Pernicious Anaemia Society
14,259 members10,213 posts

Help. Just started trial of vit b12 cyanocobalamin

Hi, i have been unwell for the past year or so and was recently diagnosed with an inflammatory bowel disease. Apart from the gastro symptoms i have also had (amongst other things) chronic fatigue, achy muscles and a feeling of being weak alot of the time especially when just trying to perfom normal house hold tasks for example. 5 months ago pins and needles and numbness started in both feet,legs, hands, arms and neck it is constant 24/7 to various degrees. It reacts badly to heat and flares badly. For the past 6 years i have suffered with chronic dizziness/vertigo, brain fog etc. I was diagnosed with migraine associated vertigo.

Although my b12 total serum was 434 when last tested my gp this week has said maybe i have mal absorbtion of b12 and has prescribed injections to see if it helps with the fatigue,achiness, pins and needles etc.

I live in Spain, the active b12 test is not available to my knowledge and my gp didnt seem to be aware of active/inactive b12.

I found this forum last night and have been reading about the loading dose. I am just having injections once every 2 weeks, no loading dose.

So my questions are, how long does the injected b12 take to absorb and be used and how long does it stay in your system? Do you think my dosage level will have any impact at all?

Also, i will be going to London in December, i would have had 3 doses by then. Does anyone know a good private doctor that could help me? Would it be worth it me having the active b12 test done?

Is there anything else i should know

Thanks for listening and i hope to hear from you.

4 Replies

Everyone is different and the jabs we get in Britain are hydroxo but for me I can feel their effects within half an hour and get a peak in reaction about 2 hours after having them. This is always been the case for me. They used to last for days but now my system seems to process it / use it up very quickly and I need additional sublinguals to keep my levels up until I can inject again the next day. I am just just giving you one end of the spectrum: for other people the effects last for weeks and weeks.

I find the hydroxo jabs give me the best results and while this could be due to dosage levels I don't feel this is the case - I just think it's better for me.

I think the methyl has the next best curative properties for me, followed by the cyano, although I have only tried the latter two as sublinguals.

If you are in Spain I believe you can buy B12 OTC so you could self inject or get someone to give you the extra shots.

I'm sorry but I don't know any London clinics personally.

Good luck!

1 like

I have read that it is good to take a good B Complex containing either Folic Acid or Methylfolate when supplementing B12. B12 works in the body with the Folic Acid and enables it to remain in the body longer. Folic Acid is synthetic and Methylfolate is natural -so you may wish to research the benefits !

Have you had other tests done - like Folate - Iron - VitD ? You could possibly be low due to mal-absorption. Which IBD do you have - Colitis - Diverticulitis - Crohns ? - or is it IBS ? - which is a syndrome. Have you gone gluten free ?

Dr Sarah Myhill in her latest book - Sustainable Medicine - talks about Gut Fermentation - which is often referred to as SIBO - Small Intestinal Bacteria Overgrowth. She suggests 2-6000mg of VitC - to bowel tolerance - taken at night before sleep. Will also help with the absorption issues.

I currently take 2000mg. I was diagnosed with Crohns over 40 years ago - endless surgeries - and do not take any medication !

Do hope you soon feel better....


I don't know if you had the active B12 test done whether it would work as you have started having injections. Maybe someone more knowledgeable can help with that. My own experience has been it takes several months to really feel the benefit of the injections. It can be helpful to try the sprays or patches that can be bought over the counter or on the Internet. The sprays are nasal or sublingual. This helps to top-up your levels between injections. I would imagine that your bowel disease is the reason you aren't absorbing B12 from your food. The symptoms you describe are very typical of low B12. Have a look at the Pernicious Anaemia Society website, there is a symptom list on there that you can download and print out. The symptoms relate to all forms of B12 deficiency, not just PA. The founder of the Pernicious Anaemia Society has written some books that explain about it very well. His name is Martyn Hooper, he is also B12 deficient, and writes about his own experiences. Good luck with everything MariLiz

1 like

Thanks for all your comments. For the responder that asked about which IBD I have, it's microscopic colitis confirmed through biopsy, I haven't gone gluten free yet cos I haven't had the full available panel of celiac disease blood tests yet. Would have to go private it seems here in spain...

I'm still tossing up whether to have the active b12 test or not in uk in Dec. I guess I could consider not having my next 2 scheduled injections, that way I would only have had one on 29th Oct and I wouldn't have the active b12 test done until 6th Dec..... It only costs 18 pounds!!!

Does anyone have any thoughts on that?


You may also like...