Hiya I was hoping someone can help me to make sense of my blood test.
The Nucleated Red Blood Cell Count (NRBC) result was as follows:
0.01 10^9/L
It is usually 0.00
Just wondering if I should be concerned as I understood adults should not have NRBC’s in their blood.
I can’t work out if this is very marginal given it’s only increased by 1, or if I should be concerned??
Any thoughts please.
Thanks!
Hi Sparkle44. My understanding of hematology is limited to what I google & can understand. But it seems that NRBCs are also called megaloblasts. As in another name for the effect of pernicious anemia: megaloblastic anemia. Megaloblasts turn into macrocytes, giving the other name for what PA causes: macrocytic anemia. These are enlarged RBCs. I guess NRBC should be 0 but I don't know the significance of your level. en.m.wikipedia.org/wiki/Nuc...
All this to say, do you have other results like MCV, MCH, MCHC? A recent homocysteine, b12, folate? Have you ever had active b12 or MMA tested?
I took a very brief look at some of your other posts. Despite some unilateral nerve issues, everything screams pernicious anemia, including the stomach issues. High homocysteine, tingling and pins n needles, vision issues etc etc. Have you ever gotten tested for Intrinsic factor antibodies & Gastric parietal cell antibodies?
High b12 levels do not preclude PA or functional b12 deciciency!
Have you considered asking for a trial of b12 injections? They cost literally nothing and if you show a clinical response, that in itself can be diagnostic.
And if you doctor won't consider it, you can always do a self-trial. It's what I had to do after doctors ignored my symptoms. My b12 levels were high but I had total numbness from my elbows to my fingertips. I started self injecting b12 six years ago and I don't regret it for a single second.
I just read another of your posts where you say docs discounted functional b12 deficiency because MMA was normal. HA! You describe me exactly. Every single b12-related blood test I had was normal in every way. Every damn time. Even homocysteine. Until I experienced the total numbness, then I had one test where MCV was 1 unit above range and MCHC 1 unit below range, and that's only because it was a Lyme lab with narrow ranges.
Just to say, not doctors, not specialists, not me or you or anyone else can definitively say "b12 won't help." You'll only know if you try it.
Hiya Jade thanks so much for your responses and taking the time to go through my previous posts. You could defo be on to something as I was referred to the Adult Metabolic Clinic for High Homocysteine and below the range for Folate. The Adult Metabolic Clinic found that I was a carrier of MTHFR and I also have a mild bile malabsorption issue. However they suspected that the high homocysteine was in response to low folate which can be an issue linked to MTHFR. The folic acid has made little difference so they started me on Vit B injections every 3 months. They help slightly with fatigue but it’s short lived. I feel drained of life pretty much most of the time and one GP even thought I had ME.
On Tuesday I am having 2 blood tests apart to check how my body responds before and after folic acid.
I had wondered about anemia but there is nothing remarkable in the rest of the blood tests. I will post results. They are all in the normal range apart from one that I am unsure about called Immature Granulocyte count which has increased from 0.01 to 0.04 in the last 8 weeks which is the same timeframe for the NRBC raising.
That's a really good start!
In the UK, treatment for B12 deficiency with neurological involvement calls for "every other day injections until no further improvement". Once every 3 months will barely make a dent. Sleepybunny could you add your links please? Sparkle44 could use BCHS/NICE guidelines to request more frequent injections.
The problem with diagnosing PA is that not everyone has the "anemia" part. According to the literature, a good 20% of people with PA will have neurological issues without any anemia. In fact some consider anemia a late stage finding. So the lack of anemia doesn't have much meaning. But if there is anemia, it could be yet another sign that docs can't ignore.
A couple of things about folic acid. First, lots of people with B12D & hypothyroid seem to have low folic acid. So it's not a suoer abnormal finding.
Second, more importantly, the literature and good medical practice state that folic acid treatment should not start until after b12 deficiency has been addressed. This is because there is evidence that treating low folate without treating low b12 can accelerate and worsen neurological symptoms.
Plus, supplementing folic acid will normalize RBCs and thus mask any anemia that was due to B12. The anemia will be corrected but not the b12 deficiency.
(In this scenario "b12 deficiency" means not only someone with low b12, but also anyone who has low b12 symptoms - even if blood b12 levels are high - which respond well to injections.)
If I were you, I'd work on convincing my doctors to trial alterate day injections. If that didn't go well, I'd consider self injecting (SI). Plenty of people here SI after being failed or ignored by their doctors.
You will find lots of help & support here regardless if which route you choose. 
