hi! So I’ve just done another post a couple of hours ago about a neurologist saying that I don’t have b12 deficiency but a private specialist saying that I do!
Anyway I’m wondering if taking all these vitamin supplements can harm your liver or kidneys? So I take my b12 injection every other day, and then each day I take-
5mg folic acid, vit D, k2, ferrous sulphate, vit c, b-complex, selenium, magnesium, zinc, copper
I take the vit D, magnesium and k2 as I’m D deficient and I take the selenium because my blood test came back borderline low, zinc and copper because my zinc was low, iron and vit c because my iron was low and the folic acid and b-complex to support my b12 injections
I’m just worrying that all of this might have some impact on my liver and kidneys? But if I’m deficient what can I do?
is 5mg folic acid safe to be on daily long term? Every time I stop taking it my folate just drops right down again
Also does anybody know anything about magnesium? My serum magnesium was right at the top end of the range but I’m told that this blood test is useless and to ignore it and I need the RBC magnesium test, which the NHS doesn’t offer and is very expensive to buy! Apparently I can even be deficient at this level! I know magnesium can cause toxicity and worried do I need to stop taking it or are my sources right and this test is useless?
Thank you x
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Amyflood246
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Hi - I also have also seen the same private doctor at the anaemia clinic in Cambridge, and to me he said that I should take the 5mg folic acid at the same time as every other day injections, but he also said that after 2-3 months injecting EOD I should decrease it down to weekly then eventually monthly. I wonder if that is what he was meaning for you as well? He was very helpful, and said that if I had any questions / issues then he was happy to answer an email - so perhaps to give you clarity and reassurance on some of your questions you should email to ask him about the folic acid, and whether you are supposed to take it permanently or not.
Yes, I saw him in December. I don’t think I have a problem with folate levels (although as I have gastric parietal cell antibodies and gastritis I probably have some absorption issues). He said to me that he is happy to answer an email if there are questions / concerns, so I think it would definitely be worthwhile you emailing him to clarify what you should do, given your particular set of circumstances / levels etc
As you have steatorhea, which is an increase in fat excretion and evidence of poor digestion of food, it is very likely you have exocrine pancreatic insufficiency (EPI), celiac disease, or tropical sprue.
These will lead to malabsorption of vitamins and minerals and can completely explain your problems.
I was in a similar position and managed to get a referral to a gastroenterologist at Addenbrooke's, where I was diagnosed with chronic pancreatitis and EPI. The easy test for this is a stool sample test for fecal elastase, which your GP can order.
Your private Dr is right; your GP is lacking the specialist knowledge to understand and help you properly.
You need a referral to the best gastroenterology team you can get to - which will mean going to a specialist hospital. If you think your GP will be reluctant to send you to somewhere really good (Addenbrooke's, London and some of the other main specialist hospitals in the UK) it will be worth asking for the fecal elastase test first and using the results to support your request. (You can look up the meaning of the results online).
You will need to go to a specialist hospital so they can do the correct tests for you - possibly an ultrasound scan, very likely a MRI and/or CT scan and a MRCP. Depending on your diagnosis, if you have EPI, you will be prescribed PERT, pancreatic enzyme replacement therapy. This is usually Creon capsules to take with all your meals to aid the digestion of your food, and therefore improve the malabsorption problems.
They are fine to take and it will revolutionise your life, if that's what the problem is.
Whatever the reason for your steatorhea, it is important you get it checked out promptly because it will be good to get you back on track as that level of malabsorption/deficiency isn't good for you - in case you hadn't guessed!! 😃
If you don't have EPI it will be good to be tested for coeliac disease - and tropical sprue, if you have been abroad.
**The following is NOT a recommendation but is just an illustration of what I need, to let you know that extremes are possible**
In addition to a very nutrient dense diet (lots of red meat and fish, plus veg, fruit, nuts and seeds, with very few "empty calories"), I currently need high strength daily B12 injections, 2 to 3 mg of methylfolate (as opposed to folic acid), plus 4 tablets of an A-Z multivitamin and mineral supplement to give me lots of iron, zinc, etc, etc, plus an extra, high strength, B-complex, every day! The multivitamin and mineral supplement doesn't give me any potassium so I have very high potassium foods and take small amounts of LoSalt, which is 66% potassium chloride. I sometimes need to top up my magnesium with magnesium chloride. I have to take additional calcium (mostly in cheese) and vitamin D3 + K2, separate from my meat (2 hours apart) because iron is locked up by calcium and I need haem iron (really only found in meat and fish), as well as the iron from the supplements.
