Pernicious Anaemia Society

Really don't know what to do about B12

Hi

I was diagnosed in 2011 after years of symptoms getting progressively worse with no explanation. My B12 level was 154 and I felt horrible. I didn't test positive for intrinsic factor antibody, they found no cause for my B12 deficiency. I had loading doses (6 injections over 2 weeks) and felt SO much better for about 3 months. They gave me my 3 monthly injection which did next to nothing, and then took me off injections telling me I didn't have PA, didn't need them, despite the fact my symptoms were back with a vengeance (dizziness, extreme tiredness, memory problems, skin drying out, pins and needles in hands and feet - like a burning sensation, feeling extremely restless, breathlessness, heart palpitations, no sex drive, sore lips, sore tongue - felt like lips were burning, pale, hair falling out in shower, extremely dry skin especially my hands, what felt like a permanant water infection, bloating, IBS like symptoms, racing mind, depression, anxiety and problems with my speech) was told there was nothing wrong with me and that I probably had stress/anxiety or migraines/chronic fatigue, nothing to do with B12. As I knew B12 was the only thing that had ever made me feel better (and believe me it cured every single symptom) and that other people had had the same problems with diagnosis and treatment I read up on it through the PA society and learned to self inject. I bought B12 from Goldpharma and although I was really scared about doing this I was desperate to feel better. I began to self inject every other day until I felt better and within days, the magic happened and I felt really good again, just like I did when I had loading doses. I continued to self inject regularly when I felt I needed it for the next 3 years. Then in Feb 2015 I began to feel unwell again, head pressure, feeling faint, burning sensations in hands and feet and dry skin, salty taste in mouth, I really started to feel like I was dying and I'm not exaggerating. I had no idea what was wrong, but was advised to stop injecting B12. So I did and within a month I felt SO much better. I realised I had probably been overdoing it on the B12 injections and really taxing my body. I felt well for six months, and then in October when my PA symptoms returned I gave myself loading doses....instead of feeling better, I had side effects, weakness, head pressure, problems with balance, they lasted a couple of weeks and then gave way to another six months of feeling good. I had loading doses again when it wore off and felt awful, so had a few more injections and again, another 3 months of feeling good, so I tried to self inject every month, but it wasn't enough. I just had side effects and feeling faint every time I had an injection and it wasn't enough B12 to make me well. I was despondent. I had loading doses again in January this year and felt amazing for over 4 months, then in May, my symptoms returned but when I tried the injections again, I felt horrible, really really unwell. So I stopped, and have recently had another six months of feeling good. My symptoms returned recently and so had more injections but have heart palpitations, head pressure, feeling faint. I can't go on like this. What am I doing wrong. I'm left to deal with this on my own, as my GP won't give me injections or refer me to a haematologist. I'm treated like a junkie if I admit to self injecting and I get zero support from my family who think it's all in my mind. Any help would be appreciated I'm completely on my own with this and it's affected jobs, relationships and everything else in my life in a really big way. Sorry for the long post.

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Do you do loading doses each time you find the symptoms returning?

Some people do find that an injection leaves them feeling wiped out for a while afterwards - so if you are doing it as loading doses each time then that you are probably in that 'reaction' phase each time and that is why you feel awful. If you just did one injection then you might feel a bit wiped out for a day or so but then you would feel better for a while until the next injection.

It could also be that you are one of those people for whom high dose oral might work well as a way of maintaining their levels. Have you tried high dose oral tablets at all?

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Thanks Gambit....You know, you are probably right, as I do seem to keep going through the same cycle every few months, over the last couple of years. The main reason being is that one injection just never seems to be enough to make me feel better. Should I just inject one injection when I feel I need it, then leave it a couple of days to see if I need any more and sort of, do it like that? I'm now at a point where I don't know if my symptoms are PA or B12 side effects, so I don't know if I need more B12 or if I need to leave it for a bit....This is why I'm in such a mess, because I can't get any help through my GP as I didn't test positive for intrinsic factor antibody, my B12 levels are sky high (only because of self injecting) and they think I don't need it....honestly they act like I'm a junkie or just a nutcase when I mention my B12, but I know that it's the only thing that cures my symptoms and that after a few months without it my symptoms return every time. Low B12 was also the only thing they ever found wrong with me after years of being unwell with no explanation.

