It's 151 & my Folate level is 2.2 is that OK too
My GP says my B12 level is normal, is... - Pernicious Anaemi...
My GP says my B12 level is normal, is it?
Written by
KTMac
To view profiles and participate in discussions please or .
Read more about...
57 Replies
•
Hi
What is the range for the B12
Usually the bottom figure is 180 or 200
so if your bottom figure is one of these numbers than yours is very low and you should be offered injections
folate is also low, less than 3 is deficient
Your Doctor should also prescribe Folate supplements
How are you feeling?
Could you clarify for me; I thought the range on my blood tests were the numbers the NHS would consider normal, is that right?
Yes, the NHS would consider your level of 151 as normal because it is in range but the range is vast and you are near to the bottom of the range and have lots of symptoms, so like others have said you need more tests to confirm if it is B12 deficiency causing your symptoms.
Some Doctors will agree to injections if you are low in range and have lots of symptoms. My husband's level was 220 range 180 - 1100 and because he had a lot of symptoms his Doctor agreed to the injections.
In Japan the bottom of the range is 500
I have also read that you can start to get symptoms if your levels are under 450
Best wishes browny
So the difference in ranges I keep seeing is differences in location in the UK rather than person specific - OK I can deal with that (I wonder what it is in Sweden)
Yes. different U.K. health authorities use different ranges.
The range you have is from the health authority who did the test.
Are you from Sweden?
My b12 is 249 and folate is 4.5. I have heart palpitations, fatigue, breathlessness and dizziness. Ive been told i have anxiety.
Hi
Your symptoms could be caused by low B12. Why don't ask for advice in a new post on this forum and more experience members will reply with advice.
Click on "write a post" on main forum page (right side, top of page)
Good luck.
I have chronic Fatigue Syndrome, Fybromyalgia, IBS & recurrent mouth ulcers - generally I feel crap (tired, pain, pins & needles, numbness, losing power when using a tin opener or scissors)
Plus I'm on an exclusion diet (FODMAPs) which means I eat a very small range of foods
The range on my test results said 120-110 so my GP said it was fine but it seemed a bit low on the range
Hi just wondering because of yor symptoms whether you have been tested for coeliac disease? Both my daughters b12 and my own were 227 and 250 and we are having injections. Our gp is very good but I took him the nice guildlines which advise if neurological symptoms are being experienced the injections should be prescribed. My daughter has 1 injection a month because her symptoms were worse than mine
You have put your range as 120 - 110 is this a typing error?
All your symptoms can be cause by low B12 deficieny.
doctors do not usually treat if your are in range (some will if you are suffering with lots of symptoms)
You could go back and ask the doctor if he will give a trial of B12 injections, if he will not you can self supplement.
You can buy Jarrows B12 lozengers on Amazon that dissolve under your tongue and go straight into your blood stream. You should also supplement with folate.
Hope this helps.
Sorry yes - the range should be 120-1100 which seems a wide range
Thanks
The GP asked me to buy some folic acid tablets as that would be fine
Hi KTMac
Sounds like you are in urgent need of a number of things, perhaps even a change of GP.
The symptoms you outline are all indeed indicative of a B12 deficiency, with a bias toward the Neurological aspects being strongly indicated. PLEASE!!! DO NOT start to self medicate prior to completing tests, the outcome of which will analyse your problems properly. If you start to self medicate, your doctors will be unable to ascertain the true picture.
My personal advice would be to request that your GP carries out an Intrinsic Factor test, followed by a test for Parietal Cell Antibodies, if these come back NEG. then you will know that you can absorb B12 via the gut. Having ascertained these factors, I would strongly suggest that you take a HoloTC test and if that shows as being in the grey area, then an MMA test will be required in order to simply ascertain the exact B12 levels. If you are also concerned about your Folate levels and it would appear to be low if your GP is asking you to purchase Folic Acid tablets, even though you do not appear to have been provided with a range figure, then might I suggest that you give consideration to a Homocysteine Test, this is a very good indicator of both the B12 and Folate levels.
