B Vitamin Recommendation - Without Folic Acid?

[Steve_Sr]

Hello,

I have recently recovered from B12 deficiency now according to recent blood tests and uMMA test. However, I still have unaddressed high MCV and low hemoglobin and elevated homocysteine which are possible signs of anemia.

I am currently taking TTFD thiamine for dysautonomia and Dr. Lonsdale's advice is to also take a regular B multi-vitamin supplement along with it. My FM doc originally prescribed "B-Supreme" which I tolerated for a while but then noticed rather sever muscle pain and tightness which I finally traced to the B-Supreme supplement and discontinued it.

I then decided to try Seeking Health's "B-minus" as it had smaller dosages and had similar side effects. I think that it is the B6 which is the problem even though, at 20mg, it is under the upper limit of tolerance.

So now I am looking for a new quality B multi-vitamin with less B6 and without folic acid. So do any of you have any suggestions or perhaps a subscription to ConsumerLab.com who could help me with a short list?

Thanks,
Steve

 

[Mary]

So now I am looking for a new quality B multi-vitamin with less B6 and without folic acid.

First, folic acid is a synthetic form of folate. Folic acid can actually cause a folate deficiency because it competes for absorption with folate. A large percentage of the population - I've seen numbers all over the place including 30% or more - have trouble converting folic acid to a form useable by the body. So it's best in general not to take any supplement which has folic acid, and instead look for one that has folate, or methylfolate.

Why do you want a B complex without "folic acid" or folate? especially since your MCV is high? The high MCV can be a strong indication that you are deficient in folate, as apparently your B12 numbers are okay. Generally high MCV indicates a B12 and/or folate deficiency.

I understand the B-Supreme caused severe muscle pain and tightness. If you have a folate deficiency (since apparently your B12 is okay now), I think it's very likely that the folate in the B Supreme caused your potassium to tank - to drop badly - and muscle cramps and pain are common symptoms of low potassium. This does not mean you don't need folate, however - the opposite would be true. It could be an indication that you quite deficient and very much need the folate. If your potassium dropped it would be because of something called refeeding syndrome. Refeeding syndrome generally affects people who are malnourished or starving. However, many people with ME/CFS who are deficient in B12 and/or folate will experience a refeeding syndrome reaction when starting to take these vitamins. It's complicated, and this post explains a bit about it.

The following post also explains why people with ME/CFS can have apparently normal potassium levels on blood work, but their intracellular potassium can be low, causing problems, and doctors won't know this.

Why is potassium supplementation needed in methylation treatmt?​

My MCV was high and I'd been taking B12 for years and finally started on methylfolate in 2010 and had an immediate boost in energy. Also, though, my potassium then dropped pretty quickly (within a day or 2) which is very common with ME/CFS patients and I developed severe fatigue after having an initial really nice boost in energy. It was a refeeding syndrome reaction, and supplementing with potassium, titrating up to 1000 mg. a day in divided doses over a couple of days, remedied the severe fatigue and I was able to continue taking the methylfolate. I still have to take extra potassium every day, as well as methylfolate (and lots of other things).

Here's an article about refeeding syndrome which has a good definition

Refeeding syndrome: what it is, and how to prevent and treat it​

Refeeding syndrome can be defined as the potentially fatal shifts in fluids and electrolytes that may occur in malnourished patients receiving artificial refeeding (whether enterally or parenterally5). These shifts result from hormonal and metabolic changes and may cause serious clinical complications. The hallmark biochemical feature of refeeding syndrome is hypophosphataemia. However, the syndrome is complex and may also feature abnormal sodium and fluid balance; changes in glucose, protein, and fat metabolism; thiamine deficiency; hypokalaemia; and hypomagnesaemia.

btw, I've found this to be a good B complex, and it's very reasonably priced: https://www.iherb.com/pr/life-extension-bioactive-complete-b-complex-60-vegetarian-capsules/67051

Also, how did you settle on the B6 as the cause of your muscle pain and tightness? I think it's really unusual for any of the B vitamins to cause severe muscle pain, but it's a very common symptom of low potassium. I've had severe cramps and spasms in my feet and lower legs from low potassium. A good quick remedy is low-sodium V-8, high in potassium and low in sugar. And many here have to supplement witih potassium regularly.

