I had blood tests a few weeks ago as I'd been feeling exhausted all the time. I was told My b12 is the lower end of normal and my red blood cells are abnormally large. She asked if i drink alot or dont eat meat which i dont so she just advised to buy a supplement. My problem is its been 3 weeks taking a supplement and i feel no different. I have googled b12 deficiency and alot of the symptoms i have... tired and weak, my memory is shocking, my foot has been numb/tingly for about 6 months, iv had depression and anxiety for years. Also i dont know if connected but i have twitching in my muscles alot! Also last year i was taken to a & e with severe chest pain which moved down to my side so they thought it was my gallbladder but after a scan it turned out not to be.
If my results showed lower end of normal why am i having all these symptoms? I dont want to look stupid and ask again about it but i cant keep being this tired i can hardly function! I have an appointment tuesday for something else so should i mention it or ty longer with the tablets ?
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kbel88
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Hi kbel88 if the supplements you are taking are not "working" it may be that you have an absorption problem with your digestive system.
Most absorption problems aren't treatable but a few are - notably h pylori infection - which would mean that once that has been dealt with you would be able to absorb B12 from your diet so wouldn't need maintenance shots for life.
I would make a list of your symptoms and ask your doctor to try you on a course of B12 injections and also to test your Folate level as this and B12 help your iron to make red blood cells.
I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.
Thankyou for your reply, my appointment on tuesday is actually for results from a h pylori breath test which i had due to having constant heartburn for a year and no medications have helped. I had no idea this could be connected to b12 absorbtion so hopefully it comes back i have that so they can sort me out.
H pylori breath tests are only reliable if you haven't taken any proton pump inhibitors (acid reducers for stomach pain) or bismuth (pepto bismal) for at least 2 weeks prior to testing.
Additionally you cannot have eaten or drank or smoked anything (cigarettes) for 2 hours prior to testing.
Not to wish you bad luck ( being positive for fir h pylori) , but at least if it is h pylori it can be treated and hopefully you can heal and have a healthy future.
Thankyou, yes i stopped taking omeprazole months ago as no help at all, and had fasted before the test.
Thankyou im hoping it comes back as that too, especially now i know that can affect b12 absorbtion aswell. I will update this thread after my appointment
kbel88, B12 is only found in animal products - meat/fish/dairy/eggs, so if your diet doesn't contain enough of these then you will use up all of your B12 stores and become deficient. If the deficiency is due to diet then supplements will correct this and allow you to rebuild your stores of B12 - but this doesn't happen over time and if you have macrocytosis (the larger red blood cells) then that can take a few months at least to resolve - and other problems can take even longer - so not feeling anything immediately - or even within 3 weeks, doesn't necessarily mean that things aren't resolving.
However, if you eat fish/dairy/egg then you should go back to your doctor as this increases the likelihood that your deficiency isn't dietary and is actually due to an absorption problem.
The question about drinking a lot is probably to do with the likelihood of liver damage. Your body stores B12 in the liver so if your liver is damaged this can lead to B12 deficiency.
Unfortunately serum B12 isn't a gold standard test - tests use 'normal ranges' which are averages. Sometimes - and B12 is one instance - people vary a lot in where they are healthy - this means that there is a chance of missing someone who is B12 deficient if you just take the normal range - with serum B12 this means that 25% of people will be missed if you just take the normal range without looking at other symptoms - and macrocytosis is a classic symptom that affects 75% of people by the time they present and are tested.
The chances of being one of the 25% get lower the further you go into the normal range but it is still possible to be deficient at levels well inside the normal range.
B12 deficiency is, as you will have gathered from your investigations - something that can take years to fully manifest.
Thankyou for your reply, i do eat meat etc and i do drink but not excessively. I will talk to my dr on tuesday i just dont like to sound like im questioning her, but i do think its more likely to be a problem with absorption.
you may find it useful to familiarise yourself with bits of the BCSH guidelines on diagnosis and treatment of cobalamin and folate deficiencies. Your GP can access these through the BNF but they are also available here
there are a large number of potential absorption problems - PA is the most likely
The test for PA has a low sensitivity and can'treally be used to rule out PA as a cause because it comes back with false negatives 40-60% of the time depending on the exact assay method.
there are some causes that are treatable - eg h pylori infection
if you have neurological symptoms then treatment should be prompt
The problem with supplementing B12 without a diagnosis is that it can make it very difficult to get a diagnosis. Over the counter supplements may not have enough B12 to make a difference to someone with an absorption problem.
B12 deficiency is not always well-understood by doctors in my personal opinion. I think it pays to do own research.
Some links about b12 deficiency and PA. Some info may be specific to UK.
Link about What to Do Next if b12 deficiency is suspected.
"If my results showed lower end of normal why am i having all these symptoms?"
I had many of the typical symptoms of B12 deficiency for years, including mutiple neuro symptoms and most of my B12 results were between 300 and 500ng?L. it is possible to have severe b12 deficiency with an in range B12 result.
Flowchart outlines when PA and Antibody Negative PA can be diagnosed in UK. Also makes it clear that in UK, people who are symptomatic for B12 deficiency should have an Intrinsic Factor Antibody test and start B12 treatment even if B12 result is within range. IFA test can help diagnose PA but is not always reliable so it is still possible to have PA even if IFA result is negative or normal range.
I always get copies of all blood test results. I learnt to do this after being told everything was normal and then finding abnormal and borderline results on copies.
Coeliac Disease
Coeliac disease can lead to B12 deficiency due to effect on gut.