Regarding treatment, I would suggest you start with your GP and injections + 400 micrograms of Folic Acid daily, if the test results are indicative of such a need and you see how you go from there. However, the latest research in this field indicates that Methylcobalamin is more effective in many Neurological cases, than Hydroxocobalamin normally given in injections by GP's. The reasoning is that Methylcobalamin appears to have the power to repair and restore the Myelin coating on the affected nerves. I would strongly suggest that once you have ascertained all your test results, if treatment is required, then your GP carries out a blood test at least every 3 months for the first year and that you keep a daily record of your progress and symptoms in order to aid future analysis.
The HoloTC - MMA and Homocysteine test are available from Guy's / St Thomas's Hospital in London by post. Although whole blood will not be suitable for the Homocysteine test, you will need to get your GP to arrange for your local lab to separate the Serum and perhaps freeze it if possible, prior to posting. Should you consider these tests, then you can get advice for Denise Oblien on 0207 188 7188 at Guy's Hospital. You will however need a referral letter from your GP, prior to these test being carried out.
PLEASE!! DO NOT IGNORE THESE SYMPTOMS! They can become very serious if not treated properly, whilst simple treatment should be readily available from your GP.
Hope all this helps and you soon begin to feel better, although please be prepared to understand that even the best treatment programs need time to take effect.
Best wishes B12 Turbo
I think I had one of those too (sorry I'm not sure what is important & what isn't)
Intrinsic factor antibody
Access IF result 0.99 AU/mL (0.00-1.53)
IFR Negative
I'm looking for "Parietal Cell Antibodies" could that be called anything else - I have 4 page of tests........edited to add I just found it Parietal Cell autoanitbodies Negative
I also have MCV 102 & MCH 33.7 are they relevant?
The range for Folate was 2.7-15
I have had these symptoms for nearly 20 year since my Chronic Fatigue was diagnosed.
The GP thinks it's because of my recent exclusion diet rather than a long term problem
I am seeing a gastro specialist for the IBS because it has gotten out of hand
Mine was 147 and they treated me as if it was very low and gave me loading doses and sent me to a haematologist, gave me the Schilling Test etc (this was a few years back). So I'd definitely get a second opinion. Also, a lot of my tiredness went away on going gluten free, so I'd agree with looking further into coeliac.
Just a quick point about your IBS symptoms/problems. Before I was diagnosed with PA (my serum was 80) my toilet habits were appalling. Everything seemed to upset me, I also cut out gluten and was tested for celiac disease but these came back negative, nothing improved my symptoms until I was around 6/8 months into B12 treatment. I was given injections once a week after the initial loading doses and I greatly improved. As well as all of the very good advice given to you by B12Turbo, you may want to consider that this could be another of the long list of symptoms pointing to a deficiency. There are so many subtle signs that all is not well that culminate over the years, we often get so used to living with them that we don't realise that they are NOT normal. Good luck
Hi KT Mac
May I suggest you ring Denise on 0207 188 7188 and ask her if you can E-mail your bloods down to them, the lab will soon help you make sense of things and tell you if you need further testing.
I can see where your GP is coming from, diets could have caused your present reading to be out of kilter, but today's diet is unlikely to have caused your symptoms 20 years ago, unless you were on it then of course.
Please get professional help as soon as possible, at the very least simply look on it as a second opinion, even your GP should listen to a team that specialize in working with problems associated with B12 every day. See if you can talk to Dr. Dominic Harrington, Dominic is the Director of Medical Research at Guy's, he is a great chap and very well versed in the subject of B12.
Best wishes B12 Turbo
Just to let you know KTMac, Dr Dominic Harrington will only speak to your GP. Not the patient. I've already been donw this road and told by Denise. My GP is not bothered to speak with him even though I suffer from neurological problem like yours. Dr Harrington doesn't do private consultation either so I hope your GP is much more sympathetic and caring.
Thanks - I will get in touch with her next week
I certainly wasn't on this diet 20 odd years ago - I hadn't even worked out I can't eat almonds or coconut at that stage (I couldn't eat oranges by then) - although that was when my IBS & CFS first emerged. I was very poorly for some time.
