cyano or hydroxo ????

[totallyFrustrated]

which is better? I have been S/I ing with hydroxy cobalamin for just over a month now, made some great progress, no more night sweats, no more itching, better sleep, better mood, more interest in doing some housework ( just not doing any yet LOL ) but when the first lot ran out, the second batch seemed not to work so well, felt worse in lots of respects, more pain, P+N, ataxia, etc, so I am wondering, did I get a bad batch? 100 of them, that would not be much fun. Or should I get some cyano as I know where to get some, or keep looking to see if I can get some methyl and give the hydroxy a rest in case it's a spoilt batch? What do those of you who are using different kinds to S/I experience on the different ones and which ones work best for you? I know that doesn't mean those will work better for me, but I really would like to hear about personal experience rather than what it says on the advertising published by the makers.

[Wwwdot]

Hi TotallyFrustrated

I have stuck with the same brand for over a year Pascoe Hydroxocobalamin 1000ug then 1500ug as that was all that was available.

My experience is that when it feels as if the Hydroxocobalamin is less effective it’s because my body is calling for more - it’s using it up more quickly - more healing and I am now more active.

My interpretation of what I have experienced is that when the body is B12 deficient the healing is not linear - as the healing improves, it speeds up and it needs more B12 more frequently.

I was on one injection every other day for around 6 months then the B12 benefit appeared to “wear off” more quickly

I increased to two injections a day for about three months, and then again the benefit appeared to wear off more quickly.

I increased to three injections a day and again the benefit wore off more quickly after a month.

I increased to 4 a day which I have been doing for about 2 months now with consistent results. So an injection every 4-5 hours seems optimal for my healing and activity level.

When I say “benefit” I mean free of symptoms - when my B12 wears off I get achy teeth and flu like symptoms.

Incidentally I missed my second injection today and when I got in my hubby remarked that I looked dreadful - I got in tune with my body and realised I had achy teeth and felt rubbish and realised I had missed my injection. I have now caught up and not only do I look better but I am functioning properly with no flu symptoms or achy teeth.

So I would ponder whether it’s a possibility that you need more B12 rather than the B12 not working?

All the very best and I hope you find your solution.

🤗🤗🤗

[WIZARD6787]

What Wwdot said. 100% concur.

As far as which form is best; I have found no evidence to support one over the other. There have been tests on retention and guesses made on how this might affect the patient.

Personally Hydroxocobalamin and Cynocabalamin and have been equivalent to me.

Methylcobalamin for me is the post powerful. I use the term powerful because although more effective in the long run it did cause healing which could be seen as side effects.

-Flashes in eyes.

-Blurry spots in eyes.

-Heart palpitations.

-Rapid breathing.

-Soft of runny stools.

-Anxiety.

-Headaches.

The experience was short lived and medical advice was not appropriate for me with my experiences.

With my current knowledge base I would have started with Methylcobalamin and gradually increased amounts. I would have started with the frequency of 4 to 6 hours and if I woke up in the night injected.

Many myself included have taken Methylcobalamin with Hydroxocobalamin. I do wonder if the positive effect is not the combination rather more and taking one injection in the morning and one at night. Which results in spacing out the injections and taking more B12.

Good on you for taking the initiative! 😃

[ren41 in reply to WIZARD6787]

but I suppose you can't get anything like that frequency from a GP? I have been on cyanocobalamin (Cytamen) for the last 15 years or so, after having an allergic reaction to hydroxycobalamin. I'm not sure, at the time, I noticed any difference between the two. I have previously tried to get the GP to increase my frequency from 3 weeks to 2, without success. More recently (& especially since having Covid in March), I do get symptoms more frequently and sooner after my injection. I do however also have hashimotos hypothyroidism so some symptoms could be due to that. Can you buy Cytamen, and if so how much is it?

[WIZARD6787 in reply to ren41]

I do not know what Cytamen is.

[ren41 in reply to WIZARD6787]

It's cyanocobalamin ampoules. It is the only available brand of cyanocobalamin in the UK, as far as I know.

[Wwwdot in reply to ren41]

Hi ren

You are doing well to get your GP to prescribe 1 injection every 2 weeks as mine isn’t interested in prescribing any for self injection.

