information, at the end of their wits, and then 3 months later they are interpreting other peoples lab tests and recommending treatment options. I understand the frustration we have over the lack of knowledge from the general medical community, but some people are desperate for anything, anyone that will offer help, even if it is bad.
When I first came to this forum for help, I was deteriorating on 1 injection every 3 months and GP could not find a reason for this as serum B12 was by then up to 860 ng/L. yet all of my symptoms had worsened. She said she was coming to the end of what she could do.
I was totally exhausted by that time, confused and forgetful, and had uncontrollable mood swings: crying, arguing, solitary and lost. I had hair loss, bleeding gums, angular cheilitis. Broken bones weren't healing well and a tooth extraction led to jawbone infection and stitches. I was going to the toilet up to seven times a day by then, had hip and back pain, was breathless and slow -unable to go far or do much and certainly unable to work. Barely able to think and frightened.
At that point, I would have done anything. I found Martyn Hooper's book, which led me here. I could have as easily instead found Facebook. Rational comparisons would not have been possible by then.
Two months later, my GP started me on a frequency of 2 injections a week- and then functional B12 deficiency was diagnosed about three weeks later, as my MMA was found to be raised seven months after B12 injections had started with a loading dose.
My serum B12 had initially been196 ng/L - luckily the range started at 197 ng/L.
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