Before my diagnosis, and therefore the Creon, I needed a LOT more than this of everything! 👀
I'm trained in animal nutrition and it was horrible having to take daily doses that would normally be lethal! But, if you need it, you need it.
It's good to get the support of blood tests, especially for minerals, which are toxic at higher levels. The basic magnesium test is accurate, as far as I am aware, and you only need to worry if you are having bad magnesium deficiency symptoms (feeling very jittery, flickery eye-sight, poor sleep, bone pain, muscle malfunction). As you know, don't overdo it! Mostly too much will just give you diarrhoea - but that's hard to tell with the steatorhea!
Good luck with everything! You sound very sensible and like you are good at your own research and care so trust yourself: you have good instincts!
Please ask more questions if you need to! All the best!
You could always try taking the 5mg folic acid every other day, once you have got your levels up, just to maintain them. It doesn't have to be "all or nothing". You might well be better back on every other day B12 jabs too - you can't overdose on that and, once again, if you need it, you need it!
Glad you mention methylfolate. Large doses of folic always make me a little concerned as so many don't seem to recognise the difference that the right form can make. Methylfolate made such a difference to me. Best wishes
Hi! I have never actually been tested for fatty stool though I’m just going by the way it looks and it sometimes leaves grease behind. I had a positive fecal occult blood test and a faint positive calprotectin test so I am going to go to my GP and ask to be referred to the gastro.
Do you know if there is a possibility these supplements can harm the kidneys?
With the magnesium I was told I need to take it for as long as I’m taking vitamin D so I’m worried about stopping it but also scared to continue! I don’t know what to do for the best x
Which B-complex do you take? I was trying to find one with folate rather than folic acid and couldn't find any. Also, do you know anything about PABA? I was taking a B-complex with 30mg of that and I panicked as I didn't understand if there were any possible side-effects/long terms issues. I know many brands don't include that.
Just the Solgar "100" one. I don't necessarily take it every day but have such trouble with absorption, I find it useful when I need it.It's got folic acid in it but "only" 400mcg so a standard dose.
I've just seen this again and see I need to explain a bit more!"Folate" is just another word for "vitamin B9".
It is available in 3 main different forms:
Folic acid
Methylfolate
Folinic acid
Folic acid is the most common form and is the best tolerated by most people.
I doubt you will find anything that ever lists "folate" as an ingredient as the product manufacturer has to be specific about what form of folate/vitamin B9 they are using and so will list it as either folic acid or methylfolate.
What you need is folic acid so almost all B-Complexes are suitable.
Unless you know you have to avoid iron, vitamin K or iodine, a supermarket A-Z multivitamin and mineral supplement will have all the right B vitamins that will be in a B-Complex, but will have the other vitamins and minerals you need to keep everything in balance.
The balance is the most critical thing, alongside as varied a diet as you can manage.
PABA used to be called vitamin B10. Its not supplied by many B-Complexes as its no longer considered a B-Vitamin, normally being generated in the gut. It's possible to react to PABA (like anything) but toxicity is very difficult to reach in the amounts supplied in B-Complexes. There are no recorded cases of confirmed PABA deficiency. But long term issues are extremely unlikely. So basically, its unlikely to do anything to you, or for you, one way or the other. One more thing not to worry about IMO.
That's really interesting too! I thought it was caused by the B12d (and I think it probably was to some degree because nothing works properly, does it!) but the GI team at Addenbrooke's thought it was more the other way round.
Great to hear from you and hope you are as OK as possible! x
Re: Magnesium. I was told by a nutritional therapist to soak my body in epsom salts regularly or use a magnesium body lotion once a day on my stomach or thigh. As I got rid of my bath recently, I use the magnesium lotion. This is not where I get mine from but is a link to the product I use
Magnesium via Epsom salts or cream is absorbed direct into our blood stream rather than going via our digestive system so better for us in terms of availability in the body x
"5mg folic acid, vit D, k2, ferrous sulphate, vit c, b-complex, selenium, magnesium, zinc, copper"
phew, so lets go over them, apologies if this is duplicative of other replies.
5mg Folic Acid is 25 times the RDA - an adequate short term dose to correct a deficiency and generally used short-term until the deficiency and folate absorption issues are resolved. Most people can lower their folic acid dose once the deficiency is corrected and gut absorption improves after some time of B12 treatment and/or improved nutrition or supplementation. This dose of folic acid cannot be justified purely because of injecting every B12 every other day. Best to get your folate levels checked if there is a concern.