This is really interesting and really helpful advice thanks!! I have defo had neurological issues with my memory and nervous system hence the recent diagnosis of neurological functional disorder which I am not convinced about. In brain scans the radiologist has commented on my cerebella being in excess of a person of my age which is 49 and one of my amino acid tests was low Serine which also impacts memory!
It’s all very exhausting when they uses phrases that like your blood results are unremarkable despite all the symptoms!!
My lovely GP is overworked and has started saying she is not the specialist which leaves me dependent on the consultants!
You're very welcome!!
I was a bit hesitant to say it, but since you mentioned it... I think FND is a bit like CFS or ME. It's not something you can really diagnose with labs and such, rather a constellation of symptoms with no apparent cause. But not very helpful to the patient since there's no treatment!
Stick around a bit & read other posts. You'll see that your symptoms are quite common here, as are your doctor's comments of "everything looks normal" when we know we feel anything but "normal"! Keep an eye out for Sleepybunny's replies as they are full of extremely useful info. As are other members' replies!
I take phodphatidylserine, it's very popular in Germany and it's used for memory and brain function particularly in the elderly.
Thanks so much will check this out as it’s becoming a real affliction! I have been in a meeting and called someone else my name; I have started to travel somewhere and got confused about where I am going half way through the journey. I have left my front door unlocked overnight; sat in the passenger side of my car when I am the only driver and the list goes on… it’s worrying. Neurology ruled out dementia / Alzheimer’s & MS thankfully but have left me with a vague diagnosis of FND - Functional Neurological Disorder. which they can only offer Cognitive Behavioural Therapy for. This treatment sounds bizarre given that CBT focuses on reframing your thinking to produce a different outcome! If my thinking / cognition is faulty then how can CBT work. Needless to say I have not got back in touch with the secretary after the consultant suggested I think about it 🙄
FND feels like such a damaging diagnosis given that it’s almost a throw away diagnosis when things cannot otherwise be explained! It is poorly understood in the medical profession so there is a whole school on consultants who believe the symptoms must be psychological. Therefore when presenting with new symptoms there is a danger they will be overlooked as FND. Meanwhile my blood results & MRI scans have shown changes in the brain (mild shrinkage).
I live alone. I am just 49 so the other common response is I am too young and it must be stress related. 🙈
Please note it's a scientist's opinion, not a medic's, and as such I can't give advice. For that, you need to see an informed medic.
NRBCs are Nucleated Red Cells. These are normally only found in the bone marrow, so finding them in the peripheral blood is, let's say, 'unusual'.
Red cell production in the bone marrow falls into different classifications. 'Normoblastic' [those NRBCs are referred to as Normoblasts, and mature to Normocytic red cells; normal size and haemoglobinization], and 'Megaloblastic', which means they are bigger, and typically foudn when there is a shorage of B12 or folate. Those cells mature into Macrocytes. Raised MCV and MCH.
It is unusual to find NRBC in the peripheral blood, but in Megaloblastic in the marrow, change, it's quite possible. The more severe the anaemia, the more likely this is to occur.
The immature granulocyte count is another matter. If your bone marrow is exhibiting some megaloblastic change then that could be simply a further reflection of that.
These figures you quote sound very much like analyser-generated figures; they're not likely to be microscope-derived. The modern analysers are very sensitive, but can on occasion get confused, and it's better to find out about this from the laboratory where the samples were analysed. [They probably won't thank me for suggesting this!]
As with most blood tests, if things come, and then go away again, it's probably not significant. Your doctor is the person to nag, because if they don't know, they should know someone who does.
Good luck.
Hi Sparkle,
You'll find lots of support here.
B12 deficiency is not always as well understood as it should be by health professionals so it pays to do a bit of B12 homework in case your GP hasn't done theirs.
Link about "What to do next" if B12 deficiency suspected or recently diagnosed.
b12deficiency.info/what-to-...
PAS membership is separate to membership of this forum.
PAS can offer support and pass on useful info
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
PAS support groups in UK
pernicious-anaemia-society....
Testing for PA
pernicious-anaemia-society....
Have also read that a pepsinogen test may be useful.
It is still possible to have PA with a negative result in IFA or PCA test.
PAS website has lots of useful articles that PAS members can print out.
pernicious-anaemia-society....
Some can be accessed by non-members.
You could point your GP to the PAS page for health professionals.
pernicious-anaemia-society....
May be possible for PAS members to arrange for their GPs to talk to PAS.
Talk to PAS about this if interested.
pernicious-anaemia-society....
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Link has letter templates that cover a variety of situations linked to B12 deficiency.
NHS Complaints
patients-association.org.uk...
Care Opinion website
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment.
Not currently taking on new cases but this may change in future.
Local MP/devolved representative may be worth talking to if struggling to get adequate treatment.