 

[Steve_Sr]

First, folic acid is a synthetic form of folate. Folic acid can actually cause a folate deficiency because it competes for absorption with folate. A large percentage of the population - I've seen numbers all over the place including 30% or more - have trouble converting folic acid to a form useable by the body. So it's best in general not to take any supplement which has folic acid, and instead look for one that has folate, or methylfolate.

Why do you want a B complex without "folic acid" or folate? especially since your MCV is high? The high MCV can be a strong indication that you are deficient in folate, as apparently your B12 numbers are okay. Generally high MCV indicates a B12 and/or folate deficiency.

I didn't say "folic acid or folate". I just said folic acid as I am aware that it competes with regular folate. This may also be part of my NCGS gluten sensitivity issue. I am now gluten free so am not consuming any folic acid "fortified" foods.

I understand the B-Supreme caused severe muscle pain and tightness. If you have a folate deficiency (since apparently your B12 is okay now), I think it's very likely that the folate in the B Supreme caused your potassium to tank - to drop badly - and muscle cramps and pain are common symptoms of low potassium. This does not mean you don't need folate, however - the opposite would be true. It could be an indication that you quite deficient and very much need the folate. If your potassium dropped it would be because of something called refeeding syndrome. Refeeding syndrome generally affects people who are malnourished or starving. However, many people with ME/CFS who are deficient in B12 and/or folate will experience a refeeding syndrome reaction when starting to take these vitamins. It's complicated, and this post explains a bit about it.

The following post also explains why people with ME/CFS can have apparently normal potassium levels on blood work, but their intracellular potassium can be low, causing problems, and doctors won't know this.

Why is potassium supplementation needed in methylation treatmt?​

I'll take a look at this but I can't right now. I think that I looked at potassium supplementation and ran into some warning flags about cardiac effects from too much potassium. I already have orthostatic hypotension that has almost killed me in a fall so don't want to go there again... Ever.

My MCV was high and I'd been taking B12 for years and finally started on methylfolate in 2010 and had an immediate boost in energy. Also, though, my potassium then dropped pretty quickly (within a day or 2) which is very common with ME/CFS patients and I developed severe fatigue after having an initial really nice boost in energy. It was a refeeding syndrome reaction, and supplementing with potassium, titrating up to 1000 mg. a day in divided doses over a couple of days, remedied the severe fatigue and I was able to continue taking the methylfolate. I still have to take extra potassium every day, as well as methylfolate (and lots of other things).

Here's an article about refeeding syndrome which has a good definition

Refeeding syndrome: what it is, and how to prevent and treat it​

I'll take a look at this but I can't right now.

https://pmc.ncbi.nlm.nih.gov/articl...ned,may cause serious clinical complications.

btw, I've found this to be a good B complex, and it's very reasonably priced: https://www.iherb.com/pr/life-extension-bioactive-complete-b-complex-60-vegetarian-capsules/67051

Also, how did you settle on the B6 as the cause of your muscle pain and tightness? I think it's really unusual for any of the B vitamins to cause severe muscle pain, but it's a very common symptom of low potassium. I've had severe cramps and spasms in my feet and lower legs from low potassium. A good quick remedy is low-sodium V-8, high in potassium and low in sugar. And many here have to supplement witih potassium regularly.

B6 deficiency causes your body to make endogenous oxylates as a toxic waste product which then gets deposited in various (mostly bone) parts of the body. Supplementing B6 shuts off or greatly reduces endogenous oxylate production which opens up the flood gates for your body to start dumping previously accumulated oxylates. Dumping can be a painful process as the oxylate crystals have to go back through tissue (muscles) to get to the bloodstream where they can be filtered by the kidneys. Eliminating oxylates through urine is sort of like pissing sand. I noticed this a lot with B-Supreme and to a lesser extent with B-minus.

 

[Mary]

I didn't say "folic acid or folate". I just said folic acid as I am aware that it competes with regular folate. This may also be part of my NCGS gluten sensitivity issue. I am now gluten free so am not consuming any folic acid "fortified" foods.

Sorry, I misunderstood you. I thought you were conflating folic acid and folate - many people (including doctors) do. So apparently it's fine if your B complex has folate?