There is I believe an association of low B12 and Covid. So worth topping up if you can.

I purchase all my B12 and associated paraphernalia myself.

It was thought I had an allergic reaction to Hydroxocobalamin when I had my loading doses but it was just extreme reversing symptoms which meant the B12 was vigorously getting to work! Maybe something to consider when evaluating and reflecting on your experience?

I can say with absolute certainty that I would not be as symptom free or as active as I am now if I was only on 1 injection every two weeks. My body has been B12 deficient for many years and by experimentation with the benefit of insight of others on this forum, I have realised it needs constant B12 to heal properly.

For the life of me I cannot understand the logic or methodology of weekly or monthly injections to address years of decline. It does not make sense. I can find no research evidence to support it. ( please guys jump in if there is some!)

I hope you find your way forward that brings more relief.

🤗🤗🤗

[ren41 in reply to Wwwdot]

It's every 3 weeks but cyanocobalamin is double the frequency of hydroxycobalamin so that's usual. I would like to get it down to 2 weeks. This week I feel absolutely wiped out; due to do injection on Monday. I think I'd been on hydroxycobalamin for about 6 years when I had the reaction; I still think it was something else but obviously not willing to test that theory!

[Wwwdot in reply to ren41]

Hi ren

Sorry to hear you are feeling wiped out snd I do hope the injection on Monday gets you back on track. Do you self inject or go to the surgery?

I hope you are able to rest over the weekend and pick up quickly on Monday.

🤗🤗🤗

[ren41 in reply to Wwwdot]

Hi Wwwdot, I have been self injecting since the pandemic started (and occasionally before that if I couldn't get an appointment). Unfortunately my job is 7/7 so no weekends off! One of the penalties of being self employed and especially one of the things I do now - I have a boarding cattery.

[Wwwdot in reply to ren41]

Hi ren

Yes cats need their feed! But what a lovely business to have! Have you considered increasing your B12 frequency and see if it gets rid of the wiped out feelings? I totally understand the feeling you describe and since injecting more frequently it’s a symptom that has lessened considerably.

🤗🤗🤗

[ren41 in reply to Wwwdot]

Hi Wwwdot, I would if it wasn't prescribed; I had a situation last year where I found I had an out of date box of ampoules; I took it back to the dispensary and got a replacement. Somewhere along the line they failed to tell the GP that it was a replacement and I was asked to do a blood test; I refused and finally had to send links - and print off and take in - all the info on the PAS website regarding not testing when medicated. 'My' GP (who I have never met) - clearly doesn't really understand autoimmune conditions and it was obvious from what the dispensary said that she thought I probably didn't need it any more, which if course she could have inferred from test results. At that time I discovered that they never requested my patient history from my previous practice (18 years ago now!) and refused to ask for it when I requested they did so. This practice is rated good and actually better than the other one which covers the area...

[ren41 in reply to ren41]

I noticce someone mentions folic acid in conjunction with B12 but I haven't had any since prior to being diagnosed. I think I'll buy some!

[Wwwdot in reply to ren41]

oh ren

Not only are you not receiving support you don’t seem to be receiving proper care and management either!

All the best and let’s hope things change for the better when the revised NICE guidelines in B12 are published

🤗🤗🤗

[Bellabab]

I find I have to increase my folic acid dose when I increased B12 - they work hand in hand - you can't have one without the other -as the old song goes. Trial and error again and I leave it at least two weeks before making any changes.

[qwertystar in reply to Bellabab]

How much folic acid and b12 are you taking.

[Bellabab in reply to qwertystar]

Just now 1mg EOD hydroxycobalamin & 5mg folic acid daily. Also folate from my diet and multivitamin. Hence it's almost impossible to be accurate exactly how much. Question of trial and error over many weeks. I strongly suspect fellow sufferers do not get enough folate and put up the B12 without raising the folate intake to match. Should always address the B12 first of course.

[Wwwdot in reply to Bellabab]

Hi Bellabab

I raised my folic acid level to top of the range as it was rock bottom a year ago. I now take 400 mg a day (standard dose) and get my levels checked periodically.

Good point you raise.

🤗🤗🤗