Supplementing B12 & Folate advice please

[Jaydee1507]

Advice please.

I'm supporting someone in a MCAS group on different platform. She struggles to undertand how to use this group so I have volunteered to ask something she is unsure about.

She's had long term ME/CFS, recently diagnosed hypothyroid but also Spontaneous urticaria and angioedema which I believe may be linked to her low thyroid status. Her Folate was recently below range but has now peeped into the normal range following adding broccoli to her diet. Her diet is very limited due to reactions to various foods, and over time restricting food groups due to possible intolerances and trying her best to heal herself pre hypo diagnosis.

She has been getting advice from a B12 group, also Thyroid UK. I have fed back to her what would be said here ref raising Folate and supporting her thyroid function. The trouble is that the three different sources of advice are saying slightly different things! Her B12 looks at least in range at the moment and she is taking baby steps to start on Levo by 1/2 tablet a day. She is concerned that she may have B12 deficiency also, due to reading the B12 group and needs to know the best way to introduce supplements for Folate and B12 (plus of course the others recommended here).

Her Ferritin and D3 are good due to previously seeing a nutritionist.

Thanks for your help.

[shaws Administrator]

Before the woman supplements with B12, her GP should ensure she doesn't have pernicious anaemia as that condition requires regular B12 injections every few months.

My mother had P.A. but later on her GP told her she didn't need any more B12 injections 'as her bloods were fine'.

Both my sister and I thought this advice was 'good' but unfortunately this statement by the GP caused my mother to develope stomach cancer which caused her early demise.

[Jaydee1507 Administrator in reply to shaws]

I'm sorry to hear about your mothers treatment. I have read all sorts of awful things about PA treatment, people being told they no longer need it or switched to tablets. It's quite shocking.

The lady has been checked by her GP for PA and told everything is good. Hopefully that is the case! She knows that the b12 test is only 40-60% reliable though, and in that her Folate was under range (not least due to hypo, but also lack of folate containing foods in her diet) she is unsure how to proceed. She has been told that a low folate result can give a false B12 high.

From what I read here, B vits need to be balanced together, hence the advice for taking a B complex. I think she is planning on adding Folate now and working on B12 later. Does that sound right?

[witchcat43 in reply to Jaydee1507]

She could try taking 5mg folic acid for 3-4 months then get B12 and folate retested. If she’s taking a B complex there shouldn’t be more than 10mg of B6 as it’s toxic…take B Complex for 4 months then have a 2 month break then repeat.

[helvella Administrator in reply to witchcat43]

5 milligram folic acid is a prescription-only medicine in the UK.

We here on this forum, and those on the Pernicious Anaemia Society forum have seen all too many members suffering from taking such a large dose of folic acid. An excess can cause many symptoms.

A simple 400 micrograms of folic acid, taken every day, should keep her level up. But it is important to re-test both folate and B12 to check that it is.

Taking 1000 micrograms of B12 daily would be very likely to ensure that B12 is also kept at a good level.

(Normally a bad idea to start folic acid when B12 is low. But if B12 is reasonably within the reference interval, albeit low, it is unlikely to be an issue.)

[witchcat43 in reply to helvella]

To be honest I’ve only ever taken 1000mcg of folic acid and it just keeps my folate around the 15 mark which some say is a bit too low, but it works for me.

[helvella Administrator in reply to witchcat43]

If a re-test shows 400 micrograms is not enough, it would be reasonable to increase slightly. But still being cautious.

[witchcat43 in reply to helvella]

Caution is always good. When I took 400mcg I struggled to get my folate over 8…possibly due to injecting B12 every 3rd day…it was all being used up, with 1000mcgs I can stay ahead of the game. We are all different so what suits one won’t suit everybody…it’s trial and error.

[Jaydee1507 Administrator in reply to helvella]

Brillant, thanks so much. I will pass that on.