Hey,
I was wondering if anyone experienced feeling worse when taking folic acid for deficiency? Currently two weeks in and I feel so weak. Also taking B12 supplement, vitamin C & D. I would persevere if knowing at some point I’ll feel better, just concerned that I’m feeling worse.
How much folic acid? And was it prescribed by a doctor?
It’s 5mg and yeah prescribed by a doctor for a deficiency.
I would speak to the doctor, explain how you feel, and suggest that you try stopping the 5 mg tablets and switch to 400 mcg supermarket folic acid.
Hi,
I was wondering if it was possible that you also had a B12 deficiency.
Link about "What to do next" if B12 deficiency suspected
b12deficiency.info/what-to-...
Treating folate deficiency without adequately treating a co-existing B12 deficiency may lead to neurological issues.
It's possible to have severe B12 deficiency symptoms with serum b12 levels that are well within range.
I have included a lot of links to info below so you may want to take a few days to sift through them.
Symptoms of B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
cks.nice.org.uk/topics/anae...
Symptoms of Peripheral Neuropathy (damage to peripheral nerves)
nhs.uk/conditions/periphera...
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
Sometimes after B12 treatment is started there may be a drop in potassium levels. Has your GP checked your potassium levels?
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Do you have your actual blood test results for B12, folate, ferritin or other iron tests and full blood count (FBC)?
UK B12 documents
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Summary of above document
pernicious-anaemia-society....
BMJ B12 article
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
BNF Cyanocobalamin
bnf.nice.org.uk/drug/cyanoc...
BNF Hydroxycobalamin
bnf.nice.org.uk/drug/hydrox...
See section on "neurological involvement" if you have neurological symptoms.
NICE CKS B12 and folate deficiencies
cks.nice.org.uk/anaemia-b12...
cks.nice.org.uk/topics/anae...
BNF Folic Acid
bnf.nice.org.uk/drug/folic-...
Each CCG/Health Board/NHS Hospital trust in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency and also for folate deficiency.
Worth tracking down local guidelines for your area of UK and comparing them with BSH/NICE CKS and BNF links.
Guidelines below suggest anyone with unexplained B12, folate or iron deficiency should be tested for coeliac disease.
Have you been tested?
NICE guidelines Coeliac Disease
nice.org.uk/guidance/ng20/c...
Coeliac Blood Tests
coeliac.org.uk/coeliac-dise...
If you think it's possible you may have PA (Pernicious Anaemia), worth joining PAS who can offer support and info.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
Blood tests
b12deficiency.info/b12-test...
Macrocytosis
patient.info/doctor/macrocy...
Full Blood Count and Blood Film
labtestsonline.org.uk/tests...
patient.info/doctor/periphe...
Folate Deficiency
patient.info/doctor/folate-...
Iron Studies
labtestsonline.org.uk/tests...
Some on this forum also have thyroid issues.
Suggest you put any thyroid results on Thyroid UK forum on HU.
Thyroid tests
thyroiduk.org/getting-a-dia...
Have your Vitamin D levels been checked?
Two useful B12 books
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment info in book is out of date. See BNF Hydroxycobalamin link in this reply for up to date info.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Point 1 is about under treatment of B12 deficiency with neuro symptoms.
Point 5 is about being symptomatic for B12 deficiency with an in range B12 result.
Link above has letter templates covering a variety of situations to do with B12 deficiency.
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion. Keep copies of any letters sent or received.
CAB NHS Complaints
citizensadvice.org.uk/healt...
Local MPs may be worth talking to if struggling to get adequate treatment.
Vital to get adequate treatment for B12 deficiency. Untreated or under treated B12 deficiency can increase the risk of permanent neurological damage.
Neurological Consequences of B12 Deficiency
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord
pernicious-anaemia-society....
Best advice I ever got was to always get copies of or access to all my blood test results.
I was told everything was normal and when I got copies, I found abnormal and borderline results.
Retention of UK medical records
bma.org.uk/advice-and-suppo...
Don't rely on there being evidence of a past diagnosis of PA (Pernicious Anaemia) or other cause of B12 deficiency in current medical records.
If you get proof of diagnosis eg positive test result/letter from specialist confirming diagnosis etc keep a copy in a safe place in case you need it in the future.
Accessing Health Records (England)
nhs.uk/using-the-nhs/about-...
england.nhs.uk/contact-us/h...
patients-association.org.uk...
B12 article from Mayo Clinic in US
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency.
I've written some very detailed replies with more B12 info eg more B12 articles, b12 websites, B12 books etc in threads below.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I am not medically trained.
Thank you for your detailed explanation. I’ve had full blood work done and so far it’s came back with folate deficiency. I’m due to get my bloods done again in 4 weeks.
What was the B12 result? There is a grey area where you might have levels that are in the normal range but are still low enough to cause problems.
It is possible to have Functional B12 Deficiency, where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so the patient develops symptoms of B12 deficiency.
Article below mentions Functional B12 Deficiency.
Article about serum B12 test
(From Dutch B12 website - units and ref ranges may vary from those in UK)
Hi Sleepybunny, I've had PA for years but admittedly was, and still am, very ignorant about all the various effects it can have on a person, the PAS has been amazing, I'm learning new things every day.Anyway, I asked my GP for blood test as I was becoming symptomatic a few weeks before my next B12 jab was due. My B12 levels were >2000 but my folate was low and I've been put on a 3 month course of folic acid tablets. Can low folate effect the abortion of B12 or does it just effect the production of good red blood cells.?
Low folate cannot affect the absorption of B12. Even if it did, you are having injections (I presume) thus bypassing any absorption problems.
