Just a thought on B12 and Osteoporosis

I have 2 fractures, T8 which, I’m almost sure, occurred about 2.5 years ago. My back was fine when I got on the train – a very painful back, in just that T8 spot, shortly after I arrived, – no fall, nothing I can think of to cause it. (The second fracture, a Lumbar, no idea when or how it happened.) osteoporosis?

I started vitamin B12 injections about 16 months ago for very low B12. (103 < 180-1000)

A couple of months ago a bone density test showed osteopenia and

Kaarina posted this to me - “ I am surprised you have been dx with osteopenia and not with osteoporosis as you have fractured . . . “

Perhaps the B12 had improved my bones from osteoporosis to osteopenia.

In view of the following article (it is only from 1 example) could there be a connection with low vitamin B12 and low bone density and a possible treatment to improve it. Vitamin B12 is not tested for in the normal blood test perhaps it should be.

Reversal of severe osteoporosis with vitamin B12 and ... - NCBI

ncbi.nlm.nih.gov/pubmed/815...

PS I also have degeneration of spinal cord diagnosed by consultant a week ago. (Well done NHS GP's another X for your inadequate B12 treatment.

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  • Very interesting. Thanks for posting. It appears that the etidronate the patient was concurrently receiving is not usually associated with such a dramatic improvement in bone density. Are you taking any of the bone meds yourself?

  • I get vitamin B12 injections and take folate, a probiotic and an A to Z supplement, all to help my B12 deficiency.

    My spine consultant has told me to get supplements, I am waiting to see what I am getting from the GP, just had a blood test to see what is short.

    I have not been prescribed anything that some of posters on here take, but B12 seems to be helping.

  • Hello, I'm in the US and believe you may live in England. Twice I have tried to send a detailed reply to you, and twice my computer didn't let it go through.

    So I am sending a brief, pointed reply to you as a WAKE UP CALL.

    There is no true reversal of osteoporosis. I have it, it was diagnosed properly after a vertebral thorasic fracture recently by a rheumatologist who is teaching professor at a well-respected medical school near me.

    If you want further detailed info of what I am going to say, please write me.

    Forteo (Forsteo in England) is THE ONLY KNOWN MEDICATION at this time throughout the world that has a shot at stopping the progression of osteoporosis fractures. It was research, created and sold by Eli Lilly located in the US since 2002. It is injected daily for 2 years.

    From a desperate post recently by woman in England, I learned Forsteo is being provided to her AS THE LAST RESORT as she has so many fractures that her internal organs are no longer being supported by her back and she is in very bad pain. Over the years she has been given just about everything else. But from my doctor's "hypothetical" thoughts, it probably extremely too late for her to think even Forsteo can be expected to do much good.

    Forteo is the medication OF FIRST RESORT in the US. It has been available since 2002.

    It is as expensive as hell. And I think that is why the English healthcare system did not provide it to her years ago when it could have helped her.

    I can't afford Forteo even with my private insurance in the US....but due to persistence, research, and maybe sheer luck, I have found a way to acquire it.

    I don't want another woman anywhere not know that this medication exists and has documented results.

    My best to all of you.

  • Please dont misunderstand my asking, but in your closing paragraph, why do you refer to women only. I can't imagine that you're being sexist. ☺

  • Hi PTSDforyears Thank you for your detailed post. I know very little about osteoporosis only having seen the Consultant last week.

    The bad news is I don't stand a hope of getting Forsteo (I am in England) I can't get B12 injections costing less than 1£ on the NHS. probably about 1$.

    The good news is that I am fairly ancient and my back will probably last me. The T8 vertebrae aches if I stand for long, the lumbar one I hardly notice although it was as wedged shaped as the other on the MRI.

    Where are you in the States. I lived there for six years in two lots of three years. We were in Maryland, just outside Washington DC. I loved it there, loved the museums and, believe it or not, the summer weather. My son still lives there and we have friends we keep in touch with too.

  • I have recently had blood tests and my B12 was abnormally high at 1423 ng/L. I took a B complex supplement, 1 a day for 90 days but have now stopped as I am told that it is not good to have a high reading!

  • Hi SheilB I'm no medic but I believe that high readings only matter when you are not supplementing. If you are supplementing it will be high.

    Check this with one of the 'experts'.

  • Thank you beginner1, I have finished the bottle of vitb so will not take anymore until my next blood tests in July. They also showed a slight low White blood cell count and I have lost weight, other than that I am fine and active!

  • Hi again SheilB I forgot I was on the Bone Forum. You need to post on the PAS forum for PA and B12 questions, they are a knowledgeable bunch there.

    Why did you start taking B12 were you deficient?

  • Having read that B12 was good for bones I bought a bottle of D vits without knowing whether I needed them! Usually I take the usual, VitD3,K2 and magnesium. My diet is good and I exercise but am concerned that my Strontium Ranelate is about to be stopped. Have you a link to the PAS forum please? Thank you for replying.

  • I was diagnosed with osteoporosis after a DEXA scan found 5 compression fractures between T7 and T11. Im due to start Denosumab (Prolia) soon so hopefully that will make some difference.

    Why don't you ask about it when you next see your bone guy?

    Mike

  • Hello Mike. First remember I am not a doctor, but questioned my rhemotologist profusely and attacked and researched the use of Forteo (Forsteo) mercilessly, as well as other medications on the market for osteoporosis and osteopenia . (They are different). The "research" included "interviewing" other types of doctors about it. The information I share is based on the physician information, recommendations and all the extensive reading of the actual medical information and testing results and follow up on medications.

    So take what I have to say in that light. I am not a doctor....am an atorney at law by profession.

