I wonder if anyone can advise: My daughter who is in her early 20’s, just had her blood test results back and the GP has said everything is “normal”. Her symptoms have been chronic fatigue, mouth ulcers, ‘sore bruised’ feeling in mouth, lots of dizzy spells and feeling like she is walking on water, no appetite and nausea. She is generally very unwell and run down and it is affecting her life and work. She has sometimes commented that her memory is getting worse and her brain isn’t working.
Her serum B12 is 177 ng/L with the lower limit being 160 ng/L on the print out. I am sure this reference range has reduced as a few years ago it was 180 ng/L.
I would be very grateful if anyone can point us in the right direction here as I’m sure that 177 ng/L is appallingly low and in Japan the cut off point of 500 to 550 ng/L and i think in the USA it is 200 ng/L.
I cannot understand how our health care system can quite happily let a young woman continue with these symptoms and results ! It is really affecting her life.
Thank you so much for reading!
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Elsa1509
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Very sorry to hear that your daughter is so unwell. My experience is that I was right in the middle of "normal" (600-650pg/ml) for many years despite continual neurological decline and overwhelming fatigue but none of the many medical professionals I saw even considered the possibility of PA. Fast forward nearly 20 years and a young, forward thinking GP (new to me) ran a PA panel with tests for Methylmalonic Acid and Homocysteine levels and antibodies for Parietal Cells and Intrinsic Factor (along with the standard B12 and Folate levels). Both my Methylmalonic Acid and Homocysteine levels were elevated and I tested positive to Parietal Cell antibodies. Translation, I had been suffering from PA for nearly twenty years with "normal" serum B12 levels. I tell you all of this as a recommendation for your daughter to find more in depth testing to really rule out B12d/PA as her serum levels don't mean much and, to me, they look very, very low. If I can test "normal" on the serum test yet prove to be deficient of B12 upon better testing, then she may very well be suffering needlessly. I sincerely hope that you find solid answers and that she is able to regain her health.
Thank you so much EllieMayNot for your reply and I am so sorry you had all those years of being undiagnosed. It really is terrible the way things are not better investigated here unless the blood test results are abnormal. I reckon if the result had been 159ng/L they would have maybe done something about it. My daughter is clearly suffering without any other obvious cause (although her ferritin is often low but is now 25). Even when it was 12 last year (range 11 to 350) she was told it was fine as “within normal limits”. It is so unbelievable !
We are going to ring the dr back and ask for more in-depth tests re the low B12 and thank you for your advice on that. My daughter is trying to start out in life and in her very early 20’s and we need to sort this out for her sake. Even her dentist is more worried then any doctor, and has said she needs to be tested for things! At least he is switched on.
The myth about the the cut off in Japan being 500/550 has been debunked many times. It is not true.
The lower limit may have changed because they changed to a different assay method. Each has a different range for normal. The 'normal' range is picked as a compromise. Too low and they classify too many normal people as being deficient, too high and they classify too many deficient people as 'normal'.
This document, from Hull and East Yorkshire NHS, describes their protocol for B12 testing and treatment. It describes how they decided on their normal range of 115-1000 pmol/L - which might seem low, but 4.5% of normal people will test as deficient. Sensibly, HEY also have an indeterminate range for those who are deficient but above the bottom of the range. hey.nhs.uk/wp/wp-content/up...
Unfortunately, the serum B12 test is neither precise, nor accurate. So your value of 177 ng/L could represent an actual value of 140 to 200 ng/L.
I would give the doctor the HEY protocol and ask him to follow the flow chart for people with objective evidence of a deficiency (the symptoms you describe) and intermediate serum B12 - the right hand path in Fig. 1.
That treatment would be - start B12 injections according to the BNF and test for IF antibodies. If the antibody test is positive or there is a positive response to the B12 then she has injections for life.
Thank you so much fbirder and your reply came just when I had finished talking to the doctor and I’m now despairing with his response. He was almost ‘mechanical’ in sticking to reference ranges and despite all my daughter’s symptoms he didn’t think any B12 supplements were needed and that everything was “normal”. I had to really hold back from losing the plot with him ! We haven’t really got the finances to go privately but my daughter is barely coping with her new job and has already had sick days. Given your invaluable advice we are now going to go back to our normal GP and plead our case. It’s not right or fair that “ no further investigations are necessary” in his words when my daughter knows every day that there is something wrong and she is struggling so much.
