Hi , I had my pernicious anaemia test at the GP and all negative but they didn’t test B12 as said I don’t need that as my full blood count was in normal to high in range aswell . I said that my medichecks Active B12 was 62 so slightly low low but he just said I don’t need a B12 test as the tests don’t indicate that . I only had my B12 tested in first place as I have hypothyroidism.
Should I just start supplementing sublingually every day now ? Thanks
I'd ask agsin as a negative intrinsic factor test does not mean you are not b12 deficient and indeed dies not ruje out PA. Just because your bloods dont show anaemia ( I assume why they won't test b12?)
If you concerned because of symptoms put this in writing to Gp and ask for b12 to be tested which is normally done with folate and include vit D as well.
Before supplementing.
Good to have a baseline for serum b12 on your medical notes too.
The doctor won’t test it he said . Maybe I’ll try a different doctor .
Hi,
"I had my pernicious anaemia test at the GP and all negative but they didn’t test B12 as said I don’t need that as my full blood count was in normal to high in range aswell ."
Have you accessed your own test results?
Best piece of advice I ever got was to always get copies of all my blood test results.
I am aware of forum members who have been told everything is normal/no action/negative on blood tests when there are actually abnormal and borderline results.
I've written some very detailed replies on the forum with lots of B12 info you might find useful eg more about causes of B12 deficiency, B12 books, B12 articles, B12 websites along with a few hints about managing unhelpful GPs.
Will put in links to threads later, struggling with computer issues.
I am not medically trained, just someone who struggled for years with unrecognised B12 deficiency.
Hi, yes I got my results emailed to me . My full blood count ones are looking good in the range halfway to above .
The GP was probably looking for signs of macrocytosis on FBC (Full Blood Count).This is when red blood cells are enlarged.
Both B12 deficiency and Folate deficiency can lead to macrocytosis.
Have you got a recent folate result?
A person with macrocytosis would probably have an above range MCV result on FBC.
A person with B12 deficiency (and/or folate defic) may not show signs of macrocytosis if they also have iron deficiency at the same time.
Iron deficiency can lead to microcytosis when the red blood cells are smaller than normal.
So microcytosis from iron deficiency can mask macrocytosis from B12 (and/or folate) deficiency.
Have you got a recent ferritin or other iron results?
About half of people with B12 deficiency do not show signs of macrocytosis but your GP may not be aware of this. See BSH Cobalamin and Folate Guidelines and NICE CKS links.
If GP won't order a serum B12 test, you can get these tests privately in UK.
Just search online for "private blood tests UK"
GPs are unlikely to accept private blood test results but a significant result in a private blood result may be enough to nudge them into doing the same test.
Superdrug online doctor service have an extended B12 test that tests Active B12, folate and intrinsic factor antibodies (IFAb)
Martyn Hooper, chair of PAS tested negative more than once on IFAb test before finally testing positive.
Hi , July 21 test from medichecks says
Active b12 62 range is 25.1-165
Ferritin 153 range 13-150
Folate 18.2 range >2.9
Vit d 110 range 50-200
Your Active B12 result is within range.
This link suggests that people with an Active B12 result between 25 and 70 pmol/L should be referred for a MMA test.
viapath.co.uk/our-tests/act...
Your ferritin appears to be just above range.
Is the range you have quoted correct?
Are you taking iron supplements or eating lots of iron rich food?
It is possible to develop iron overload in body tissues.
To be honest, I can't see anything obvious in these results but I am not medically trained.
Iron Studies
labtestsonline.org.uk/tests...
Maybe if you have time you could put your Full Blood Count results with reference ranges on this thread.
Link about blood tests and B12 deficiency
Full blood count
Total white cells 6.3 range 4-10
Red blood cells 4.83 range 3.80-4.80
Haemoglobin estimate 144 range 120-150
MCH 29.8 range 27-32
MCHC 353 range 315 -345
I was taking iron as my ferritin level was low a year ago and needed to increase to help the thyroid issues .
Hi,
I can see that your red blood cell count is just above range and your MCHC is above range.
Full Blood Count
labtestsonline.org.uk/tests...
Are there other Full Blood Count results you've not posted.
I would expect to see results for
Haematocrit
MCV (Mean Corpuscular Volume)
Platelets
MPV (Mean Platelet Volume)
Individual results for different types of white blood cells
Neutrophils
Lymphocytes
Monocytes
Eosinophils
RDW (Red Blood Cell distribution width)
Have you ever had a blood film (also known as blood smear)?patient.info/doctor/periphe...
Have you considered getting a serum B12 blood test privately?
I think there's a good chance a GP would order their own serum b12 test if a private serum B12 test showed below or above range results.
If you are supplementing B12 then this may affect results of B12 tests.
