Hi I am new here but would just like to ask a question on this post. My Doctor has prescribed me 5mg of Folic Acid for 3 months, they said my Folate is too low at 2.4 I have never had any B12 or any other meds for this type of problem. I am however worried that this high dose is too much your help and advice would be greatly appreciated thank you.
I do also have bad numbing/tingling down both my arms and halfway down my back to my waist it is like my arms are just a lead weight and cant move them for about around 1 to 2 minute.
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Sk1ppy
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5 mg is a huge dose , but OK for 3 months , but no longer . You can overdose on folic acid , but not on B12 . Have you had your B12 tested ? I feel that it should be tested as you have symptoms of possible B12 deficiency .
No I havnt had my B12 tested. I have just had a 3 part MRI on my neck, and full spine. I have numbing and tingling down both shoulders/arms and to my lower back. I also have these white blotches as were mentioned in a post. All these and other factors like tummy problem like hiatus hernia, trouble swallowing and now lost 14lb in weight.. I am thinking there seems to be too many things in connection here.
Yes i have those white blotches on my legs too ! Vitiligo . i had numb feet for a very long time , which i now know was caused by P.A My doctor was useless i had very low B12 i found out much later but was sent on my way . I went to a private doctor who diagnosed Pernicious anaemia
(. positive Intrinsic Factor Antibodies test ) A negative test does not disprove P.A. That’s incredible that you have had MRI scans but no B12 evaluation !
P.A starts in the gut . Do not do any supplementation of B12 before you get B12 tested as it could skew the result .Get tested asap ! Just beware . — The medical
What is your diet like in terms of folate? If it is good then that would suggest an absorption problem. If you have a folate absorption problem that makes it more likely you will also have a B12 absorption problemHow quickly did your symptoms develop. Folate isn't stored in the body so is much more responsive to a dietary deficiency or absorption problem and symptoms develop uite quickly.
B12 is stored in large quantities in the liver, and this is used to regulate the levels in the blood at the point that is right for a given individual. If you have an absorption problem then the release mechanism is also affected so levels drop but this can take years or even decades so symptoms come on much more slowly and often aren't noticed until they start to snowball. Serum B12 is also a difficult test to interpret from a single result - but can be used to see if levels are dropping significantly or there is a downward trend over time which would indicate an absorption problem. Unfortunately the test isn't very accurate and results vary by 20% on the same sample so you would be looking for drops outside this range to confirm an absorption problem. This is one reason why evaluation of symptoms is so important.
if you have any Gps merrily prescribe xxxprazols, you certainly will have a b12 deficiency.my late husb and suffered all his life with a bad hiatus hernia. Try to solve the absorption issue. taking med even 1 daily has the absorbtion of vit Bs. I am horrified so many people with this probs and medics not interested.my late hubby had a blood issue, and anemia hasn't helped. It was a serious condition he passed on, but won't mention precisely. Be extra careful if any parts belonging to lymph system YOU DO NOT HAVE.He was missing all but spleen. GPS merrily prescribe xxx prazoles, but NOBSY CARES a side effect.malabsorption of vit b in general.and Bs are extremly important for nervousb system well functioning, skin....
You seem to be well informed and have obviously taken the trouble to read extensively through this site - great!
I thought in the UK (it certainly has applied in my area of East Anglia for about a couple of years) that if you have a test for folate they automatically test your B12.
This really should be the protocol across the board as while high folate per se (caveats to come) is not a problem in itself, it is able to mask the symptoms of a B12 deficiency which, if left untreated (as in your case) has serious and damaging consequences.
It is therefore vital/essential/imperative that treatment to rectify a B12 deficiency is started before folic acid is given.
Now for my caveats! 😃
Last one first - in theory B12 supplementation should be given according to symptoms and at the moment very few medics are aware of this. B12 is not toxic and has no official upper intake limit. Few medics know this either.
Some people have absorbtion and metabolism problems with B12 meaning that they must have high levels of injected B12 to reduce the symptoms of B12, even when oral supplementation is able to increase the blood serum levels to "cure" the B12 deficiency on paper. This is also little recognised within the medical profession - hence our problems and this wonderful group.
Next...
