Hydroxocobalamin and Cyanocobalamin

[Lincsangel1]

Good morning everybody ☺️

I have been self injecting daily...with pascoe hydroxocobalamin 1500mcg

I still get pins and needles..tingling

burning..numbness etc

2 days ago I decided to try Hevert 1mg cyanocobalamin

So yesterday and Thursday I injected cyanocobalamin

Thursday I felt pretty much the same.. but yesterday I had a lot more tingling... my hands.. tongue..lips.. head...

Not injected today yet.. I didn't sleep as well as I normally sleep last night.. my hands are tingling / pins and needles...

Any ideas why my symptoms appear to be worse?

[Nackapan]

Lower dose?Optimum healing not reached on higher dose?

[Lincsangel1 in reply to Nackapan]

I did think it may be because it's only 1mg compared to the 1.5mg But would that make so much difference over just 2 days do you think ?

Or could it be that cyanocobalamin doesn't work as well for me?

Or.... more severe reversing symptoms?

I'm unsure what to inject today

[lynxis in reply to Lincsangel1]

I do believe that 2 days of a 33% lower dose would definitely be noticeable for me, and 2 days is about the amount of time it takes my body to react to missing a dose or having a lower dose. I generally inject 1000 mcg daily but occasionally I miss a day or use a 500 mcg vial (which I bought when 1000 mcg vials weren't available). Neuropathy is far and away my main issue (after 3 years of daily injections) and is the reason I inject daily, and that symptom is, in my experience, very sensitive to decreases in dosage or missed injections. I use cyano for IM injections and hydroxy for SQ injections. I have also used methyl when available. For me it seems like consistency is the key more so than type of B12, but your mileage may vary. Hope you figure it out and get some relief soon. ❤️

[Lincsangel1 in reply to lynxis]

Thankyou 😀 I think it may well be the reduced dose that has caused a flare up of symptoms... I injected again with cyanocobalamin today... and the tingling has gotten even worse.. so it's back to hydroxocobalamin tomorrow..hopefully it will settle down

[lynxis in reply to Lincsangel1]

Even with consistent daily injections, my tingling and vibrating worsen with stress, illness, strenuous activity, and lack of sleep, so that is something to keep in mind, as well. 🙂

[Lincsangel1 in reply to lynxis]

It's been roughly about the same for the last few months..but has definitely felt worse today... along with my hands were shaking... I will go back to the hydroxocobalamin and see if there is any difference

[WorkingProgress in reply to lynxis]

Where do you get your 500 mcg vials from?

[lynxis in reply to WorkingProgress]

I was getting them from vitaminb12online.com, but they closed due to COVID. 😔 The list of places that ship to the US has really shrunk in the last 3 years.

[RisingOne in reply to lynxis]

There is a place in the UK, that ships to the USA, oxfordbiosciences.com/, they offer powdered B12 methylcobalim.

Hope this info helps.

[lynxis in reply to RisingOne]

Thanks! Have you tried this? I feel nervous about mixing my own sterile injections.

[RisingOne in reply to lynxis]

At this time I have not used will use when I run out of my ampoules, Powder lasts much longer.

[Nackapan in reply to Lincsangel1]

I woujd decide a regime and stick with it for a few months .Keep a log..

[Lincsangel1 in reply to Nackapan]

I have been on injections for about a year...daily for around 9 months... I was still having neurological symptoms so wanted to try cyanocobalamin to see if any better

[Nackapan in reply to Lincsangel1]

It took a long time for me to start healing .I got alot worse before improvements.

Keep going.

It will happen.

I'm 4 years in and still making slow progress

I keep a diary

Subtle changes hard to recognise until a blip abd horrid reminder of things past

[Lincsangel1 in reply to Nackapan]

It's awful isn't it... I knew from the beginning it was going to be a long slow process.. but I'm so fed up of constantly feeling so awful

[Nackapan in reply to Lincsangel1]

Yes. Difficult to stay positive at times. Then an okayish day comes.

Nothing compared to the 'old self' yet.

[deniseinmilden in reply to Lincsangel1]

Could be either, or both: it would have that effect on me!

[palmier]

You lose more of the cyano form. Hydroxy is retained better.