In UK, two first line tests are recommended.
1) tTG IgA
2) Total IgA
My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coeliac disease.
Sadly sometimes doctors have misconceptions about b12 deficiency. I found it useful to read summary of B12 documents in third pinned post after reading above article.
"due to having constant heartburn for a year "
Some forum members diagnosed with high stomach acid have eventually found out they had low stomach acid. Symptoms of both conditions are similar.
I always put a request for copies of test results in a brief formal letter and sign and date it and hand it in at reception. I sometimes list all the particular tests, I want the results for, as on occasions one or two test results seemed to be missing.
My understanding is that patients do not have to give a reason even if asked for one.
GPs have to sign off on requests for test results so may take a few days for copies to be ready and there will usually be a charge per sheet eg 50p/£1 but could be more or less. Maximum amount for UK test results is £10, for complete medical records £50.
It is free in UK as far as I know to just view test results. Probably need to contact practice manager to arrange time to view. recpetionists shoudl be able to tell you process for just viewing test results/medicla records.
Your GP surgery may have online access to a summary of results/records. See GP surgery website for details. It is just a summary so may not have all the info wanted.
Thankyou so much for all of that information, i will have a good read when my daughter goes to bed. To be honest i have no idea what tests they done, i had a fbc and then the day after they requested i had another blood test but i dont know what it was. They haven't referred me to haematogist or neurologist. Im not used to questioning them but i will write down all my symptoms and talk to them tuesday.
Also my mum has a blood disorder, i cant remember the name but its basically her bone marrow ages prematurely, im not sure if thats worth mentioning or not.
It's me again. You were "advised to buy a supplement" by your doctor because your B12 was at "the lower end of normal and my red blood cells are abnormally large" so she pointed you in the right direction.
Be emphatic about your list of symptoms and if possible note those that have shown any improvement and those which appear to have got worse, It is not uncommon for this to happen but sadly there is no set timescale as we are all different.
Hi everyone just got back from my appointment. Feeling pretty deflated... the breath test showed no h pylori infection, also i wrote a long list and forgot to take it! (Told you my memory is bad) I did stress how awful im still feeling, it was a nurse practitioner i saw so shes having a meeting with the drs tomoro and ringing me thursday with what they decide. Im just about to ring the surgery as forgot to mention a few things to her.
I have been dealing with this crap since 2 months now. It all struck suddenly with burning sensation in my arms and shoulders. Fortunately, my family Dr (We have this concept of family Dr in India - Your primary Dr before going anywhere else) asked me to check my B12 and started me on injections right away. I have taken 10 injections over 5-6 weeks now.
Like you, I had muscle twitches especially in my thighs. Thankfully the burning sensation, extreme thirst, pins and needles, have resolved in my last 2 months. Post 6th jab, my chest pain started which freaked me out. Its not a severe pain but rather a mild ache enough to send my anxiety through the roof. Recently I got my chest X-Ray done which came out normal. My family Dr had also got my ECG since I had burning sensation in left arm and leg to begin with. Every time he has physically checked me and told me the chest pain has nothing to do with heart.
If you do not start on medication (Injections to be begin with), you will keep on falling in the level and then a broad spectrum of B12 symptoms will start hitting you. Even after 2 months, I am yet to feel my pre-B12 deficient person. It has changed my personality a lot. I am anxious most of the times these days which I had never been in my 36 years.
I still feel weak on some days and have numb fingers at nights. I am on multi vitamin tablets post my injections and hoping to get back to my usual self soon. It seems usually it takes around 4-5 months for people to start seeing improvements. Some symptoms disappear in days but some take weeks.
So i had a phone call from the practice nurse, she spoke to the dr and they are putting me on a 3 month trial of iron tablets because my iron is low? After she told me the other day my iron level was ok, and they're putting me on another tablet for my heartburn to see if that helps. She said the prescription was at reception so i walked there to be told its not ready untill tomoro, the 15 minute walk there and back has exhausted me, i do hope these tablets help me!
"I will talk to my dr on tuesday i just dont like to sound like im questioning her"
if I had not started to question my Gps and do my own research I think I would have developed dementia type symptoms and start of spinal problems by now. I always tried to be polite but none of my GPs at the time I was at my worst looked at the whole pattern of symptoms. I had appts with a variety of specialists to look at different groups of symptoms (only because I asked for these referrals) and with most of them, I asked if it could be B12 deficiency.
B12 deficiency is not always well-understood by Gps /specialists. I don't understand why none of them looked at all of my symptoms, test results and thought about what could cause all the symptoms.
I suggest doing B12 homework in case doctors have not done theirs....
Letters to GP
I prefer to put questions to GP in brief, polite letters as less confrontational than face to face. Letters to GP also give GP time to think before seeing patient again.
Have you asked GP if they will consider a trial of B12 injections?
Your b12 is at lower end of normal
Your red blood cells are enlarged (macrocytosis can be an indication of B12 deficiency and/or folate deficiency)
You have multiple symptoms including neurological symptoms
UK B12 documents (see BMJ article and BSH Cobalamin and Folate Guidelines) suggest treatment for anyone who has symptoms of b12 deficiency even if B12 level is within normal range.
I gave a copy of this to GPs plus a copy of BSH Cobalamin and Folate Guidelines and a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency"
If you have B12 deficiency and it is not treated, what are the possible consequences?
"mum has a blood disorder"
Does GP know family history? If not I think this is worth mentioning.
Have you considered joining and talking to PAS (Pernicious Anaemia Society)?
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