I'm new and have a question about folic acid

[bethhb]

Hello, I am 21 years old and I have been recently diagnosed with PA. I have had all my loading injections. My level of B12 went up to over 1000. My results after 11 weeks showed it had fallen to 300, but not as low as it was. My GP said was within normal range although I was feeling very tired. I am now going to have 1mg of hydroxocobalamin injections every 3 months. My question is about folic acid. I was prescribed 5mg a day. I have been taking it for 4 months and it has been put on repeat prescription. I have read that it should only be taken for a short period of time and not indefinitely. My review for the folic acid on my prescription is November which would be 7 months of daily tablets? Thanks in advance of any advice.

[Gambit62 Administrator]

Do you know what your folic acid levels were when your last B12 test came through?

Depending on when you had your B12 checked 300 doesn't sound like a good level for someone who has had loading shots and implies that you probably do need B12 more frequently and that was why you were feeling tired again. After loading shots B12 levels in serum don't mean anything unless they are LOW - and personally I would regard your levels as potentially low. With B12 deficiency it isn't the amount in your blood that counts - it is what is going on at the cell level.

If you had neurological symptoms (tingling/pins and needles) - or psychological symptoms (depression/anxiety etc) then you should be on 2 monthly maintenance - you may need to point your GP at the BCSH guidelines - p8 on that one though.

bcshguidelines.com/document...

I think you also should discuss the folate with your GP as it isn't recommended to treat a folate deficiency in the presence of a B12 deficiency. I don't quite understand the mechanisms involved but there are concerns about severe damage to the nervous system if folate deficiency is treated on its own and the recurrence of your symptoms implies, despite the (potentially mistaken) opinion of your GP that you are being left B12 deficient at the cell level on the treatment regime you are currently receiving.

Unless you have a serious problem processing folate the levels that you have been prescribed are way over the top for what you need so please do discuss with your GP.

[bethhb in reply to Gambit62]

Thanks for your reply, this is such a worry and I don't know anyone who has the same condition. I was suffering with repeated tonsillitis and tiredness and night sweats and I thought I may have glandular fever. My bloods showed I was low in B12 and folic acid. At first my GP made me eat more folic rich foods, I think he suspected as a young woman I may be a faddy eater. That made no difference and my levels were lower after a month. After my loading jabs my b12 went to approx 1000 (blood test was done after 3 weeks). 300 was at 11weeks (23rd Aug) post my last loading injection. I know my folic acid was very low as was my b12 and I started on them both. It is so confusing. My GP ruled out other conditions such as coeliac disease from my blood tests. I had my b12 injection again today but I don't know what my folic acid result was.

[Gambit62 Administrator in reply to bethhb]

assuming you are in UK then you are entitled to copies of your medical records - which includes your test results. There can be an administrative charge for making them available but this can't be punitive

[clivealive Forum Support]

I don't know if this is any consolation bethhb but I have been taking 1 – Folic Acid 400μg tablet every day for many years plus I eat green vegetables like broccoli and it is added into my breakfast cereals.

I'm not medically trained but my last Folate level in March was 18.2 ng/mL Range 3.10-20.50 so it was classed as NORMAL

However I've had P.A. and monthly cyanocobalamin B12 injections for 45 years so maybe the one balances the other.

I wish you well

[bethhb in reply to clivealive]

Thanks clivealive that is reassuring. I will pop back to my GP and ask what I should do before returning to university

[BethattheBeach]

bethhb, I also keep a diary of the symptoms and their severity if they reoccur. This will be important as the years unfold and may very well be pertinent as you try to settle on the best frequency of injections. Good luck.

[bethhb in reply to BethattheBeach]

Thank BethattheBeach this advice all helps. It is a little overwhelming at the moment. I telephoned my GP practice today and they said that I have to continue on the folic acid and my Dr will do another blood test and review in November. I am going to ask tomorrow for a print out of my blood test so I can keep an eye on things too.