    PLEASE read about PROLIA on the internet. I believe it is the one that can cause serious side effects including jaw bone loss and loose teeth...Believe it is two injections a year....You would never be able to have any sort of implant done in your jaw (tooth implant, etc.) there afterward. Prolia does not add bone, has never been advertised to do that, and as not produced to do that. It attempts to prevent further bone loss. Your body's natural hormones are involved in the production of new bone and sluffing off old bone. It is widely advertised on television here by Blythe Danner who was a rather famous actress years ago and still is well known here..

    I would have to pull up all my notes on Prolia to make certain this was the reasons I agreed with my physician that Forsteo, defintly not Prolia, was the correct one for me, but I am getting ready for Mass now. The rheumatologist should have told you about this.

    I assure you the rheumatologist that treats me is the best around. Full teaching professor at the medical school and is part of the medical school group of practioners not always available to just the general public.

    First, it should be a rheumotologist following you, interpreting the bone scan results, prescribing any osteoporosis medication for you They are THE SPECIALISTS in this field.

    I read everything I could for a week about every alternative I could find before even agreeing that Forsteo was the medication to use.

    Reviewed the testing, including the placebo groups etc., some of which included men needing something for osteoporosis for various reasons.

    Also talked with dentists, orthopeadists, oral surgeons, gynocologists, sports medicine foot surgeons, and several other specialists involved with bone and hormones.

    People who have had certain radiation treatments, I recall, may not even be able to use Forsteo. But, I will have to pull out my research notes later to confirm that.

    Prolia and there medication for osteoporosis other than Forteo, inhibit the the amount of old, and exisiting bone loss which one's body may still be producing on its own, and is prescribed for people where osteopenia is not so advance and nay help.

    While it is not nearly as expensive as Forsteo, ($2400-$3000 US retail without the needles for daily injection) in the US, each of the injections in our rheumotologist office at retail costs is over $1,200 US plus the cost of the office visit.

    I'll be back later in the day. Am packing to leave the country for awhile tomorrow.

    Take care of yourself and my best wishes to you for good health.

  • OH, my apologies, your name is BILLY, not Mike. So sorry.

  • No you were right first time. Billygoatgruff is my pseudonym.

    Mike

  • Billy, you referred to Prolia . It is spelled Prolea n the US. pulled up my files,it is the medication that can cause bone loss in jaw and loose teeth as a side effect. A periodontal specialist advised me due the chemical composition of Proleo, tooth implants, etc., wouldn't be possible from his experience and his professional practice.

    Ferteo is teriparatide [rDNA origin].

    Hopes this helps your decision about what questions to ask before starting Proleo.

  • Thanks for that, yes, I've done loads of research on medications available to me. Its a case of having to really as many of our GPs (local doctors) arent exactly experts in any particular field and prefer to refer us to a relevant consultant. Unfortunately, with the state our health-care is in atm, waiting lists can be well over 6 months.

    I'm actually quite limited to what medication I am able to take as I had a liver transplant last year and am currently stage 2b CKD owing to the anti rejection meds.

  • Sorry Mike to hear about your complicated situation with your liver...so thankful you got the transplant though.

    If you think a medication may good for you, try to contact the company producing or selling it to see if it can help you physically or financially.....that's several of my widow friends in the US in their 70s have done to afford their insulin for diabetes.

    As you can tell by now, I am not sexist....even mentioned in one of my replies to you about men and the use of osteoporosis medication. :)

    Don't know how that might work in England.

    It this stage in life I walk briskly and don't run unless someone is chasing me....and then I might slow down if he's handsome. :)

  • Out of interest, PTSDforyears, as you have done so much research of the drugs available, what is your opinion of Protelos - Strontium Ranelate?

  • I am sorry but really am outof time. Dueto our business we are on ships once a month, and I have just a few hours to pack for us, my service dog and get the house in order to leave very early tomorrow morning.

    Please look that up on the internet just as I did and carefully read...what you don't understand, see if a contact address or phone number is anywhere in the information...or the name of the companies which produce or sell it. You'll be surprised what's out there. My very best to you and your health. :)

  • I am already being prescribed SR and as happy as one can be to be on an OP medication although I have a strong feeling this will stop in about August time this year, but was just interested to hear your views. Take care. :)

  • I do know that D3 is important as it is 'sunshine' mimicking the best it can to natural sunshine needed by the body to absorb calcium.

  • Hi Kaarina I saw the spinal consultant 10 days ago and he did not prescribe anything apart for saying I should supplement. I had a blood test, last week, for the supplementing, results not back yet, I asked for a copy.

    All I know about it is that I have osteopenia, fractures, 2 wedge shaped vertebrae T8 and a lumbar one, and spinal cord degeneration.

    Should I be getting any of the medications that others are getting?

  • Hi beginner1

    I would suggest you ask that question of your spinal consultant. You could call the NOS helplines for their view, which would probably be take medication. I thought that if you had fractured it was best to be on medication but if course if it is offered it is up to the patient to decide whether they wish to pursue this path or go purely for exercise, enough calcium in their diet, Vit D tabs. There are other vits/minerals that one can take too. It is a matter of finding out these things and deciding for oneself. At the moment I would say we are the guinea pigs. I personally wish to take an OP medication. My spine is in a poor state, my mother had OP.

  • I'm not seeing the consultant unless my back gets worse, but I will ask the GP's although I'm not sure I trust any answer they give. £££.

    I'm sorry your back is so bad, pity they haven't found a better treatment.

  • The doctor I see in the endocrinology department purely because I requested a referral to see an OP specialist after the result of my last dexa and was told I no longer needed medication. After seeing the OP doctor and himhearing my history, he agreed that I DO need medication. He was the person who had sent the report of my DEXA to my doctor. I saw him again after a year and he wishes to see me in 6 months. I feel I am being looked after at the very least. ;)

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