Pernicious Anaemia Society

Pernicious anaemia

Hiya I'm on folic acid daily for folate deficient anaemia, along with loads of other medications. I've started going to the toilet a lot more frequently and wondered if there is a link? I had a TOT bladder op 2 years ago with no complications. I was given mirabegron at the time as urodyanamic studies suggested I had ? Detrusor instability but I don't have incontnence. I've only been on folic acid for about 5 months but my bladder has become worse over the last couple of months so I have restarted my old mirabegron tablets I had in the cupboard? Any ideas? Cheers

13 Replies

what does of folic acid are you on and was it prescribed by the doctor.

Basically I think you should be going back to the GP, or at least talk to a pharmacist.


I'm on the basic one tablet a day dose ? 5mg a day. I'm sick of keep going to be honest as this was an incidental finding whilst my bloods were being checked. My liver enzymes are raised too? Gp isn't very forthcoming as my main health issue is balance related and will only deal with that, even though my consultant looks after me and tells me more about what my Gp should be telling me?


get hold of your test results for folate and B12 if done - exact figures and ranges.

balance problems are among the symptoms of a B12 deficiency and B12 serum test isn't a good guide to whether or not you are B12 deficient.

If the test involved a full blood count would be useful to get those results as well.

Please look through the pinned posts - lots of info there that you could use including a) checklists of symptoms, b) references to standards on diagnosis and treatment - including the importance of evaluating symptoms not just test results. You probably need ot go back to GP with list of symptoms and releant extracts from guidelines - and share them with the specialist - as they may not be aware of B12 as a possibility in relation to the balance.

Can't really comment on liver - Probably a point to remind you that this forum isn't substitute for professional advice.

I'm not aware of folate leading to urinary problems but I am aware of B12 leading to problems with urination. B12 and folate are used together so possible that a folate deficiency could cause this but if you have been on that does of folate for 5 months now and the problem is getting worse then it shouldn't be becoming an issue now unless there is something else going on.


Hi Gambit,

Following your reply to Capricorn70, I am interested to know how B12 (lack of) could lead to urination problems. For over a year now I have to go to the loo (urine) so often something unusual for me. This came about after I had been loosing my balance for a while and fainting. Where can I get information to correlate B12 deficiency and abnormal urination? (i had ultrasound of urinary track and kidney in December and am being referred to gaeneco-urinary department for stress incontinence in March). Thank you if you or anyone else can help on this matter.


very last item is incontinence - though this is a calculator rather than the evidence that went into it.

couple of possible ways B12 could cause incontinence:

a) weakened muscles

b) effects on autonomic system - brain mis-interpreting signals from bladder.

not finding much directly relevant in terms of studies though there is this one in relation to bed wetting in children

small study and suggesting that use of B12 and folate as a potential treatment should be investigated.


Thanks for reply.

Weakened muscles is a possibility as we get older, I suppose. However effects on autonomic system is a stronger possibility since I was diagnose with vaso vagal syncope a year ago, and there is a relation between vaso vagal syncope and the autonomic system, so I understood. It seems we all have rather complex health issues.

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Hi Capricorn70. Just wondering...have you been diagnosed with pernicious anaemia and are you receiving B12 injections?

I'm asking because giving folate in the presence of a low or deficient B12 level which is not being treated can result in potentially irreversible neurological damage. It can also obscure or 'mask' PA and or B12 deficiency because haematological remission can occur (the macrocytic anaemia sometimes (but not always) associated with both resolves but neurological symtpoms - and the potential for ongoing neurological damage - remains.

Also - 5mg of folate a day for five months sounds like a lot of folate...and it's a high dose. Just wondering if your GP has checked your folate levels recently?

Over supplementation with folate can cause some quite nasty side effects (I know, I had them when first diagnosed and accidentally over supplemented with folic acid).

Here's what the Mayo Clinic say about oversupplementation with folate:

'Folate may cause bitter taste, bloating, blood flow problems (caused by narrowed vessels), breathing difficulty, changes in urine color, confusion, cramps, diarrhea, dizziness, fatigue, gas, hair loss, headache, impaired judgment, increased asthma risk (in children of women taking folic acid during late pregnancy), increased cancer risk, increased seizure frequency, inflammation (such as in the mouth), lung muscle spasms, mood swings (excitability or irritability), nausea, overactivity, psychotic behaviour, skin symptoms (flushing, hives, itching, rash, and redness), sleep problems, vivid dreaming, and weight changes.'.

Here’s the link for more information about folate side effects and warnings: Folate: Side Effects and Warnings)

No idea if the folate is causing your current problems but I'd certainly ask your GP to check you folate levels to ensure that over-supplementation has not occurred.

In terms of the frequency and urgency...I get this...I could stay in the bathroom all day...and still need to go to the bathroom. Not good is it 😖.

I'm not sure at the moment whether this is due to B12 deficency or whether it's due to another autoimmune condition that I've recently been diagnosed with (undifferentiated connective tissue disease) - time will tell on that one. But...

As you headed your post 'Pernicious Anaemia' just thinking...if you do have PA then it's likely that you could have another autoimmune condition - they do tend to come in clusters. So...

If that's the case it might be worth asking your GP to do a full autoimmune screen - this is not a diagnostic test but if the results are positive it would indicate that more investigations are required.

No idea if any of this applies to you...just some things to think about...and if none of its relevant, can just ignore me 😄😄

But if you're not being treated for B12 deficency or PA, your GP should most certainly check your B12 levels - the folate may cause you harm if your B12 levels are deficient or low. Note - GP's often say B12 levels are okay when they're right at the bottom of the range - if that happens to come back for more advice).

As Gambit says, check the symtpom list in the PAS pinned posts and if you think this applies to you, read the rest of the information - and come back for more advice if you need it.

