Folic acid and b12

[Angie10116]

Hi all, I’m new here. I have low B12 (390 -180-900), but have been tested for pernicious anaemia and the test came back clear. I have low folic acid (3.4 -3.00-17.00) and was perscribed folic acid 5mg. I just read that taking folic acid when low in b12 can cause neurological symptoms. I was tested for pernicious anemia and test came back clear. Am I safe to take folic acid when my b12 is 390?

[Nackapan]

Depends if you have symptoms of b12 deficiency and need b12.You are well into the 'range'

B12 if needed should be given before folic acid.

5mg folic is short term only then retested .

I brought my folate levels up quickly taking 400mcg s day.

A woman of your age could take that daily as recommended by NHS ax a maintenence dose.

Eat more folate rich foods.

Was your vitamin D okay and Iron ?

[Angie10116 in reply to Nackapan]

Thank you so much. I’ve a lot of symptoms, very bad headache that won’t go, exhausted, hot flushes, some puns and needles, low mood, anxious, feeling out of it and brain foggy and weak.

I’ve been taking 1000ug of mythyl b12 for about a week now, and was advised by someone in a thyroid forum that I should be okay to start the folic acid.

I’ve been taking Igennus b complex which has 400ug. I shall start the 5mg for now and then continue with the complex.

My ferritin was 130, and my D was 63… apologies I so my have the ranges.

[Nackapan in reply to Angie10116]

I would check that vit D level.Sounds a little low. .most need to take vit D in the winter . Preferably with Vit K2

I also would try s different sort of b12 .

Cyanocobalamin is fine.

Methylcobalabin can give anxiety feelings and other side effects .

Worth a trial to see .

Also get as many tests as possible to rule other things out too .

Have you s previous b12 level to compare it too.

Were you off B12 supplements when the bloods were taken?

[Angie10116 in reply to Nackapan]

do you think that 62 level for vitamin d is low? I do take d with k2😄

Thank you, i will try the other form.

I’ve got a few things checked, all seem to be good. I do have pcos, hypothyroid and low folate.

2 years ago I had a level of around 280, got treated with injections and it went to 900. Now Teri years later it’s 390.

[1Cazza in reply to Angie10116]

B12 injections are for life, if you have them they should NOT be stopped.

[Nackapan in reply to Angie10116]

Look at the test result range and measurement used for vitamin D.Always useful to keep a record of your blood test results

Sounds like Injections should've continued .

My daughter used to have them 3 monthly that for her at that time adequate .

Some manage after loading to kerp well taking oral b12 but that's usually if diet was the cause

Only you know how you feel.

Good to keep a diary

[FlipperTD]

Hi Ange.

I'm a retired scientist and performed hundreds of thousands, if not millions, of these tests.

our B12 isn't low. It's plumb normal. [I'm assuming you were not on supplements when this test was done. If you were, then the measurement would be meaningless.]

Your B12 level isn't in the middle of the range, but then again, the range isn't a bell-shaped curve; it's skewed, so most of the results are below the arithmetic mean. I wouldn't worry about it. Your folate result likewise is in range, and supplements are unlikely to cause any issues.

Try not to worry about this!

[Angie10116 in reply to FlipperTD]

Thank you flipper! I’m only worried because of my symptoms but I appreciate your reply 😁 all the best

[Mixteca]

Welcome to the forum Angie. What PA test did you have? There are several and all are advisable.

[Angie10116 in reply to Mixteca]

I’ve no idea! 😂

[Mixteca in reply to Angie10116]

Get a print out of all tests from your GP. I think Thyroid UK advised you on medical records...

[Cb1963 in reply to Angie10116]

It gets so confusing with B12 deficiency, and I reckon the doctors don't even know sometimes how to go about treating patients, and I don't even know myself if I've got PA, however I get the B12 injections every 3 months, and at the very beginning I did have a blood test to find out why I was having " symptoms " and had the loading doses to get the ball rolling, I'm now in these injections for life, and at one point I felt dreadful, I could hardly breathe and felt breathless just walking, I had another blood test and I then required folic acid tablets for a month or two of if i remember correctly.

People who have stomach conditions are likely to suffer from B12 deficiency, and I've had numerous problems with my gut for many years prior to getting the injections, it's the lack of absorption causes deficiency in many cases , and you can have various symptoms with B12 deficiency, tiredness, muscle spasms,eye lids flickering, pins and needles in the feet and hands , and ulcers around the tongue, I know when I'm due a " top " up as my eye lids to flicker and I get a deep rumbling sensation in my chest, I'm lost without these injections and I can't do without them, it's a nightmare trying to find the correct medical info, but these are some of the classic symptoms, hopefully this will put your mind at rest 😇

[Hockey_player]

A negative PA test does not mean you do not have PA. The standard test has about a 50% false negative rate.

[Angie10116 in reply to Hockey_player]

Why so they do it then? That very silly

[Hockey_player in reply to Angie10116]

If you get a positive result then you can have very high confidence that you have PA.

[Angie10116 in reply to Hockey_player]

I see! What’s the best way to test for it?

[Hockey_player in reply to Angie10116]

This is an open research question. There is no reliable test for it. If supplementing B12 makes you feel a lot better, I would suggest just assuming you have it and continue the supplements for the rest of your life. I never had a definitive test but taking it turned me from someone who was sleeping 16 hours per day with tingling toes into an energizer bunny. I originally got by with sublingual supplements but had to switch to injections when my toes got tingly again. The B12 injections fixed the problem so I believe that I have PA.

[wedgewood]

” My test for P.A. came back clear”

That would have been the Intrinsic Factor Antibodies test ( IFAB) This test is not reliable if it is negative . About 50 % of PA patients test negative first time . The antibodies do not always appear. Doctors who have poor understanding of the condition ( most of them) then assume that the patient does not have P.A. Our former Chairman had some negative tests until the antibodies showed up , proving P.A.