Can’t find a private serumB12 only active B12
. I’m trying a different doctor at the same surgery but can’t get appointment for 2.5 weeks with her though so she’s to wait and I won’t know if she’ll agree to do it on me .
The trouble is the b12 test was medichecks so don’t think my GP would refer me for MMA test from medichecks test
If you still think that B12 deficiency is a possibility, have you considered getting MMA and Homocysteine tests done privately?
I’ve contacted Viapath to ask if they can refer me for MMA based on my medichecks B12 result and I’m waiting to hear back .
Viapath have said that you can only do a private B12 and MMA test with them now .
Waiting to hear how much it is . My question is though if I get this tested privately what would the GP do with it . Would they agree to treat if needed ?
If private tests show something significant, more likely that they will order the same tests or refer you to someone who can but no guarantee. I suspect they are unlikely to treat you just on the basis of private blood test results but I could be wrong.
There are other providers of private blood tests in UK, search online for "Private blood tests UK"
May also be worth seeing a private GP but more expense....
I found a chain of private hospitals in UK who offered a serum B12 test.
Hi @Sleepybunny I have found out from Viapath that for £60 you can test the total B12 the active B12 and MMA .
I’ve had my folate and vit D tested and it was good aswell . Just the Active B12 was low at 62
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
b12deficiency.info/b12-writ...
Thankyou
I’m not sure I’ve got the confidence to go against what the doctor has said though but maybe I’ll try with a different doctor at the same surgery ?
"I’m not sure I’ve got the confidence to go against what the doctor has said "
More about writing letters to GP
Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.
Best to keep letters as brief, to the point and polite as possible. It's harder to ignore a letter in my opinion.
When a letter is sent to GP, worth including a request that GP practice sends written confirmation to letter writer that they have received letter.
I included a request in letters that a copy of letter was filed with medical notes.
My understanding is that in UK, letters to GPs are supposed to be filed with medical notes so are therefore a record that an issue has been raised.
Useful to have a paper trail in case there is a need for a formal complaint over treatment in future.
Letters could contain relevant test results, date of diagnosis, brief family and personal medical history, extracts from UK B12 documents, requests for referrals to relevant specialists eg neurologists, haematologists, gastro enterologists.
Keep copies of any letters sent or received.
See letter writing link in one of my other replies.
Point 1 in letter writing link is about being under treated for B12 deficiency with neuro symptoms present.
Point 5 in letter writing link is about being symptomatic with an in range serum B12 result.
Point 5 mentions the possibility of Functional B12 deficiency. This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so patient develops the symptoms of B12 deficiency.
Is your GP aware of the possibility of Functional B12 deficiency?
I had typical symptoms of B12 deficiency with many neurological problem but was refused treatment apart from one set of loading injections when I had a below range b12 result.
Most of my B12 results were between 300 - 500 ng/L
I deteriorated to the point of dementia symptoms and symptoms affecting my spine.
Is your GP aware that untreated or under treated B12 deficiency can lead to the spinal cord being permanently damaged?
Look in my links to other threads for info about SACD, sub acute combined degeneration of the spinal cord.
UK guidelines suggest that patients who are symptomatic for B12 deficiency should be treated to avoid neurological damage even if their serum B12 is within range.
Summary of BSH Cobalamin and Folate Guidelines
pernicious-anaemia-society....
Cobalamin is the scientific name for B12.
This is a series of recommendations for health professionals in UK on treatment/diagnosis of B12 deficiency.
If you have symptoms of B12 deficiency, maybe you could include the 5th recommendation from BSH summary in any letter you write to your GP which is
"in the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment"
I take the above quote to mean that a patient with B12 deficiency symptoms should be treated even if their serum B12 result is normal range to prevent neurological damage.
I have left links to symptoms lists in my replies on other threads... sorry still having issues with posting more than one link in a reply.
In the end when faced with dementia symptoms and possibility of permanent spinal damage and absolute refusal from my then GPs to treat me even after my polite efforts to educate them, I was forced to treat myself.
I had difficult experiences with medical profession as they preferred to label me with diagnoses of depression, psychosomatic symptoms, hypochondria, ME/CFS/Fibromyalgia rather than treat me for obvious B12 deficiency symptoms affecting most of my body systems.
Being assertive is difficult when your head feels it is stuffed with cotton wool and you struggle to string a few words together in a sentence but I fought as hard as I could.
Weigh up the risks of possibly upsetting your GPs against the consequences of not getting treatment if you have symptoms of B12 deficiency.
How do you treat yours if your doctor refused to give injections?
I did eventually get some treatment from NHS but have at times sourced B12 ampoules from European pharmacies as NHS treatment is not enough for me.
I find this a difficult subject to talk about due to the difficult experiences I had so suggest you search forum posts for more info.
My personal opinion is that self treatment is an absolute last resort.
It's rare but there is a risk of a severe allergic reaction to B12 so I feel it is best for a health professional to do injections.