Just a thought KTMac, what were your Thyroid blood results ? Your symptoms are most similar to mine, I have Hypothyroid.
Many of us with Thyroid problems have 'within range' / 'borderline' blood results even though still feeling ill with Fibromyalgia /CF symptoms.
You might already know that B12 deficiency can mimic Hypothyroid.?
Take a peek on Thyroid UK on here - HealthUnlocked. (I am joined to a few HU sites for different medical reasons due to overlapping symptoms.)
Hi KTMac
Just to let you and perhaps others know that many B12 problems are misdiagnosed, such as IBS, MS, Alzeimers, Dementia, Autism, Depression, Chronic Fatigue, Mental Illness, Infertility, Frequent Falls, Forgetfulness and even Development Delays in children, to name but a few. There is a book available called "Could it be B12" available from Amazon and others, which highlights years of an Epidemic of Misdiagnoses, with regards to B12 and does so in Lay terms, well worth a read. Perhaps a good idea to purchase one for your GP if your not happy with his / her outlook on your problems. It should be well received if presented in a diplomatic manner.
Good luck all, and NO! I'm not a book publisher. just joking guys!
Gambit62Administrator
To add to what B12Turbo has said:
I was told my B12 was low in hospital in Dec2012 after a fall that left me with a badly fractured ankle.
Nobody bothered to really talk to me about what B12 deficiency is and I've had to pick stuff up for myself.
Haven't read 'Could it be B12' but have read a couple of books published by the PAS.
I had struggled with tiredness for a couple of years, and periods of brain fog - have brittle nails, went grey early (family traits on my fathers side so didn't think anything particularly about them) - my bowel movements have always varied a bit from constipation to diarrhea as I went through my monthly cycle so just assumed it was age as things got worse and I started having problems with sudden needs to go whilst I was running - put that down to age. I was getting really tired and just tired all the time - difficultly concentrating - forgetting names - which I put down to depression and stress (even though tiredness was worse in the evening). I was also having problems with heart burn that I think might be related but again, put that down to stress. The symptoms creep up on you over time and there is a tendency even in ourselves to ascribe them to other factors and because they are so diverse you don't think to put things together
I was diagnosed with IBS in mid 1995 & in early 1996 I was diagnosed with CFS/ME
A few years ago I was diagnosed with Fibromyalgia
My main symptoms are diarrhea/mucus & pain, muscle/joint/bone pain, tired all the time, when I am 'bad' I misjudge doorways & furniture and bump into them, have problems remembering words & get lost in sentences, I get visual disturbances, I get headaches, I get disproportionate exercise fatigue,I sleep a lot. I can't always hold a pen or watch the telly, I can't always use scissors or a tin opener
I am certainly taking it seriously & will see what I can do
I think on reflection I will talk to my GP & if nothing happens I will see if I can try & self medicate; which isn't ideal but possibly necessary
Suggest that you take a look at the following and may be take them along with you to the GP
pernicious-anaemia-society....
pernicious-anaemia-society....
b12d.org/b12-deficiency-pro...
b12d.org/sites/default/file...
Probably good to write everything down that you want to say - partly to make sure you don't leave anything else but also it might help to speed things up.
They are massively useful - Thank you
I think I'm only about 45-50 (some of them seem to be doubles) so that's not too bad I guess
Also - I found on my on-line diary (aka Mumsnet) that in 2011 my B12 was 'fairly' low; so I might ask at the surgery about that
No those levels are not normal, and given that you have neuro symptoms you need injections every other day as per the BNF section 9.1.2. You are also folate deficient so should be prescribed 5mg folic acid alongside the B12 injections. I would wager you also have low iron and vit D, and maybe some other things such as magnesium and zinc.
Have you seen this website?:
Also a Facebook Group here:
facebook.com/groups/1749289...
Erainy• in reply to
hampster1,
I have a question. I've been on injection for nearly a year now but still getting neuro symptoms when B12 runs out from my system. Do you think I should be self-injecting every other day? I am on twice a week at the moment.
