Hi, can someone give me the low down on potassium, I have researched to the n'th degree but am getting so many conflicting results.
I self inject B12 every day, starting in June this year, but I have a feeling that although I had an amazing result in the first month or so, I am now getting all sorts of wierd symptoms, specifically muscle pain and dizziness and ectopic beats particularly in the morning
I have read that B12 reduces the potassium in your body, I am trying to eat as much potassium rich foods and using low sodium salt, but as my appetite is not great I have a feeling I am not getting the required 4500 mcg per day.
I daren't ask my doctor to check my potassium levels, i think she has had enough of my demands
Is it ok to supplement with an electrolyte to top up my levels
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miravet
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Supplementing with B12 after a deficiency can, indeed, deplete potassium. But only if you had been suffering from megaloblastic anaemia and only for a couple of months.
If you had megaloblastic anaemia, caused by a B12 deficiency then when the body starts getting enough B12 it puts on a burst of rapid formation if new red cells. The formation of these new cells required additional amounts of various extra chemicals. The body has ample stores of most of them, but not potassium.
So this sudden burst of cell formation can deplete the body's reserves of potassium down to levels where it can cause symptoms. But after two months (or less) the body has restocked with nice fresh blood cells and it ramps production back down to normal, From then on you need no more potassium than anybody else, no matter how much B12 you inject.
Too much potassium can be very dangerous (it is the thing that kills in execution by lethal injection) so do not take a supplement without seeing a doctor. health.harvard.edu/staying-...
I wouldn't supplement. Get your pottassium checked on your next blood test. Then you will know what is what. A baked potato in its jacket a good source.
While what fbirder says is technically true, in real practice, just like some of us needing way more B12 than the science suggests, many of us need a lot more potassium and magnesium than we should.
I don't know whether this is purely due to poor absorbtion or if there is something wrong with the uptake into cells too.
He is lucky in not needing to SI daily and so has not experienced the additional issues that arise in people who do need to!
I have never had megaloblastic red blood cell diagnosis and, like many others, even 4 years on I get all the symptoms you describe, neuropathy and feel really bleak if I don't take potassium and magnesium supplements, alongside a diet very rich in both.
For the first couple of years of daily SI, I needed enough potassium and magnesium, which I take as potassium chloride (in LoSalt) and magnesium chloride, to kill a "normal" person. I still cannot get enough from my diet and find my nerves die if I don't supplement.
Obviously I cannot recommend that you take supplements without Dr guidance and blood tests and must say that too much potassium and magnesium is just as bad for you as too little which is why the standard advice is to get what you need from your diet.
Potassium and magnesium work together and so you usually need both together - which is why nuts are such a good source of both.
Most people who frequently SI benefit from a broad spectrum multivitamin and mineral supplement plus extra folate, potassium, magnesium and maybe iron and vitamin D so make sure non of the other things are limiting how well your B12 is working.
If you are getting dizziness that suggests to me that you probably need more folate as folic acid. On daily injections many people need up to 5mg of folic acid, at least to start with. This can be achieved either by using 5mg (5000mcg) tablets or (what I feel is better) a dose tailored to you to keep your symptoms to a minimum using multiples of standard 400mcg folic acid tablets.
The 200mcgs in a standard multivitamin and mineral supplement plus 12 x 400mcg folic acid tablets gives you 5mg of folic acid, to give you an idea of how many tablets you may need.
Some of us with serious B12d damage don't methylate properly and need to use methylfolate instead of plain folic acid, while even fewer people need to use folinic acid tablets instead.
Iron is another critical mineral for blood cell production and has an impact on muscles. Like all minerals, including your potassium and magnesium, you must be careful with supplementing as you can have too much and should do this under the guidance of your Dr with blood tests. It is worth getting this checked too.
The other thing needed for B12 to work properly is vitamin D and a shortage of this also produces lots of symptoms similar to B12d.
I know what you mean about asking for blood tests and confess I've only just had mine checked (and haven't got the results back yet) having run on symptoms only until now but I have decades of experience of feeding and treating animals (and crops!) with vitamins and minerals both with lab results and on symptoms and I know what to look for, how important it is to get it right and how difficult this can be.
I strongly recommend that you try to face your Dr and ask for the tests you need - folate, potassium, magnesium, iron and vitamin D and get them done when you are feeling rough (be extra careful if you are dizzy).
I just Googled things like "potassium deficiency symptoms" and used trusted sites like the NHS one. Low potassium is called hypokalaemia and it is very well worth also reading about high potassium or hyperkalaemia. Low magnesium is hypomagnesaemia and high is hypermagnesaemia - this is less common as it usually causes diarrhea which sorts the problem out!
If you have any further questions I'm happy to try to offer my experience so please ask. Just be aware that although I have training in nutrition I am not medically qualified.
Thank you Gambit62, I know you are trying to do the right thing as an admin and appreciate and heed your caution.
This is why I said "many of us need a lot more potassium and magnesium than we should" which is perfectly true and to my way of thinking does NOT say, or even suggest that "everyone does".
