4/10/23 - Tulane University - Ehlers Danlos hypermobility linked to MTHFR defect, folate deficiency
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Hi @Mary......I wonder if any studies have been done on those with EDS and whether folate at this point in their lives would make a difference?
It's true that it's needed in embryonic development and is generally attributed to a lack of said folate in the mother's diet. If it's genetic, then I guess that wouldn't matter as much. Still, I wonder if "after-the-fact" taking of folate would help? I know a number of people with EDS.
Actually, such a shortage can lead to conditions much worse than EDS. At present I'm wondering about EDS only. Thanks. Lenora
It's true that it's needed in embryonic development and is generally attributed to a lack of said folate in the mother's diet. If it's genetic, then I guess that wouldn't matter as much. Still, I wonder if "after-the-fact" taking of folate would help? I know a number of people with EDS.
Actually, such a shortage can lead to conditions much worse than EDS. At present I'm wondering about EDS only. Thanks. Lenora
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Considering that folate deficiency in the womb is known to cause spina bifida, it not a stretch to see it causing hypermobility EDS in the womb also.
Sushi
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@Mary Well, that is a humdinger!
Back when we were excited by methylation protocols some of us were tested for all the varieties of folate. I had extremely high levels of un-metabolized folate and way below normal levels of active folate. I was also extremely sensitive to introducing active folate. I am going to try again as hEDS is very hard to live with. Strange thing though, I don’t have either of the culprit MTHFR variations. This is exciting!
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I agree that methyl folate could be a HUGE breakthrough. Tulane should do a follow-up study to see the effects of methyl folate supplementation on adults. And, obviously, for at risk pregnant women to include methyl folate in pre-natal supplements.
Mary
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@Sushi - I thought of you (and all the ME/CFSr's with hEDS) when I came across this this morning . That is so interesting you had such high levels of un-metabolized folate - textbook for what Tulane University found!@Mary Well, that is a humdinger!
Back when we were excited by methylation protocols some of us were tested for all the varieties of folate. I had extremely high levels of un-metabolized folate and way below normal levels of active folate. I was also extremely sensitive to introducing active folate. I am going to try again as hEDS is very hard to live with. Strange thing though, I don’t have either of the culprit MTHFR variations. This is exciting!
Did active folate cause your potassium levels to tank? It did mine, causing severe fatigue, and if I hadn't been aware of this possibility I wouldn't have been able to keep on taking the methylfolate. btw, I don't have hEDS but I think I have one of the MTHFR variations - I forget what my 23andme results were. I just know that methylfolate gave me a very nice boost in energy.
Mary
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Hi @lenora - I don't know the answer to this, although I'm guessing not, as the Tulane study appears to be new information. I don't think anyone has made this connection before. But that's a very good question - maybe some of our EDS members will do some experimenting with methylfolate to see if it helps them.
Sushi
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No, but I could only tolerate tiny doses. The pills I had were 800 mcg and I don’t think I ever got above 400 mcg.
I read through the article till the end and yes, they did find out the addition of methyl folate improved symptoms in the majority of their patients.
kangaSue
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A bit more information, and suggesting a high folate diet and methylated b vitamins show observational benefits.
https://fasciainstitute.org/folate-deficient-hypermobility-syndrome/https://www.researchgate.net/public...y_Syndrome_A_Proposed_Mechanism_and_Diagnosis
https://fasciainstitute.org/folate-deficient-hypermobility-syndrome/https://www.researchgate.net/public...y_Syndrome_A_Proposed_Mechanism_and_Diagnosis
Sushi
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Thanks, that is very helpful. After reading about the Tulane study, I took 100 mcg of methyl folate and developed a really bad headache. This reminded me that the same thing happened when I was seriously working with a methylation protocol years ago. I simply did not tolerate methyl folate—or methyl B12. Perhaps I just can’t tolerate methyl donors. So now I’ll work on eating more high folate foods. I do use hydroxycobalamin rather than methyl and tolerate it well.
