Hi people, I have been currently diagnosed with folate deficiency my symptoms are fatigue fast pulse rate and breathless to the point I have to have a ecg hence my diagnosis pins and needles in arms occasionally and hot feet occasionally dizziness and can’t think straight some days. Stay in bed sleeping days away. Headaches. Ringing in my ears. Bare the fact I’m tone deaf I thought the ringing was from that. Headaches from the Depo pill injections and the feet from my arthritis in my knees. I got bloods checked and came back folate deficiency so doctor put my on folic acid tablet 1 a day 5mg. I was just wondering who long till I start getting better. Ohhh and was admitted to hospital in June this year for food poisoning which has racked havoc with my bowel and my infection markers then was 167 which they said was extremely high. So I’m guessing the low folate is to do with my bowel still not any better. Just wondering if anyone had any advice to give me a kick up the bum so I can get a life not my life back just being able to go the shop and not having to come home and sleep after.
Folate deficiency : Hi people, I have... - Pernicious Anaemi...
Folate deficiency
Usually the levels increase quickly on that high dose.My dsughter wax on that dose short term then had s blood test and is now on 400mcg daily.
She felt the difference quite quickly.
Was your B12 tested at the same time.?
It usually is
Yes my b12 was tested and came back normal also had my thyroid checked and that was normal too. Thanks for reply
It really depends on which of the many processes using folate is causing your symptoms as the damage/changes resulting from lack of folate may take a while to reverse once your cells have enough folate.. If you had anaemia as a result of the deficiency that could take a month or so to clear. Nerve damage would take longer but neuro-transmitter problems should start to clear up quite quickly.Were you asked about your diet? If you have a good diet with plenty of fruit and veg in it then that would point to an absorption problem and that means that there is a higher likelihood of also having a B12 absorption problem.
Folate isn't stored in the body so symptoms of folate deficiency tend to develop quite quickly. - months or weeks. If you can trace your symptoms back further (eg a year or more) that may suggest a B12 absorption problem as well.
Unfortunately the serum B12 test is quite difficult to interpret - especially when used as a single point test. B12 is stored in significant amounts in the liver and this is used to regulate seru B12 levels at a point that is right for you which can be very different for different individuals. If someone has an absorption problem then the release mechanism is also affected and becomes less efficient, meaning that B12 is lost and the body is no longer able to maintain serum B12 levels at the point the individual needs them. This means that levels start falling. Unfortunately this also means that if you are someone who naturally sits in the top half of a very large normal range you could be feeling the effects of a B12 deficiency long before it actually shows up as low serum B12. So, falling B12 levels over time is probably the best way to use serum B12 to identify an absorption problem, but identifying drops is complicated by the accuracy of the test which means repeating the test on the same sample could give results varying by 20%, so you are looking either forb long term trends or for drops of more than 20%.
I am 95% certain they came from when my bowel was so infected back in June that’s when my symptoms started about a month after that and they said could take over a year for that to fix itself. So I’m hoping that these tablet help with these other symptoms I go back the doctors in 4 days so hopefully get more answers then. Thank you for your reply
hope you feel better soon
Hi,
Thought I'd just add that if you're on Folate treatment, it's vital that any co-existing B12 deficiency is treated at the same time.
Treating a folate deficiency without treating a co-existing B12 deficiency can lead to neurological problems.
I suggest you access your test results and check what your B12 result was like.
I learnt from experience to always check my results after being told everything was normal/no action then finding abnormal results when i got copies.
Accessing Health Records (England)
patients-association.org.uk...
Some people access test results and medical records with NHS app.
nhs.uk/nhs-app/nhs-app-help...
It is possible to have B12 deficiency with serum b12 results that are well within normal range.
UK B12 guidelines indicate that patients with the symptoms of B12 deficiency should be treated even if their serum B12 results are within normal range.
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Summary of above document
pernicious-anaemia-society....
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
BNF Hydroxocobalamin
bnf.nice.org.uk/drug/hydrox...
NICE CKS B12 deficiency and Folate deficiency
cks.nice.org.uk/topics/anae...
Are your symptoms consistent with B12 deficiency?
Symptoms of B12 Deficiency
pernicious-anaemia-society....
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/...
Next link mentions symptoms of both B12 deficiency and Folate deficiency
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.
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....
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
B12 Deficiency Info website
Guidelines below suggest anyone with unexplained b12, folate or iron deficiency should be tested for coeliac disease.
NICE guidelines Coeliac Disease
nice.org.uk/guidance/ng20/c...
Coeliac Blood Tests
coeliac.org.uk/coeliac-dise...
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
I am not medically trained.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, more B12 books, more B12 websites, more B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
healthunlocked.com/pasoc/po...
Thanks for that I’m seeing the nurse on Tuesday so will ask her my results however if I still feel like this by then I’ll be making another doctors appointment I’m sick of seeing him lately.
