Help with Co factors

[Doeyditdot]

Hi

So after at least two long years of trying to get a diagnosis through the GP I have had to resort to SI EOD which my hubby has taken to like a duck to water 😊

However I still don’t really understand which Co factors I should be taking

Can anyone recommend a good brand and dosage of folic acid or send me a link please

Also what else should I take

Thanks for all the support you guys give it is much appreciated

😊

[Technoid]

Eat a good diet. Supplement things that are you are deficient in or that you are not getting enough of from your diet. A good RDA multivitamin is no harm. There are a few extra things that are a bonus like Creatine but that's the main stuff.

Everything is a co-factor if you zoom out far enough. Folate is the closest to B12 but all the other B vitamins are involved. With enough examination of metabolism it's all connected to a lesser or greater extent.

Folic acid is folic acid - the brand is a distraction. Different folate forms can be tried like methylfolate or folinic acid, if they work better for you. Don't take huge doses based entirely on Facebook posts etc.

[B12life]

I agree with Technoid. don't take folate based on social media suggestions. Take it if you blood work shows it's low. I have not needed to supplement with it.

I do however supplement with the following just because I feel like many of us are low in many of these b vitamines w/o any accurate tests. I have felt they have helped supplement the b12. However, the most important thing is the EOD b12. don't stop or space out the injections until all symptoms have resolved. then back off and see if symptoms return. it takes weeks to feel the effect so keep a tight record of what you are doing and the results daily.

b1 - 250 MG benfomax (must be this form or Thiamax) - helps with brain fog

b multi (best w/o b6 but hard to find one like that)

b-6 (Pyridoxal 5'-Phosphate form . this form prevents chronic toxicity and thus this is why i ensure my b multi doesn't include it as it is typically the wrong form which when taken too much causes neurological symptoms.

400 MG magnesium glutinate (or whatever form you find works best)

I take these daily. pay attention to the labels, most b vitamines are not fat soluable but surprisingly some of these ARE fat soluble which means they must be taken with food that has fat for optimal absorbtion. The label should indicate. other fat soluble vitamines are A D E and K. I only take vit d because I had my gallbladder taken out and thus need more than average. Typically I recommend people don't overdose on D and take what works for them.

[MindfulSquirrel]

I’ve had real problems with high dose folic acid - I think my body wasn’t processing it properly and I had weird deficiency and overload symptoms at the same time. However, my experience is that B12 injections need SOME sort of folate supplement to work properly. I think I’ve found my personal balance now (a small dose of methylfolate and a moderate dose of folinic acid) but many people seem completely fine on folic acid. Whether you take advice or try and find your own balance, it’s worth rechecking your folate levels frequently, trusting your instincts and being thoughtful about where you get advice from.

I feel like a walking B vitamin these days because as well as the B12 and folate I take 400mg riboflavin for migraines on neurology advice. 😭 I take a good b-complex with a separate small dose of B6 (no more than 10mg daily and I take breaks ) to try and balance the others, and I do notice when I don’t have the complex. And it’s worth keeping an eye on your ferritin as B12 treatment can lower it and vice versa.

More generally I take magnesium, vitamin D (with vitamin K for any dose over 1000iu), omega 3 and following getting my MTHFR results back, am now trying choline. And I keep my diet high in potassium but do not take supplements as they can apparently be risky.

[Technoid in reply to MindfulSquirrel]

"And it’s worth keeping an eye on your ferritin as B12 treatment can lower it and vice versa. "

The only case in which B12 treatment might affect iron stores is at the start of treatment, if you have macrocytic anemia and misshapen red blood cells need to be replaced. This can cause a short term draw on iron stores. But this is not something which continues indefinitely. PA can cause reduced (or no) stomach acid which which can reduce the ability to absorb iron even if the diet contains adequate amounts.

High ferritin stores (not common here I should think) would not reduce B12 levels.

You don't need to supplement vitamin K (K2) with Vitamin D despite what the internet folklore mill says around that topic. High doses of Vitamin D, beyond 2,000IU are probably not needed for most people.

Testing for MTHFR variants is usually a waste of money.

[MindfulSquirrel in reply to Technoid]

Tbf the advice about the ferritin was from the specialist B12 and iron doctor I saw - my MVC was still right at the upper top of the range though so presumably that could still count as early days. And when I tried stopping folate and continuing injections, about 10 days in and a few hours after a ferritin dose, I had horrendous neuropathy and generally felt awful - it improved after an extra B12 shot so it certainly felt like the iron dropped the B12. I started the folate again the following day and it’s not happened since.

And I only ever went down the MTHFR route because a) when trying to pick apart my odd folate response I was coming across peer reviewed papers linking it with things I was experiencing, and b) I also came across peer reviewed research potentially linking it to hEDS, which I also have. It was very top down reasoning (“I have these symptoms that could possibly be caused by this” rather than “I have this which could cause these symptoms”) and my (very sensible rather than snake oily) nutritional therapist friend said they were the most explanatory results for a set of symptoms she had ever seen. Tbf I was pretty much doing everything that was recommended so was it a waste of money? I don’t think so as it helped me feel validated that there was actually something off.

You do make a good point that one should be careful of what one reads on the internet, but of course YOU are also somebody posting on the internet here, and not just from a “I tried this” perspective but a “this is the way/you should or shouldn’t do this” one. Without sources I may add, which doesn’t mean the info isn’t good but does mean that people reading should retain the same degree of skepticism you’re suggesting they use elsewhere. The internet is a minefield, there aren’t clear validated guidelines on co-factors and it essentially comes back to what I originally said - you’ve got to be thoughtful about the validity of the information you’re receiving. At some point there has to be some sort of leap of faith but that’s why you’ve ultimately got to listen your own body, be prepared to rethink and not get sucked into keeping bad choices going through cognitive dissonance.

I can tell you though, I was borderline deficient for vitamin D on 1000iu a day so I doubt 2000iu would have done that much more. 🤷‍♀️