Thank you once again for all your help - it really is appreciated.
Write to your doctor, including this article from the British Committee on Standards in Haematology (the biggest brains in British blood). onlinelibrary.wiley.com/doi...
Highlight the bit in the Summary of Key Findings where it says
In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment.
Thank you so much fbirder and I will take this course of action even if it causes a ruckus with the doctor. They have to start listening to patients’ symptoms and looking at the bigger picture. Thank you for your support !
Hello, I had B12 deficiency at 19, I am now 20, so I’ve had it for a year, so I can relate. My B12 levels were at 172, and the doctor said “your level could be at 900” and I’m sure I read somewhere that the normal should be 500 and above. They haven’t diagnosed me with anything that could have caused B12. I should have been taken iron tablets but I haven’t, and B12 & iron are like best mates, they have to work together in order for you to feel a bit better.
Does she have the B12 injections? Did they check her iron levels? Have they tested her for Crohn’s disease or pernicious anaemia?
At the start of everything, I had experienced the same symptoms as your daughter. A year has passed I still get foot cramps horrifically, which has hindered me to do exercise. I get really bad ulcers in my mouth, especially if I eat anything remotely hot. My memory and everything isn’t that great but it’s improved a bit from how it was. So there is some benefits to having the B12 injection, but I’ve noticed by the last month I’m really fatigued, and my body is yearning for the injection. (I have to have B12 injections every 3 months for the rest of my life)
I hope this helps, & I hope she gets better. Sometimes I’ve noticed that the doctors aren’t really educated on this kind of stuff and will blame it on anxiety or diet. So try and not let them fail you!
Hi Quinny99. I’m sorry you’ve been through it too and thank you for your reply. My daughter is 23 and has never had a B12 jab and I think this is the first time she’s been tested. She’s prone to low ferritin like me and it’s normally bottom of the range. She too says that her memory is so bad and she struggles cognitively a lot of the time. She had Salmonella as a very young child and her gut has never been the same since then despite probiotics and quite a good diet. She barely drinks alcohol.
I wasn’t clear from your post if your GP said your levels should be around 900?
I have found a clinic near to us where they do B12 injections privately but each shot is £50 which is too expensive so we are going to fight for the NHS route.
I’m sure my doctor explained like my level is at 172 and it could be as high as 900 and it’s not, I hope this helped.
The treatment from the GP is 6 shots over two weeks and then one shot every two or three months, depending on what has caused it.
I read on the NHS website that if it is diet related you’ll have two shots a year and you can take b12 supplements. But if it’s shots for the rest of your life, then it is something more serious like crohns or Pernicious Anaemia. You have the shots because I’m sure your stomach can’t absorb it as well as others.
I would definitely go to the GP and get it sorted because it could be an underlying condition. -I hope this helped.
Thank you Quinny99 and that’s interesting to read about your treatment. It gives us a better idea of what to expect and why. We need to find out if this is diet related or there is a bigger problem with absorption caused by PA. I think it could be a long journey and the battle has only just started 😕. Thank you once again !
If the NHS can't help then I would pay the £50 for one shot - just to make sure that she doesn't have an adverse reaction.
After that You could buy the B12 from Germany and the needles and syringes from medisave. It works out less than £2 per shot - as long as she is OK injecting herself.
Sounds familiar. In 2016, with terrible symptoms, I was at 256, nothing was done because a B12 deficiency was 'ruled out'. Only in 2018, when it had dropped to 157, I got treatment.This enlightened me later on: stichtingb12tekort.nl/weten.... Now slowly but surely getting better.
Thank you so much for your reply Hanneke12 which is so helpful. It also confirms what we are thinking but I was sorry to read that it took so long for you to be diagnosed. That’s good that you are getting better but I’m sure it was horrible when you were deficient. The link you sent was so good and informative so thank you for that.
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Symptoms but “normal results” 
Problems with a sore and poisonous tasting mouth.
Active B12 test results