ETA: Also, the Seeking Health B-Minus has no B12 or folate, so I assumed you were avoiding folate, although the B Supreme does have folate.

I think that I looked at potassium supplementation and ran into some warning flags about cardiac effects from too much potassium.

Yeah, that's the first thing that pops up when reading about potassium. And yet low potassium is very common and very harmful, can lead to cardiac symptoms as well. Anyways, you really can't get too much potassium from foods unless one has kidney disease. So if you tried a B complex and got the muscle pain symptoms, I would strongly urge you to try drinking a few glasses of low-sodium V-8 or other vegetable juices which are high in potassium. If the problem is low potassium, then generally symptoms start to go away in a few hours. And if this happens, then you might consider taking a potassium supplement.

Again, this issue is very common in people with ME/CFS.

B6 deficiency causes your body to make endogenous oxylates as a toxic waste product which then gets deposited in various (mostly bone) parts of the body. Supplementing B6 shuts off or greatly reduces endogenous oxylate production which opens up the flood gates for your body to start dumping previously accumulated oxylates. Dumping can be a painful process as the oxylate crystals have to go back through tissue (muscles) to get to the bloodstream where they can be filtered by the kidneys. Eliminating oxylates through urine is sort of like pissing sand. I noticed this a lot with B-Supreme and to a lesser extent with B-minus.

This is interesting. I've never heard of this before. I was severely deficient in B6 several years ago as showed by Nutreval testing, but I never experienced pain when I added in B6. All that happened was that my energy increased. How did you know you were deficient in B6?

 

[Steve_Sr]

Yeah, that's the first thing that pops up when reading about potassium. And yet low potassium is very common and very harmful, can lead to cardiac symptoms as well. Anyways, you really can't get too much potassium from foods unless one has kidney disease. So if you tried a B complex and got the muscle pain symptoms, I would strongly urge you to try drinking a few glasses of low-sodium V-8 or other vegetable juices which are high in potassium. If the problem is low potassium, then generally symptoms start to go away in a few hours. And if this happens, then you might consider taking a potassium supplement.

Again, this issue is very common in people with ME/CFS.

This is interesting. Normally I eat a banana for breakfast, large OJ and also use Morton's Lite Salt which has a good amount of potassium in it. In August/September I went on a bike tour to central Europe and Austria where bananas and citrus were rare. Towards the end of the tour (in Austria) I noticed leg cramping that I had never experienced before, mostly in the evenings after the days ride. I was sure to drink enough so was not dehydrated which usually leads to cramps while riding.

I have also experienced a "coat hanger" cramp in bed at night. This is usually caused by neck muscle fatigue but shouldn't happen at night while lying down.

So maybe I do have a potassium problem,

However, supplementing is not going to be easy because potassium supplements are limited to 100mg per tablet. I need something to be portable.

This is interesting. I've never heard of this before. I was severely deficient in B6 several years ago as showed by Nutreval testing, but I never experienced pain when I added in B6. All that happened was that my energy increased. How did you know you were deficient in B6?

I don't. There doesn't seem to be a good, definitive test to determine this. My dry cracked skin definitely improved while taking the B-supreme and dry skin appears to be an indicator for B6 deficiency. THere may also be indications of my high MCV.

Possible Overmethylation?
Here is another interesting data point... I am currently taking 50mg TTFD thiamine for dysautonomia which is definitely helping. I was, until this week, taking 1/2 of a Trifolamin tablet to correct a prior B12 deficiency (long story). This also gave me 85% of RDA for folate.

Thinking that I might be undermethylating (I have 1 copy of the bad A1298 gene)so I took another methyl folate pill with 850ug of methyl folate. Surprisingly my muscle pain symptoms got worse!

So then I started to look at some of the over meth symptoms and noticed more constipation and insomnia symptoms. So now I have dropped back to 1/2 a Trifolamin tablet 3 times a week. Now the constipation, insomnia, and muscle pain have mostly gone away.

So is there something in the B-Minus supplement that is messing with my methylation cycle?

BTW, how did you fix your high MCV?

 

[Mary]

Towards the end of the tour (in Austria) I noticed leg cramping that I had never experienced before, mostly in the evenings after the days ride.

