• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Miserable from only 800mcg of folate?

PeterPositive

Senior Member
Messages
1,426
@LynnJ
It's likely that slightly different forms of the same compound (methylfolate) will cause similar issues.

Personally I find Metafolin as the "gentler" form of active folate, followed by Extrafolate (e.g. Thorne's) which is stronger and Quatrefolic which is even stronger, at least for me.

Sublingual also feels clearly stronger than oral, probably because it hits you very rapidly compared to absorbing in the gut with a meal.

A couple of basic suggestions:
1- make sure you're not too deficient in B12. If you are, methylfolate may cause more side effects (as per Dr Lynch)
2- Start low, 50-100mcg, not 800. Let your body adjust to it and slowly increase it but always avoiding any side effects.

If your body now only tolerates 50mcg, so be it. Why pushing it? What you need is the right dose, not necessarily a high dose.

good luck
 

LynnJ

Senior Member
Messages
121
It seems like the lowest dose I can find is 400mcg. And while tablets can be cut up, it's a pain when you want to start out as low as 50mcg!
 

PeterPositive

Senior Member
Messages
1,426
It seems like the lowest dose I can find is 400mcg. And while tablets can be cut up, it's a pain when you want to start out as low as 50mcg!
You can cut them in quarters, usually it works.

I had lots of troubles with B6 back in 2011, but my homocysteine was though the roof so I had to take it. When I started I used to crush the sublingual tablets and just take with a few crumbs. Eventually my body got used to it and then I was able to take higher doses without problems.

good luck
 

LynnJ

Senior Member
Messages
121
Well, I took 200mcg of Quatrefolic last night, along with an Enzymatic Therapy B12. No stomach upset or anxiety this morning, just a heart that's pounding away and shortness of breath that makes me keep yawning/sighing. However, I've been experiencing shortness of breath since the beginning of my period a few weeks ago...

My ferritin and iron are both around 50, which I've read is the bare minimum, so I have been taking some good iron supplements. I thought since the shortness of breath came on right as my period started, it was most likely iron. I'm not positive, though. But I'm having other symptoms like brittle nails, more hair loss than usual when I shower, etc etc. Could be iron AND/OR folate...

It does seem worse today than the last week or so, which makes sense. I've had this issue with folate and B12 before. I was told I most likely need potassium. The problem is, no matter how much potassium I take (and I can't take much before it has a wretched laxative effect on me), the issue seems to persist to some degree.

Any recommendations? :( I really do need to be taking folate. I'm on Spironolactone, and apparently it can drastically lower your folate levels. They say anyone who's on it for a year or more (I've been on it for, like, 3 years now) needs to be supplementing.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Any recommendations? :( I really do need to be taking folate.
I had to start with much less than 200 mcgs. I would literally dampen a toothpick and dip it into a crushed tablet. Doing this for a while, I was able to slowly titrate up to 800 mcg.
 

LynnJ

Senior Member
Messages
121
Oh wow!

I have little Doctor's Best capsules...I suppose I could just open one up and pour a tiny bit into a glass of water.

How much B12 were you taking with your initial miniscule amount of folate?
 

Kathevans

Senior Member
Messages
689
Location
Boston, Massachusetts
@LynnJ I've just discovered this thread of yours and haven't read it entirely, but in a phrase, yes, I've had plenty of gastric problems from Folate. In fact, seemingly as soon as my body runs out of the folate I've taken, I begin to have irritable bowel symptoms, gassiness, followed by looser stools.

When I first got on this forum and began to post a little over a year ago, I had chronic diarrhea, partly attributed to high oxalates, but I'm quite certain also to do with a desperate need for folate. Each time I increase my folate, the first sign that my body is happy is that my bowel movements are firmer. (sorry if this is too much info)

And not so different from you, as I recently lowered my folate and B12 to try to feel less buzzed, I no sooner got off the folate than my sleep and digestive issues flared. I'm adding it back into my regimen now and my only confusion/quandary is whether I can keep my mcgs of folate low. Today, after adding 200mcg back in 2x yesterday, having my gut go through a sigh, as well as some of the pain I have had lessening, today I stepped it higher up again to 400mcg 2x.

The problem is just as you say. It feels like once your body adjusts to a certain level, it just wants more, but that route isn't always clear or singular. That is, there may be other things you need, too.

I'm locked into this struggle currently and haven't found a way out. I'm always amazed when people say they're taking a certain amount of folate and it works just fine. This has never been the case with me for long once I started to ramp up.

Just to be clear, though, I have always raised my levels of B12 first, then the folate. I take about 4-5x the B12 than I do the folate. Have you had genetic testing done so you know where your weak links might be? That is to say more problems with MTHFR and other folate cycle genes, or more with MTRR and MTR and therefore the B12 cycle? You can see where I lie in my signature.

It does help. A bit!
 
Last edited:

garyfritz

Senior Member
Messages
599
@LynnJ, for comparison purposes: I have a bunch of SNPs (see sig) and I seem to be almost totally insensitive to methyl folate. I take roughly 1500mcg of methylB12 and 4500mcg of adenoB12 per day. I had been taking around 400–1200mcg folate with no apparent effect. So I started lowering my dose until I finally stopped taking it entirely. I took zero additional folate for several weeks and didn't notice any difference. Then in two days I stepped it up to 8000mcg per day, then dropped it back to zero, again with no effect. I don't know if that helps you any, but if you know your SNPs, maybe you can compare yours to mine and get an idea why we're so different.