I did try B12 patches, no use at all to me and high strength B12 sub linguals lozenges which had a small effect.
For me nothing is as effective as B12 injections but some forum members manage on high strength oral B12 tablets.
Oh it sounds a nightmare what you’ve been through , that’s also why I’m wondering if I should just try high strength sublingually then if it’s really hard to get treatment anyway and see if I feel any better doing that
@Sleepybunny . If I try taking sublingually how long do I need to stay off it before I test active b12 level again ? Currently it’s 62 range 26.1-165 .
I can do this by my self rather than waiting for the GP to agree to
1.do a serum b12 test and
2. Possibly not even agree to giving me treatment with injections
Adding to what Sleepybunny said "It's rare but there is a risk of a severe allergic reaction to B12 so I feel it is best for a health professional to do injections."
The risk of a severe allergic reaction (although its rare) is mainly an issue with the 1st b12 injection so it best to do that under medical supervision. Which I suspect is what most people who self inject on this forum have done either due to inadequate (arbitrary decided) 3 month injections on NHS or saw a private nurse/ doctor (which is what I did). Although I recall 1 person on this forum doing their 1st b12 injection in a parked car with a friend outside A&E just in case.
PAS (Pernicious Anaemia Society)Based in Wales, UK.
pernicious-anaemia-society....
There is a helpline number that PAS members can ring.
Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.
Apologies for doing it like this...can't get links to work unless I do one at a time.
NICE CKS B12 deficiency and folate deficiency
Each CCG/Health Board in UK will have its own local guidelines on treatment/diagnosis of B12 deficiency. I suggest you track down the local guidelines for your area and compare them with BSH, BNF and NICE CKS links.
Some of these local guidelines have been posted on the forum. Or try an internet search or submit a FOI request to your CCG/Health Board asking for a copy of B12 deficiency guidelines used in that area of UK.
Another detailed reply in thread link below...
So if my full blood count is in range can this still mean your B12 deficit?
Also I don’t have neurological symptoms apart from tinnitus but I do have exhaustion
NICE CKS symptoms list for B12 deficiency (and folate deficiency)
sb
Symptoms of Peripheral Neuropathy (damage to peripheral nerves)
nhs.uk/conditions/periphera...
Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.
Hi ya i would say get the serum b12 tests, folate and ferritin done so you can know what is happening. I was really really ill and got progressively more so over 18 months. The doctors were sure i was making it all up as my blood count was ok. They said you are not anaemic, my ferritin was fine too so this was not masking anything. When another consultant tested my serum b12, it came back as 113 which is very low.
Because of the way they behaved i now have no trust in the medical profession whatsoever and am left damaged due to their negligence and would have been more damaged from my orher conditions if i hadnt sorted those out alone by asking other consultants to help me when it was not their job. My GPs had stopped treating me at all . I had to go through 3 years of my life being completely vwrecked and i would not wish that on anyone. I am now better, going out, seeing friends, it is great.
All i am saying is as a person with now 6 rare illnesses GPs dont always know their stuff and the only one who will look after you is you unfortunately so i would get tested and then you can see where you are and resolve any problems from there
Sorry you’ve had such a terrible time I feel like my doctor tho k I’m a hypochondriac! It’s exhausting just trying to sort it out and fight against the doctors let at least feeling rubbish while doing it
You need to access a serum b12 test, yours is an active b12 test and it leaves me wondering if you are confusing the two results.
Sixty-two is a very low and serious number for a serum b12 test, but is completely in range - as your own notes show - for active b12.
My apologies if I have missed pertinent information and a serum b12 test result.
Hope you get everything figured out soon. Obviously you are struggling with something. All the best to you.
Sorry @Litamon
thanks for pointing it out . Yes 62 is for active b12 . So is that one completely in range then ?
Yes as you yourself listed the range and it is not even low end of that range.
I don't mean for that to sound aggressive at all. I do know how frustrating it can be to try to figure things out.
It became confusing on the thread because often doctors can see a low serum b12 test and not see any markers of anemia/blood issues- everything in the normal range in all other tests, and draw erroneous conclusions that everything is okay. When some of those markers are actually a extremely critical stage of b12 deficiency ie. when it has been left too long and possible irreversible damage has been done. Plus folate can mask changes as well.
None of that applies to you because we do not know your serum number.
I personally do not know enough about an active b12 test to say anything more to you, besides it is completely in the normal range.
Just read though that Viapath suggests that an active B12 test below 70 is deficient.
Okay, like I said I know nothing about the test besides loosely knowing the ranges and then you listing it as well, in normal (from doctor)
Hope you get some helpful information here.
Hi,
You mentioned a relative with PA on another thread.
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
Above link mentions that PA can run in families.
If there is a relative with PA does your GP know this?
Worth mentioning this in any letter or conversation with GP.