In hindsight I realise I could have used "some of us who inject frequently" instead.
I was just concerned to quickly correct fbirder's inaccurate reply that emphatically stated that [you would only need additional potassium] "only if you had been suffering from megaloblastic anaemia and only for a couple of months" which, if taken as universal blanket treatment advice, could lead to crippling symptoms and potentially death in some individuals.
Hi Gambit, I was just doing some googling, to find out if B12 injections can stop working and I came across a post of yours from 2 years ago about functional b12 deficiency, the reason why I am digging about to try and find out why all of a sudden I feel very symptomatic again.
I recently changed to 1.5mg of B12 from versandapo , but it is the Pascoe one, it is great in as much that it doesn't sting at all compared to the Rotexemedico .
I was taking 1mg Rotex and went up to 1.5 mg ( gawd don't ask me why, just thought more would be better despite the fact that I felt fine on 1mg )
On your post I think you were saying that if I put to much b12 in my muscle there is a chance that most of it will be cleared quickly and not much absorbed.
Could it be possible that since I have increased my dosage I am actually losing more or at least not retaining as much as I did when I injected 1mg.
Something has definetely kicked all this off again and this is the only thing I have changed .
If I understand what you are asking about it isn't actually related to functional B12 deficiency, but to the general fact that the rate at which B12 tends to be higher if the level of serum B12 is higher, which means that there isn't a simple arithmetic relationship between dose and frequency of dose ... ie taking 2mg by weekly is not necessarily going to give the same results, or maintain the same serum B12 levels as 1mg 2x weekly.
I would be inclined to check out other possibilities if you are finding that B12 is no longer working in the same way, eg thyroid problems, rather than assuming that everything is down to B12.
Some people experience the need to reduce thyroid medication after getting B12 levels right - this may be because some processes use both B12 and thyroid hormones and if they start running more efficiently because they now have all the B12 they need, you may need less thyroid hormone.
Hi Gambit, the question was related to functional B12 deficiency, Over a period of 7/8 years I have had two active b12 tests, one recently, the other 7/8 years ago, both came back excessively high, on both occassions I had not supplemented with any B12 of any description
On the thread I referred to you did say this :
Note: functional B12 deficiency can arise without artificial supplementation (B12 shots) in some conditions which stop B12 a person who is able to absorb B12 normally being cleared from the blood eg by the kidnesy, with the consequence that B12 levels in the blood get higher and higher. The patient will present with all the symptoms of a B12 deficiency but the B12 serum level is abnormally high. :
My B12 is abnormally high despite the fact that I have only recently been diagnosed with PA, based primarily on my Intrinsic Factor antibody level, which was way above the range, my strong family history of the disease and also having all the classic symptoms of PA which became almost unbearable.
The reason why I specifically asked you about what may be occuring with me is that in the same thread two years ago you also said this :
' it may be that it would be better to go for lower doses more often as what you are trying to do is keep the levels in balance. The rate at which you lose B12 gets greater when the levels in your blood are higher so just putting in very big doses every other day may mean that most of that is just being removed by your kidneys - and ends up going down the pan.;
It was that comment that gave mt my light bulb moment in as much that I had increased my daily dosage of IM B12 by 33%.
I have not 'assumed ' everything is down to B12 ? ? , but I do know my own body and know that what is going on with me right now points to my body being deficient in B12 as it was prior to when I started b12 injections in June this year.
I have had Hashimotos for over 15 years and am very familiar with everything associated with it. If my body required less thyroid hormone then I would surely be showing signs of hyperthyroid , not hypothyroid as it usually does . This is 100% not related to my thyroid.
The only thing I have changed recently is the dosage strength of my daily injection, going from 1mg - 1.5mg and unless I have a brand new shiny disease I strongly suspect that the way I feel right now is related to that change. It is the ONLY thing I have done differently.
I have decided that my new protocol is to go back to 1mg and for a while inject it as 2 x .5mg over the space of a day, that way I hope that I won't overwhelm my body with two big a dose and hopefully kick start my wellness again.
I agree, my thyroid hormone works more effectively if my b12 is optimal for me. Of course my GP does not agree. But I self inject for long time now so I couldn't care less what he thinks he knows. I know my body.
I inject twice-weekly. I do not need any extra potassium and I consider it dangerous advice to suggest that people do need extra potassium without getting levels checked. Especially when that person is describing the symptoms of high levels of potassium already.
" I cannot recommend that you take supplements without Dr guidance and blood tests and must say that too much potassium and magnesium is just as bad for you as too little"
AND
"I strongly recommend that you try to face your Dr and ask for the tests you need".
AND
"it is very well worth also reading about high potassium or hyperkalaemia"
Please be aware that if I had followed all your advice in the past I'd be dead now so please accept that we ALL have to be careful and we ALL have to understand that everyone is different.
Hi, thank you so much for all your replies, it is all so damned baffling, I did have an IF antibody blood test about 6/7 years ago and whilst 'negative' it was quite high in the range, I was also tested for active B12 at the time and it was excessively high.
However, I still suspected PA as many members of my family on my fathers side had both PA and Hashimotos, so decided to just keep an eye on it.
