Extremely Concerned About Low Pottasium and B12

I was diagnosed with a B12 deficiency in 2011 after symptoms (dizziness, brain fog, sore tongue, sore lips, speech problems, extreme tiredness, feeling restless and lethargic, extremely dry skin, pins and needles in hands and feet, dizziness, memory problems, difficulty thinking and speaking properly) getting progressively worse for about a year. I also had symptoms prior to that, and never had a diagnosis they put it down to anxiety or chronic fatigue. I also had recurring water infections and stomach related symptoms. I didn't test positively for intrinsic factor anti-body, just the deficiency. I had B12 loading doses, folic acid, iron and vitamin D and within two weeks, I went from feeling really unwell to feeling amazing. This lasted almost right up until my first three monthly injection, which didn't last long and pretty soon I was back to square one. My GP took me off the injections as my levels were high, so they said it couldn't be that....but my symptoms were the same as before (so frustrating!). I took things into my own hands and started self injecting, again within a week or so I felt better. I continues to inject B12 regularly for about 3 years with no problems, and felt well most of the time. I thought the problem was solved. Believe me I didn't take this lightly, I'm the sort of person who is scared to take an aspirin....but I was desperate to get better. However in Feb 2015, I began to get other symptoms...head pressure, muscle weakness, slurred speech, feeling faint, heart palpitations....this was MUCH worse than having B12 deficiency. I put it down to the injections and stopped having them. Then I heard that B12 injections can cause pottasium levels to drop, and was scared that this is what had happened to me (terrified if I'm honest), so I stopped injecting. After about a month, these symptoms subsided and I felt well for six months....I was hoping that I didn't need them anymore! My GP said my blood levels were fine (for everything....B12, pottasium, iron, folate etc). I was low in D3 but I do now take vitamin D. In October 2015 my B12 deficiency symptoms came back, so I gave myself loading doses, but the low pottasium symptoms came back (this is what I think they are)....then wore off and I was well again for another 5 or 6 months. Did it again in May last year, and still didn't feel good....just carried on feeling really rubbish....so had B12 again in June and was well for about 3 months. Then October after just one injection I actually fainted a couple of times not long after I had it, I tried to take pottasium supplements, and stopped the B12 but realised that pottasium overload can be really dangerous as well so I stopped that. I found that if I had an injection I felt faint and horrible afterwards and had head pressure. In January I tried spacing the injections out every few days, and making sure I was drinking coconut water, 2-3 bananas a day and taking folic acid.....I felt well around December, Jan, Feb and March. However after having injections in Apr, I felt worse again....and now I just don't know what to do....I'm not having clear answers from the GP....I feel all over the place with it....I want to get well, but I want to be safe and do it under proper medical supervision. It is affecting every aspect of my life, my job (really badly...cos I'm dragging myself into work despite being really unwell), I make mistakes, get stressed and have withdrawn into myself quite a lot (cos I just feel really ill) I no longer drive, I avoid going too far away from home, I ended a long term relationship about 3 years ago (not because of this), but since then I've found that I push potential relationships away because of how I'm feeling, and when I don't feel up to going out and stuff. It's seriously impacting on my life. I'm now in my 30's and haven't had kids yet...and feel that even if I was in the right relationship it wouldn't be a possibility as it would be too dangerous cos of my blood levels....I'm at a complete loss as to what to do....I'm now terrified to have B12, but can't not have it either....I know that NHS protocol will deem that I only need them once every 3 months if at all...and I know I don't cope on that. I feel I need to see a haematologist but from what I've read, feel sure they would only tell me the same. This low pottasium thing scares the hell out of me cos I've heard it can be life threatening (although my GP says my pottasium levels are normal)....They are also looking into the stomach thing for things like ulcerative colitis, Chron's or coeliac.....I'm in an absolute mess with this and have no idea what to do to get better. Please help.

22 Replies

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  • Oh and I'm also getting frequent migraines (I had them a lot when I was about 11 but they disappeared and after that I only had them once in a blue moon) but now I'm getting them a lot.

  • Hi Haley, this makes me wonder if you started getting your period early around age 11 and perhaps migraines stopped because you were releasing excess iron or metals or estrogen balance was better?

  • I think you're right. It was the year leading up to me starting my periods that I started to get migraines, and not long after I started them, the migraines stopped. I started getting them again, about a year ago, and it always seems to be around the time of my period either before or after. Just wondering...is that significant to my B12 issues, as I've noticed when I'm on regular B12 and feeling well from my PA symptoms I don't get them?

  • B12 can lower potassium levels, but only for a short while and only if you had magaloblastyc anaemia.

    When the body has been deficient in B12 it can't make red blood cells properly, When the B12 levels get back up the body goes on a burst of red cell formation. This formation requires potassium - so the burst causes levels to drop.