Lots of lovely knowledgable members here in the forum so post again whenever the need arises - support and helps always available.

Take care and let us know how you get on 👍

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Thank you, your reply seems really helpful. I actually work in the health service but I do not access my own results but I note that in the past I have had weakly positive ana antibodies??? I don't know what relevance this may have, this is going back years??

I do have right temporal lobe epilepsy, right Ménière's disease and focal vestibular migraine also, so I'm on loads of medication. That's why I don't like going to the Gp as I've had enough going on in the past.

I'm only 47, my blood sugars are ok but I'm passing urine very frequently but not during the night thankfully. I'm not incontinent either.

I hope your problems get easier. 😊

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Hi Capricorn70

Indeed you have your share of health issues! Do hope you'll be able to get some help...

Like you I'm not in continent (that thought scares me) but need to go to loo very often including at night but not so often. Like you I have migraines caused by vestibular imbalance and auricular migraines. We all seem to have many unpleasant and debilitating symptoms. Thank goodness we have this wonderful forum to give us support and useful information.

Best wishes to you.

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Hi Capricorn70. Antibodies are proteins made as part of an autoimmune response. In autoimmune disease, the immune system malfunctions and produces excessive amounts of antibodies which may then attack the body (can affect blood cells, joints, kidneys, lungs, nervous system and other organs).

The ANA test measures these antibodies but the test cannot, in itself, diagnose an autoimmune condition. Some individuals return positve ANA results and never develop an autoimmune condition - but some do.

One weakly positive result may have no significance. The usual thing would be to repeat the test and...more significantly...consider the results together with the presence (or not) of symtpoms.

Still not sure if you have B12 deficency or pernicious anaemia but...if you have PA (an autoimmune condition) you are more likely to develop another autoimmune condition (they tend to go in clusters). Likewise, if you have autoimmune conditions in the family, it is more likely (but not certain) that you could also develop one.

Also - people with PA and/or B12 deficiency often go on to develop Hashimoto's thyroiditis (another autoimmune condition)...and Hashimoto's can return a positive ANA test.

It sounds like you have a lot going on health wise but as you have unexplained symptoms, it might be worth starting to rule out other potential underlying health conditions - especially in the autoimmune department.

So...might be a good idea to ask your GP to test you for B12 deficency and PA (if not already done).

Also ask for the full antibody screen to be repeated. Even if it's only weakly positive again, because you have symtpoms, and especially if you have an autoimmune condition already - or in the family - it might be worth asking for a referral to a rheumatologist, who will be able to investigate further.

Having said all that, some individuals return positve ANA results (even strongly positve ones) and never go on to develop any kind of autoimmune condition.

But it's worth investigating, even if only for your own peace of mind 😄. And if something else is least it can be treated and symptom relief and better health would follow.

Interestingly, I had positve ANA tests dating back years - which my GP ignored. Found out when B12 deficency treatment was withdrawn and I applied for a copy of my medical records....and the discovery sent me off to a rheumatologist (taking in a few other 'ologists' on route) -eventually got a diagnosis...something that can be treated. last 😄

So I know exactly what you mean about not liking going to GP's...even the best of them 😖.

Take care and post again if you need any further help or advice. Lots of lovely folks here who,will pop along and try to help. And...if you haven't been down the PA and/ or B12 deficency route...we can advice about what tests etc. to ask for...


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Do antibodies really attack?

On really dodgy grounds here because of my limited understanding, but don't antibodies simply attach to things? Which then act as a flag to other immune system cells (lymphocytes? macrophages?) that there is something to be dealt with.

Like "You've got mail" flags!


Grief Helvella, this is going to be difficult...😄

It's all very complicated and I hadn't intended to go into detail beyond the very general concept that malfunction of the autoimmune system can cause the immune system to attack any organ or system in the human body (perhap I should have just said that...😄).

You're right about the macrophages...

Antibodies (also called immunoglobins) are proteins manufactured by the body that help fight against foreign substances called antigens (also called immunogens). When an antigen (virus, fungi, bacteria, toxin, chemical etc.) enters the body, it stimulates the immune system to produce antibodies (the antibody army fights the antigen invader).

Lymphocytes recognise the antigen as being foreign and produce antibodies (fighters) that are specific to that antigen, which is then 'digested' by the macrophages: it's therefore a process whereby immune complexes of antibody and antigen are taken up by the cells of the mononuclear phagocytic system (cells such as macrophages).

It's also worth noting that white blood cells can also produce antitoxins that destroy the poisons that some bacteria produce when the entire the body.

Normally, once the invading antigens have been destroyed, the immune response winds down, the body produces 'memory cells' and thereafter make the correct antibody 'fighter' if the body is exposed to that particular infection again.

In autoimmune conditions the antibody / antigen relationship is much more complicated: the phagocytic mononuclear system is activated inappropriately: antibodies (referred to as autoantibodies - the things that can be discovered via autoantibody screening tests) become self-directed and produce autoantibody mediated inflammation and cell destruction....potentially anywhere in the body.

After that it becomes much more complicated: each autoimmune condition produces a disease specific response with antigen specific T cells (and, I think, B cells too)...and a whole lot of other complex autoimmune disease 'fighting' mechanisms that are way beyond my level of comprehension...

Here's a paper that discusses autoimmune responses to specific conditions (including Hashimoto's)...I 'got' some of it...but a lot of it escapes me (I'm not a medic or a scientist)...but I keep going back every so often in the hope that something else will sink in 😉:

Not sure how clear I've been, or even if it answers your question...but hey ho...the best I can do 😄


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You head your question " Pernicious Anaemia " . Does this mean that you have been diagnosed with it ?


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