I just don't know!: I have absolutely... - Pernicious Anaemi...

Pernicious Anaemia Society

31,811 members22,936 posts

I just don't know!

Jefner profile image
5 Replies

I have absolutely no idea what type of B vit complex I should be taking. I am MTHFR and COMT and my former FMD said I shouldn't be taking methyl and with B12, I should be taking the hydroxycobalmin. Then when I changed FMD's, they recommended me on metabolics.com/b-complex-po... which I have been taking although only half content as I felt I had a bad reaction to the Thornes Basic B causing my existing anxiety to worsen.

What the hell am I supposed to be taking, so confused right now. If the Metabolics one is the right one then I will feel better in increasing to a full cap because my B levels arn't brilliant, although my B12 is OK.

Can someone help please?

Written by
Jefner profile image
Jefner
To view profiles and participate in discussions please or .
Read more about...
5 Replies
Foggyme profile image
FoggymeAdministrator

Hi Jefner. Oh dear, it's so difficult when two practitioners say and do two different things.

The first thing is that if you feel you've had a bad reaction to the Thorn's B complex, then perhaps best not to take it and refer back to whoever prescribed them.

I note that you've previously been told that you should not take methyl folate and that you should use hydroxocobalamin for your B12 therapy.

(Just wondering if your first FMD based this decision on gene test/gene variation? I'm not good at this but I understand that there is one gene variation that can cause problems with taking any of the methyls).

Well...the Thorne's B complex contains methy folate and methylcobalamin (adenosylcobalamin too, which some people have a problem with. If you've previously been told not to take methyl folate, then the same applies to methylcobalamin (another form of B12) - hence being told to take hydroxocobalamin). So...based on what you were told by your first FMD, you might be reacting to the methyl folate and methylcobalamin in the B complex.

Also note - the B complex contains a high dose of vitamin B6 (371% of the RDA) - this can cause peripheral neuropathy if taken in high doses - but there's no way on knowing if this dose is suitable for you unless you've had your levels checked. Certainly, it would be too much for me, even given that I have absorption problems.

Here's a link to information about vitamin B6 (pyridoxine) safety:

mayoclinic.org/drugs-supple...

So...I can't advise you what to take but based on what you were told by your first FMD and the bad reaction,you feel you've had to the Thorn B complex, sounds like this might not be the one for you.

So...good idea to discuss with your FMD...and perhaps try to find a B complex that does not contain methyl folate and methylcobalamin, and perhaps a lower level of B6 - unless you know,you need it.

If you know what particular B vitamins you're low on, you could always supplement with those individual B vitamins, rather than a B complex. One potential problem with 'complex' supplements is that you might be taking some B vitamins that you don't actually need - or too much of one of the B's - as perhaps in the case of B6). But no way on knowing for sure unless you have your B vitamin levels checked and monitored.

And a last thought...you say your B12 is okay...and in case you're not aware...don't go by serum B12 levels. These mean nothing once B12 therapy has commenced (unless low). The only thing that counts is symptom relief...and anxiety can be symtpom of B12 deficiency. If your symptoms get worse prior to an injection being due, then you may need more B12. If taking supplements (I know these are sometimes prescribed in the USA) and you have symptoms which you think may be B12 related (or if your symptoms never resolved properly) you may need to try injections instead.

Hope you manage to get it sorted and feel better soon. And please post again if you need any more help.

👍

Jefner profile image
Jefner in reply to Foggyme

foggyme

I had an Organic Acids Test and the results came back as follows:-

"high methylmalonic acid marker indicating B12 deficiency, defective absorption or transport. Supplementation may be beneficial". Range <2.3 - my result H3.4

"Pyridoxic acid (B6) levels low. Range <34 - my result 0.95

"Pantothenic acid (B5) levels low. Range<10 - my result 3.0

"Vitamin B2 Glutaric acid levels high. Range 0.04-0.36. My result 0.42

If you look on my profile it shows all my thyroid results and most also show my B12 levels which are very much up and down

Foggyme profile image
FoggymeAdministrator in reply to Jefner

Sorry Jefner, I'm not familiar with the Organic Acids test so I can't really speak to that 😖.

And while B5 and B6 are low, B2 is high - so getting one multi complex to suit the requirements of simultaneously low and high levels might be difficult...at a guess.

Think the best thing you can do is discuss with your FMD (as suggested above)...and perhaps avoid the methyls (though the Organics test doesn't appear to specifically identify these as a problem)...but be advised by what your first FMD told you...especially as you felt that you had a bad reaction to the Thorn B complex.

Sorry...not good at thyroid - best place to get advice about that is in the thyroid forum.

Good luck...hope you feel better soon...it's very tricky, isn't it 😖

Foggyme profile image
FoggymeAdministrator in reply to Jefner

Hi Jefner...an afterthought about your fluctuating B12 levels.

You don't say, but are you on B12 injections. Levels seem a little on the low side, at times, if you are (it's usually to see levels of 1000 or even much higher when injecting B12).

Your low B vitamin levels may be indicative of an absorption problem - has this been investigated? Tested for PA? Tested for heliobactor pylori (bacterial infection of the stomach). Crohn's / coeliac disease?

If on oral B12 supplements in the presence of an absorption problem - may not be absorbing sufficienct for needs (absorption rate - at best - from oral supplements 1%, absorption rate from injections 100%).

Have your folate levels been checked (B12 and folate work together - if folate is deficienct or low in th reference range, body can't utilise B12 properly).

On the absorption issue - checked for vitamin D and iron deficiency anaemia (ferritin levels - one marker for iron deficiency anaemia)?

Just some afterthoughts....

👍

Jefner profile image
Jefner in reply to Foggyme

Foggyme

I do have gut Candida and gut dysbiosis so that isn't obviously helping

You may also like...

I am really stressed and don't know what to do next..

are no plans for further b12 injections either so I am supplementing with b12 oral spray as my...

How do I know if I have PA or just low levels?

Hi I ’m new to the group, I recently got a B12 deficiency diagnosis after months of feeling poorly...

Don't know what to do anymore

d to take daily (800mg) and a phosphate topup. Im still getting breathless and no one will take the...

What is the TREATMENT for PA? Not just B12 but what type b12 and how often?

on what the treatment should be. Is there a standard treatment to get the B12 back to a good range?...

Anemic and don't know why

Hi everyone, I am anemic but yet my b12 and iron levels are fine, my folic acid is actually high, so