Please can someone give me advice? - Pernicious Anaemi...

Pernicious Anaemia Society
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Please can someone give me advice?


Can you help, for the past few months I have been experiencing pain in shoulders and arms then in my legs. Its a kind of numb, heavy persistent and gnawing pain. The pain is like that sore body flu pain.

I also get a recurant sore throat and a burning tongue. I'm so tired and lifeless and sore feeling. I'm like a zombie!

Driving is an effort, if I even walk round the shop the pain gets awful, like I've done a massive work out. I've been stuck in this cycle since July/August.

I have had a full blood count done by the doctor in October who told me liver/kidney function were all normal, blood count and thyroid normal but my ferrous levels were low.

Would a FBC show up vitamin B12 deficiency?

I was also prescribed Omeprazole because I get heartburn, several types of pain killers, which don't touch the sides and venlafaxine twice a day (not sure why!).

Please can you help?

My doctor isn't taking me seriously and doesn't take kindly to being asked to take blood.

I really need some help.

Thank you in advance.

16 Replies

FBC doesn't normally include B12 and folate. However, it could show evidence of macrocytosis - red blood cells slightly larger and rounder than normal. However, if you have an iron based anaemia then that would push the red blood cells in the opposite direction - towards smaller so probably wouldn't be picked up.

You need to ask for a full copy of the blood results - including reference ranges to be sure.

Please note that there is a considerable overlap between the symptoms of an iron based anaemia and B12 deficiency, and would cover the symptoms that you have mentioned.

in reply to Gambit62

I just finished my course of ferrous tablets at the start of November. Is it possible these symptoms I've been experiencing will go on there own?


in reply to asker

sorry but I'm not an expert in iron based anaemia.

To some extent what happens now is likely to depend on what happens with your iron levels going forward. If they are now stable then your body will slowly replace the iron-anaemic blood cells with healthy cells with the correct haemoglobin content - that's the bit that takes months.

How long were you taking the iron for? and is your GP following up at all?

in reply to Gambit62

I was taking the tablets for a month then due for repeat bloods and a follow-up on the 5th December.

in reply to asker

think you need to wait and see what turns up with the bloods - should be starting to show somesign of improvement.

Problem with iron is that it is possible to overdose on it so it does need to be monitored.

Sorry to hear that you are feeling so unwell . We really need to know the exact readings of your B12 levels . I was told that I had normal readings when I was in fact deficient . I did have Pernicious Anaemia , I later found out when I went to a private GP and had a positive test . You have been prescribed a kind of anti-depressant in Venlafaxine. Ofcourse I cannot diagnose your problem , but from what you say it could quite well be PA . If you do have PA , Omeprazole will only make matters worse, as it will neutralise any stomach acid that you have , which you need to help absorb Vitamin B12 . A gastroenterologist told me that PA patients have low or no stomach acid . This will upset your stomach flora, which will give rise to discomfort . I cured myself by taking probiotics , eventually making my own organic raw sauerkraut as it is the cheapest and best probiotic .

Some people have a high B12 reading but have what's known as functional B12 deficiency . Unfortunately , GPS are very ignorant about PA , as many of us in this forum have learnt to their cost .

Please let us know your B12 values You do know don't you that you have the right to a print out of the results of your blood test ? I didn't know this when I was so unwell . I did eventually get loading dose of B12 injections , but even though my feet were totally numb only one injection every 3 months. I have been forced to self-inject weekly to keep feeling well . So do get back to us , and I hope that we can help further

Very best wishes .

in reply to wedgewood

I didn't know I could ask to see my results.

When I asked for the B12 to be tested I was told "I've checked your full Blood counts that's all we can do" I'm due to go back on the 5th and I'm not joking but I'm scared to asked for this to be checked, they are quite dismissive.

I think they think it's in my head and that's why I've been given antidepressants and painkillers basically to shut me up.

By the sounds of things you've been through a rough time, I hope the injections are helping.