A few go to the Press/other media
Newspaper article about patient struggling to get B12 treatment in Scotland
eveningtelegraph.co.uk/fp/i...
And a positive follow up story
eveningtelegraph.co.uk/fp/b...
UK B12 documents
NHS article about B12 deficiency (simply written)
nhs.uk/conditions/vitamin-b...
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Summary of BSH Cobalamin and Folate Guidelines
pernicious-anaemia-society....
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
BMJ B12 article
Emphasises need to treat patients who are symptomatic even if their B12 level is within range.
BNF Hydroxocobalamin
bnf.nice.org.uk/drug/hydrox...
NICE guidance Suspected Neurological Conditions
NICE- when to refer B12 deficient patient to neurologist/haematologist/gastro enterologist
cks.nice.org.uk/topics/anae...
NICE CKS B12 deficiency and Folate deficiency
cks.nice.org.uk/topics/anae...
There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.
nice.org.uk/guidance/indeve...
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages)
"The folic acid has made little difference so they started me on Vit B injections every 3 months."
It concerns me that you were given folic acid before starting B12 injections.
Treating a folate deficiency without treating a co-existing B12 deficiency may lead to neurological problems. In a person with both deficiencies, B12 treatment would usually be started first.
BNF Folic Acid
bnf.nice.org.uk/drug/folic-...
See Cautions section in above link which says that folic acid should never be given on its own for PA (Pernicious Anaemia) or other megaloblastic anaemias caused by Vit B12 deficiency as this may lead to SACD, subacute combined degeneration of the spinal cord.
Local B12 deficiency guidelines
CCGs (Clinical Commissioning Groups) in England were replaced by ICBs (Integrated Care Boards) on July 1st 2022. Likley that ICBs will take on clinical guidelines of the CCGs they replaced.
Each ICB/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency.
Worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.
Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of ICB/CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to ICB/Health board asking for a link to or a copy of local B12 deficiency guidelines.
Read blog post below if you want to know why I suggest getting hold of your local B12 deficiency guidelines.
b12deficiency.info/gloucest...
Two useful B12 books
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
BNF info in book is out of date. See BNF hydroxocobalamin link.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)
Very comprehensive with lots of case studies.
Misconceptions (wrong ideas) about B12 deficiency
B12 article from Mayo Clinic in US.
The Many Faces of Cobalamin (Vitamin B12) Deficiency
ncbi.nlm.nih.gov/pmc/articl...
Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.
Misconceptions about a B12 deficiency
(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)
stichtingb12tekort.nl/engli...
UK blog post that mentions misconceptions about B12 deficiency
b12deficiency.info/a-b12-se...
Diagnosis and Treatment Pitfalls(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)
b12-institute.nl/en/diagnos...
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Some of the info will be specific to UK.
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
healthunlocked.com/pasoc/po...
I am not medically trained.
"hence the recent diagnosis of neurological functional disorder which I am not convinced about. "
There are forum members with that diagnosis including me, other common ones are psychosomatic symptoms, depression, ME/CFS/Fibro and hypochondria....I had all of those as well.
My body was crying out for B12 and they couldn't see it.
I think part of the problem is that doctors do not in general understand the sheer range of symptoms B12 deficiency causes.
When all chance of NHS treatment ended , I resorted to self treatment...I already had dementia and spinal symptoms.
wedgewood has written helpful posts about getting supplies.
Sounds like you have had a fight on your hands! FND is just so damaging as medical professionals just won’t take you seriously. OMG if they tried the hypochondriac label on me I would have lost the plot!!! It’s just sooo frustrating!! They almost need to have specialists for those of us with many symptoms so they can join the dots. We are often under multiple hospitals & multiple specialists & despite the tests I believe a lot of their conclusions are subjective!! Thanks so much for sharing your experience it will help me to fight on!!!
Hi there
I, like you, have an FND diagnosis. But I know that it is not FND because I have been self-medicating with B12.
Because Doctors receive 30 minutes of training on B12 and anemia, and around half a day in total on nutrition and vitamins, the public at large is exposed to ignorance, negligence and poor quality practice.
You do not have FND. You have a long stading B12 deficiency issue. You mentioned in a previous post that you eat a veg and fish diet. It is possible that this has contributed to low levels of B12, since red meat has the highest value of B12, and if you haven't been eating red meat you may have been coasting on low levels.
If you have been under alot of stress, this can impact your B12 levels. b12 is needed to support the nervous system and vagus nerve that runs between your gut and brain. Stress will programme your brain to start the fight or flight mechanism and this will have a direct impact on your gut. This, in turn, could interfere with the guts ability to absorb B12 in the correct way and set off a chain reaction.