• in reply toErainy
If your symptoms are returning before the next injection then I would say yes, you should inject as often as you need to keep symptoms at bay.
Having said that you need to make sure your folate and iron levels are good, because you'll find the injections will work better and last longer that way. I still need the full 5mg of folic acid at least 5x per week, otherwise I crash. It seems to be as important to me as the B12, they work together and need each other. I suspect my ferritin is still a bit low so have just had that retested.
I've been self treating since last November and I've found that as I've felt better, and started doing more exercise and more of the things I did before, I actually need more B12. So initially I did weekly, but recently decided to do roughly twice weekly. I also split the ampoule into 2 500mcg doses and inject subcut over 2 consecutive days, rather than the whole ampoule on one day. So 2 days on, 3 days off, is my current regime.
H x
Erainy• in reply to
I am aware about the importance of folate level. I take 400mcg everyday. I think when I was on 5mg/day, I have grown bigger as folate encourages cell growth. 
B12 (500mcg) over 2 consecutive days may be something I should try but I'd rather have as little injection as possible as I can't stand injection..... It's a miracle that I am able to self-inject really. I loath it everytime but I do it because otherwise I am ill and unable to function.
• in reply toErainy
Just my opinion, but I'm not sure 400mcg folate is enough for twice weekly injections. That's basically the RDA for a healthy person, not really relevant for us folks who are a bit broken! You could try going back up to 5mg for a few weeks to see if it helps, and then reduce slowly to a maintenance dose?
Thanks - one of those pages suggests not printing off stuff from the internet - but realistically how do I convince a GP who believes the 'range' is correct & I don't have any sort of deficiency
It's all very well saying assert your self - but if I could I don't think I would have been poorly for the last 18 years
I have a certain amount of health anxiety due to several misdiagnoses (both mine & my families) and a certain amount of white coat syndrome - this makes my appointments hard for me and sometimes confusing for the practitioner
• in reply toKTMac
I can totally empathise, I cried the last time I saw my GP in sheer frustration and anger at his ignorance and unwillingness to listen. Goodness knows what he wrote in my notes. So now I write letters pointing out the guidelines, and send him research papers, but who knows whether or not he takes any notice.
I also previously went 6 years with no maintenance treatment despite being diagnosed and given the loading dose, and was as clueless as my doctor at that time. I had to have the MMA test to prove I was still deficient and get my treatment reinstated.
It's sad but true that you need to educate yourself and your doctor to get the right diagnosis and treatment, and even then you sometimes end up having to sort yourself out (I self treat in between my 3 monthly NHS jab).
So I think when it suggests not printing stuff off the internet, it's more referring to things that are not from verified sources or backed up by research. I've certainly sent my GP various things - the Scottish Petition, the BNF and NICE Guidelines, peer reviewed research papers from PubMed etc.
In the meantime it helps to have the support of other sufferers at various stages in their B12 journey, and for that I would really recommend the main PAS forum and the Facebook Group page above. You can read the PAS forum for free but need to be a member to post anything:
pernicious-anaemia-society....
H x
"I cried the last time I saw my GP in sheer frustration and anger at his ignorance and unwillingness to listen. Goodness knows what he wrote in my notes. ~hampster1"
^ This is so common which many of us have gone through.
KTMac,
Your level 151 is far too low and by all means try to get a proper treatment via GP but if not, possibly go through a private doctor who would diagnose you with a proper treatment. Then, you can always transfer that to your NHS GP. Your GP won't be able to ignore other doctor's diagnosis. I know this is kind of backdoor, cumbersome way to get the treatment but if you delay your injections, your nerves might get damaged to the point of no return so please act urgently.
As a last resort, to self-medicate, we can give you support, where to get all the gears, how to do it etc so don't worry to much about that, just ask!