Vitamin D. Most people will need between 1000IU to 3000IU over the winter at these latitudes. You may be prescribed much higher doses short term if needed to correct a deficiency. The tolerable upper limit (regarded as safe long-term) is 4000IU but toxicity is usually only seen with doses above 10000IU. Just test and see what you need and calibrate up or down accordingly.
K2. The evidence for any benefit is dubious at best. You can safely take up to 100mcg daily if you feel it benefits you, and toxicity is quite rare.
Ferrous Sulphate. Iron supplements are inflammatory and disturb the gut microbiota. Take them only if you absolutely need to based on an iron panel (full iron lab). Ferritin or Bisglycinate iron forms are preferable and (counterintuitively) lower doses alternate days are better at raising iron than high doses every day. Nonheme iron is much easier for the body to control and better for gut health but you can combine with small amounts of heme iron to increase absorption. Nonheme iron absorption can be increased by including in the meal a Vitamin C source, like tomato sauce, Orange or Red Bell Pepper. Beta-Carotene will also help absorption, so things like carrots, canteloupe melon, pumpkin, squash, sweet potato, spinach.
Vitamin C. Dont take isolated Vitamin C supplements. There is no evidence of benefit from such isolated antioxidant intakes. Vitamin C supplementation also increases risk of kidney stones. Much better to just have an orange, red bell pepper, kiwi, broccoli. A single kiwi meets your vitamin C RDA for the day, they are that amazing.
B-Complex - stick with an RDA B-supplement unless labs show otherwise. B6 can be overdosed, especially in certain forms so make sure it is the active p-5-p B6 form. 25mg is the upper limit for B6 and 50mg is where adverse effects are seen. Neurological damage at 100mg+. Folate tolerable upper limit is 1mg. The others mostly hard to overdose on but I wouldnt go crazy on B3 (Niacin) either. In general, an RDA supplement will keep you from significant trouble. Severe deficiencies may need prescription doses but dont go to those kind of doses unless labs indicate the need. I would avoid the super high dose 1,000x RDA B-Complexes personally.
Selenium. Toxicity is at 400mcg from food and supplements so I wouldnt go over 200mcg in a selenium supplement, if you need one. Under 100mcg would be safest and would still be about twice the RDA.
Magnesium. Stay under 250mcg and you should be fine. Even higher doses (350mcg) have bern used short term or for constipation but most likely no need to go that high.
Zinc. Between 10mg and 15mg is fine as a daily supplement. If you go over 40mg daily you can affect copper. A copper deficiency causes neuro problems that look similar to those of B12 deficiency. Not something you want.
Copper. You likely dont need to take it unless you're taking 40mg+ of Zinc which is not a good idea unless a clinician is treating you for a severe zinc deficiency or such. No more than 1mg a day if you feel you need it....but you probably dont.
thank you! All of that information is really helpful.. with my folate it just drops as soon as I stop supplementing so I’m not sure what to do regarding that one?
I’m vit D deficient and have been told for it to work I need to take magnesium and k2 with it. I was only told that the serum magnesium blood test is useless and it needs to be the RBC blood test?
Do you know whether all of these supplements can harm the kidneys or liver? X
Instead of stopping the folic acid, why not try a reduction to 400mcg a day which is still twice the RDA. maybe combine that with increased folates in the diet but slowly introduce new foods, especially legumes to avoid any stomach upset and let the gut microbiome adapt.
You do need magnesium and K2 for D to be effective but whether you need to supplement them depends on whether you're deficient or not. As much as 200mg Magnesium in a stomach friendly from like Bisgylcinate, and 100mcg K2 is totally safe long-term. You would not even be close to overdosing at these levels.
The body creates K2 from any vitamin K in the diet. I have seen some debate about whether sufficient K2 is generated from K but I dont think there is good science on the benefits of K2 for someone who gets adequate vitamin K. I take K2 but only because it happens to be in my multi, I wouldnt care if they removed it.
None of these things at the dosages described has any possibility of harming liver or kidneys unless you already have a liver or kidney illness, but then if you have either of these, you should get specialist advice (too much potassium can be an issue for those with kidney problems as the sick kidneys cannot remove the extra potassium as they normally would).
yes its my understanding that red blood cell magnesium is a better reflection of magnesium adequacy.
"Use of 3lP-nuclear magnetic resonance spectroscopy on human red blood cells in samples taken from patients with disease states to measure tissue intracellular free Mg ([Mg2+]i demonstrate a high correlaton (r = 0.5-0.8; P < 0.01) between [Mg2+]o and [Mg2+]i, suggesting that a Mg2+ measurement might be, quantitatively, a "true reflection" of soft tissue levels."
my serum magnesium blood test level was 0.98 and the cut off was 1.00 so I don’t know whether this means anything or not do I need to stop supplementing or is this test not accurate enough to say. I was told I could still even be deficient at this level.
can supplementing with 5mg folic acid daily cause issues or liver or kidney problems?
with regards to the b12 deficiency do you know whether it can cause POTS?
