This BMJ article (bmj.com/content/349/bmj.g5226) by the Guy's haemotology unit says that the bone marrow is most commonly affected by B12 deficiency. One of the authors (Dominic Harrington) has given presentations at the PA conference.
Has anyone in this forum had any bone marrow problems? Has anybody ever had bone marrow swelling (oedema) syndrome? It's a rare condition linked with breakdown in the bone metabolic lifecycle (osteonecrosis) and avascular necrosis (where a joint collapses); typically you go to orthopaedics and Rheumatology. Even though it's a disease of the bone marrow, patients rarely (if ever) go to haemotology departments.
As these are rare conditions, I'm expecting very few replies but would be pleased to touch base with anyone who has them.
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mickeymouse42
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Which joints did your mother and sister have bone marrow oedema in? Most typically you get bone marrow oedema syndrome in the hips but it can appear in other joints (ankles, knees) and it's very painful. Did they go to Orthopaedics and/or Rheumatology?
Both my mother and sister in there legs. My mothers legs were bigger than my waist. I was told this normally happens after operation, lymph nodes being removed etc, but neither my sister or mother had had operations. Both never ever referred to specialists.Sadly.
A B12 deficiency affects the production of red blood cells, which happens in the bone marrow. A severe deficiency can cause changes in the cells of the bone marrow that can look like leukaemia. Folate deficiency can cause the same symptoms.
But these changes are soon reversed when the deficiency is treated.
Well ain't that interesting. Since getting a load up of B12 via injections I seem to have developed painful shoulder joints. i thought it was maybe just a touch of arthritis - nothing to be done here- type of thing but maybe not. With proper B12 treatment do you think (if it is PA related) it may just fix itself???
I have no idea sadly, I had muscle problems for years, b12 injections did resolve them, but it takes months if not years for your body to recover.My MRI scan showed up ligamentum flavum hypertrophy. Possibly a result of deficiency in the first place.
Bone marrow oedema syndrome used to be called transient regional migratory osteoporosis, a term that was coined in the 1950s to label a condition typically seen in women during pregnancy that occurs mainly in the hip. It is also found in the knees and ankles and far less commonly in the shoulder.
It's commonly linked with Vit D deficiency and it's the province of Rheumatology specialists. An MRI scan will definitely show bone marrow swelling and that's why the label of transient osteoporosis was changed to bone marrow oedema syndrome. It's perfectly possible to have the condition and not to have osteoporosis (which is diagnosed via a DEXA scan).
It's a pity that there's no branch of medicine dedicated to the testing and treatment of Vitamin deficiencies. Currently B12 is in the province of haematology and Vit D in Rheumatology; Rheumatologists don't routinely test B12 levels . In theory endocrinology is the discipline that takes an overview of Vitamin health. but the main focus of endocrinologists is diabetes.
GPs are actively discouraged from doing Vitamin testing for cost reasons. A Vit D test is costed by NICE at £19 and a Serum B12 test at £3.50. This may sound cheap but if a million people ask for a Vit D test, it's a lot of money.
However, routine Vitamin benchmark testing every 10 years would probably save a fortune in the long run.
I quite agree with your last comment, it's a minefield. Logic doesn't seem to apply to stopping b12 injections, for the individuals only to suffer reoccurring problems.Just imagine the amount of revenue lost in taxes with people now unable to work. Myself included.
Even better would be to allow patients to buy the tests at NICE prices without having to get permission from a consultant. My B12 levels are very low but just within the reference range so my GP says that I can't have any of the specialist PA tests unless a consultant authorises it.
There are problems with the system we will not resolve. Getting over the first hurdle is hard enough, getting to the finishing line seems impossible.😀😀😀
I do think a lot of the problem starts at surgeries.
All I've seen is locums, you have to go over and over again with symptoms etc. Each one has different views, different knowledge on b12.
You've hit the jackpot if you find one that either suffers from it or a family member.
Just my view........ cant wait to get to the finishing line.
Yes ! A different doctor. .it took a general doctor in an a and e department to start the road yk a proper diagnosis for my daughter aftef years of rheumatology. Brain scans a lumbar puncture the list goes on. None of the above included b12 or folate on their blood tests. . So agsjn bt chance that doctor wax o that shift and my daughter ended up In a and e again that day.
I am in the USA. Diagnosed and started on B12 injections bi weekly at the end of January. I still had a lot of symptoms so we went to every ten days. Doctor tested my B12 levels last week and they are 1072 - she told me we have to cut back to bi weekly because too high B12 can CAUSE bone marrow issues. Is this true??
No, noot true . B12 is water soluable. Do not retest blood once u r on injections or other supp,ements because numbers automatically go up thus false reading. U pee out what body does need. U go by symtoms of deficiency not nummbers. Read, Could it be b12. By sally Palochuk. Her videos are on utube, def worthWatching, 87 min lonG. Then buy book, i have it and recommend to everybody. You wo t regret it. My bible.