[Lincsangel1 in reply to palmier]

Yes... I know that cyanocobalamin is only in the body for around 24 hours compared to around 48 for hydroxocobalamin.. but I didn't expect to notice such a difference I've injected cyanocobalamin again today.. so for 3 days now...

I have tingling and burning that's more noticeable than usual

I'm just not sure what to make of it

[Dilly_blue]

Slightly off at a tangent, but I have noticed a difference in result with different types of B12 injections. I have a functional b12 deficiency (MMA levels that remain high despite treatment) and also an autoimmune B12 deficiency (GPC ab and gastritis). I am now self-injecting, but last summer I wasn’t, and needed to top up the injections that I was getting from GP (every 3 months). I booked into two different beauty clinics to pay for injections over a few weeks, and I found that following injections at one of the clinics I had more energy but still had the symptoms (tingling legs and episodic weakness in hands), compared to injections from the GP, which improved energy and reduced / got rid of the symptoms. I found out after my second beauty clinic appt that it was methylcobalamin. So I think I respond better to hydroxocobalamin. I have understood from other posts that hydroxocobalamin converts to both methylcobalamin and adenosylcobalamin in the body which are both required for slightly different processes (sorry of o have got this wrong!). From my experience with the methylcobalamin it led me to think that maybe the functional deficiency that I have is perhaps associated with the adenosylcobalamin side of things - which methylcobalamin wouldn’t address…

I may be completely wrong though!

[MrsTuft in reply to Dilly_blue]

That is my understanding too.

[DiNL]

I have read that many people in holland had to change brands of hydro because of supply problems. Many reported that some of their symptoms returned when the Lu changed brands. I am new to all this and use Pascoe myself. But I thought I would let you know that many people on the Dutch groups reported a slight worsening when they changed brands and most of them settled down…

[Hedgehog235 in reply to DiNL]

hi, I was wondering if you could post a link to the Dutch groups where these conversations are happening? Just switched to Pascoe from rotexmedica/panpharma today and panicking as it doesn’t feel like it’s working

[DiNL in reply to Hedgehog235]

They are Facebook groups but all the communication is in Dutch.

[Lincsangel1 in reply to Hedgehog235]

I switched to pascoe from panpharma about 6 months ago... it works just the same..if not a little better.. Most people are now using pascoe

[WIZARD6787]

My experience is any reduction in B12 has been a definitive negative within 5 days and it takes 3 weeks for me to get back to where I was when I started the decrease.

Any increase is positive in about 10 days. The first few days I am more tired but not more fatigued as I sleep and am less tired. Then for about 6 days I experience more intense peripheral nephropathy including sporadic lightning flashes of pain. Then I know for sure the increase is positive. Currently administering B12 four times a day. .50 mg SC or 2 mg SL.

[Nackapan in reply to WIZARD6787]

Out of interest do you only inject half of a 1mg /1ml b12 ampoule to achieve this.

Good if you can absorb sublingual b12.

Small frequent doses maybe used more efficiently??

[WIZARD6787 in reply to Nackapan]

Hey Nackapan,

I am penning a reply to your reply. It will be in the form of a post. My Current Regiment of Administering B12.

[am111]

I have tried both and here is my experience. Both Hydroxocobalamin and Methylcobalamin are habit-forming, in that both require a regular injection and any reduction in the dose/frequency leads to very bad symptoms for me. Also, the serum B12 numbers go way beyond 2000 (upto 6000 or so) and it is not good. On Cyanocobalamin injections, I could get off them after some time. I think the body does not like very frequent injections. Better to be off them and on monthly cyanocobalamin injections and let the body heal. On cyanocobalamin injections, my serum B12 also came down to 1600 which is closer to normal, so I think cyanocobalamin is better (Research shows that very high serum B12 is related to antibodies to transcobalamin, so I guess both Hydroxocobalamin and Methylcobalamin lead to this and hence, not good).

[B12life]

I have needed daily cyano injections since I was diagnosed over 2 years ago. If I space them out, my symptoms come back. It will be a good year before I try and space them out again. I use the Hervert and inject 2mg daily. I have been using this for ~5 months now.