Many Thanks

in reply to asker


You are entitled by law to obtain your medical tests results. When I started asking for a copy of my results over a year ago, my GP said to me "These belong to the NHS"... to which I replied, yes they do but also to the patients... No patients = No NHS.... She had to comply then. However I have to request these every time I have a test or after hospital visit. I did not know at the time patients were entitled to get copy of tests but it rather made sense... and some respect for patients. GPs like to keep things under their control... So don't hesitate to ask for copy, even going back in your medical history. good luck.

Thank you all for your help this evening regarding this. I wasn't aware I could ask for the results.

Its just dawned on me after I had my son I lost just under 2 pint of blood, my previous doctor took bloods which said something about low B12 and somewhere other low level. I was meant to go back but new mum didn’t have time, stupid person!

Thank you all x

in reply to asker

Are you In UK?

In UK you can ask to see or get copies of your blood test results. May be a charge for copies. Some surgeries in Uk have online access to a summary of medical records but this won't necessarily have all the info. It is much harder in my opinion to get results from hospitals.

Some people ask to get a copy of their complete medical records but this can be expensive.

I learnt from bitter experience that when I was told everything was "normal" or "okay" that was not always true. The most important thing I have learnt from years of trying to find help for my health issues is to always get copies of blood tests.

"dawned on me after I had my son I lost just under 2 pint of blood, my previous doctor took bloods which said something about low B12 and somewhere other low level"

Nitrous Oxide

Did you have gas and air when you gave birth? gas and air mixture contains nitrous oxide which can cause problems for people who have low B12, see next link below.

Sources of Info about B12


Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn is the chair of the PAS (pernicious Anaemia Society). Book is up to date with current UK guidelines on B12 deficiency.

Book "Could it be b12" by Sally Pacholok and JJ. Stuart. Reading this book was a lightbulb moment for me.

The pinned posts on thsi forum are full of B12 info.

Have you looked at lists of b12 Deficiency symptoms? In UK , people who are symptomatic for B12 deficiency are supposed to be treated even if b12 results are within reference range.

pernicious-anaemia-society.... click on Symptoms checklist

if you think b12 might be an issue I'd recommend reading the "BCSH cobalamin and Folate guidelines" Click on box that says "Diagnosis of b12 and Folate deficiency"

These guidelines outline the UK recommended diagnostic process and treatment for those with B12 deficiency. Useful flowchart about a three quarters through document. Info on UK B12 tretament about a quarter through document.

BMJ B12 article See 5th summary point.

Do you have any blood relatives with PA (Pernicious Anaemia) or other autoimmune conditions?


I am not a medic just a person who has spent years trying to find answers to health problems.

Yes , the B12 injections have helped enormously , but only because I self inject . If you have to go down that road eventually you will get all the help that you need here . Your story is one that we hear repeatedly on this forum . If you do have PA, and it's a possibility , B12 in tablet form is useless . It has to be injections , and in the UK you can only get them on prescription , so we use German online pharmacies . Syringes needles etc can be obtained here easily .

in reply to wedgewood

I take b12 lozenges (+ folate) and it has made my symptoms disappear!

I think that your symptoms were due to B12 deficiency ,not P.A. in that case . Which is good .


Hi asker. Really sorry that your having such problems and that your GP isn't taking you seriously.

About the serum B12 test - no, this is not included in the FBC blood test. And yes, your GP can do is blood test - no earthly reason why he shouldn't, especially if you have the symptoms of B12 deficiency.

Have a read of the PAS pinned posts to the right of this page when you log on - they'll give you lots of information about B12 deficiency and pernicious anaemia and there's also a symptom checklist and diagnostic protocol.

It might be a good idea to print out the symptoms checklist, tick any symptoms you have and take it along to your GP - simply tell him that you ha e the symptoms, you haven't had this blood tests done, and at you'd like to be tested.

