Pernicious Anaemia Society
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Pottasium Levels

I have posted on here before, as I was diagnosed with a B12 deficiency in 2011 - had every symptom under the sun: Brain fog, dizziness, fatigue, sore lips, sore tongue, burning sensation - pins and needles in hands and feet, really dry skin, memory problems, speech problems, hair falling out in shower, feeling restless all the time etc...the whole thing getting progressively worse. I also have stomach symptoms which I think may be the reason I'm not absorbing as I didn't test positive for intrinsic factor anti-body and my diet is not low in B12. Have had blood tests for Coeliac and things like colitis but didn't test positive. I also tried B12 tablets, sublingual spray and patches....the only thing that ever really helped was B12 injections. I felt amazing after loading doses and they lasted for 3 months, I had my 3 monthly injection which only lasted a few days, then they took me off injections and my symptoms returned, which is why I began self injecting in 2012, every other day until I felt better. I had regular injections for the next 3 years and felt really well (apart from I did have flare ups of the stomach thing still). I thought the problem was solved. In 2015 after a virus I felt really unwell and thought I was having side effects from taking B12 so often for so long (I kept on going faint and my neuro symptoms came back). I stopped injecting and after a few weeks I felt well for six months. The symptoms then returned so I went back on them, after 5 injections I had dizziness and muscle weakness, but this then gave way to feeling better I realised it was probably from the drop in pottasium that some people get when they first go on or back onto injections. I felt better for six months, then the same cycle happened, (feeling well for six months, then symptoms returning, having B12 to feel better - I was always scared to inject unless I was sure I really needed to...I now realise from what people have said that you have to stay ahead of your symptoms returning to avoid these horrendous side effects as it is from your body healing and not from too much B12). I had one a month, but that wasn't enough, I just felt faint and then didn't feel better. So I started spacing the injections out every few days which was working well for 4 months, then I must have got in a mess with them as in May last year I was feeling more unwell than ever and was posting on here in complete panic. June - December I had a good six months and when my symptoms returned I began self injecting again, and towards the end of December I felt like I was going to die and I'm not exaggerating. I had chest pain, abnormal heart rhythms and generally feel really really ill. Really speaking I should have gone to A & E. I still feel extremely unwell. I have never been as ill as this before (and that's saying something....I went to my GP and went for a blood test this morning for electrolyte imbalances such as pottasium or magnesium deficiency. I have left off the B12 until I know what is happening with that. If I can correct my pottasium deficiency (if I prove to have one) maybe that is what I should do first before thinking about going back onto B12, or even if I don't test positive I am trying to build them up with coconut water, bananas etc.....I really do feel bad today....any advice would be appreciated.

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The link between potential potassium deficiency and B12 treatmetn relates to the correction of a macrocytic anaemia

It's only a short term risk.

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Thank you....but it is the chest pain that is really scaring me. I noticed it a few days before Christmas, and then on Christmas Eve it really did feel like a crushing sensation and I genuinely did think I was going to die. My heart actually felt swollen. These symptoms are terrifying. It hasn't been anywhere near as bad as it was on Christmas Eve (just over two weeks ago) but it is still there. I should have gone to A & E but didn't as people around me just think it's anxiety, and try to reassure me it's that, even when I know that I haven't had anything like this before....really frustrating and isolating. I know you go through the side effects to get to the other side, but it obviously if the side effects are going to be this bad....I never used to have any side effects at all apart from a bit of acne. Should I wait for my test results to come back, work on my pottasium levels and then go back to it (otherwise I'll never get better from B12 deficiency) but not sure exactly how often to inject. Sorry....I'm in such a state over this again....you must think I'm an absolute nightmare.

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there are a lot of things that can cause chest pain - potassium deficiency is far from the only one - and there are a lot more symptoms for potassium deficiency.

I hope your GP gets to the bottom of the problem, but as above, it is unlikely that any potassium (or magnesium deficiency) will be related to the B12 supplementation

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I thought pottasium levels could drop at the beginning of treatment if you are macrocytic....I really can't think of anything else it could be and I need to know what to do to be safe....I know I will need regular B12, I know I won't be able to get it on the NHS, and I don't want to EVER have symptoms like this ever again....there just seems to be nowhere to turn to for help.

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Any update on your situation Hayley31 ?????

Hope you're better!!!!!

