Jump to content
Search In
  • More options...
Find results that contain...
Find results in...

Recommended Posts

Has anyone had any experience taking methyl folate & methyl b-12?  These were two of the supplements recommended by the CFS specialist that I see, but I was also hoping they might have a positive impact on the POTS symptoms as well.  I am getting the MTHFR gene test as well.  

Share this post


Link to post
Share on other sites

I've taken these for many years. Some symptoms did improve, my numbness and tingling most importantly. I use both sublingually. I'm quite sure I have MTHFR mutation but haven't been tested.

Share this post


Link to post
Share on other sites

I take sublingual B12 Methylcobalamin 1000µg. I also take a vitamin D for pain. 

Share this post


Link to post
Share on other sites

I have the mutation and used to take both.  I never noticed any changes in anything.  I have also had elevated B12 blood levels for a few years but my PCP isn’t concerned.  

Share this post


Link to post
Share on other sites

I take both.

I am feeling loads better after 2 months of a severe POTS flare.  I've been taking methyl-B12 and methylfolate for about 2 months now.

Share this post


Link to post
Share on other sites

I take cyaconobalamine 1000 mcg IM. What is the difference between that and methyl- B12?

Share this post


Link to post
Share on other sites

Pistol from what I understand cyanocobalamin requires more steps for the body to process.  Some people have difficulty processing this form of B12.  For many people probably there is no difference in which form they take.  I have noticed on support forums for B12 deficiency that many take methyl or hydroxyl rather than cyano.

Share this post


Link to post
Share on other sites
On 7/12/2018 at 3:52 PM, Pistol said:

I take cyaconobalamine 1000 mcg IM. What is the difference between that and methyl- B12?

To add to MomtoGuiliana's explanation, some people also have genetic mutations (MTHFR) which make it impossible for them to break down the regular (cyano) form of B12, as their bodies lack the ability to go through the processing step of methylating the B12 in order to utilize it. This causes an excess to build up in the blood, but the patient also can become deficient from what I understand (my sister has the mutation). Same with folate. Methyl B12 and methyl folate are already methylated and can be utilized by someone with this mutation. Apparently, the mutation is pretty common so a lot of supplement formulas are switching to the methyl versions of these vitamins as a default. 

@Bluebonnet - I'm not able to take any B vitamins when my adrenaline issues are out of control (I can get adrenaline surges - big ones - that are present 75% of the time in a 24 hour period). When that's going on, any B vitamin, especially the methyl versions, are too stimulating and can make the adrenaline surges and insomnia worse. However, if I'm in a period where the surges aren't the dominant symptom, they are amazingly helpful. I was taking both during a two year period where I was almost completely functional again. If I started to feel POTSy during the day, I'd take an extra dose (I never took large amounts at a time, so I was micro-dosing them anyway), and I'd instantly feel better. I had a comprehensive metabolic profile test done when I first got sick, though, and it showed all kinds of B vitamin levels were messed up, including folate, so that's likely why it helped so much. I started with 1/8 to 1/4 of the recommended dose, though, and found I didn't really have to go much higher than that at any point to feel really good effects from them.

Share this post


Link to post
Share on other sites

ks42--that is so interesting.  When I was in a very severe POTS flare in May and June I could not tolerate B12 shots nor could I take more than 1,000 mcg of B12 in any form without more severe symptoms.  Now that I am out of the worst of the flare I am taking 2500 mcg daily with little noticeable affect.  I've even tried taking 5,000 and have felt OK.

Share this post


Link to post
Share on other sites

I get the b12 shot from time to time. I also take a b complex vitamin gummy from time to time also when I can remember. The shots are nice because it lasts a lot longer 

Share this post


Link to post
Share on other sites
1 hour ago, Potsie1990 said:

I get the b12 shot from time to time. I also take a b complex vitamin gummy from time to time also when I can remember. The shots are nice because it lasts a lot longer 

I was told my doctor to not take b12 methyl.  My b12 is already above normal (926) but I suspect it’s because I’m not absorbing it due to an underlying autoimmune disease (not diagnosed).  Early on I had a myriad of symptoms that fit b12 issues.  I still do.  There is something called Functional b12 Deficiency, but my PCP doesn’t think that’s it.  But he couldn’t know this, I think, without running certain tests.  

Share this post


Link to post
Share on other sites

Thanks for the input!  Is there a good brand that you could recommend and what amount should I start with?  

It's interesting that B vitamins seem to make the surges worse when the system is already reeved up.  I've had that experience with many supplements as well. 

I am going to start on the methyl folate & B-12 and hope it makes a difference.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×