Hi
I went to the doctors because of constant pins and needles and extreme tiredness ,my blood results showed that my red blood cells where too large ! So more bloods have shown my B12 is low at bottom of the range (190), I'm now awaiting blood results from intrinsic factor but from reading I know this isn't always reliable ,my gp said come back in a month but I feel awful,
Any advise appreciated
thank you
Hello Wendy,
I’m sorry you are having a hard time with this, I’m a year down the line now and all I can really advise is to keep pushing. It’s not an easy thing to live with and you will probably feel a lot worse before you start getting better. After dropping rock bottom I had more tests and they realised by thyroid wasn’t working and vitamin d deficiency aswell as the b12 in which I had the same symptoms as you have. It might be worth looking at the thyroid if they haven’t already. I hope you get well soon and you will have to keep me updated in your process.
Progress 🤨
Hi Vicky
my thyroid has been tested too so waiting results,I'm back at the doctors next Friday but feel awful, the symptoms are quite scary I woke last night and my hands were numb and Iast few days I feel very unsteady like I'm going to fall over.
Are these symptoms normal ?
Many thanks
The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".
Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"
If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.
I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.
I'm not a medically trained person but I've had P.A. for over 45 years and I wish you well.
HI Clive
thank you for your information it's all very helpful, I'm back to doctors on Friday but just rung for blood results and have been told my B12 has gone up from 190 to 224 I'm so worried the doc will say there's nothing wrong and send me away ,I feel awful is this still a low level for B12 ?
many thanks
Remind your doctor what the British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".
In other words your doctor should treat your symptoms not just look at the computer screen.
If he loves his computer ask him to look up the British Society for Haematology guidelines and the N.I.C.E guidelines on the treatment of B12/Folate deficiency - it's all there in black and white - or colour even.
You don't show the range <from - to> but your B12 at 224 is still "bumping along the bottom"
Thank you Clive
It is also important that your Folate level is monitored as this is essential to process the B12.
There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.
Symptoms of a folate deficiency can include:
symptoms related to anaemia
reduced sense of taste
diarrhoea
numbness and tingling in the feet and hands
muscle weakness
depression
Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body and your B12 levels are "bumping along the bottom of the range.
According to the NHS Choices site "Vitamin B12 or B9 (commonly called folate) deficiency anaemia occurs when a lack of vitamin B12 or folate causes the body to produce abnormally large red blood cells that can't function properly."
So as I said above whether it is low B12 or low Folate that's for you doctor to find out.
I wish you well and bid you goodnight
Hi Clive went to doctors today with a list of symptoms
pins and needles
fatigue
tinitus
sore tongue
unsteady on my feet
nauseous
headache
breathlessness
my B12 has gone up from 190 to 227(212-900)
i have been told it's unlikely that these symptoms are related after examining me she says I may have heart murmur and have been referred to a cardiologist, I'm feeling totally fed up !!
Oh dear Wendy I really do feel for you.
A heart murmur may account for:
fatigue - unsteady on my feet - headache and breathlessness from your above list, but not the others, which when put all together, are classic signs of a B12/Folate deficiency.
You said at the beginning that you had had your Intrinsic Factor tested for antibodies (IFA) - have you been given the results yet?
Sadly the serum B12 test is not very reliable and if two samples were taken ten minutes apart they would very likely come back with different levels. The same applies with the IFA test which is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA. However, a positive result is a sure-fire, 95% certain indicator of PA.
Your doctor should know this but she is "happy" to spend a great chunk of her budget sending you to a cardiologist on a hunch that you "may have heart murmur" when for a few pence at a time she could give you a therapeutic trial of B12 injections that could be the answer and would certainly raise your levels from off the bottom.
Did you mentions the advice from the British Society for Haematology guidelines which say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".
Going back again to your original post about large blood cells, "B9 (commonly called folate) deficiency anaemia occurs when a lack of vitamin B12 or folate causes the body to produce abnormally large red blood cells that can't function properly." Was your Folate tested?
Do you know how long it will be before you get the cardiology appointment? Can you wait until then to see if the murmur can be ruled out? If so you could raise the question of B12 with him - you never know he might have heard of it.
I'm sorry I cannot be of much help to you as things stand at the moment as I'm not a medically trained person but (and I'm reluctant to advise you to do this as it will "skew" any further test results your GP may wish to take) it may well be that the best cause of action for you is to self supplement with B12 and folic acid and see how you get on.
