Pernicious Anaemia Society

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I've just been told today after around 2+ years of feeling drained,tired,fatigued,mardy,depressed and just plain down that my B12 levels are low apparently called folate? I now have to wait a month to see a nurse to discuss my diet although it's not that bad, I have bought some folic acid after talking with a chemist in the hope this will help in the short term while I await my appointment and continue to feel terrible. Am I doing the right thing by taking these tablets? Am I on the correct page for answers? And will this get better? Please say yes I can't keep going like this.

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You may need to get the results of your tests including the Ranges. If you are low on B12 do not supplement folate(or folic acid) but get appropriate B12 first and later add the folic acid. The Dr should prescribe appropriate B12 for you and if necessary B9. Publish your readings on this site.

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As Dulaigh says hold off from supplementing folic acid until it is clear if you are getting Vitamin B12 treatment as your statement "that my B12 levels are low apparently called folate?" is a bit confusing.

Vitamins B12 and Folate (also known as B9 or folic acid) work together and help your iron to make red blood cells and both need to be "in balance".

You are certainly "in the right place" for help and advice but more precise details are needed as to what test results for B12 and Folate are together with their ranges <from - to>.

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Hi guys thanks, that is everything I know and have been told and that was only from the receptionist as the Dr was busy and the nurse I'm to talk to about diet is booked for a phone call with me in a months time but I'll update when I know more, I'm going to call them and push as me being like I am is affecting not just me but my family too. Thanks again guys

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Hi James79. As Dulaigh and clivealive suggest, ask for printed copies of any/all blood tests you have had and post them on the forum (in a new post), together with the reference ranges, so we can advise on the results and suggest ways to approach your GP. (Its you're legal right to have these, just in case the receptionist gets a bit difficult - suprisingly, some do 😣).

Also - best not to take any floic acid yet - if your B12 is to low this can (in rare cases) cause neurological damage.

And how bad that you had to get this information from a receptionist - no wonder what you've been told is sounds confusing - B12 and folate are different things (but both work together)...and both deficiencies have to be treated, first the B12 and then 24 - 48 hours later, the B12.

If you have the two deficiencies, then its possible that you have an absorption problem - in which case, dietary changes alone will not address those deficiencies.

And a month's wait simply to discuss with the nurse is...well...not good (to put if far to kindly).

So...post your results and folks here will advise and help.

👍

P.s. In the meantime the PAS pinned posts to the right of this page (at the bottom if using a phone) contain information about B12/folate deficiency and pernicious anaemia - definately worth having a read 👍

P.s. Please check the symptoms list in the second PAS pinned post and let us know if you have any neurological symtpoms - makes a difference to the treatment you should ask for (needs to be more intensive when neurological symptoms are present - and not many GP's know that.

Also be useful to know if a anybody in your family has any autoimmune condition/s?

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Hi thanks for your response, I'm putting the folic acid on hold and am calling the Dr today to get my results, the receptionist is extremely irritating and is the type that always asks you what's wrong with you and says she needs to know before she can make a decision???? Anyway by neurological would you mean things like I get words muddled up so instead of saying fridge I'll come out with microwave? If so this happens alot as well as not being able to say or think of the word I want even though I know it in my head. I will have a look at the post you mentioned, sorry for all the questions but it's nice to know I'm not actually just a miserable sod that's going mad especially only 3 years ago I was the complete opposite of what I am today loving life and a happy go lucky person, I was diagnosed with depression after my mum died suddenly last year but I didn't feel it was that especially as every tablet they put me on didn't work so I took myself off of them.

Is it right what I've been reading that you have to fight in most cases to get B12 treatment for any extend period of time? Thanks again.

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Yes...James79...muddled words (nominal aphasia) certainly counts...as would pins and needles, unsteady gait, tinnitus...and others too.

Not you say in another reply that you do not have a swollen tongue - not everybody gets all the symtpoms of B12 deficency - seems to affect individuals differently and so each i dividual has symptoms perculiar to them - nobody know why 😣.

And yes, some people have to fight to get treatment - others dont. Depends entirely on how knowledgeable individual GP's are. Sadly.

But don't worry about that yet...one B12 step at a time and help from the lovely folks here will help you with your GP 😀

👍

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It is a war out there james79 and many of us have joined the Pernicious Anaemia Society which is dedicated to helping not just patients but doctors too to understand B12 Deficiency and P.A.

Read through the NICE guidelines below which tells doctors how to treat their patients. Click on the link, then on "Scenario Management" and scroll down - slowly.

cks.nice.org.uk/anaemia-b12...

I wish you well and it's a good idea to take your partner as the doctor is less likely to "pooh pooh" your list of symptoms in front of a witness.

