health.ucdavis.edu/news/hea...
Found this article very interesting. I used to take 5mg of folic acid every day for goodness knows how long but it was years. I even shared that on this forum. Not so long ago I spoke to a new GP and she said just stop it now. Plus it was extremely high at my last blood test.
it’s a minefield. Is there people on the forum that don’t take any folic acid? Or what do people take? Thanks for reading 😃
You couldnt pay me to take 5mg daily of folic acid indefinitely. Not for a million pounds a day . I dont supplement folic acid/folate at all, but I dont have absorption issues. I've even read a hypothesis that high folic acid could adversely effect active B12:
"We hypothesize that excessive intake of folic acid depletes serum holotranscobalamin (holoTC), thereby decreasing active vitamin B-12 in the circulation and limiting its availability for tissues."
pubmed.ncbi.nlm.nih.gov/346...
You need sufficient folate, NOT excessive amounts. If you dont need it - don't take it. Many people with PA do fine on 200mcg-400mcg a day but if you have a high folate diet and no problems with its absorption, you might not even need this.
I took my GP’s word as gospel. You are right in what you say Technoid x
I concur with the quote in the article:
"The defined daily safe upper limit of folic acid is one milligram. Until we have more information, it would be prudent to avoid extremely high doses of folic acid unless it is medically indicated."
IMO no-one should be on 5mg Folic Acid indefinitely unless theres some excellent medical reason that justifies that kind of enormous dose. Remember 5mg is 25 times the RDA... Thats 25 times more than the highest amount that most healthy people would need. It makes sense only in deficiency and/or severe absorption issue contexts.
I know, it shows how ill advised and vulnerable we can be. That article is from the BMJ so its significant research x
When I was first found to be B12 deficient, and unresponsive to treatment (6 loading injections, then one every 3 months), my GP thought it possible that, of all my symptoms, my hair loss and bleeding gums could be due to ferritin or folate deficiencies. I was low, but in range, for both, so was given 3 months' supplements then retested. It was enough to get my levels back on track - for a while.
Luckily, my GP was regularly monitoring my levels, without bothering with B12 levels which were (and still are) very high, due to frequent injections. She told me when to get a gentle folate or ferritin supplement and when it was time to stop. I think it took about two years to stabilise folate and ferritin at healthy levels this way, especially when an Oral Medicine consultant wanted ferritin higher at 80 ug/L - a struggle to get there but I did.
Although I no longer bother to ask for regular blood tests, I am fairly confident that I would recognise a need to ask now. I do not supplement either any more. So slow and gentle seems to work given time.
I agree with Technoid - long-term high-level supplementing of folate does not make any sense. 5 mg is extremely high.
Ferritin levels, by the way, which can prove symptomatic at below 60 ug/L, and is useful at 80 ug/L , can be not only bad for you at high levels, but difficult to reduce.
Thanks Cheryl, I was s bit similar to you in some ways in the early days and had to take ferritin and folic acid. It wasn’t reviewed initially and then my GP supported me and I was to continue with 5mg folic, so I thought that must be right and never questioned it, especially when I was feeling well for the first in a long time. I then saw a post on here and the comments certainly got me thinking. I then had the discussion with another GP and she said stop folic completely. So now I know! 😀
We are all used to doctors and consultants who do not know much about B12 (or what being deficient can do to you) - but I wouldn't have thought twice about taking folate as advised by my GP either. In fact I didn't, I took her word.
But then I had an extraordinarily good GP - and that part is just geographical luck !
Being really ill with B12 deficiency, especially if it affects your cognitive ability, your concentration and your memory (among other problems), makes trawling through information and research papers so difficult. Sometimes you just can't take anything in.
It can help to double-check here. Not medical professionals - but some here can point you to the information you need to make your own decision, and even interpret it for you if you are struggling.
Hopefully now on the right track.
Thank you, very well now…and learning how to look after my health and live with PA. Hope you are well too x
We all are learning - including medical professionals - and there's clearly still more questions left unanswered.
Glad you are doing well, Miss-guineapig - me also.
Hello. I'm sorry I don't know more about the folic itself per se, but here is what I do know mostly from researching, reading, and experience. I am now taking 1 mg tablets of folic acid along with B12 sublingual. I had weekly shots for a loading dose about 2 months back. 2 excellent books on the subject: Could it be B12 by Pacholok & Stuart and What you need to know about Pernicious Anemia and Vitamin B12 Deficiency by Martyn Hooper. I have these two books (ordered from Amazon).
I know my wife and I have what we call "the knife", which is a nerve pain that shoots through our back/hip area. We both have all the usual symptoms of B12 def. That nerve pain feels like back spasms and is not pleasant. After taking B12 and folic acid it got better for me, but I believe what I've learned is like they say in the books, it takes about 6 mos. to 1 year to be back to what one may call normal (or better). During the 6-12 months, you yo-yo back and forth a bit and the symptoms don't just get better and better each day.
It's a bit confusing really, almost as if your improvement is somewhat like the deficiency itself, confusing. I know some days I feel much better only to feel bad again the next day. All that I've written here is what I have been experiencing, as I am not an expert of course. We now simply order B12 sublingual liquid, tablets, met-in-your-mouths, lozenges, and even patches all to try to have plenty of B12. So what we (wife and I) now know is once you start treatment for B12 deficiency (and/or Folic acid deficiency) it's not just one day you start and soon you'll be just dandy.
As I said above it's an interesting trip through treatment. We've learned that it's a take it one day at a time thing. What I've learned is that if I am folic acid deficient, I am also B12 deficient. My lab test proved it. However, after my initial loading does, my primary care doctor refused to give me any other shots of B12 because she said the insurance won't approve it. After debating about it, we just are taking the situation into our own hands, no more doctors. Good luck.
Thank you so much for sharing your story and for information. Great to read what other people experience too. Keep well Mr Justatip x
Sure, no problem. One other thing I forgot to mention. A while back we were reading an article that was discussing how people often have issues with absorbing Vitamins in their stomachs, so it got me thinking about the food we eat. I went to the kitchen and after about 30 minutes or so I found only one product that contained Vitamin B12 or any vitamin for that matter. That one product was a bottle of Body Armor drink. It was the only thing I found that listed B12 or any other vitamin in the contents. So if we made a meal with a can of corn - no vitamins, or a can of peas - no vitamins, etc.
One doctor tried to convince me that my diet is the problem I'm B12 deficient and it's because of my age that since I'm older I can't absorb vitamins from food like I did when I was 29 or so. OK, so let's see if you eat something that has no vitamins in it, how much trouble will you have trying to absorb those nonexistent vitamins? The whole point is our food these days are depleted of vitamins. What are we really eating? We will spend more money on Vitamin B12 and Vit. D, folic acid, etc. I hope your food there is better than ours here. Good luck.
Folic acid and methylfolate
More Folic Acid Safe?