It is VERY possible that you have a B12 absorption issue. To diagnose FND requires a neurologist to indicate 'positive signs'. I challenged my neurologist to share with me the positive signs that indicate FND and they said 'they stood by their diagnosis'.
I have been waiting for 7 months for the FND appointment, only for it to be moved to a date I could not attend. Now I must wait until March, when all I will do is challenge that individual to explain to me how I could have improved based on 14 months of self injecting B12.
The neurologist who diagnosed me suggested my self injection was a 'placebo' and that I should 'stop injecting stuff I've found on the internet'.
I'm afraid I am very cynical about medical support around B12.
Personally, I would not take your FND diagnosis seriously. If you can afford to, try to find a functional doctor or nutritionist who could take a holistic approach to supporting you.
The NHS is only good for saving lives and prescribing pills you don't need.
Please look after yourself and do not rely on Doctors.
Hi Pickle thanks so much for your response! It’s just horrible to hear everyone’s struggles and trust me the FND clinic is a joke!! I genuinely thought they would do more investigations and support with individual symptoms. Instead she went through my symptoms which I already know and told me my brain and nervous system have malfunctioned like a computer and I need to have some cognitive behavioural therapy. I mean what the hell!! Absolute nonsense!! If the B12 injections have worked for you that is fantastic! I get around a 4-5 days of increased energy after the jab but maybe they are not often enough. I need to get them to remove the FND diagnosis as I have already experienced one consultant raise it and then discharge me 😳🙄🙈
Wow....well, that really will be a waste of time for me since I did CBT after the chaos of B12 deficiency and all the mental anguish and disruption it caused. And I can't say the CBT changed my life to be honest. Maybe a helping hand through a rough patch.
I think you mentioned once every few months? That's certainly not enough, especially if it's been going on for a while. And you're explaining some quite serious symptoms. Every other day is the only way I regained my mental clarity and removed the panic I experienced.
I'm a little apprehensive of going to the FND clinic really. If I go, will that confirm that I accept the diagnosis? But if I don't, will I look like a time waster?
It's all a bit of a nightmare so I guess all we can do is keep going and hoping for the best.
I also had one neurologist say that 'he displayed marked health anxiety'. Well, yeah. I'm really ill and no-one is telling me why? Would you not be anxious if your body and mind aren't OK and no-one can explain it? And since when did neurologists train in health anxiety? Wouldn't a psychologist need to run some tests first?
I hope and pray that more GP's get B12 deficiency so they can start to advocate for us all.
Good luck with it.
Hey Pickle, at the end of the FND appointment they will either confirm the diagnosis or not. Then it’s on your record. I am finding the FND group on here good. I am not sure you have FND. It’s like when you have bowel issues and because they don’t find the big C they label it IBS. If you are concerned that future health issues will be minimised or dismissed with the FND label then I would urge you to fight it and to evidence all the physical symptoms that have been evidence by blood tests or scans!! It’s shocking that we have to go through this and then they want to label it anxiety!! What do they expect! I make it clear it’s not a health anxiety and whilst yes it is exhausting trying to explain my symptoms that it has not affected me psychologically as that is the trap they want you to fall into. Once you admit stress / anxiety / depression it will strengthen their case for FND as even though some will reassure you that they don’t think it’s psychological- on a sliding scale of their most likely view - this is it. Then they want to offer the therapy as if they address your emotions then your physical health will improve!!! 🙄
That's really helpful to know, thank you Sparkle44 !
Yes, it is so patently obvious that I have B12 deficiency since it all started in 2019 with a parotid gland tumour, thyroid nodule, and agonizing stomach problems.
I had a colonoscopy, then surgery for the two tumours than B12 deficiency within a few months. It really should've been found earlier since I'd raised symptoms with two other doctors, then became so ill I couldn't think straight and was crippled with confusion and anxiety.
Since B12D causes anxiety, I think it just shoots straight through any commonly accepted knowledge about the human body. But of course we're all reliant on tests and if you don't show up on tests then you're fine.
Because the test are perfectly flawless, aren't they?
Based on what you've said I'll probably cancel the appointment. I think I've been kicking a can down the road. I'll just have to accept that I'll never get medical support and keep going on my own.
Your situation is more complicated and I hope you can get the help you need.
Strange how once I started treating myself with B12, my neurological symptoms improved and some disappeared.
Hi Sleepybunny this is extremely helpful. I have lots of reading to do. Thanks very much for your response and the time involved in putting all the information together. Much appreciated!
Producing new red blood cells
Large Red Blood Cells Detected. 
Enlarge Red Blood Cells & B12
red blood cells normal, B12 65 IF antibodies - doc stumped - any ideas
Full blood count results.