    Once the burst is over red cell formation goes back to normal, as does potassium requirements.

  • Thanks....that makes a lot of sense....especially as I feel the problems have started since I've been on it and off itbut what should I do about it though?

  • I've just realised, the side effects started after I'd stopped bothering with folic acid, as at the time I didn't think I needed it....I was at the point where I felt well on injections, didn't question it, then wham, side effects.....could that be why? Also it makes sense as the problems only started since I've been on it and off it like a yoyo....However my GP said my pottasium levels are normal....Could I have depleted it so much (from keep going through that initial pottasium drop) that it is now dangerous for me to inject?

  • I don't have anything to add to response on your previous post

    healthunlocked.com/pasoc/po...

    beyond echoing what Eaoz has said - that lowering of potassium is a potential problem in some rather specific circumstances, ie when starting loading doses whilst you have megaloblastic/macrocytic anaemia (larger rounder red blood cells than normal)

  • Thanks....I have been told my blood cells are a normal size....I've also been told I'm slightly low in folate (but I take folic acid every day!)

  • Could the fact I'm having side effects be because I'm low in folate?

  • Have you continued to monitor your Folate levels whilst injecting the B12?

    There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance. Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body.

  • I take folic acid as well

  • I have just come back from my GP, and I'm getting nowhere....I don't take time time off work, I drag myself in, sometimes feeling at death's door, however this has prompted questions about me not looking or seeming well, and also because it has caused me to make errors at work when I've not been well....and they keep insisting that I go back to my GP for a proper diagnosis and to be referred to a haematologist. I feel that they want me to give clear answers that I don't have....I think they are concerned that my health is impacting on my job and on them....I was also under investigation for possible ulcerative colitis recently, and of course I want all of this pieced together so that I know what I'm dealing with and what to do. My main reason for going today, was more to appease work really if I'm honest...because in all honesty I've been through all this before with blood tests, no conclusive results, no clear answers, which is why I've resorted to doing my own research and self treating as I'd given up on GPs, as I know that they can't really do or tell me anything else....However the GP I saw today, couldn't have been more dismissive (and slightly obnoxious and condescending). Because my B12 levels are high (because of self injecting) for obvious reasons he can't diagnose B12 deficiency (the reason I think I have that is because my symptoms come back every time I stop the injections and the injections make me feel better). He is testing for intrinsic factor antibody, but I have been tested for everything else under the sun and they haven't found anything. When I mentioned the self injecting, he was very much "Well, they shouldn't have given you that." (from Goldpharma) and that some people think they have PA because B12 makes them feel better (well surely if it makes you feel better where is the harm....B12 is the only thing that has worked for me, and as for I shouldn't be self injecting....it made me go from being really ill to really well for four whole years....If it wasn't for self injecting B12 I would have had another 4 years of pure misery between then and now, thankfully I didn't....I just want to get back to feeling well again, and I know it works....but because of this pottasium drop thing I am now scared to inject which is why I'm on it and off it all of the time. He made me feel like I was a bit thick for thinking that any of my symptoms are related to B12 because my B12 level is sky high....I understand why he thinks that, but it's a false high because I've had injections....How do I make GPs understand....and I still have no clear answers to give to the people I work for.....I'm now even more confused than ever.....I came out feeling like a hypocondriac/junkie/time waster, when I actually feel incredibly unwell....and I don't understand why they are not taking my neuro symtpoms more seriously....I have memory lapses, brain fog, dizziness, burning pins and needles sensations in my hands and feet and feel like I'm walking into things....you'd think that would prompt them to refer me to a neurologist....possible MS (I don't think I have MS, I personally think it is to do with B12).....I'm just at a complete loss as 1.) I don't know how to get better. 2.) I don't know what to tell work. 3.) I don't even think I should be working at the moment, but he made me feel like I was just angling for a sick note and was really vile about it. ( Can I just say I NEVER take a day off regardless of how ill I feel....and it causes me problems at work). I'm in a real state over all of this.

  • Would your employers agree to a referral to an occupational health professional?

    You could also give your employers permission to contact your GP directly but not clear how that would go - but if they wanted confirmation that you have been in contact with your GP and are receiving treatment for some conditions then that would be a straight forward report from your GP.

    If you aren't a member of the PAS then I would suggest that you join

    pernicious-anaemia-society....

    This will give you access to materials that you can share with your employer explaining the potential implications of B12 on your ability to work - it would also give you access to some support on dealing with employment issues.

    B12 absorption is a long term condition. If a long term condition affects your ability to carry on normal every day activities then this puts you in a protected class as far as discrimination is concerned - including discrimination at work. Your employer would be obliged to demonstrate that they made reasonable adjustments to accommodate your condition if anything did actually end up going to court/tribunal though everyone will be working to avoid that happening.