I suggest you consider joining PAS and contacting their helpline if you have the symptoms of B12 deficiency. They can offer support and pass on useful info.
PAS website has lots of useful leaflets/articles that some on forum pass on to their GPs.
Do you mind me asking what your symptoms are besides the tinnitus and exhaustion?
Both those symptoms can be found on lists of B12 deficiency symptoms
Sore tongue /geographic tongue , back ache , exhaustion , anxiety , depression blurred eyesight .
How long should I come off sublingual b12 before doing another active B12 test ? I think I’ll just try that first . I feel so confused and don’t know what to do now . Litatamon has said my B12 is in range .
Oh mouth ulcers often aswell
Hi again,
Sorry for so many replies...still having trouble with links.
Glossitis, sore, inflamed tongue is a symptoms that is associated with B12 deficiency (and also folate deficiency) so are mouth ulcers.
Glossitis is mentioned at the top of the diagnostic flowchart below as a potential sign of B12 deficiency.
stichtingb12tekort.nl/engli...
Have you talked to your dentist about your mouth symptoms?
Sometimes the route to diagnosis of B12 deficiency is via other health professionals.
If your dentist thinks you have signs of B12 deficiency in your mouth, perhaps they would contact your GP?
Thanks for all your help I’m very grateful for your time given and making me aware . I’ll try asking the dentist that.
A link to a recent thread I started about signs of B12 deficiency in the mouth
healthunlocked.com/pasoc/po...
You also mentioned geographic tongue...I have fissured tongue which is a related condition.
I was told it was a benign condition and just something some people developed...I am convinced that it developed as a consequence of B12 deficiency . I came across articles that linked damage to papillae (tongue cells) to B12 deficiency. The splits in my tongue have partially healed after years of B12 treatment.
Search forum posts for "geographic tongue".
."blurred eyesight"
Have you had an eye test recently? You could mention your concerns about possible B12 deficiency and PA in the family to the optometrist who may then have a look at your optic nerve.
B12 deficiency can lead to optic neuropathy.
Link about optic neuropathy
sciencedirect.com/science/a...
I’ll try that . I need an eye test soon anyway
PAS Symptoms checklist
pernicious-anaemia-society....
You mentioned that the only neuro symptom you were aware of was tinnitus.
The list below is of various neurological symptoms that can be associated with B12 deficiency (some can be also associated with folate deficiency).
tingling (could be anywhere..often in fingers, toes, hands, feet)
pins and needles
insect crawling sensation (formication)
electric shock sensation
water dripping sensation
numbness
unusual gait (strange way of walking)
brain fog
confusion
memory problems
strange behaviour eg putting car keys in the fridge, boiling kettle without any water in it
difficulty getting right words out (nominal aphasia)
starting a sentence, losing track and not being able to finish it (I called it mental blanks)
losing ability to do mental arithmetic
loss of bladder and bowel control
migraine
vertigo
balance problems
clumsiness
bumping into things
dropping things
proprioception problems
Proprioception is awareness of the body in space. If you have balance issues when it's dark, when your eyes are closed or when your view of your surroundings is blocked then worth investigating proprioception. I used to misjudge where things were on shelves which meant broken crockery.
muscle twitching
muscle fasciculations (ripple like movements of muscles, like something is wriggling under the skin)
eyelid flickering
restless legs syndrome (RLS) can also affect arms, toes, fingers, head
periodic limb movements
PLM often occur at night but can also happen in day time. I describe them as limb jerks.
dystonia type symptoms
tremors
tinnitus
I recommend listing any symptoms affecting spinal area eg backache, any strange sensations in spinal cord etc
Severe B12 deficiency can increase the chances of permanent damage to the spinal cord.
SACD, sub acute combined degeneration of the spinal cord, has been diagnosed in people whose serum B12 levels were normal range.
See link below.
pubmed.ncbi.nlm.nih.gov/191...
You may find you have more neuro symptoms than you originally thought after looking through symptoms lists.
The ones I listed are some of the ones I suffered from but there are many more that can be associated with B12 deficiency ( and with folate deficiency). See other symptoms lists I posted in thread.
I suspect a GP is more likely to take notice of neurological symptoms hence probably worth listing every neuro symptom you have.
If you do find you have more neuro symptoms, worth requesting a referral to a neurologist.
If you see one, I suggest mentioning family history of PA but be warned that ignorance about B12 deficiency can be found in some specialist doctors as well as some GPs.
I think your best bet is to talk to PAS (Pernicious Anaemia Society) before you next approach your GP.
They may be able to suggest info you could pass on to GP.
The person who runs B12 Deficiency Info website has helped some forum members.
Advice on Tests Please
Doctor says don't need jabs as B12 now OK!!!
B12 or Iron? advice needed please 
some advice needed please 
Serum B12 level 160ng/L with symptoms, Doc says just take a multi-vit for now.