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Thank you so much for asking Blue Boy. Really means a lot. I have started spacing my injections out and only having half a syringe full for the time being, so even though this year got off to a rocky start, I have started to have some improvements. I started with one every two weeks, then brought it down to once a week and although towards the end of the 2 weekly or weekly period I feel I am literally gasping for B12 I have noticed improvements when I do have it. I think the mistake I was making was to wait too long until I was really ill and then have way too much at once, and then my body has to go through a LOT of healing and I think that is what was causing the side effects. I don't think I have ever been as ill as I was over Christmas but I'm beginning to see light at the end of the tunnel. I may reduce it to every few days if I feel like I'm struggling and hopefully will get my blood levels back on track and get past that healing process in more of a gradual and less aggressive way.

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Wow that's great to hear!!

I'm just ordering my ampoules tonight and was forming a plan that basically tried to prevent those highs and lows you have had to ride.

I'm looking at the first shot 1mlx1,000mcg under the skin in to places, so half one side of my abdomen, the other half on the other side.

I don't want that massive spike potentially giving me a bad experience on my first ever shot which might set me up for the pre-injection dread scenario lol

I'm also ensuring, thanks to you and others who have reported their experiences, that I take a banana every day, in the middle of the day, so as to try and prevent any sudden potassium drops.

I'm coming off Lansoprazole after 20 years of use so the hope is no permanent damage has been caused to the parietal cells that secrete the all important Intrinsic Factor and in time I'll be able to rely principally on the red meat that has been absent in my diet for the 20 years since starting the PPI's.

I have no gall bladder either and that's what led to me stopping the red meats, dark ales etc, but I'm on my 3rd day totally off them and have had zero reflux-I've weaned myself down on the dosage gradually- and that is an all time 1st for me, ever. A porridge and toast breakfast with skimmed milk and light scrape of butter with a calcium caseinate protein drink a bit later seems to get my tummy going, gives the unhindered HCL something to get stuck into, and a good way to balance out my blood sugar for the rest of the day, hopefully lol

Anyway, I totally get what you are saying about the frequency and amount of your B12 and how you are going about it now, it sounds like a good plan.

You may not get that WOW! boost after the lower dosage shot, but it may be worth giving up if you still feel lots better but not with the dropoff and the terrifying symptoms as the blood level starts to decline.

If you're smart and proactive with your shots rather than reactive, I think you're on to a winner there!!

Just wondering how you're doing the 'half a shot', are you dumping the other half of the ampoule or somehow storing it in the syringe for the next usage?

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Sounds like a plan. I inject into my thigh. I think the half syringe full is better as it's not too much for me. You can't really overdose on B12 but when you are as ill as we are, when you start having B12 your body goes through a lot of healing and it's that that causes the side effects. I think smaller doses and more spaced out doses helps and makes it easier to gage what is happening and what to do rather than none at all for months on end and then a massive wham.

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Yeah 100% agree with that; you can always nudge up to 3/4 or back down again depending on your activities etc depending on time of year, or if on abroad holiday for example.

You'll nail this, just you wait and see ! !! !!

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Thanks. I hope so....I'm still feeling pretty rough and nowhere near up to going back to work yet, but fingers crossed.

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Hi sorry to hear your having such a hard time I recently have been diagnosed with b12 deficiency and peri menopausal,,I've had the loading shots and I'm on gelapin for nerve pain and estette duo for menopause...my symptoms are burning shoulder blade and breasts pins and needle type pain in my mouth and face my teeth feel sore and horrible taste in mouth my calf muscles ache and in general feel rubbish but the thing that bothers me the most is the pain in my stomach I get cramping pains at the top of my stomach but to the left just st my rib it's agony can't even bear to touch it also it seems to go from there to my breasts can I ask what your symptoms are xx

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I have brain fog memory problems, extreme tiredness, dizziness, burning pins and needles in hands and feet, dry skin, stomach problems, breathlessness.

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Feeling pretty awful at the moment, really tired, not there, slight head pressure feeling and stomach pain....not good....hope this passes off.

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I would just like to say....I have been feeling SO much better since I posted this seven months ago...just stumbled across it as I haven't been on here for a while. I now self inject once every one or two weeks and this works really well for me.....I now feel so much more in control of my condition!!! Thanks guys for all your support.

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