I diviculutis (diagnosis November 2022) and in March 2023 was told that I have B12 malabsorption after a blood test due to this
I have been having B12 injections every 12 weeks since then.
I have also been diagnosed with coeliac disease a few months ago.
My problem is around 3 weeks before the injection is due my energy levels drop and in the last two weeks I feel absolutely exhausted and it takes a few days to feel better after the injection .
I have asked my GP if I can my B12 levels retested and was told no as it's a malabsorption issue. I have asked if I can have the injections more frequently than the 12 weeks and met with resistance. In desperation I started taking multivitamins including B12 but wonder if there is any benefit of this as they might not be absorbed.
I have an appointment with the GP practice next week and was wondering if anyone else on the group has similar issues or have their injections more frequently than the 12 weeks.
Any advice gratefully received
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Welshtoffee
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Strong b12 tablets may work. A multivitamin typically has just 2.4 or 3 mcg of b12 which is probably too weak with an absorption problem. But b12 is also sold as tablets with 1 mg or more of b12, and these may work even with an absorption problem. As Nackapan said, only around 1 % is absorbed, which I suppose is why they have to make them so strong.
The sublingual B12 1000mcg worked for me for awhile. It is available over the counter in Canada. It sounds like you need injections more often. You might need to resort to self-injecting like many of us. I find it much more convenient for my husband to give me injections than to take a trip to the doctor. It gives me the latitude to experiment to see how often I need them. Three weeks is too far apart at the moment for me.
My experience with oral B12 was that it showed up in my lab tests, but did nothing for my energy levels-exhaustion and numbness in fingers and toes. Finally, I stopped taking them when the bottle ran out ( and, for the record, I always purchased a rather expensive sublingual methylcobalamin) I didn’t reorder. I felt my usual exhaustion and the next blood test showed that I was extremely low in B12. I was given an injection and began to feel the results days later so I never made the connection that the difference was the injection. I resumed oral supplementation for years after that, still feeling awful and went to my every-other-month appointment with a Functional Medicine Doctor who told me to cut the oral B12 I was taking in half because my blood level was over 2000. Concurrently my Mean Corpuscular Volume (the size of my red blood cells-indicating megaloblastic anemia) was 107 (100 being the highest). I asked him why that was and he said he didn’t know. What saved me was a friend gave me one of her B12 shots and told me that it took about four days for her to feel the results. THAT info was critical for me. In four days I had energy to go all day, but three days later I was on the couch again. I told that doc what was going on and he prescribed what I needed ( three injections per week), I was paying out-of-pocket to go to him, so when I found this site and was able to procure my own supply, I dumped him. I tell you this not to discourage you from taking oral meds, but only to be aware that if you continue to have symptoms -be aware that this scenario is possible.
"I have asked if I can have the injections more frequently than the 12 weeks and met with resistance. "
Apologies for quick reply as about to go out.
Search online for this UK document
"NICE CKS B12 and Folate deficiency".
Look in section on Management which outlines treatment patterns.
If you have neuro symptoms eg tingling, pins and needles, tinnitus, balance problems, muscle twitching, eyelid flickering, memory problems, brainfog, tremors and jerks etc (there are many other possible neuro symptoms) my understanding is you should be on this pattern
A B12 loading injection every other day until symptoms stop improving then an injection every two months.
You could look for the local B12 deficiency guideline used by your ICB (Integrated Care Board) in England or Health Board in Wales/Scotland and compare it with NICE CKS document I mentioned above.
Try an online search for "(name of ICB/Health Board) b12 deficiency guidelines" or "(name of ICB/Health Board B12 deficiency treatment algorithm)" or search forum posts here. If still no luck finding them, try submitting a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines they are using and for a link to or copy of them.
NICE (National Institute of Health and Care Excellence) are developing a new B12 deficiency guideline to be published in March 2024. Search for "NICE draft B12 deficiency guideline" if you want to see what they are working on.
If you have spare time, this document is also worth a look.
I had all the same symptoms but celiac test were neg. . . . . . I cannot digest dairy and the inflammation was noted when I had the camera job . . . . I ran out of energy at 5 1/2 weeks but other symptoms dont take near as long so I had to "sort myself out" . . . . . Here many get their B12 shots every month but at the minimal expense I stick to 3 months . . . . . My Docs are excellant and have a load of people diagnosed with B12 problems so they have enough jabs to perform. . . . .. . . . . Near to every complaint I have seems to revolve around inflammation. . . . Digestion, chest are the worst . . . . . If I avoid dairy not only does my tummy settle but it has an effect on my chest. . . . . . I recently attended a chest clinic and spent from 12 miday to half six and have 80% lung cap which I was told is good for my past and def not an indication of COPD and the only conclusion to the endless chest infections was post nasal drip which is often caused by more inflammation. . . . I have been given a nasal spray which I feel helps with the drip thing. . . . . . Drip i think is an awful name and it is nothing like a drip. . . . . . I have just managed over a month with no antibiotics and that is strange, . . . . . . . .I take various supplements especially D3 but I do hit the Bs pretty steady and right or wrongly I think they are helping overall . . . . . I started B12 either 3 or 4 years ago. . . . . I also other B's but I am not ready to comment on all that just yet . . . . . anyhow . . . . Vit B defiency is I think another autoimmune disorder and causes inflammation. . . . Inflammation is responsible for many ailments . . . . . . I am not doubting your doctors but consider carefully your whole story and look everything up because many GP's lack and understanding. . . . . . . . . That ended up a bit of a rant but I hope it helps someone. . . . . .
I would love to be more positive but, in my own experience they will not give me B12 injections unless it has been 12 weeks. The fact I am unable to function does not make any difference. I also have diverticular disease, pins and needles in my legs, hands and head, a lot of numbness in different parts of my body. This has been going on for some years (30+) and, I have finally got an appointment with a neurologist. I will admit that over the years I have adapted to being out of action at times, now I have retired I just kind of get on with it.
Thank you all for your advice . Had an appointment today and despite feeling exhausted dizzy and having some pins and needles in my hand. (NHS website says 2_3months with malabsorption issues.) . I was told they cannot go against local NHS guidance and got to wait for three months for my B12 jab.What can I do or take to help?. I am awaiting an appointment since August to see a gastro Dr at the hospital. Can they override it?
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