Pernicious Anaemia Society
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Adverse effects with Hydroxocobalamin

I was severely B12 deficient for over a year and I was self-injecting myself with Cyanocobalamin for a month and I was getting better everyday. My neurological symptoms were disapearing but very slowly so 3 days ago I change Cyanocobalamin to Hydroxycobalamin Acetate and my health deteriorate once again. Almost all of my symptoms are back and it doesnt make any sense to me as Hydroxycobalamin should be superior to Cyano. Does anyone experience something similar? Or some adverse effects with Hydroxocobalamin?

Thanks a lot. :)

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What triggered the switch if cyano appeared to be working/helping?

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There is no vitamin B12 available without prescription in my country and I got cyanocobalamin on prescription but then doctors refused to give me another prescription even though I was still symptomatic. So I learned about B12 from the book ''Could it be B12'' and ordered hydroxocobalamin from rotexmedica and now regret that. Im gonna order cyanocobalamin to treat myself and methylcobalamin to see how this one works for me. I was told other 2 are supposed to be better to treat my neurological damage and that is why I started experimented.

Thanks for reply.

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Hi mariojurik8 I have been having cyanocobamalin B12 1mg injections every month for more than 46 years having been diagnosed with P.A. back in 1972.

When hydroxocobamalin was introduced in the 1980s I too had an adverse reaction so have continued on with the cyano - I had my scheduled injection this morning at 9.00am.

The amount of cobamalin in both is the same the only difference is that the hydroxo is supposed to last longer in the bloodstream before it is excreted via your urine.

So, if your symptoms improve with the cyano and you can afford the more frequent injections I would stay with them.

Do you know what your Folate level is as this and the B12 helps your iron to make red blood cells and to function properly in your body?

I'm not a medically trained person

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Hey clivealive, may I ask you what your adverse reaction looked like? For me hydroxocobalamin completely reversed my slow recovery. Have you ever tried methylcobalamin? My folat and iron levels are fine as I supplement myself with them and I also supplement with pottassium and magnesium.

Thank you for the reply.

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As far as I can remember from 30 years ago I had nausea, headaches and very bad acne, plus I couldn't "last" the three month interval between injections.

I use a Methylcobamalin mouth spray every day as a "boost" and have had no allergic reaction to that although just how much benefit I derive (given my P.A. and a partial gastrectomy 58 years ago when I was 17) is open to question.

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I see. Have you ever tried injectable methylcobalamin? After 3 daily shots of hydroxycobalamin I got all of my symptoms back. I turned back to cyano this morning and I will see how it goes.

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I have exactly same side effects as you Clivealive!

Not sure it comes from a specific B12 though, I was thinking it depended on the quantity or from a lack of potassium (banana and coconut made me feel better).

I will try to see if it comes from Cyano, Hydroxo, Methyl or Adeno (I use the 4) :)

Mariojurik, since I supplement I globally feel better, but improvements are very slow and some days I still feel awful (same as 2 months ago before I started). It is very disturbing, because sometimes I am sure all my problems come from B12D whereas when I feel bad I am in doubt.

In your case you should try back Cyano and let us know if you feel better :)

I will try the same experiment (one week only Cyano, then one week only Hydroxo) to see how it goes :)

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I was feeling really well after daily injections of cyanocobalamin. I was feeling the best in the period of 2 years of suffering. Im now back on cyano and I will surely let you know if Im getting better once again. Please do the same about your experiment. I guess thats all we have, we just have to try ourselves as long as there is not enough awarness about this issue.

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Hi clivealive, is it that Hydroxocobalamin is more for those whose body can't convert methyl or perhaps the other one the cyano into Hydroxocobalamin? I think I read that somewhere.

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I really don't have the "foggiest" idea christinezzzzzz - which is my normal brain state most of the time :)

Maybe someone else will be able to answer your question.

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ok, thank you clivealive for your reply. I can relate to the brain state you feel. I am off to the doctors this afternoon to discuss my blood tests & I am going to be asking that I be referred to a neurologist.

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I read that cyanocobalamin converted into hydroxycobalamin following administration ..anyone else read this

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different people respond to different types of cobalamin differently - no way of knowing who is going to react to which one in which way and which is the best for them.

It may be that it is the other ingredients that you are reacting to - suggest you go back to cyanocobalamin

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Thats right! I thought so too but If Im just alergic to some ingredient of that brand I guess Id just have headache, nausea but Im actually going backwards in my symptoms. Its like hydroxycobalamin destroyed stores of cyano and leave me with all kind of neurological symptoms and that doesnt make any sense to me as its supposed to be better in repairing nerve damage.

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no reason why hydroxo should be any better at supporting neurological repair than cyano. The potential advantages of hydroxo are cyano is that people tend to retain it 2x as long but that's just an average and there are people out there who retain cyano longer than hydroxo.

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Thanks a lot for your input Gambit. Im back on cyano and I hope I will be getting better once again. I also plan to try methyl and adenosylcobalamin injections in the near future and see how that goes.

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Well, mystery is solved! Cyano is slightly better for me than hydroxocobalamin but it still was not enough. I started to take methylcobalamin lozenges from brand Jamieson 5000 mcg a day and I improved rapidly. That means hydroxocobalamin is the worst for my neurological symptoms, cyano a little better but I should really focus on active B12 forms and so I'm gonna experiment with adenosylcobalamin too.

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For neuropathy, be sure to cut out all vitamin B6 which is toxic-- especially for slow methylators! Get your DNA done! Even in diet, B6 can cause neuropathy. I had that for years til I cut out multiple vitamin and then modified diet to less foods with high B6. I still have Hashimotos but no more "ideopathic" neuropathy. Gluten, grain, and dairy free diet has lowered antibody levels and eliminated symptoms from Hashimotos. Not taking any meds. Omega 3 fish oil good for neuropathy too. Neurologists are so clueless! See Facebook B6 toxicity site. Good luck!

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Well I have to admit my neuropathic pain got worse when I increased my intake of vitamin B6 (pyridoxin) and discontinued omega 3 fish oil. But Pyridoxin is an important Vitamin for many biological functions, won't I get defficient? I got tested on 2 different mutations on MTHFR gene and waiting for the result. Is there any other test you recommend? Could you please describe me how your neuropathy looks like so I can understand it better? I suffer from excrutiating pain in the area of right scapula and neck. I checked research on Pyridoxine and they didnt find symtoms of neuropathy among participants despite taking 200mg long term. How is that possible when I take only 25mg? My guess is there were no slow methylators included in trial or these trials are really flawed.

Thank you for sharing with me this valuable information!

Also what is your experience with copper? Test showed I'm deficient and it may be causing neuropathies as well and so I'm gonna try to supplement it more than from multivitamin.

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I visited every possible doctor you can imagine. It's just not efficient as their knowledge about vitamins is really poor. I've just joined support group for Vitamin B6 just like ArtSmarter recommended and people desribe there exactly the same pain in the same area. It all make sense because my pain increased after I change multivitamin with higher amount of Pyridoxine. This new knowledge I aquired today is really exciting.

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