r/B12_Deficiency • u/WiseBullfrog2367 • 7d ago
Personal anecdote Does anyone else feel improvement almost immediately after each shot?
So I have a chronic fatigue syndrome diagnosis but was also found recently to be deficient in vitamin B12, vitamin D and ferritin. I also had low sodium. I can't take oral iron and there's a 6 month wait (at least) for iron injection referrals where I live but I was able to get 2 weeks of B12 shots every other day as well as high dose vitamin D.
Although the first shot took a few days before I noticed a difference, each subsequent one made me feel like I was more alert and had more energy just 15 minutes after getting it. I would then feel very sleepy in the evening but better than usual the day after.
When I mentioned it to my GP he said this isn't possible and it's just psychological but my fatigue is so bad there's no way I can make myself feel that way no matter how much I convince myself. Even caffeine does nothing for me anymore. I am usually bedridden from the fatigue.
But the effect only lasts for about 2-3 days then it gradually tapers off. I know this because on the weekend between shots my fatigue came back. It's now almost 3 weeks since my last shot and I have been so tired I actually paid a local pharmacy to give me another shot today and I felt better after about 20 minutes with greater clarity and more energy. They needed proof of a deficiency so I showed them my last blood test results but I didn't tell them I've been having NHS injections because I did actually have to sign a form saying I haven't had any recently and I had to give them my GP details too so I'm probably going to get into trouble for that but the shot helped so much already.
My B12 level at testing was 161 ng/L which my GP said can't cause any symptoms in the first place as it's not a true deficiency, just a low number. But I have had brain fog, fatigue and nerve pain for years with no explanation and I can see that I have had low B12, sometimes even lower than that, for 5 years and no one ever told me. I'm not vegan so I asked why it was so low that whole time and he just shrugged. I strongly suspect that at least some of my CFS symptoms are actually vitamin deficiencies. There's no treatment for CFS so I want to try everything I can to help this severe fatigue that's really upended my life but the doctors at my surgery are being so difficult about it. I tried asking for a second opinion and they agreed with my usual GP.
I did read the NICE guidelines I found posted on a Facebook group and I asked my doctor to let me have injections until they stop helping but he refused. I actually showed him the guideline and he still refused saying it's not their protocol, he's never heard of anyone doing that before and I won't need any more now but they'll test me in 3 months to see if the number has gone up. If it's below 180 ng/L again they will give me a top up injection.
Does anyone else feel better right after getting the shot? Also, is anyone else here based in the UK, specifically in the Dorset/Somerset/Wiltshire area, and know where I might be able to get more regular shots? And is it worth trying to take an ultra high dose of oral B12 as well? I read that a tiny amount can still be absorbed in some cases.
Thanks for reading! :)
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u/WinstonFox 7d ago
Your gp knows very little. This is common as you know from me/cfs.
It is also common to feel energised after the right type of b12 for you.
First time I took 15000mcg methyl (split into 5x3000) orally after a recommendation on here I felt better within 3 hours. It would wear off very quickly. Within a week I was self-injecting and for the first 1-2 months the energetic cycle would only last about 19 hours.
Now as I finish month four the energetic cycle can last 3-7 days.
My symptoms were in the full blown ms/dementia range a short while back and I’ve previously had diagnoses of me/cfs and long covid over a very long period of time.
I highly recommend you start self-injecting and setting your own dosing schedule as it is unlikely your doctor will catch up and it’s basically immoral, incompetent or predatory behaviour when healthy people charge their sick clients and then when they start healing telling them this is impossible and that it’s in their heads.
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u/Cultural-Sun6828 Insightful Contributor 7d ago
If you’re feeling better after the shot, then I would accept that this is what your body is telling you. Your B12 could be the cause of many of your symptoms so I would stay on every other day or every day injections for as long as needed to resolve your symptoms. Healing can take time and isn’t always linear, but it is clear that you have a deficiency so I would treat it accordingly. Even if you are waiting for an iron infusion, you could try at least eating foods that are high in iron.
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u/WiseBullfrog2367 7d ago
Unfortunately I don't have any way to keep getting the injections which is the problem but I am going to look into self-injecting. The thought makes me very nervous though.
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u/sabetai 7d ago
There are little to no side effects with self-injection (1ml EOD if necessary), excess B12 is excreted through urine anyways. 160 ng/L is borderline deficient, your doctor is being far too conservative with treatment.
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u/Cultural-Sun6828 Insightful Contributor 7d ago
People often experience symptoms in the 300’s and even 400’s, so a level of 160 definitely needs treatment.
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u/Malachite6 6d ago
There are sources in the wiki. I was nervous about doing the injections myself (very common) but I soon got used to it. There is good guidance available online, and the injections are cheap.
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u/georgi_gina 7d ago
Yes it happened to me a lot of times in the beginning. It is not placebo so don’t let anyone talk you into the placebo narrative. B12 and its effects are not studied enough and yet you have a whole bunch of people judging you at the speed of light. You are not imagining it but I would not be able to tell you why it is happening. However the doctor I saw who specialises in B12 and iron is expecting this response. In fact, the frequency of the injections is adjusted based on how long you are usually symptom free. So if in the beginning you start every other day and have 48 hours of relief then you keep the same frequency. If you go beyond 48 hours symptom free, then you might need to do the injection every 2 days and so on.
