Went from cyano jabs to methyl sublingual

Hello all,

When diagnosed with B12 deficiency, I was given cyano jabs. My B12 would go up after the jab but right back down within a month. ( ex: jab: B12 at 300 4 weeks later 160) my neurologist, pharmacist and hemeatologist don't understand. I then got a tip from Pauline and Marre on this blog ( thanks !) and they suggested that I switch to methyl instead of cyano. We don't have methyl shots in Canada therefore I bought B12 strips 1000iu and I finally, after an entire year of unuseful cyano jabs, I FINALLY have a high B12 reading at 468 and neurological symptoms have almost all disappeared. I asked my doctor if I should stop injections and she said yes but I need support on this. Should I continue the jabs/monthly plus my methyl tongue strips?

Plus, I really need help on this one: do any of you feel aweful late afternoon? My sugar levels are fine and so is my blood pressure when it happens. I can't focus let alone think when that happens..?

All comments would be grately appreciated

Isabelle

13 Replies

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  • Hi there,

    I believe you would feel much better if you could have the jabs every other day instead of once a month. Unless you can find a nurse who would be willing to give you those shots at home, I guess that idea isn't gonna happen any time soon! But the other thing you must insist on is a test to rule out any nasty helicobacter pylori bugs hiding in your gut who could be draining your b12 . If you test positive you'll take antibiotics and be rid of the buggers. They are often the cause of malabsorbtion and frequently overlooked.

    Cheers

  • Najii can you point me to any links re the helicobactor Pylori bugs?

  • Here are three out of several studies I've collected on the topic of PA and pylori ( not to worry-I won't bore you all to the screaming point yet!).

    Before you click, there's some key points which all researchers agree upon and PA sufferers need to keep in mind:

    1. PA and thyroid disorders seem to go hand in hand.

    2. PA, thyroid and iron deficiency often exist together.

    3. PA and intestinal/liver/pancreatic disorders are closely related.

    4. PA together with all of the above isn't as uncommon as one might think (or wish!).

    That said, I brought you an awesome free article which you can download in PDF. As an added bonus it has some great diagnostic charts to decorate your wall with or show your GP:

    1. An update on cobalamin deficiency in adults

    qjmed.oxfordjournals.org/co...

    2. A hematologist's view of unexplained iron deficiency anemia in males: impact of

    Helicobacter pylori eradication:

    fe.gd/VJc

    3. Role Of Autoimmune Gastritis, Helicobacter Pylori And Celiac Disease In Refractory Or

    Unexplained Iron Deficiency Anemia:

    fe.gd/VJb

    Cheers,

    n.

  • Oops-almost forgot these two:

    1. Impact of Helicobacter pylori on the Development of Vitamin B12 Deficiency in the

    Absence of Gastric Atrophy: fe.gd/VJg

    2. Helicobacter pylori—Is It a Novel Causative Agent in Vitamin B12 Deficiency?

    archinte.jamanetwork.com/ar... articleid=485312

    Cheers,

    n.

  • Thanks for your reply! It will take all the guess work out of my research on the web and will save me some time. I just read the articles suggested and feel better equiped to understand my B12 def.

    thanks!

  • You're most welcome :))

  • If you have found something that works for you then definitely stick with it but I would also stick with the monthly jabs because that's a way of ensuring that the fact that you have a problem with B12 absorption is reflected in your medical records ... even though it might not be entirely necessary.

    Really glad that you have found something that works - think it is a shame that there hasn't been more done on identifying what works for different people.

  • Hi,

    I can not imagine I suggested you change from cyanocobalamin injections to methylcobalamin, I've not had success with methyl lozenges, but use cyano jabs, and would have thought if your levels drop that much on standard maintenance of one a month, then once ever 2 weeks cyano would be better for you. But anything is possible. If you say you get so tired still ( and no that should not be something permanent) then it seems to me that you are not getting what you personally need, which is different per person. Also it would be wise to have a blood test testing also serum folate and ferritin, besides thyroid function, as all these can go wrong once B12 treatment has started. You need a good supply of B12, folate and other (B ) vitamins plus iron for good blood production, if you give loads of one then others can deplete with renewed production if in short supply. Thyroid problems are common with PA, and can give the symptoms you describe in your other post.