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B12 causes depression memory loss foggy brain neuropathy malaise among many other things 😀

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Just one other thing you don't have to have pernicious anemia or anaemia in b12 deficiency with symptoms which is why doctors are missing it because just looking at blood count and saying you fine and again high folic acid normalise blood cell size so will keep mega plastic cells looking normal. It is important you ascertain wether I is b12 or folate you are low in as b12 can cause permanent damage also low folate is a precursor to b12 deficiency often.

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Also the NHS symptoms for this match me exactly for every one except swollen tongue I would post a picture of them but there is no facility on here for me to do so.

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You should know that you can only obtain vitamin B12 in your diet from meat , fish ,eggs and dairy products . If you do eat those products and have low B12, it is likely that you have an absorption problem . There are medications that can hinder absorption e.g . Metformin ( diabetes )and PPIs( stomach acid neutralisers ) Very rarely fish tapeworm infestation .

If you have the autoimmune condition Pernicious Anaemia , you cannot absorb B12 in your stomach and have to have B12 injections for life . There is a blood test to have called IFA ( Intrinsic Factor Antibodies ) it is unfortunately very unreliable . You can have PA , and it very often reads negative ! If it reads positive you have PA 100% . There are more reliable tests which are difficult to obtain from the NHS. But your GP should treat your symptoms .

You obtain folate from green leafy vegetables (the most prolific source) peas and some fruit . There is not usually an absorption problem with folate .

Just a bit of info for you . Best wishes .

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Just a bit more information on the folate absorption 'thingy':

There is quite a large range of medications that impede the absorption of folic acid...and hence also impact on the processing of B12 at a cell level...and we all know the consequences of that 😣 (Lots of lovely B12 sloshing about in the blood - normal/high B12 levels - but potentially little being processed properly).

Heres a link with more infomration about that (the medications listed may bot be an exhaustive list):

umm.edu/health/medical/altm...

That's not to say that taking these meds should automatically mean that folic acid supplements should be taken (over supplementation can have unpleasant side effects which could potentially have long-term consequnces): doctors should be aware and monitor folic acid levels.

And I'm having a laugh at myself here because I only realised this fairly recently - symptoms worsened and by a process of deduction (okay, what's changed) I discovered that I had medication induced folate deficiency. Interestingly, neither my GP or the consultant who prescribed the meds (prednisilone) seemed aware that this could be a problem! 😣😀

👍

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Thanks for that info. Foggyme . I wasn't aware . As I don't need to take any medications at all , I feel most fortunate .So glad that you are an administrator. It must take a lot of your time . You are so thorough .

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Why thank you kindly wedgewood 😃.

Time - wish I had more, energy - more would be useful...and as for the brain...sometimes the amount I don't know scares me witless 🤔 😰😱.

So...much the same as everybody else really 😉😊😊.

👍

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Hi James - welcome to the forum. You have found the right place to get help and support and most importantly information. I was only diagnosed myself last year and like you felt like I was going mad, still do some days! Whilst I have still not got my treatment right I am definitely much better than I was this time last year so don't despair. Arm yourself with information and get back to see your GP, most people seem to have a battle to get the recommended treatment and even that falls short of what some people seem to need - so being prepared for GP appointments is essential....and difficult when you feel you can't think straight. Consider taking someone with you.

Amazing people on this forum who will be with you every step of the way.

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Hi, thanks for your response, I will take my other half with me, I'm just so relieved to know there is actually a reason I feel the way I do, it's the second blood test I've had the first didn't pick anything up but my Dr asked me if he can investigate it after I broke in front of him and telling him I don't know how much longer I can keep feeling like I do but i do feel slightly lighter now I know there is a reason behind it all.

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Thankyou, I need to try and learn as much as I possibly can, it's like everything I've been feeling over the last couple of years all of a sudden makes sense and why I've been like I have, I'm just happy there's a reason especially as it has very nearly broke me and my partner up due to all I ever want to do is go to bed and sleep and never do anything go anywhere, I do eat a fair bit of meat and vegetables but I will try to include more foods that will help.

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I remember the sense of relief on diagnosis, just to know that there is a reason for all the changes and symptoms. Don't let that relief take over though, I just accepted what the doctor told me and didn't inform myself or challenge him enough in the early stages and don't think (with hindsight) I was given enough B12 in the early days, i.e. until no further improvement in neuro symptoms.

I obviously don't know how healthy your diet is but I know they tried to tell me it was diet initially and that was utter nonsense for me, I eat well and love my meat so knew it wasn't an intake issue. My understanding is that unless you are vegan or vegetarian it's highly unlikely to be diet related - though obviously healthy eating is always a good starting point. I also wasn't bothered about finding the cause initially because I thought a few injections would sort me out and life would be back to normal. Now with other vitamin deficiencies starting to show up I am trying to get to an underlying cause, although I understand lots of people never find out the cause.