Technically folate is food-derived vitamin B9 and is not a problem, except in extreme cases of intolerance. It is used in the body as 5-methyltetrahydrofolate and is available in this form as a supplement. If you take too much methylfolate it can give you a headache from hell.
Normally if vitamin B9 supplementation is needed then folic acid is used. It is usually available in 400mcg from pharmacies, or 5mg tablets from Drs. If high levels are used for a long time it is possible to get an excess of unmetabolised folic acid building up in your body.
I was prescribed 400 twice daily and have been on them for a while now but wasn't aware you can over dose on it until reading some of your replies.I went on to be deficient in B12 and now on injections - make sure they test yours because low B12 makes you feel awful. Good luck
The taking of PPIs ( Proton Pump Inhibitors )over an extended period , like Omeprazole is one of the reasons for VitaminB12 deficiency . They annihilate stomach acid which is essential for the absorption of the most difficult to absorb Vitamin B12 ( which also requires the Intrinsic Factor ) Its astonishes me that your doctor has not thought of this , but you have had all those MRI scans, but not the more simple B12 assessment!
Do bear in mind that you can have a normal B12 reading , but still have P.A. / b12 deficiency ( but does your doctor know this fact? ) . SYMPTOMS should be treated , not test results . A course of 6 injections over 2 weeks would be a first move . B12 injections are very cheap . Cheaper than several MRI scans ! b12 injections are harmless if you do not actually need them . It may be that Omeprazole has caused your problems . But that doesn’t rule out P.A. of course .
"In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment "
I take this to mean that if you have the symptoms of B12 deficiency you should be treated to avoid neuro damage, even if test results are normal range.
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
Table 1 in above article is about frequent misconceptions about B12 deficiency.
Two B12 books I found useful (both also mention folate deficiency)
"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 B12 treatment info is out of date. See BNF links in this reply.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
I've written some very detailed replies in the threads below which may have B12 info you might find useful eg causes of B12 deficiency, books, articles, UK B12 documents, B12 websites along with a few hints about managing unhelpful GPs.
Hi, your B12 would have been tested the same time as your folate levels. On a blood test form it's under the same title that is ticked by the doctor "B12 & Folate". Is this the first time you've had this? I've just had my 3rd blood test for it and received a text saying that they need to discuss results with me, so can guarantee I have it for a 3rd time! I have no idea why it keeps going low. 😏 Take care x
I havnt got new 1s yet. I asked Doctor for ALL my medical records but Im having a hard time getting them ☹️ Im going to try again tomorrow (Monday) I also have an appointment for my knee injections Wednesday and will bug them again 😁
Well done Nackapan, I hope you have filled a form in at your Doctors for all your medical records so you can share them with the NHS site. I finally got all mine cept for some tests they wont show like MRI/CT/Xrays etc but most else are showing. Hope they keep updating things fingers crossed 👍
I asked Doctor for ALL my medical records but Im having a hard time getting them ☹️ Im going to try again tomorrow (Monday)
Might be worth putting the request into a formal written letter as probably harder to ignore.
When GP surgery receives this sort of request, I believe it has to be signed off by your GP which may take a few days if your GP is absent/part-time.
GP surgery can refuse the request if they believe that to give you the info could cause harm to someone but as far as I know they would have to inform you if they felt this way and I think you can appeal.
Suggest you look at links below....
Under GDPR legislation, GP surgery has a set time to respond to this type of request. I think there may be some flexibility due to pandemic in how long GP surgery can take.
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 PA diagnosis or evidence of B12 deficiency eg positive Intrinsic Factor Antibody test result/letter from specialist confirming diagnosis/ test results showing low serum B12, low active B12, raised MMA, raised homocysteine, raised MCV, raised MCH etc keep copies in a safe place in case needed in the future.
Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency and probably separate guidelines for folate deficiency. I recommend you get hold of the local guidelines for your area of UK and compare them with BNF, BSH and NICE CKS links in my other reply.
It's good to know what you are up against locally....some local guidelines differ from advice in BNF/BSH/NICE CKS links.
I hope you are not in the area below which has a poor reputation on this forum for treatment of B12 deficiency.