    I hope this helps, and also helps answer your other post,

    Kind regards,

    Marre.

  • Hi Marre,

    I'm sorry if I mentionned that you gave me advice on the methyl ( i might have confused you with another post ) no harm intended as the advice really did help me. Strangely, my folate levels and ferritine levels are high...my thyroid is perfect too (t4 and tsh tested and within normal range) All these tests were done before the start of injections and after a year of treatment were re-checked)

    That's why my docs are so confused with me. My B12 went down really low and with no apparent cause ( my pernicious anemia intrinsic factor antibody turnes out negative ) do I still need folate even if my levels stayed high after a year of jabs? the only test left to do is my H Pylori test but I don't have heartburn problems. I will still get it checked. I have a little bit of anemia too.

    Thanks for all your input Marre. You really helped me throughout the past year.

    Best regards,

    Isabelle

  • Hi Isabelle,

    Re:"I have a little bit of anemia too. ", why, what is causing that then if your folate and ferritine levels are good? My serum B12 stayed low on conventional B12 treatment, by having more frequent B12 injections (and a mixture of hydroxocobalamin and self bought cyano cobalamin) has raised my serum levels to near the 400 say, but that is always some 10-12 days after a B12 jab as I inject B12 every 2 weeks now. Just seems to me to make sense to inject more frequently not to drop that low.

    There is currently no known harm from to much B12, lots of known harm from to little B12, so if your folate , thyroid etc are fine then ask for more frequent B12 injections to avoid dropping so low, is what I'd do. There is no known reason why lots in my family are in need of B12 treatment, no IF antibodies etc, but we just do, perhaps some thing genetic.

    I've had all the tests now I think to exclude H Pylori, Crohns, atrophic gastritis etc, all negative. I do how ever have an abnormal terminal ileum (smooth) so that may explain why my serum levels drop as not much recycling of the injected B12 is happening. Normally the body is ver careful with B12 and will recycle trough bile and terminal ileum. I also have bile salt malabsorption, so some explanations for me, or at least why my serum levels stay low, lower than some others in my family, on B12 treatment.

    I think so much is still inknown, that only things can be excluded, not always a reason can be given, as its just not known why.

    I hope this helps, and I did not want to seem annoyed or anything in my previous post, its just that I know I did not feel anything with methyl lozenges so can not imagine I recommended them. But anything is possible in a PA world!

    Kind regards,

    Marre.

  • Hi Marre,

    Thanks for the quick response. To answer your question on my anemia, it's my red blood cell count that stays slightly below normal but we don't understand why if all my other tests ( iron, ferritine...) are fine.

    My ileum is also smooth as I have celiac disease and have stopped eating gluten and dairy 5 years ago. My gastro says that it still wouldn't explain why I went down so low so fast and why I don't respond well to cyano injections. I guess were are all very different and each of us need to find just the perfect formula to keep our bodies and minds well.

    If your ileum is smoothed out, have you ever tried cutting out gluten?

    Isabelle

  • Hi Isabelle,

    Hydroxocobalamin B12 raises my serum B12 higher than cyanocobalmin, but I prefer cyano as it seems to clear my head much quicker than hydroxo. So I have both (I by the cyano myself)

    I do not have celiac, had all the tests and biopsy etc, fortunately. I rather like gluten, and its just not known why my terminal ileum is smooth, one Aunt had it removed, but is now in pain, so I'm not going that way.

    I do very well on my treatment at the moment so best to stick with that I think!

    Kind regards,

    Marre.

  • cyanocobalamin is the worst kind of b12 you need to methylcobalamin inj which is the best it can be gotten from oxford biosciences

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