Be prepared for there being a lot of ignorance about B12 deficiency among doctors and other health professionals.
If they say to you, "Your B12 results are normal, you don't have B12 deficiency" that is not necessarily true. If you have the symptoms of B12 deficiency they should treat you even if your serum B12 result is within normal range.
BMJ B12 article
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
The summary of BSH Cobalamin and Folate Guidelines link in my other reply, includes the statement
" in the presence of discordance between test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment"
Blog post that mentions misconceptions about B12 deficiency
b12deficiency.info/a-b12-se...
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
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 that health professionals may have.
As I said before it's vital if getting folate treatment, to make sure any co-existing B12 deficiency is also treated.
One of the potential signs of both folate deficiency and B12 deficiency is enlarged red blood cells (macrocytosis). If a person with both folate and B12 deficiencies receives just folate then their red blood cells may appear to go back to being normal sized but the neurological effects of untreated B12 deficiency will continue.
It is possible to have folate and/or B12 deficiency without enlarged red blood cells (macrocytosis) but some health professionals may not be aware of this.
See Point 1 and Point 5 in letter writing link in my other reply.
Point 1 deals with under treatment of B12 deficiency with neuro symptoms.
Point 5 deals with being symptomatic for B12 deficiency with a normal range serum B12 result.
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.
Tests such as MMA , Homocysteine and Active B12 (Holotranscobalamin/HoloTC) may be useful in diagnosing B12 deficiency in someone who has normal range serum B12 (Total B12).
Just to echo Sleepy Bunny's advice, Michelle :
Sally Pacholok, author of, 'Could it be B12 deficiency - an epidemic of diagnoses'
Haemotologist's quote from the video :
"If you treat someone with B12 def. with folic acid, you can either precipitate neurological abnormalities or, if the patient already has neurological abnormalities, you can make them worse. So folic acid should never be given empirically unless the B12 status is normal."
........
Latest BMJ research document:
"If there is concomitant B12 and folic acid deficiency, then B12 must be started first to avoid precipitating sub acute degeneration of the spinal cord."
Sorry but what do you mean in neurological abnormalities? Thanks.
From my own family experience, GPs have been very keen to diagnose folate deficiency without properly establishing whether there was existing B12 deficiency. A family member, who had been misdiagnosed with CFS/ME for many years, therefore, had serious psychotic symptoms after only folate was prescribed.
b12deficiency.info/what-to-...
The video used to be on the old website but I'm sorry I can't find it now.
Hope the website helps in identifying the various neurological problems and whether or not you are actually B12 deficient - much more common than many doctors realise.
Best wishes finding answers
Hi Michelle
Found the video on utube this morning. Sally Pacholok, Ralph Green, MD and another doctor speak about the dangers of folic acid masking B12 deficiency near the beginning :
Another link that may be useful
BNF Folic Acid
bnf.nice.org.uk/drug/folic-...
See Cautions section in above link which says that folic acid should never be given on its own for PA (Pernicious Anaemia) or other megaloblastic anaemias caused by Vit B12 deficiency as this may lead to SACD, subacute combined degeneration of the spinal cord.
I wondered if you have symptoms that are consistent with B12 deficiency whether your GP had tested you for PA?
It is possible to get the Intrinsic Factor Antibody test done privately in UK.
Testing for PA (Pernicious Anaemia)
pernicious-anaemia-society....
PA tests
Intrinsic Factor Antibody (IFA) test
labtestsonline.org/tests/in...
Parietal Cell Antibody (PCA) test
labtestsonline.org/tests/pa...
PCA is not recommended as a diagnostic test for PA in UK.
It is still possible to have PA with a negative result in IFA or PCA test.
About 50% of people with PA test negative on IFA test.
About 10% of people with PA test negative on PCA test.
Gastrin test
Hi,
"admitted to hospital in June this year for food poisoning "
Just wondered if they told you what was the infection was.
H Pylori is one infection that has been associated with B12 deficiency.
H Pylori infection
patient.info/digestive-heal...
NICE guidelines H pylori
pathways.nice.org.uk/pathwa...
Click on blue boxes in flowchart for more info.
Local Guidelines
Each CCG/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on management of B12 deficiency and folate deficiency.
I suggest you track down the local guidelines for your CCG/Health board and compare them with BNF/NICE CKS and BSH links in my first reply.
Some local guidelines are unhelpful so worth knowing what you're up against locally.
See blog post below about a UK area with a poor reputation on this forum for how B12 deficiency is managed.
b12deficiency.info/blog/202...
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Lots more B12 info in threads I linked to at bottom of my first reply.
My infection was Campylobacter bacteria from a burger I ate infection markers were through the roof. My bowel is not the same now but it is getting better.
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