Some UK local guidelines have been posted on this forum so may be worth searching forum posts for "local guidelines" or try an internet search using " name of CCG B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health Board asking for a copy.
"I have just had a 3 part MRI on my neck, and full spine. I have numbing and tingling down both shoulders/arms and to my lower back"
Have you considered getting hold of the MRI report. See links about accessing medical records.
Both B12 deficiency and I think more rarely folate deficiency can increase the risk of developing damage to spinal cord. See links about SACD in other reply.
Blog post from Martyn Hooper's blog, mentions SACD
I am not fully conversant with all this or abreviations/medical terminology sorry Sleepy.
I have had a test where they put a tube/camera down my throat into my tummy, and a biopsy was taken. It came back with Haitus Hernia, couple other things which I cant remember the name of sorry.
I was also sent for a pH test where they put a tube down my nose with a box connected to my waist for 24 hours, that came back with high results and specialist wont operate because my BMI is too high its 33.
None of the other tests have been done or mentioned.
This might help - though it is biased towards thyroid issues:
Abbreviations and Acronyms
Some years ago, I started compiling a list of many of the abbreviations and acronyms that appear on the Thyroid UK forum ( healthunlocked.com/thyroiduk/ ) regularly. The idea was to make it relatively quick and easy to look up abbreviations and acronyms without being waylaid by the many irrelevant possibilities that web searches tend to return.
I continue to update the document quite frequently!
You might never have downloaded a copy, or not for some time, perhaps months or years If so, I suggest you download a copy and save it (or a shortcut) somewhere easy to find.
Please, if you think there is anything missing or wrong, let me know. Post on the forum or send me a Private Message.
If I have posted this because you asked about, or referred to, an abbreviation or acronym, please take this as intended, a way of helping you now and into the future. Not a criticism that you asked.
I have just read that link and that sounds exactly like me except I fell down a flight of stairs and damaged my lower back, this happened 3 times because of losing my balance, then all the rest of what he mentioned has happened to me and I am getting blurry sight now 😢
"Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD
I'm not good at explaining proprioception but it's awareness of where your body is in space.
If your balance is poor when it's dark, or when your eyes are closed or when something blocks your view of surroundings then worth checking proprioception.
I found it harder to walk in a straight line at night time and I used to fall off the pavement if someone walked directly towards me and I couldn't see into the distance.
I used to misjudge where things were when reaching for things so that meant broken crockery etc
Are you clumsy, drop things, bump into things?
Do you find it hard to walk in a straight line?
Some forum members have reported veering into walls when they try to walk in a straight line.
Do you have an unusual gait, meaning is the way that you walk different to other people?
yes I walk into walls etc, balance isnt too good I am using a walking frame. I do have probmatic knees and joints with Arthritis as well so I put it down to that. It is possible thou it is something else thank you 👍
Might be worth writing a polite, brief letter to your GP, including a list of all neuro symptoms and a request to be referred to a neurologist and assessed for possibility of SACD.
Neuro Symptoms associated with B12 deficiency include the following
tingling
pins and needles
numbness
electric shock sensations
insect crawling sensations
water dripping sensation
burning sensations
memory problems
brain fog
confusion
clumsiness
dropping things
bumping into things
balance issues
migraine
strange behaviour eg putting car keys in the fridge
unusual gait (unusual way of walking)
loss of bladder and bowel control
difficulty getting the right words out (nominal aphasia)
muscle twitching/spasms
muscle fasciculations (ripple muscle movements)
eyelid flickering
pain and discomfort in spine
problems with proprioception
See Symptoms lists in my first reply for more neuro symptoms.
Some of the symptoms listed can also be associated with folate deficiency.
"and I am getting blurry sight now"
Have you thought about making an appointment for an eye test/examination?
any excess of vit b and folic acid is vit B9, is out of your body, gets out in urine safely, for pa. go so far as b12 injections, no idea strength, how often, NOT A MEDICALLY TRAINED.
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its 33. 
If so, I suggest you download a copy and save it (or a shortcut) somewhere easy to find.
Folic Acid if doing SI
B12 neuro folic acid 
Folic acid, injectable subcutaneous. 
Folic acid injections