Also I know that b12 deficiency can cause small fibre neuropathy which can cause autonomic dysfunction but can the dysautonomia occur on its own without other symptoms of small fibre neuropathy such as pain and numbness etc in the feet legs and hands? X
Yes a B12 deficiency can cause POTS. POTS can have other causes too but B12 deficiency is one.
Relevant article quote:
"Vitamin B12 deficiency in adolescents may cause sympathetic nervous system baroreceptor dysfunction, leading to postural orthostatic tachycardia syndrome (POTS), according to a clinical study published online December 23 in Pediatrics."
A RBC magnesium test would be better, hard to read anything into the normal serum test. You can supplement up to 250mg even if you are not deficient and there should not be any issues. Bisgylinate forms best.
No the folic acid dose is not likely in and of itself to cause kidney or liver problems. Think about this way. The normal RDA of B12 is 2.5mcg. Some patients with PA inject 1000mcg of B12 intramuscular every other day or even every day. I've never heard any report of any kidney injury or issues as a result of this. Unless your liver or kidneys are already injured the 5mg folic acid is unlikely to harm them. However it is an extremely high dose (25 times the RDA) and other negative effects are possible. I have seen at least one paper hypothesize that very large amounts of folic acid could lower your active B12. This is by no means proven but I would be very careful of overdosing anything that could affect B12. The idea that 5mg of folic is needed if you inject every other day has no basis and many people inject EOD without such a massive dose. You can also look into unmetabolized folic acid which also does not sound good.
I have no idea whether the dysautonomia can occur without small fibre neuropathy but it wouldnt surprise me as everyone's B12 deficiency is different - there are many similarities and common symptoms of course but some experience symptoms few others have or have problems, pains or strange sensations in areas where others have no problems.
thank you! At the moment I am folate deficient so I definitely need the folic acid for the next 4 months then I will think about lowering it.
Is b12 safe with liver and kidney problems? I have been told that is and it can even improve their function?
I will lower my magnesium down to 250. I don’t want to completely stop as it a co factor for my vit D. If you are vit D deficient do you need to be on it for life or just until you get your levels up and then monitor them?
I’m just really confused with the dysautonomia because I have all of the symptoms of it but none of the sensory symptoms of small fibre such as the pain. I’m worried incase I have another issue that’s causing these problems and not the b12 but it just doesn’t make sense for it not to be the b12 with cuts in the corners of my mouth and the sore tongue, the brain fog, forgetfulness, irritability, fatigue, muscle twitches, body a dead weight, weakness…I don’t know it just makes sense that it’s b12 since my levels are only just about in range by a few points but I have this nagging feeling of what if it’s something else like multiple system atrophy or fabry disease and I’m going to die! I don’t know I’m just really scared x
B12 is not toxic to anybody or any organ of the body at any dosage, that is why no tolerable upper limit has ever been set. There can be side effects of very high doses or reactions to specific forms, like anxiety, insomnia etc. In extremely high doses, like thise used to treat cyanide poisoning the risk comes from the high quantities of fluid injected rather than the B12 itself. There are very rare cases of anaphylaxis on the first or second administration of a B12 injection thus the general recommendation to have these supervised in a medical context.
I have never heard of anyone with liver or kidney issues being hurt by B12 but if you have these issues you should already have some recommendations and guidelines from your doctor as to what you can and can't take, and how much - for example too much potassium can be an issue if you have kidney problems.
If you live in the UK it is highly likely you will become at least moderately Vitamin D deficient over the winter if you do not supplement. In theory if you got a LOT of sun over the summer, Vitamin D is conserved in the body and in theory it might get you through winter, but probably not. Most people will need to supplement, I gave the usual dosages above, these are for people who are not deficient and do not have absorption issues. You will need more to correct a deficiency and more than usual maintenance dose if absorption issues are not resolved. Let blood tests guide.
Dont try to judge the severity of the B12 deficiency by your serum range results, they can be misleading. Although the symptoms you describe could have many causes, they are all very typical of B12 deficiency as you will see if you rummage through the posts on here.
thank you that’s all very reassuring! It would be so much easier if my intrinsic factor would have been positive because I’d know for sure then but oh well I can only try!
Thank you so much for all of the information you have given me you have been more than helpful and I really appreciate it x
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