Mary
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@Sushi - I found this on the Tulane University website - you may know all this already (or not)
https://hypermobilityclinic.org/hypermobility-tool-kit-tips/
https://hypermobilityclinic.org/hypermobility-tool-kit-tips/
Hi L'engle.....I hope spring won't be too far ahead for you. Hot/cold days here, but thankfully we've missed all of the horrid weather.
How long have you been back on the methylfolate? Is it still giving you energy....and exactly what form are you taking? Just wondering. Take good care. Yours, Lenora
How long have you been back on the methylfolate? Is it still giving you energy....and exactly what form are you taking? Just wondering. Take good care. Yours, Lenora
@lenora Just a few days so far. I think it's adding a bit to the mb12's effect. It does make it harder to nap in the day so today I'm taking a day off supplements to get some extra rest.
The form is the l-5-methyltetrahydrofolate. (yes, it's all one word!)
It's not a particularly good brand and only available in Canada I think. Solgar is supposedly a good brand, or it was 10 years ago.
I'll reply on your chat thread as well
The form is the l-5-methyltetrahydrofolate. (yes, it's all one word!)
It's not a particularly good brand and only available in Canada I think. Solgar is supposedly a good brand, or it was 10 years ago.
I'll reply on your chat thread as well
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I have hypermobility EDS and have started methylfolate and methyl B12 this week. The methylfolate arrived before the B12 and I took a 1000mcg methyfolate and it wiped me out. Slept most of the day. I cut that down to 500mcg the next day and no sleepy. Then the methyl B12 arrived and I am taking half of a 5000mcg sublingual. In a week or so I will up the methylfolate to 1000mcg and up the methyl B12 to 5000mcg twice a day.
I already take 99mg potassium 2x/day as I have found it definitely helps keep my BP in a good range. If I stop the potassium my BP always creeps up. No plans to change the potassium amount, though might try 3x/day if I notice any symptoms of potassium deficiency with the methylfolate and methyl B12.
I already take 99mg potassium 2x/day as I have found it definitely helps keep my BP in a good range. If I stop the potassium my BP always creeps up. No plans to change the potassium amount, though might try 3x/day if I notice any symptoms of potassium deficiency with the methylfolate and methyl B12.
Mary
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Severe fatigue was my chief symptom of low potassium and it hit very hard after I started methylfolate. 200 mg of potassium a day is not very much, particularly considering that the RDA is 4700 mg. You could try low-sodium V-8 or coconut water, both high in potassium if you notice signs of low potassium, if you don't want to increase potassium itself.
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I see it quite differently, @Mary. There is no evidence to be found from any reputable source that methylfolate immediately (or otherwise) depletes potassium.
I see the extreme tiredness as something completely different, and related to folate and B12 deficiency, suddenly being replenished. Note that when I halved the dose of methylfolate the extreme tiredness disappeared even though I was still taking methylfolate.
Please cite your sources for believing methylfolate depletes potassium...
I see the extreme tiredness as something completely different, and related to folate and B12 deficiency, suddenly being replenished. Note that when I halved the dose of methylfolate the extreme tiredness disappeared even though I was still taking methylfolate.
Please cite your sources for believing methylfolate depletes potassium...
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Hello....may I interrupt? A few years ago I ended up in a coma and the chief cause was low potassium. Of course high potassium causes problems also.
Try to get p. through things like bananas (3 per day) and other foods. Low potassium can and does cause brain damage. It's probably best to do this through someone trained in such things. Yours, Lenora
Try to get p. through things like bananas (3 per day) and other foods. Low potassium can and does cause brain damage. It's probably best to do this through someone trained in such things. Yours, Lenora
Mary
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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2654033/
https://www.rch.org.au/uploadedFiles/Main/Content/gastro/Refeeding syndrome guideline.pdf
https://forums.phoenixrising.me/thr...ded-in-methylation-treatmt.18670/#post-291422
Read about refeeding syndrome. It's not a mysterious process. It's very real. If someone is deficient in B12 and/or methylfolate, a functional potassium deficiency can occur when these nutrients are replenished. This happens because the body has adapted to being malnourished and when suddenly given the nutrients one has been lacking, it can cause a sudden increased need for potassium (and other electrolytes) as the body starts to function as it should, leading to a functional potassium deficiency.