I think I'm afraid
I'm afraid he won't believe me
I'm afraid he will say it's CFS/FM/IBS
I'm afraid he will say it's depression
I'm afraid he won't see me until the next available appointment (19th May)
I'm afraid even if he knows about B12 - he won't treat me or will treat me but not the way I think I need
So I think I'm afraid
I looked at the spray in Holland & Barrett and it had artificial sweeteners in - & I react badly to these so I didn't buy it, although I did buy some Folic Acid about 800 somethings. I'll look on-line to see what other spray there are.
I can't see me being treated anytime soon and it's like I've been tempted with a possible 'cure' which is almost too good to be true & I'm scared it is
• in reply toKTMac
I know it's tempting, but if you supplement B12 now you will definitely scupper your chances of getting the injections you need, and the diagnosis you need. There are so many other tests you can have - Active B12, MMA, homocysteine, anti-intrinsic factor, anti-parietal cells - as Erainy says, you could seek answers privately if you simply can't face the GP. Or bring someone with you, I think he would be less likely to fob you off that way. Your level is so low that another GP at the practice might be willing to start treatment, have you tried this?
There are some brand new guidelines regarding the diagnosis of B12 and folate deficiency that I believe have now finally been produced by the British Committee for Standards in Haematology (BCSH). They were summarised on the PAS website but I can't find the link, I'll keep looking because I think they will help you.
Gotta go to bed now but I'll post some more info tomorrow.
H x
Thanks - I will sort myself out & go to see the GP
I will also ask if I can have copies of blood tests going back years to see how it goes
Am I OK to take the folic acid the GP tiold me to take or should I hang on with that too?
• in reply toKTMac
If he told you to take the folic acid then why didn't he prescribe it? They should prescribe 5mg for 4 months to correct a folate deficiency, then reduce to a maintenance dose of 5mg 1 to 7 times per week. That information is here:
patient.co.uk/doctor/folate...
If you're going back to the doctor's I would hold off on the folic acid just in case he decides to retest you, but as I say he should give you the higher strength on prescription.
In terms of getting B12 treatment I'm still trying to find out if the new guidelines are actually published yet, they would definitely help you get treatment.
In the meantime you could bring Dr Chandy's treatment protocol to your GP, have a look at it and you will see you need treatment:
b12d.org/sites/default/file...
Dr Chandy is a GP involved in the B12d.org charity, which helps people who are struggling to get diagnoses and treatment. You can email the charity for help, the address is notifications@b12d.net:
It can take a week or 2 to get a response as they are very busy, but they do respond.
H x
• in reply to
This will also help your case - its the BMJ Best Practice for vitamin B12 deficiency referred to by Dr Chandy's protocol:
bestpractice.bmj.com/best-p...
The cut-off for deficiency is 200pg/mL, you are well below this value (assuming your test was in pg/mL rather than pmol/L).
• in reply to
And just reading back through your posts you do have macrocytosis, you said:
"I also have MCV 102 & MCH 33.7 are they relevant?"
Elevated MCV and MCH means you have enlarged red blood cells (macrocytosis) as found in B12 and folate deficiency. You basically have all the symptoms and blood test markers of haematological and neurological deficiency.
And you can test negative for the Anti-Intrinsic Factor Antibody and still have PA, it is an unreliable test. This is from the current NICE guidelines:
cks.nice.org.uk/anaemia-b12...
"Antibodies to intrinsic factor are very specific for pernicious anaemia, but are only present in around half of cases."
Erainy• in reply to
"If he told you to take the folic acid then why didn't he prescribe it? ~hampster1"
Shall I say, this is typical scenario!!
GP don't automatically give you these just because you are on B12 injection!
It took my nudging before my GP prescribed me with 5mg folate tabs.
Luckily I knew these things but if I didn't I wouldn't have been treated fully....well I haven't really even now. *sigh*
Hi KTmac
As always Hampster1 talks a lot of sense and listening to your body is a great way to go, once you have a full diagnosis and a program plan to work on. However, the points about self medicating prior to a full investigation and test results are very important, even if difficult to endure in the meantime. PLEASE DO NOT spoil your chances of an accurate diagnosis, by rushing into trying to cure a problem you don't fully understand. Re your G.P. well join the club!!! Sadly like all medical sciences, B12 is a rather new and developing grey area, on to which we are striving to place a handle and thereby gain a better understanding, everyday we find new problems and work hard to find answers in labs all over the world.