Please explain this to your doctor , Of course he/she may not accept this information from a patient .

If you have P.A. you will need 6 loading doses of b12 injections over 2 weeks. Then a B12 injection as often as needed to keep symptoms at bay . ( but many doctors will only allow 1 injection every 3 months) I need an injection weekly which I have to source from German online pharmacies . as. B-12 ampoules for injection are a prescription item in U.K. , but not in Germany . Patients on this forum are also having to do this .

If you need B12 injections, do not delay , because untreated or undertreated P.A. can result in irreversible symptoms. ( happened to me)

You will get help and advice on this forum . Best wishes. .

[Angie10116 in reply to wedgewood]

Hello! Thanks for the info. Is there a better way of testing? I’ve had enough of my gp and I don’t want to keep going back there. Maybe something more accurate? Private? Thanks!

[wedgewood in reply to Angie10116]

There is no better test for P.A. unfortunately. Diagnosis has to rely on detective work by the doctor and common sense . . I had to go to a private doctor to get an IFAB test which luckily for me was positive . My GP was then obliged to give me loading doses , but only allowed 1 B12 injection every 3 months , which was insufficient to keep symptoms at bay . As a result of delayed treatment, I have an irreversible symptom . Don’t let that happen to you . You have to accept that there is very poor knowledge in the medical profession on B12 deficiency/ Pernicious Anaemia. That’s why this forum is so great .

I’m really sorry that I can’t give you better information .It can be such a struggle when you are feeling unwell . I’m afraid that there are no specialists to consult in this field . We are on our own. But we all help and support eachother .

You have come to the right place .

Best wishes .

[Angie10116 in reply to wedgewood]

I’m sorry that you’ve had to go through all of that and that you have irreversible symptoms.

My worry is this. I had low b12 2 years ago (aug 2022) , it came back in the 200s, can’t quite remember. I had loading doses and it came back in 900s. The doctors left it at that. Then in September of this year is came back at 390. Ive been feeling worse and worse every since, and now I have a lot of symptoms, also now paired with mental symptoms. I’m worried it dropped, and if thats the case, WHY.

I could push for one more b12 test.. but I have been supplementing for nearly 2 weeks….1900ug per day. So I’m not sure what to do…

Also how would one know that they DONT have it? If tests are unreliable ? Surely I wouldn’t just keep testing for the sake of it if it kept coming back negative? When to stop?

[wedgewood in reply to Angie10116]

I have heard that the antibodies do appear within a few tests . But doctors never want to give you more than one test .

There are many causes of B12 deficiency . Pernicious anaemia being the most common .

Other causes include

Bariatric surgery

Helicobacter Pylori infection

Longtime use of certain medical drugs e.g. Metformin for diabetes , Proton Pump inhibitors for acid reflux .. There are many other drugs , so look them up, if you think that it’s a possibility.

Abuse of Nitrous Oxide ( laughing gas )

Fish tapeworm infestation

Abuse of alcohol

Crohns and Caeliac disease

Vegan or strict vegetarian diet .

“Functional B12 deficiency “ is when you have a normal B12 result , but the B12 stays in your blood and does not get into your cells , so you get symptoms of B12 deficiency .Needs repeated high doses of B12 injections

P.A. is an autoimmune condition which cannot be cured , but can be rendered harmless by receiving adequate B12 injections that keep symptoms at bay . Autoimmune conditions seldom come alone . The most common “ companion “ being Hashimoto’s thyroid condition . But there are over 100 autoimmune conditions .

I hope this information is of some help to you . But please realise that the medical profession is not well informed on B12 deficiency/Pernicious Anaemia . There are books on the subject by our former Chairman Martyn Hooper and also a book by Dr Joseph Chandy . Best wishes .

[wedgewood in reply to Angie10116]

I have heard that the antibodies do appear within a few tests . But doctors never want to give you more than one test .

There are many causes of B12 deficiency . Pernicious anaemia being the most common .

Other causes include

Bariatric surgery

Helicobacter Pylori infection

Longtime use of certain medical drugs e.g. Metformin for diabetes , Proton Pump inhibitors for acid reflux .. There are many other drugs , so look them up, if you think that it’s a possibility.

Abuse of Nitrous Oxide ( laughing gas )

Fish tapeworm infestation

Abuse of alcohol

Crohns and Caeliac disease

Vegan or strict vegetarian diet .

“Functional B12 deficiency “ is when you have a normal B12 result , but the B12 stays in your blood and does not get into your cells , so you get symptoms of B12 deficiency .Needs repeated high doses of B12 injections

P.A. is an autoimmune condition which cannot be cured , but can be rendered harmless by receiving adequate B12 injections that keep symptoms at bay . Autoimmune conditions seldom come alone . The most common “ companion “ being Hashimoto’s thyroid condition . But there are over 100 autoimmune conditions .

I hope this information is of some help to you . But please realise that the medical profession is not well informed on B12 deficiency/Pernicious Anaemia . There are books on the subject by our former Chairman Martyn Hooper and also a book by Dr Joseph Chandy . Best wishes .

[Angie10116 in reply to wedgewood]

That’s very helpful, thank you very much for your detailed reply.

May I ask, with the functional b12 deficienc, how do you check if they go into the cells?

[wedgewood in reply to Angie10116]

It is assumed that you have functional B12 deficiency if you have really adequate B12 in your blood serum and still have persistent B12 deficiency symptoms , that the vitamin is not getting into your cells .

[Angie10116 in reply to wedgewood]

I’m guessing that’s only when every other possible reason for symptoms is ruled out?