Types of folate and B6 to accompany B12

Hi all! I've been browsing this forum with keen interest over the last couple of months. My situation/experience is very similar to many on here. Two years of visits to GP stating "tired all the time" and numbness tingling in feet (but without linking the two symptoms; nor did the GP). Then 9 months ago things deteriorated: tingling in hands and forearms as well as feet and lower legs (both sides), severe upper back pain, deafening tinnitus, brain fog. This really worried me. Several visits to the Dr and ended up on fluoxetine (nightmare drug) so stopped after 2 weeks, then amitriptyline (tired all the time with no relief). Managed to convince GP to refer to neuro. He asked if B12 had been tested and this is where my research into B12 began! GP dismissed this but tool neuro advice on starting pregabalin. I haven't dispensed this script as too concerned I wouldn't be able to work (self employed medical writer). I then paid to see a consultant haematologist as if done my research on B12 (armed with a list of all my symptoms, BSH guideline and Nice guidance). He advised I start B12 without delay as well as folic acid. Here, as so many have experienced, is where the battle with the GP really began as the haematologist didn't specify regimen. Firstly GP starts off the Q3M (no loading) as my levels are "smack bang in middle of range"! Another couple of visits and presenting the BSH guidance (highlighted) that I should have dosing on alternate days then Q2M. I managed to get a loading dose then he does the script for Q3M... this is when I decided to get some B12 from Germany. My question is, what experience does anyone have of other supplement to go with the B12 - folic acid dose and type?? B6 dose and type?? There are several regimens discussed but I guess it is worth just experimenting with it. Symptoms are still bad, esp the tinnitus and irritability so going to QW SI. Any help would be much appreciated. This forum has kept me going in the midst of all the Dr frustration and feeling of being in limbo

10 Replies

  • Hi

    I have been advised by one of the lovely ladies on here to start these patches amazon.co.uk/gp/aw/d/B072LF....

    I haven't looked into them yet as i will be starting my loading B12 jabs next week

    Hope your well 😊

  • Thanks for the reply MissD1503 but I already have the B12 ampules and am happy self injecting that. It's the other B vitamin that I know the body needs but just not sure on dosing of those and types. As often seems to be the case several suggest the methylated forms. I currently take my B12 with a daily Berrocca type supplement. Symptoms feel bearable so far today!

  • Ah right im still a bit confused after my collapse last night can't read property yet my eyrs hurt l.

  • Sorry to hear that. Good to hear you'll be starting your loading dose soon and hope the B12 starts taking effect so you can start to feel well again

  • For most vitamins it's best not to supplement unless there's a diagnosed deficiency.

    For folate the best source is a good diet - plenty of leafy green veg, pulses, nuts, etc. But taking a supermarket supplement (200 ug a day) should be OK.

    B6 can be harmful in large amounts, so I wouldn't take any of that.

  • I agree with all of that Eaoz. I'm aware of the paradoxical Symptoms you get from too much of some of these B vits which makes it difficult to gauge if they are helping or making the nerve issues worse. I fought for the B12 as I was determined that I didn't want permanent neuro damage as suggested by the BSH guidelines. I have tried to up my intake of the green leafy veg as much as poss recently. Thanks

  • As Eaoz says "it's best not to supplement" without first ascertaining the levels which is why I always suggest finding them out first as our "needs" are as different as we are people.

  • Fair point. My levels with the serum B12 unreliable test were right in the middle of range. Subsequently told the GP I was taking a B supplement at the time. His response was to wait 3 months with no B vitamins to ascertain a baseline. I decided against that advice and pursued getting the script for injections. I think I suffer with impatience though, but know I need to wait and see now while getting the shots. Just so frustrating when you feel so bad on most days

  • I have to take metafolin, and read the best one was solar, if I don't take it, the b12 saps me and end up feeling worse than I started, I also have to take potassium, I start with metafolin then b12 then potassium

  • Thanks for that Lizreds1. I have about 1 day of feeling almost normal then feel rubbish until the next SI and the cycle starts again. I'd be tempted to try methylfolate rather than the folic acid I've been taking.

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