Were you seen at an Orthopaedics or Rheumatology department? Were there any visible external changes in the ankle? How soon after you noticed the problems did you get an MRI scan? How many months did the outbreak last before you were walking again properly?
I was referred first off to a physio by my GP after limping for about a month. I had quite a bit of swelling & was given crutches to walk with. The physio arranged an MRI which happened about 4 weeks later. After the MRI I was referred to rheumatologist - that was about 8 years ago & I go for a check up every year. I would say I was on crutches for a good couple of months. I have had alot of problems over the last year with psin mainly in my spine, ribs & hips - not sure what's causing this but I have appt next week with rheumy. Hope this helps - I was very interested to read your link but couldn't gain access to the whole article. Please dont hesitate to ask if you need any more info.
That sounds very familiar. Which hospital did you go to?
Rheumatologists don’t normally check for low B12 so I guess the low B12 was discovered by another clinician - I see you post in the ThyroidUK forum so I guess it was an endocrinologist.
Bone marrow oedema is the first step on a nasty bone metabolic journey - there’s a U.K. charity called avncharity.org.uk where the patients with these bone metabolic diseases congregate. There’s only about 800 patients registered (tiny to compared to The PA society).
The main thing with bone marrow oedema syndrome is to put no weight on the joint and let it heal. I imagine you also have low Vit D and you are prescribed Vit D.
There’s an article on bone marrow oedema syndrome published by a consultant at KCH. The article is free unlike the BMJ journal reference I posted earlier:
That's very interesting thank you I will read the article. I had no idea about the charity you mention either so thanks for that also. The hospital I went to was Bath Mineral Hospital. They didnt discover my b12 deficiency & they have not ever related it to the bone marrow edema. I had a random blood test done at my GPs for fatigue & they discovered then. I have never had vit D tested. The rheumy thinks the edema was just a random one off event but wanted to make sure with yearly follow ups. I've been feeling awful this past year with flares of joint pain everywhere but dont think its related but will be interested in what they think if anything! Probably blame it on my age!
I have posted on Thyroid UK (also amazing for help) but it was for my daughter who has hashimotos.
Thanks so much for your useful info - I am excited to follow this up.
Just as a ps. At the same time I had the bone marrow edema I lost the hearing in my right ear which they called sensorineural hearing loss. I had an MRI for that too but cdnt find a cause so assumed it was a viral thing. I dont know if this was just a coincidence.
I am very surprised that you have not had your Vit D checked particularly by the Rheumatologist as the guidelines for Vit D deficiency are written by Rheumatologists.
That article directly links Vit D deficiency and bone marrow oedema syndrome; perhaps show it to your GP. It appears that people who have low B12 often have low Vit D. I have come from the opposite direction, discovering low B12 after years of Vit D deficiency.
Bone marrow oedema syndrome used to be called transient regional migratory osteoporosis (the term was coined in the 50s). The disease does migrate; it’s serious if it migrates to the hips as it’s very difficult to take weight off your hips; the movement from lying down to sitting up and then standing puts a lot of strain on the hips that you can’t easily avoid. If it’s in the ankle, it’s fairly easy to avoid weight bearing by putting weight on the other healthy ankle.
It’s very good that you can get an MRI scan via a physiotherapist. It’s the way to diagnose bone marrow swelling - it won’t show up on an XRay.
I have had blood tests done at the hospital in the past so maybe they have tested me for vit d but never mentioned it - maybe it was ok. I'll enquire when I go next week. I really hope I dont have the syndrome in my hips - I can barely walk at the moment - I have never had problems with my hips until the last few months.
Hi, have you hadcortisone shots in the past for pain in joints? Because for frequent shots that in itselfcauses avascular necrosis . I had a girlfriend who had frequent cortizone shots in her young past and then developed avascular necrosis and had several joi nt replacements. She died in 2014 due to heart complications same day as my mother.
The thinking is that steroids damage the Vit D metabolism. There’s a large study done in America at the University of Einstein that investigated the link between steroid use (e.g steroid asthma inhalers) and Vit D:
Again curing cancer outweighs the risk. Nowadays the Vit D levels are checked and restored before cancer treatment is started.
The focus has always been on Vit D. It would be interesting to know whether Vit B12 plays a part as well. The Vit D charity in the U.K. (the osteoporosis society) probably has much more resources than the PA society because osteoporosis is such a widespread disease.
I wonder whether the very serious diseases of the bone metabolism (osteonecrosis and avascular necrosis) are also linked with Vit B12. They are rare diseases but the research is conducted mainly in the fields of orthopaedics and Rheumatology not Haemotology.
The patient group that is most susceptible to osteonecrosis are people with Sickle Cell disease (who are treated by haematologists):
The morale of the story is probably that you need to check and if necessary restore Vit D and B12 levels before you use steroids for routine use (not just cancer treatment).
Checking Vit D and B12 levels “routinely” would make sense but in the U.K. the guidelines sadly advise against this 😩
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