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Hayley, would suggest that you a) keep a good diary of all symptoms

b) if you want to continue with injections then try leaving it at least a few days - may be even a week before contemplating another one - just to give you an idea of how long it is taking you to recover from each injection.

c) try a high dose sublingual (tablet/spray - or a nasal spray and see how that goes. It may be that you can get enough from that to just keep your levels where they need to be rather than being on the big dipper ride you are on at the moment.

However, at the end of the day it is always possible that there may be something else going on as B12 symptoms overlap with a number of other conditions.

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Are you making sure that you have enough folate/ folic acid ( either plenty of green leafy vegetables or folic acid tablets ? ) B12 needs to work together with folate /folic acid (B9) . Also it’s good to take a vitamin and mineral supplement . PA patients have low/no stomach acid which upsets the stomach flora and can cause tummy pain , bloating, nausea , and poor absorption of nutrients . This is caused by the antibodies in PA patients attacking the parietal cells which supply Intrinsic Factor and also stomach acid . A good probiotic can help with this ( organic raw sauerkraut , homemade or from health food shop . ) Drinking diluted organic apple cider vinegar can also help . In bad cases hydrochloridic acid capsules with pepsin can be taken before protein meals . It’s important to pay attention to a good diet .

Just because your test for Intrinsic Factor was negative does not mean that you don’t have PA . It is a notoriously unreliable and inaccurate test . GPs should know this but don’t . Symptoms should be treated , not blood tests .

There is no test for stomach acid which is terrible as stomach acid is very important for our health . But a gastroenterologist gave me the info about low/ no stomach acid in PA patients .

As autoimmune conditions like PA seldom come alone. You should be aware that you could also have another autoimmune condition . Thyroid problems often come with PA . I have Rheumatoid Artritis with PA. For example .

I do feel for you having no medical or family support . I also got no medical /family help at all . I had to go to a private doctor for diagnosis . And self inject to keep well . I wish you all the best .

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Thanks Wedgewood, that makes sense. I will look into what I can do to increase stomach acid. When I'm not well I also get really bad stomach bloating, so looks like there is a link there. How often do you self inject?

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I inject once a week . Have done for over 2 years . The worst of my symptoms have gone .Just left with burning feet , which I assume will never go away now . If you ever want to self- inject you can get all the info. you need from this forum . It’s honestly the cheapest way to get B12 into your system .

Yes there is a definite link with stomach bloating and low/no stomach acid . The contents of your stomach just ferment instead of being digested and absorbed . Gas results and with it , bloating which can become painful . For a quick help try SYMPROVE probiotic . Horribly expensive , but effective .It’s said that organic raw sauerkraut. is even better , but is an acquired taste . Best of luck in everything . Do not despair .

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Thanks Wedgewood. I do self inject, just not sure how often I need to do it. I get mine from Goldpharma.

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Hi, I am experiencing a lot of yo-yo symptoms similar to yours although I have only been diagnosed since March this year (privately) and doing SI since April. The numbness in my toes has greatly reduced but I am still having intermittent problems with foggy brain, fatigue, irritability etc which change almost overnight. Anyway to cut a long story short I came across the following link on Dr Sarah Myhill's website a couple of days ago regarding hypoglycaemia and was quite taken aback when I read the symptoms (towards the bottom).

As the gut has been dubbed our 'second brain' I am now going to put some of her suggestions into practice and see if this is the missing link for me. I also have Hashimoto's.

drmyhill.co.uk/wiki/Hypogly...

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Thank you

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Dr Myhill’s site is a mine of information .

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Did you know that B12 injections are available from Blue Horizons now?

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injections or tests?

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notice this post on TUK

healthunlocked.com/thyroidu...

What is being offered is a home-visit service to provide injections. The cost for a single treatment is about 100 x the cost of sourcing for self injection so rather on the pricey side.

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Has anyone else got any more advice....I'm scared to have B12 and scared not to....I have six months at a stretch when I feel really well....then this happens again, and I'm really scared of my pottasium dropping.

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Surely it shouldn't be this complicated or difficult to treat, the idea is to load up and have a maintenance dose isn't it...I just don't know how long to load up for or how often that maintenance dose should be or how to work it out....I really am in a state over this, I need to be well so I can live my life!!! Any advice would be appreciated.

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