Also print and show him the diagnostic flowchart (in the third pinned post) - he'll be able to see the current guidelines together with the tests he should be doing. Also print and highlight any information from all the pinned posts that you think is relevant to your case - take this to your GP as well. If you have somebody who you can take with you that might help, since GP's are often more attentive and less hostile when there is a witness in the room. Sad, but true. Make a double appointment, if necessary - this will allow time for your GP to review your evidence. And if he tries to tell you that it's 'Internet rubbish', tell him it's from the Pernicious Anaemia Society - all backed and underpinned by sound medical research.

If you match a lots of the symptoms of B12 deficiency, you GP should also check your anti-IF antibodies (to see if you have pernicious anaemia), your folate levels (because folat and B12 work together and if your folate is low then your body won't be able to,absor B12).

Folate should be in the top third of the reference range. And it's worth noting that your GP should not give your folate supplements if you have deficiency or low B12 levels - giving folate before low or deficient B12 is treated can cause potentially irreversible neurological damage.

Also - point out to your GP that Omperazole (a drug called a proton pump inhibitor) causes problems with B12 absorption. So, you have good cause to ask for a B12 blood test as you may very well be B12 deficient - in fact, be surprised if you weren't 😖.

Your acid reflux and gastric problems may also be linked to B12 (and other vitamin absorption) problems. Has your GP referee you to a gastrologist - acid reflux should be checked out, especially if you have had it for a long time. And if you ha e autoimmune conditions in your faimily, then pernicious anaemia coild possibly be the cause (though there are, of course, other causes of B12 deficiency and gastric issues).

GP's often say blood results are okay when they're not. It's worth asking for copies of your results (this is,your right) - it you post them here together with the reference ranges, then folks will be able to help you interpret them.

A lot of your symptoms do sound like the type of symptoms that are caused by B12 deficiency, and this can include pain - check the symptoms checklist for more information.

If you have any neurological symptoms (and it sounds like you do), then your GP should certainly test your B12 levels - and treat you with B12 injections as a matter of urgency. Failure to treat when B12 deficiency when neurological,symptoms are present can cause potentially irreversible neurological damage. I say this not to frighten you, but so that it will give you courage to approach your GP again.

If your GP will still not do the serum B12 blood test, try another GP,in the surgery (if there is one). Other alternatives are to change surgeries completely or get a serum B12 blood test done privately (though you shouldn't have to resort to that).

It's also worth noting that if you take B12 supplements before having a serum B12 blood test, this will skew the results (perhaps for many months) and you will then struggle to get a diagnosis of B12 deficiency.

Anyway, good luck with your GP (can never understand why they are so unhelpful - and sometimes hostile 😖).

Please come back for more advice if you hit a brick wall with your GP and lots of people here for support, if needed.

Take care 👍


I have had iron deficiency anaemia and felt totally breathless and unable to walk any distance or climb stairs without lying down. I have been taking ferrous sulfate tablets for some time to get ferritin levels up. This is where iron is stored. Do you know what your ferritin levels were. Should be above 50. Also GP was clear that PPIs such as Omeprazole can interfere with absorption of iron as with B12. Instructions with tablets said do not drink tea or coffee or take antacids within 30 mins, and take with Vitamin C.

If you are in England you are entitled to see a limited version of your records online which does include blood test results. I can see mine the day after the test. Look up NHS Choices, GP Services online and they give the details. Ask to register at your practice for repeat prescriptions, appts and records online and they should give you a username and password and turn your access on.

Hi, I had my follow up appointment on Monday. I asked about having a B12 test done to my surprise I was was told it was done at the time they discovered my ferrous levels were low. So I asked what level B12 was the Dr said "it's fine" I then asked for a copy of the levels he said "why don't you trust us?" I was left like a bumbling idiot I explained it's for my own records he told me "that's why we're here."

The upshot was more painkillers, Omeprazole and venlafaxine. And come back on Monday to see my normal Dr "she is a specialist in rheumatology" even though my inflammation makers were all normal.

The pain over the past 2days has been awful, my chest feels raw (like you get with the flu), my tongue is tingling. Not to mention the pain in my elbows (like a hot stabbing) my shoulders/shoulder blades and my ribs are so sore!

I really don't know what to do now.

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