Regarding the point made by Erainy on Dr Harrington's availability. Just to say that Dominic is obviously a very busy man. However, if your G.P. has referred you to Guy's, then his opinion will be sort and he is quite often known to speak directly to his patients if he feels the situation requires his direct intervention. This will normally have to be set up by appointment and a time set for you to ring him, but please only request this if you feel you have a very important point to make. Try E-mailing your thoughts and fears to Denise Oblien and let's see what Dominic feels about your case, then you may be asked to ring him at a certain time, on a certain day, as he is often working away from the hospital. You may also get a response from the lab team with regards to your E-mailed questions, if it is felt that is the best way forward, but you will get answers to your fears I'm sure.
I've put a request in for my blood tests over several years or as far as records can be easily accessed.
I've been working on compiling my symptoms - I'll post when it's coherent
Sorry I meant to add Thankyou to everyone who is helping me - I do appreciate it
Well here it is.....I may add to it over time!
I've been working on compiling my symptoms:
IBS diagnosed Summer 95 diarrhoea, mucus, cramps, very fast transit, some incontinence, some blood (all checked out & fine)
CFS diagnosed Spring 96 - tiredness (4 months off work – crawling to the bathroom) walked with a stick for nearly 12 months, pain in legs, missing doorways & hitting my shoulder (or desks & hitting my thigh), visual disturbances when tired, headaches that can last for weeks, I sleep up to 12 hours a day (in my good phases) & have slept up to 18 hours (initially)
Fibromylgia - pain in joints, bones, muscles (walking up stairs just one flight is hard), hypermobility
Misc symptoms (or ones I'm not sure who they belong to)
•Pins & needles in my feet (less so hands),
•Severe pain in my feet (particularly in waking),
•Night cramps (in my feet & toes)
•Urinary incontinent after my daughter was born (I'm now all TVT'ed up & fine),
•3 miscarriages & an ectopic pregnancy,
•Regular cystitis,
•Back/hip pain,
•Inability to focus on a moving object (like a ball - but my mum says I've always had that),
•I lose my words when I am talking,
•I can look at a word & not know if it's spelt right,
•I get lost in sentences,
•Confusion – just in the moment a complete loss of mental direction,
•I struggle to hold a pen, use a tin opener or a pair of scissors to cut anything more than paper,
•mouth ulcers,
•My mum has pernicious anaemia (but she does drink a lot of alcohol)
I've excluded from my diet (NHS dietician) Dairy, eggs, green veg, raw fruit, more than 2 bananas a week, pulses, onions/garlic, mushrooms, citrus fruit - I tried excluding Gluten but my gastro consultant told me not to
I've excluded from my diet (by trial & error) coconut, almonds & artificial sweeteners
& I can collect my blood test results back to 2010 for £10.15 tomorrow - which is very nice I think!
Going back to 2010, I have only one other B12 & Folate test
The results from October last year were B12 149 & Folate 2.2
I spoke to the GP today (finally) & I am having a weekly injection of B12 for 6 weeks & some folic acid
She is wary of prescribing more as she feels my system is 'fragile' & she is worried about an allergic reaction
Which is more than I have had any other doctor agree to
Not what you're looking for?
You may also like...
B12 level 154 and GP says this is normal!
Does anyone know where i can order B12 injections in the uk. I feel awful my folate is low and GP...
What level is normal after B12 injections
First post after being diagnosed with very low B12 (67). I am in the UK and had the course of six...
Is my B12 level ok
It's 375ng/l (181-910) doc has prescribed me folic acid as its below range, is it ok
Is my Vitamin B12 level low?
Hi I'm new to this community but I've been with the Thyroid UK community since May 2013.
I am...
B12 level
Hi I’ve posted on here the other day to say I had left it 6 weeks in between my B12 jab instead of...
B12 level
Is B12 196 normal?
Doctor says normal?
normal level 
B12 level