A lot of the symptoms of low B12 can be ascribed to a functional folate deficiency. There are lots of different types of folate that get recycled into each other (see diagram). The conversion of methyltetrahydrofolate (MTHF) into tetrahydrofolate (THF) needs B12. If there's not enough B12 then all the folate in the body gets stuck as MTHF and there isn't enough of the other forms.
Those other forms are needed to make DNA. So if there's not enough B12 then the body finds it hard to make DNA. That's why a B12 deficiency can result in large red cells.
Hi fbirder,Absorb was the wrong word to use.
I do get injections, it was every 12 weeks but then reduced to 8 weeks a few years ago. 5 years ago I was diagnosed with Genetic Haemochromatosis, my body stores iron. The treatment for that was, and still is, removing 1 pint of blood every 12 weeks, which at that time was the same frequency as my B12 jabs.
I didn't think much of it at the time but after a while I started feeling a bit run down a few weeks leading up to my next jab. I then found that B12 was involved in the production of red blood cells and discussed this with my GP and the possibility that the venesection was affecting my PA but he said that it was unlikely and more likely that it was my age. I then discussed it with my haematologist, she wasn't sure but said that it wouldn't do any harm to move my B12 jabs to 8 weekly authorised it.
For a while I was feeling fine but at the start of 1st lock down last year I had a jab appointment cancelled, by surgery receptionist not GP, she said the nurses had been re-deployed to help in the covid wards.
At the time of my next jab appointment (now 16 weeks without a jab), receptionist tried to cancel appointment again, told me to get B12 tablets from a pharmacy. I told her that I had PA and was starting to experience neurological symptoms and needed my jab and asked to be referred to my GP.
GP didn't know anything about cancelled appointments or nurse re-deployments, the nurses were still working so no reason to cancel and reinstated jabs. My neurological symptoms have never got worse but never really improved much either. I do start feeling slightly better a few days after my jab but it never seems to last until my next jab.
My thoughts are that the cancelled B12 jab has set me back and I am now in some sort of permanent catch up, if that is actually possible.
I explained my symptoms to my GP, constant tingling/burning sensation in my feet, frequent muscle aches and pains, occasional tinnitus, bouts of vertigo, fatigue, He arranged blood tests last week and results apparently shows B12 OK (>2000) but folate low (no value given) and 3 month course of folic acid prescribed.
I had planned a self injected re-loading dose of B12 to try and get me back to 100% but with the low folate result, I've decided to put that on hold for now.
Sorry for the long winded reply but just trying to give a bit of background into my current state and also just found that folate is involved in the production of red blood cells but had no idea of the interaction between folate and B12 and trying to find out more about it.
Hopefully I will start feeling more normal soon.
Every day is a school day.
If I were you I would -
As the GP for a referral to a neurologist to investigate the cause of your neuropathy.
Start a symptom diary. That makes it easier to track how they vary with your B12 injections.
Stick with the folic acid. See what your levels are in 3 months and if you feel any better.
Ask the doctor for more frequent B12 injections. To give you some ammo - here's a letter to the British Medical Journal from a retired doc who needs jabs more frequently that 8 weeks. - bmj.com/content/369/bmj.m13... - your symptom diary should help as well.
If you're OK with it, consider self-injection.
Thanks for your advice, I'll start a diary. It would make sense to have a more detailed account to show to GP.I have the Hydroxo but haven't ordered the needles and syringes yet.
My wife is not happy with the thought of me self injecting, me too to be honest, but in my opinion it's the quickest and most cost effective option to at least try as a next step. I just wish my GP would see it like that. Referrals, neurologists, test all take time.
Thanks again for your help.
Have you tried the methylated version of folate? Some people cannot process synthetic folate and it becomes toxic to the person. It is related to an MTHFR gene variation. I have not looked extensively on this forum but so far I’m not seeing anything about this subject. It doesn’t hurt anyone to take the methylated version of folate. It is just a more easily absorbed version of folate for anyone. My uneducated guess about difficult to treat anemia is that the MTHFR gene variation could very well be a factor.
How much vitamin c do you take ? Can interfer with b12 and other vitamins.
I was folic def also. Took tablets 3 months was worse. Did not know I was also Vit. B12 def. rea up my friend, read up. Take B12 (methycobolamon sublingual).
Hello, I had been dx with Folic acid deficiency and my PCP prescribed Folic Acid tablets. About 3 months later I was eating lunch one day and began to have problems catching my breath. I was sitting on the couch and then passed out. My wife woke me up wiping my face with a wet rag and all of a sudden I began crying. I mean crying as if someone just said my mom died. It was uncontrollable crying. My wife thought maybe I was having a stroke or heart attack. She called 911 (we're in the U.S.), and they came out and when they walked into the house I began crying even more. OK, so it was then that I knew something was seriously wrong and so I order two books (see below). My latest lab report showed I was low in folate, but of course, if you are low in folate you are also low in B12, almost every time.
So now we both have B12 deficiency and we are taking B12 injections (methylB12 only) and we are finally (maybe/hopefully) getting better. This is after we took B12 (cyanocobalamin) shots for 6 months with yoyo-like improvement. The doctors at least over here, do not know anything about vitamins (or just don't care because B12 shots don't make enough money for them). We just recently went to our previous Dr. whom we really liked, but she refused to give us B12 shots at all and became very upset (and angry) at us saying she is not a vitamin clinic. So you MUST take it upon yourself to learn what to do or you will slip into the emotional state that I was in.
Here's the books: Could it be B12? by Sally M. Pacholok and Jeffrey J. Stuart and What You Need to Know About Pernicious Anaemia & Vitamin B12 Deficiency by Martyn Hooper.
Hope you feel better and Good luck,
Mr. Just a Tip
Folic Acid if doing SI
Advice on Folic Acid.
folic acid requirements help
Folic acid and methylfolate