I very often get symptoms of low potassium in the middle of the night. And I know I must have gotten depleted earlier in the day to have the symptoms middle of the night. I take 300 mg. potassium gluconate 4 or 5 times a day and the other day I missed two doses and that night, middle of the night, woke up with a very painful spasm in one of my ankles/feet. I quickly drank a large glass of tomato juice, managed to go back to sleep, and an hour later woke up with a spasm in my other foot! So I drank more tomato juice. This seems to be a pretty quick way to get potassium into my system without a lot of sugar.

However, supplementing is not going to be easy because potassium supplements are limited to 100mg per tablet. I need something to be portable.

You're right, they are limited to 100 mg. per tablet. I take a ton of supplements in addition to potassium, so I use 7 day vitamin dispensers like this. And I just take it with me when I go somewhere. (I always wrap it in a plastic bag as the slots can flip open)

I take a handful of things first thing in the morning (various aminos) (the first slot in the dispenser), then more pills post-breakfast, including potassium (second slot, etc.), then more aminos before or after lunch, and more regular vitamins, potassium, etc. after lunch, etc. etc. It's ridiculous the amount of stuff I take but it all seems to be necessary.

I've read it's not good to take a huge amount of potassium all at once - so I divide mine up. I think I mentioned this but I had to titrate up to find out how much potassium I needed. Actually a few months ago after doing well for quite awhile on 800 - 1000 mg. of potassium a day (in divided doses), I started getting low symptoms again so I increased it to 1200 - 1400 mg or so. fwiw, on blood work my potassium is always in the normal range but it's always on the low end of normal. I would not be at all surprised if I were one of the people with ME/CFS who has low intracellular potassium despite normal blood work.

Thinking that I might be undermethylating (I have 1 copy of the bad A1298 gene)so I took another methyl folate pill with 850ug of methyl folate. Surprisingly my muscle pain symptoms got worse!

Actually, I don't think this is surprising. If you have a folate or B12 deficiency, it can trigger a refeeding syndrome reaction, like I described above , when you start to remedy it. The extra folate may have caused your potassium to tank (refeeding syndrome), resulting in muscle cramps, pain etc. And if this is the case, it means you actually need that extra folate. When your body starts to utilize a missing nutrient like folate which is being suddenly being introduced, it requires more potassium to do this, resulting in a functional potassium deficiency.

I'm not that knowledgeable about methylation but I'm very familiar with low potassium and refeeding syndrome. Actually I developed refeeding syndrome when I started taking B1 several years ago, but that time it caused my phosphorous to tank instead of potassium. It took too long and too much detective work to figure this one out. Anyways, I had to start taking phosphorous and now I take that almost every day too!

If I were you, for now, just to make things simple, I wouldn't worry about overmethylation. I'd go on the assumption that folate has caused your potassium to drop at various times (which means you need the folate). I'd keep low-sodium V8 or tomato juice on hand to drink a couple of glasses when you get muscle pain or cramps. And see if it helps. And then you can decide whether you need to add a potassium supplement.

o is there something in the B-Minus supplement that is messing with my methylation cycle?

I don't think so, but it may not be the best supplement for you because it doesn't have folate and B12.

BTW, how did you fix your high MCV?

Good question. I haven't been tested for a few years, I moved a couple of years ago and replaced my old doctor. I like the new one but he's not really a PCP. He'll do things I ask (like certain testing) so this is something I need to ask him to do. One of these days I may get a regular PCP though they are generally pretty useless as far as ME/CFS is concerned.

Anyways, high MCV is generally caused by low B12 and/or low folate. I take methylfolate daily, and methylcobalamin several times a week. I can't remember if I told you but when I first started the methylfolate, I had an amazing day or 2 of energy, and then got hit with severe fatigue, low potassium, etc.

https://www.testing.com/tests/mcv-t...s that the,vitamin B12 levels or chemotherapy.

• High MCV means that the RBC are too large and indicates macrocytic anemia. This condition can be caused by several factors including low folate or vitamin B12 levels or chemotherapy.

So I would assume that your high MCV is caused by low folate and you may even need more B12 too but I would concentrate on one at a time. If your potassium is tanking when you take folate as evidenced by muscle cramps and any other symptoms of low potassium, I think this is evidence you need the folate, and extra potassium.