Greg the Australian oils guy believes that if you have enough B12 and B2, you don't need supplemental folate. Maybe that's what's going on with me.
 
Last edited:

LynnJ

Senior Member
Messages
121
It sounds like your issues were due to not having enough folate. But my issues are caused BY supplementing with folate.

I'm starting to think I should try folinic acid instead. I haven't had any testing done. It's just so pricy, so for now I'm just going off my reactions/side effects.
 

Kathevans

Senior Member
Messages
689
Location
Boston, Massachusetts
Then in two days I stepped it up to 8000mcg per day, then dropped it back to zero, again with no effect. I don't know if that helps you any, but if you know your SNPs, maybe you can compare yours to mine and get an idea why we're so different.

Greg the Australian oils guy believes that if you have enough B12 and B2, you don't need supplemental folate. Maybe that's what's going on with me.

Very interesting, Gary! I was going to ask what level B-12 and Folate you were taking and, given that many of our genetic snps are similar, I'm amazed that you need no folate. But then it amazes me how different we each are. I'm working on Greg's advice with regard to the B2 and am having some reasonable reactions to it. I'm going slow, though, as always. Just up to 22-28mg/day of B2. Not much yet, I know.

Have you ever figured out how a squirt of B12 Oils relates to the Enzymatic Therapy Me-B12? It looks like you're taking one that has more Ado B12, but perhaps at an earlier time? I was trying to cover my 800mcg of folate a day with 1 squirt of B12 Oils and began to feel that it wasn't enough. That maybe I needed two squirts, given I like to keep the ratio of B12 to Folate at about 4-5:1. I know Greg is doing testing and that at .75 MeB12/dose, he claims roughly 60-80% absorption, right? This would make it roughly 450-600mcg of MeB12. If Fred claims 20-30% absorption of the Enzymatic Therapies, for 4x 1,000mcg tablets that would be 800-1,200mcg of MeB12.

Is that right?

Maybe I do need 2 squirts! At least as long as I use that much folate. I'm heartened by your ability to lower your amounts.
 

Kathevans

Senior Member
Messages
689
Location
Boston, Massachusetts
It sounds like your issues were due to not having enough folate. But my issues are caused BY supplementing with folate.

But Lynne, I was absolutely NOT tolerating folate (horrible pain, other neurological symptoms like bad sleep and heart irregularities, the chronic diarrhea) UNTIL I managed to increase my MeB12 fist. Even now, I cannot tolerate more Folate without first increasing my B2. Everything depends on what comes before it, and that depends on YOUR body! My snps have helped me to understand where my weaknesses are. Without the genetic test from 23andme I would be in the dark. Unfortunately, the cost of the test rose from $99 to $199 just at the holidays. Still, as far as I'm concerned, the knowledge it has given me has helped enormously with my moving forward...

Best of luck.
 

garyfritz

Senior Member
Messages
599
Very interesting, Gary! I was going to ask what level B-12 and Folate you were taking and, given that many of our genetic snps are similar, I'm amazed that you need no folate. But then it amazes me how different we each are.
Boy, no kidding. One person can have a set of SNPs and suffer terribly; another can have the same or very similar SNPs and have no problems at all. One person requires buckets of B12 or folate or whatever, others can't tolerate it or notice absolutely no effect from it. I'm starting to think that the SNPs are only a very weak indication of what you're working with. The final authority is how your body responds. But that makes it mighty difficult to guess what your body needs.

I was pretty surprised about the folate too. But after my recent experiments, I seem to be completely insensitive to it. I ramped up quickly to a reasonable level (8mg/day) and felt nothing. I didn't leave it there for a long time and I didn't experiment with really high levels (20-30mg/day) but geeze, I expected SOME kind of response. Nothin'.

Have you ever figured out how a squirt of B12 Oils relates to the Enzymatic Therapy Me-B12? It looks like you're taking one that has more Ado B12, but perhaps at an earlier time?
Sorry, no -- I haven't used the Enzy. The Ado/Me oil I was using was roughly 0.5mg/squirt methyl, 1.5mg/squirt adenosyl (injected equivalent). But for the last few weeks I've been doing methyl-only.

I know Greg is doing testing and that at .75 MeB12/dose, he claims roughly 60-80% absorption, right?
He says they showed 80% absorption in animal testing.
 

Kathevans

Senior Member
Messages
689
Location
Boston, Massachusetts
Thanks@garyfritz! Indeed. It's all individual trial and error... I will say I'd like to get away from all the tablets up under the gums For this reason alone, the oils are great.
 

LynnJ

Senior Member
Messages
121
Well, I've discovered that folic acid causes the same side effects as folate for me...

Any significance to that? Does that mean my body is converting it properly? Just as an experiment I've been taking 400mcg of folic acid the past few days. Upped it to 800 and by the second day had bad stomach upset. Same exact thing I experienced with the Solgar folate. I was taking 1000mcg of B12 with 400mcg folic acid, and 2000mcg when I took 800.

I just ordered a new B-complex to try; the Biotics Research Bio B 100. Unlike all the other B-complexes I've seen, it only contains 100% of the RDA values instead of, like, 1500% of things like B2 and B6, which I think is overkill and can cause issues down the line. Three pills provide 200mcg of folinic acid, so it'll be easier to work up slowly with this one and then take extra folinic acid/folate if needed. I'll also still continue to take a minimum of 1000mcg of my Enzymatic Therapy B12 daily.

Here's hoping it goes well!