    I would also strongly advise you to take a trusted friend with you if you are involved in any meetings at work - and also if and when you see your GP again.

  • Thanks Gambit. I have already been to see occupational health a few times, they just say to try and get a haematology referral, depending on how you feel, and to put my trust in them rather than trying to self medicate. They also say I'm overthinking it and gave me advice for anxiety.

    Also, I am being tested for intrinsic factor anti-body and possibly other reasons for malabsorbtion, but I haven't had a concrete diagnosis of anything. I was diagnosed with a deficiency in 2011, and only began to self inject when my symptoms came back after my injections were stopped, as they said I didn't need them (but I did). So I don't have a concrete diagnosis, and my B12 levels are sky high. I haven't taken time off or anything. Also not sure why anything would go to court. If they contact my GP and ask them anything, I haven't had a concrete diagnosis (although they know this). Not sure why I would need to prove it...My problem is that I'm unwell and nobody really knows why...and I'm in an absolute state over it. All I know is that B12 has really helped before in the past.

  • Hayley31 - you certainly have high levels of anxiety and this is making communications very difficult.

    Following up on some of the tips you had from occupational health on anxiety would probably be helpful as well. Even if it is just a symptom of B12 problems it is something that is definitely hampering communications and getting the treatment you need.

    Do you have any family or friends that you can talk to and trust? - you really need to have somebody with you when you are talking to people who can help with the communication.

    The decision to stop injections just because of the levels in your blood was incorrect and is not in line with current guidelines in the UK.

    Whilst members of this forum can support you I think that your best option at the moment is going to be joining the PAS and working with them

    - but you definitely need to find someone - family or friend - who can accompany you and help you with communication

  • Thanks...You are exactly right!!! I think I am getting really over anxious and completely overthinking this situation to the point where I can't see the wood for the trees. I think getting my anxiety levels down, is probably, at this point in time the way I'm feeling even more important than sorting the physical problem is....I used to be so calm and now I'm just in anxiety overdrive. My family and friends are fairly supportive, although some don't completely understand....but just as I read this post they were saying exactly the same things that you have just said....and it took reading this to actually stop and listen! I think possibly, if I'm still in a bad way with it all, I may take someone with me next time, not so much to talk for me, but just to get a bit more of a calm perspective. I don't think I've been in such a bad way anxiety wise for years.....If I can work on that, I may be able to see a clearer way forward, and see what is left. I have just looked at what I'm being tested for (cos I was in a complete anxiety ridden blur during and after the appointment this morning) and they are also checking for things like Coeliac, Chron's colitis, D3, folate etc...as well as intrinsic factor anti-body(they have tested these things before)....but at least they are doing something.

  • You also need magnesium and maybe iron too to make the B12 work properly. I need the amino acids from pork and fish most days too.

    I self inject daily and can't get enough potassium from my diet so supplement cautiously every day with LoSalt. I also take a broad spectrum multivitamin and mineral supplement, magnesium chloride flakes and an iron bisglysinate capsule.

    If you take potassium chloride and magnesium chloride your body uses the chloride molecules to make the HCl acid in your stomach and if low stomach acid is contributing to your poor absorption it will help that too.

    My serum levels test OK when my body needs loads more of different things because the cells just don't absorb them from my blood stream unless they are off the scale. For this reason I have had to just supplement according to my symptoms... And by doing so I am so much better, I can't believe that I was so ill only a year ago.

    I can't advise you as I am not qualified but know what it's like and thought you might be able to get something from my experience.

    I hope you get it sorted soon.

  • Thanks

  • I assume you have also been tested for d3, thyroid, ferritin, which also can cause a lot of symptoms listed....and sometimes deficiencies go hand and hand together.....

  • I have :) All normal no action.

  • Forgot to say yesterday that deficiencies of both potassium and folate can cause anxiety so this may also point to what you need. I found my body didn't seem to be methylating properly and so I take methylfolate to supply the methyl group molecules I need.

    For a long while I needed beyond theoretically toxic levels of most things just to survive but by having enough to repair the damage, as I have got better I have needed less and everything is more manageable these days.

  • I'm still in a complete state over all of this....My B12 is sky high, so why do I feel so ill...I don't know whether I should be self injecting or not....I don't know what to do for the best....I'm not getting any clear answers from anyone at all anymore....I used to feel really good, and now I'm starting to think that if I get this wrong, I'm not going to be here for much longer....I don't mean to sound dramatic....but I've never been in such a bad state with it all before. I am also seriously considering leaving my job, as I feel it is in the way of me getting better.

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