I'll bid you goodnight
Thank you Clive for your advice it's all very helpful.Doctor said all symptoms together weren't related !!! I've requested all my blood results from the last 2 months and I think I will see cardiologist and ask his opinion
Hi Wendy. I have been reading your post and thought I'd let you know my story as my doctor's also didn't take me too seriously at first, I have been suffering with digestive issues - obviously been told it's ibs but didn't give up - long story short it took them and me 2 years to finally begin the treatment. My b12 levels in 2014 were 200 and that wasn't even flagged so I was unaware. My red blood cells at that point we're enlarged - no one took any notice. They tested me for everything else in those 2 years and finally when I started having terrible pain in my fingers and toes - they checked my b12 which has gone down to 143 and 2 weeks later 113. Started treatment right away - been referred back to gastro doctor for more investigation but nothing was found as to say why I'm deficient. It's been a year since I got my first injection, it took few months to feel better - but I can say after 12 months I see amazing improvement. I struggled with losing weight before , I've felt depressed, I had pains in my feet and hands - which they said wasn't related but I'm 💯 convinced it was ! I still get them when I'm due an injection. My digestive problems are not as bad anymore, still suffer but nothing in comparison. I have lost 1st 3lbs in a year without trying too hard - basically by doing what I was doing before - I wasn't massive before but was stuck at 10st and now back to my normal 8st 11 lbs weight. So if I was you id seek 2nd opinion or change the doctor, b12 is so cheap - why wouldn't they try just in case ? Let me know how you get on xx
....about large blood cells, "B9 (commonly called folate) deficiency anaemia occurs when a lack of vitamin B12 or folate causes the body to produce abnormally large red blood cells that can't function properly." Was your Folate tested?
Your IBS puts you at risk of developing a B12 deficiency. Have you tried a few drops of lime juice or apple cider vinegar in a glass of water to help raise your stomach acid levels?
I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.
I wish you well
Hi, i believe they have run all blood tests and only b12 was low, mcv raised and alp low - they have diagnosed me with pernicious anemia however they are saying they dont understand why i have got it and its one of these things. I had colonoscopy, upper endoscopy so i feel like they did all tests possible. My doctor said that ibs doesn't cause deficiency, they tasted me for parasitic infection just in case- 2 weeks after injection my levels were 400 so not massively high. Im getting treatment and im quite happy with it. I follow very healthy diet and try not to eat things that upset me - so overall comparing to what it was 2 years ago its so much better. Do you know why you have pernicious aneamia? im 33 so mine is not age related- well im probably just b12 deficient i doubt i have pernicious anemia- my IF was fine same as biopsies taken during upper endoscopy - since injections all my results are fine. Apart from my sugar levels but thats completely unrelated.
Hi Dee,
i feel so frustrated i too have suffered from ibs for years, last week I requested a copy of my blood results and was shocked to read that my B12 was 190 (211-911) I had been told it was low but within range I now know this wasn't true.Doctors says my symptoms don't relate to each I feel so frustrated she has referred me urgently to cardiologist who I see tomorrow, my bloods still aren't right as I can see from my printed results but was told not to worry they are fine.So I will go tomorrow and get consultants opinion and then return to GP but think I'm in for a battle. I now feel so awful that I can barely work as I'm so tired and am too wobbly on my feet to stand for long
many thanks for taking the time to reply I feel like a hypochondriac at the moment
In a normal healthy person the stomach lining has what are called "Gastric parietal cells" which produce "Intrinsic Factor" which travels with food through the small intestine which is made up of three parts - the Duodenum, the Jejunum and the Ileum..
Iron is absorbed in the Duodenum, most other nutrients in the Jejunum and our friend B12 in the Ileum.
Here the Intrinsic Factor binds to the B12 and the "B12/IF Complex" enters the cells on the wall of the Ileum after binding to receptors on the surface of the Ileal cells, allowing it to enter the blood stream.
Sadly some people with "traditional P,A." either do not produce Intrinsic Factor or if they do, they also produce an antibody which destroys it and it is then called "Autoimmune Pernicious Anaemia".
In addition it can happen that we produce "Parietal cell Antibodies" and "Intrinsic Factor Antibodies" which totally wipes out any chance of absorbing the B12.
The Intrinsic Factor Antibody (IFA) test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA. However, a positive result is a sure-fire, 95% certain indicator of PA.
My P.A. was as a result of having two thirds of my stomach removed due to a perforated peptic ulcer at the age of 17 in 1959 and it took 13 years before I eventually go the diagnosis by which time I was a walking Zombie.
My then doctor gave me two years to live - unless I ate raw liver three times a day - or - had B12 injections for the rest of my life. Much as I like liver with bacon, onions, gravy and potatoes I opted for the injections and I'm still "clivealive" and now over 75 
"B12 was 190 (211-911)" is deficient!!!
Thank you Clive I was shocked when I got the copy and couldn't believe I'd been told it was low but ok !! In future I will always check results myself
Thats the problem with doctors - when i spoke to private dietitian - he said all my symptoms were b12 related- i suffered terrible headaches too. When i went to my gp and said my pain in fingers and toes was so bad i needed 4 ibuprofens to settle it before i could fall asleep - she gave me a lecture on overdosing ibuprofen - i was like- you are missing the point- something is wrong- she just told me she never heard of it. Honestly i walked out and cried cause she made me feel like im making it up. Thats why im saying - dont give up keep digging - ask them to repeat b12. It has changed my life. Holland and Barret do B12 spray which is meant to be better than tablets - maybe try to supplement first - you dont know if problem is with absorption in which case you may get better with tablets or spray?
I have also went to a private doctor (im polish and go back home at least twice a year - its very cheap and easy over there to go private) who prescribed me injections which i do myself- ofcourse its not something i will advise you to do - but my private doctor keeps an eye on my levels and also told me that european guideline for treatment is an injection once a month - in UK once every 12 weeks which sometimes just isnt enough.
Keep going back and dont give up x