About 9 months - 1 year ago I started having awful anxiety and depression to the point I felt suicidal, I knew this was physical as opposed to pyschological as I do not have any tendency towards either condition.
Then about 6 months ago the symtoms really ramped up, I couldn't walk properly, my speech was becoming affected, I could be talking to a client and mid sentence I had no idea who or what I was talking to or what I was talking about ( very embarrassing).
My legs were almost completeley numb, my lower back ached on any excertion and the headaches were crippling, so I decided to get checked again, I used medichecks and tested my IF antibodies and my active B12, both tests were done with having no B12 supplements, none at all.
My IF antibodies came back strongly positive and so did my active B12 ( again excessively high ) .
I do know that an excessively high B12 can point to some cancers but as I appear to have had a high reading for in excess of 6 years I suspect that if my high b12 was related to cancer it would have reared it's ugly head by now,
I did get the results for the IF antibodies result when I was away in Cyprus in June , so bought some Methyl ampoules, got on youtube and had my husband injected me daily for a week, the effect was extraordinary, I felt human for the first time in years, which I think does point to a problem with B12 as opposed to a cancer.
I have tried to go longer than 24 hours with no injection but I feel bloody awful, with approx 90% of my symtoms returning. So I have been injecting daily with Hydroxo since June, I inject 1500 mcg in 1 ml solution
For the most part I feel fine, but every now and then I get a return of the anxiety and the dizziness, yesterday I also had some very painful neuralgic pain down my left side.
I am just baffled by it all, I did try 5mg of methylfolate, my god I have never had a headache like it, I simply can't take more than 1mg,
Last night I devised a few recipes by way of soup and smoothies to up my potassium, I can manage some magnesium, too much gives me the runs.
Oh God, so sorry for this long post, but I am knackered reading all this stuff to do with whatever the hell is wrong.
My son is in his final year of a human health and Nutrition degree and is doing his best to find out what the hell is going on with me and he suspects it is a gene problem, my body simply does no absorb the b12 into my cells, it is clearly hitching to the TC2 ( or my active b12 wouldn't be so high) but it doesn't appear to go anywhere after that.
I know the daily requirement for B12 is tiny so I am clearly getting some from the injections.
My doc is good but is totally thrown by what is going on and has referred me to a specialist but I suspect he/she will be just as clueless.
When I see the specialist I am going to push for some genetic testing as there appears to be a couple of possible genes that could account for my situation.
If you have got to the end of all this text thank you
I'm baffled to what specialist is needed. I've seen a neurologist but i suppose the absorbtion or non absorption would be gastro or a haematologist if bloods all over the place. My body dossn't follow the rules either. My folate was 7initially so I started supplementing with 400mcg folic acid the gp agreed would be a good idea. 3 Months later I was above 26. Can't remember range but just said above range 26
My hb always in good range. Thoigh ferritin had dropped by 1/2 in Jaunary. So started to supplement. With no supplements before b12 injections 61
With supplements lady test 29????
Doctor baffled.
Do feel better now managing 210mg ferrors fumarate daily with Solgar and spartone.
So I ca
n absorb folic acid very quickly.
B12 a continuing problem.
Vit D supplemented for 2 years as dropped to 21. Took 2 loading doses of hideous amounts to get the level to 73.
Again this really helped me.
I got by the blood tests . I manage to get them 3 monthly. Until I'm feeling more human.
I was too cautious with supplements at the beginning which I think wise until blood tests.
My diet is very very good.
So like what has been said. We all have such different ways our bodies work.
I had to ask for ferritin levels to be checked and most of the rest.
They have added b12 on latest form I've collected . I'm not having that so crossed it off . The Gp suggested I get it done but I said it not necessary. I've read so many times a high reading is used to stop injections.
So hope you get your genetic testing and get put on the blood form what you need checked. I've had no help with this forthcoming. If I didn't get a copy of blood results and then ask and question, everything was being 'filed' as normal.
Getting the level right for you personally can make such a difference.
A B12 deficiency of any sort is by definition an issue with absorption. So it would follow, that anything you take in forms of tablets, diet or any sort of supplement that needs to be ‘digested’ is not going to be absorbed. This could explain why some of us needs super-physiological doses of medication and minerals, vitamins etc that we might be deficient in. And like others have said, we are all different and therefore our bodies are going to react in different ways to what we put into them!
You definitely either need to see your GP to get your bloods tested or have them done privately which a lot of us on the ThyroidUK forum are used to doing. If you have Hashimotos (as do I) then there is a correlation between B12 deficiency, Vit D deficiency as well as Folate & ferritin and also some time it affects adrenal health too. We need all these minerals and vitamins to be ‘optimal’ for us as an individual and not just be satisfied with being told it’s ‘normal!’ Nothing is ‘normal’ when you have an autoimmune disease, if it was, you wouldn’t have it!
If your not already part of it, consider joining the ThyroidUK forum and have a look at their website, it’s full of invaluable info and links, and the forum is full of much more lovely,knowledgeable and experienced people than myself.
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