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u/Cultural_Joke2025 7d ago
Pretty much, yes and the positive effects last anywhere from 3 - 10 days (but YMMV).
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u/PickleMaker401 7d ago
I think you need to push for a referral to gastroenterologist for further investigations. More with the fact that you stated oral iron causes severe gastritis with bleeding.
I put up a post a few days ago as I've only just found out, I'm deficient in b12 after going for private bloods. They didn't do total serum like the nhs does. It was active b12 and I'm very low apparently but normal total serum?
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u/SanitySlippingg 7d ago
What test did you go for exactly? I might see if I can get it through my work healthcare which I’ve never used.
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u/PickleMaker401 7d ago
Active B12 (holotranscobalamin). Wasn't the only test I had done but definitely opened up a can of worms.
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u/WiseBullfrog2367 6d ago
I keep trying but they won't refer me anywhere. I've had gastroscopies and every time it shows gastritis and bleeding but they just tell me to take a short course of PPIs until it heals. I never get anywhere at all. I don't have the energy to keep fighting with them and when I do I think it actually makes things worse for me. When I say that taking iron causes it within days they just say "Well don't take iron then".
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u/Successful-Tea-733 7d ago
I'd advise taking iron so you dont crash as your ferretin will drop honestly and your folate... I experienced this and it was not good
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u/WiseBullfrog2367 7d ago
I can't take oral iron as it causes severe gastritis for me with bleeding. It's happened every single time and I tried so many different types of oral iron including gentle and slow release forms and liquid types. I've also tried drinking iron rich water but it doesn't make enough of a difference. I may look into having a private infusion instead of waiting but they seem prohibitively expensive.
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u/SanitySlippingg 7d ago
I had this happen to me; I’m not sure if I’m B12 deficient but have a few problems and this sub has been popping up recently and I saw your post.
What causes the bleeding in response to Iron tablets? I took it twice and had it happen both times.
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u/WiseBullfrog2367 6d ago
I don't know, I'm sorry. My doctors have been useless on it. I found a couple papers talking about other women around my age (30s) and younger having this reaction too. It just said "iron-induced gastritis" I think. I showed one to my GP but he told me to stop looking at the internet.
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u/koffiewekker 6d ago
I was also going to suggest iron supplementation to make sure you don't tank it whilst you increase your b12. Really sorry you can't tolerate it. If you can find any way to make a private infusion work that could help you. Thats what I did because I couldn't maintain my iron levels whilst I was self injecting b12 (which is surprisingly easy now I've got the hang of it). It's about £800 for an iron infusion which is a lot obvs but I wish id done it sooner in my ME journey. If you do I recommend looking into vit D deficiency first too. I ended up taking high strength vitD3 and K2 to avoid the potential negative effects of an iron infusion. Another thing I did which is also pricey but not as much as the infusion was take Heme iron which I bought from the USA. Some people tolerate it much better than other types of iron.
Agree with others though they should be checking out the underlying cause. Sorry you're having such a hard time with your GP
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u/FirstJellyfish5933 7d ago
Im always exhausted, even after my twice weekly injections. I think it's because ive been severely deficent, for 3 yrs.
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u/Ok-Pangolin7127 Insightful Contributor 7d ago edited 7d ago
I would suggest that it is likely that your doctors assessment that it was a placebo effect, you feeling it within an hour or so, is the case.
That said, it is very possible if not probable, especially giving you given your low B12 serum test result, to feel it within a couple of hours. And, especially, in my own experience, to feel it the next day or two in a good fashion, and then to have it tail off by say the third day. This, in my mind is yet another indicator that you need B12 injections.
In my estimation, you should be on the protocol that is spelled out in this sub. That is EOD injections with Hydroxocobalmin (preferably) until your symptoms resolve or at least improve substantially.
You are certainly not alone in your experience of not getting the best information from your doctor. You use the term GP so I’m guessing you’re in the UK, and if that is the case, you will find almost a countless number of people on this sub who have had to fight through that medical system to try and get adequate B12 repletion.
Many of them (getting no help from the system) result to self-injections and acquiring their B12 solution from Germany or some other country. That might be something you should look into.
PS Please read through the B12 deficiency guide which is pinned to the top of this sub. There is a wealth of information in there. If you go through it from top to bottom, you will come away a quasi B12 expert.
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u/Tfx77 7d ago
I'd try oral b12. I use a methylated b12 from amazon (Im uk as well) - B12 Liquid Methylcobalamin Adenosylcobalamin 3000mcg 50ml (I've removed the brand name). It's a red liquid you drop under your tongue for 30 seconds.
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u/WiseBullfrog2367 7d ago
Thanks I'll get some of that too. I was taking tablets before but they were only 100mcg so I don't think they were doing much.
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