I also understand the pressures it puts on your relationship; so difficult for partners to understand and, in my case, such weird emotions that hard to know what I really feel. Keep talking and consider buying Could it be B12? Book by Sally Pacholok which might help both you and your partner understand more.

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Hi thanks for all that, I am similar to yourself in that my diet is fine I eat plenty of meat most nights in fact along with vegetables (mainly green) my fruit intake could be better but aside from that I eat ok not great but ok, my only worry now after talking and reading is that I'm going to have to fight to get the help I need.

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Sadly you may well have to fight, it's a common theme on here...though I sometimes try and tell myself that there are people out there getting the treatment they need and getting on with life and it's only those of us that are struggling that end up finding our way here. Your start with GP is not promising, if your B12 is low then I believe you should be put straight onto loading injections not be told you need to wait a month for a diet discussion with the nurse! Even if it was diet then if your levels are low then you need treatment. Get your test results asap, my surgery haven't made me pay or given me any hassle about getting copies, and post them up here and lots of people will jump in and help.

Perhaps others on here can also advise if you should also ask your GP for other tests (MMA and HomoCy??) before you start the B12 treatment. I didn't have any other tests and am now trying to understand if they are pointless now I am being treated or whether they are still useful, I know the serum B12 is useless as an indicator now.

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I had to fight - and ultimately failed. As far back as 2011, I started with PA symptoms but unfortunately for me I also had a pre-existing thyroid problem, and was constantly told that pins and needles, speech problems, unsteady gait etc were all due to my thyroid (which decided to have a 'hissy' fit at the time) even though I had over-range MCV, low (but in range B12) and low (but in range folate) and questioned B12 deficiency, although I didn't know a great deal about it then other than symptom related.

In 2014 my GP left the practice and I was re-assigned to another GP. We got off to a flying start, he immediately ordered FBC and referred me to a neurologist. That's where the good start ended. Neurologist (a professor) flatly denied my symptoms were due to B12 deficiency so I was consigned to the "idiopathic neuropathy bin" and offered antidepressants (not taken). That was my last visit to the GP - but I struggled on for far too long (partly due to ignorance on my part and probably partly to do with my 'conditioning' that a prof in neurology had to be right).

Eventually got a diagnosis privately, was treated on symptoms and now SI. As they say, knowledge is power, and although I was slow out of the starting block I got there in the end no thanks to the GP and prof.

I wish you well, read all you can and don't be fobbed off or be influenced by high flying neurologists - I still scratch my head in amazement that they can get is so wrong.

Cassie

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Hi everyone,

I just want to say thanks to you all and let you know how much I appreciate the support, information, links, and conversation.

I'm so happy I've found a cause and that something can be done about it, I was getting so low to a point I was questioning whether I would be able to carry on living with the way I feel for the rest of my life but now after seeing the Dr and speaking to everyone in this amazing group I feel brighter about the situation, so a massive thankyou to you all.

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So good to hear positive story. I came to this site when I was so ill. Now diagnosed Bit D and B12 deficient I've had some shots. Life is so different. I can be a proper parent now. Live a better life. So happy.

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Hey sorry to keep asking questions,

I just want to ask about the neurological side of it, would paranoia be included as a symptom? Just the last couple of weeks in telling myself things that I have no grounds for them to be true but I'm believing myself of something I have totally made up in my own head. Thanks once again.

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Hi james79, some people on here have reported personality changes, so paranoia, I suppose could be included in that. At least you have recognised this as not being your 'normal self'!

Like you I also felt relieved when I was diagnosed, reading the symptoms and ticking them off!

Good luck in your journey to wellness!

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Hi

Just spoken to my Dr not receptionist this time he said b12 is slightly low but not dangerously low but my folate was lower so he's prescribed me a folate supplement and to go see him in 2 weeks or to call again if I crash again like last night which I did very hard aswell, fingers crossed this is the start of me getting better.

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Hmm... slightly low? This could mean out of range. The range is what the lab uses to determine whether you are deficient or not. Supposedly compared to a 'healthy' person. I would ask the receptionist to actually print off your results, you are perfectly entitled to them, lots of people ask, so it's not an unusual request. Then post them on here, in a new post as you can upload photos on a new thread, covering up all personal information. It's important that your B12 levels are adequate before starting the folic acid.

My doctor said mine was only slightly low, it wasn't in my book! 152ng/L range 170-750ng/L. I had similar symptoms to you, never able to think of the right word for things is frustrating!

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If it is low b12 should use b12 supplement. Folic acid when taken can hide b12 deficiency and pernicious anemia in full blood counts as will correct your blood cell size. You may have a folate deficiency and this is why you have been given.

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