Hello everyone, I’ve been reading lots of posts here and found much of help, many thanks. I have recently had blood tests to discover why I had a set of symptoms including anxiety, fatigue and raised heart rate on mild exertion, dizziness, tinnitus, palpitations and tingly feet and hands. I thought it was all psychological but then read about B12 deficiencies. My question is- blood test show plasma B12 158, serum folate 5.9, Hb 124 and serum ferritin 108. The intrinsic factor test was negative. Is it possible to have normal Hb but be deficient in B12? I understand the intrinsic factor test isn’t a good indicator of PA. I have been orally supplementing with Floradix for some weeks but noticed the tingly feelings have crept up my legs, almost like a pair of shin pads in location. I haven’t discussed with GP yet as appts are like hen’s teeth. Hoping to get a telephone appt ASAP. Sorry long post, many thanks for any thoughts.
New and confused: Hello everyone, I’ve... - Pernicious Anaemi...
New and confused
Although one of the reasons for B12 deficiency is the autoimmune illness called pernicious anaemia this is a different type of anaemia from iron deficiency anaemia (in fact some people with PA don’t even have anaemia even though they may have a whole host of other PA symptoms).
So your iron levels have nothing to do with B12 deficiency. So yes you could have normal Hb and be B12 deficient.
Ok thank you, I feel more confident asking the GP for treatment knowing one can exist without the other!
Hi Cardigan167
Would you add the ranges for your blood results, as different areas can have differring ranges (due to many factors) so that would be a great help to see what's happening.
On the face of it, your Serum B12 would seem low, if not towards the bottom of any range. I'm not sure of the Folate ranges, off hand, and it's too late (early am) to be looking for them 
Sorry
I understand doctors seem to look for signs of changes in the red blood cells, resulting in less than optimum oxygen carrying capacity but it seems this happens in later stages of Vit B12 def/PA (The difference between these is the causal factor, the effects and treatment are the same)
If you checked out the NICE guidelines, you'd see that 'if there is disparity' between symptoms and blood results, you should be treated anyway. Unfortunately, the doctors don't seem to have noticed this bit.
If you could check out previous posts, particularly by Sleepybunny (lots of very useful links), Foggyme , Gambit62 and clivealive you'll find some very sound advice
Wishing you well
Hi JMN2017, thank you for replying, yes I should have added the ranges. B12- 158 (200-900), folate 5.9 (2-17), Hb 124 (115-165), ferritin 108 (15-250).
I have been struggling to eat over the last couple of days, no appetite and diarrhoea, and have lost 8lbs since Feb, mainly due to a decreasing appetite. I had a bout of sinusitis and an ear infection in Feb and although that has gone I’ve not felt ‘well’ since. It does feel like something has gone awry.
I’ll have a read of those posts, many thanks again.
Hi,
B12- 158 (200-900)
Your B12 level is well below range. Are they giving you any treatment ? You have mentioned neuro type symptoms. Untreated or under treated B12 deficiency can lead to spinal problems.
Link about "What to do next" if B12 deficiency suspected
b12deficiency.info/what-to-...
It might be worth joining and talking to PAS (link below). It is possible to have Antibody Negative PA (see flowchart link) which your GP may not be aware of.
In UK, emphasis in b12 documents is on treating people who are symptomatic for B12 deficiency even if B12 level is normal range. I had many symptoms with b12 levels between 300 - 500ng/L. You mention symptoms that can be found on lists below.
B12 Deficiency Symptoms
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/... (may need to be B12d.org member to use this)
I'm assuming you're in UK. Some info below may not apply if you're elsewhere.
Risk Factors for PA and B12 Deficiency
There are many causes of b12 deficiency besides PA.
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
Has diet been excluded as a possible cause? If you eat plenty of B12 rich food eg meat, fish, shellfish, dairy, eggs , foods fortified with b12 then diet as a cause is less likely and it becomes more likely that there is an absorption problem.
Have you been tested for Coeliac disease?
NICE guidelines on Coelaic disease suggest testing anyone with unexplained B12 , folate or iron deficiencies.
In UK, two first line tests are recommended.
1) tTG IgA
2) Total IgA
My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coelaic disease.
NICE guidelines Coeliac Disease (2015 version)
nice.org.uk/guidance/ng20/c...
Coeliac blood tests
coeliac.org.uk/coeliac-dise...
Have you been tested for H Pylori infection?
patient.info/health/dyspeps...
Parasite infection eg fish tapeworm?
One sign of some parasite infections is a raised level of eosinophils on full blood count (FBC) tests.
Any surgery involving nitrous oxide as part of anaesthesia?
Nitrous Oxide
gov.uk/drug-safety-update/n...
UK B12 documents
If in UK, I suggest reading all of these. Some GPs may not be aware of all of the documents.
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Flowchart from BSH Cobalamin and Folate Guidelines
stichtingb12tekort.nl/weten...
BMJ B12 article
This article emphasises need to treat people who are symptomatic even if serum b12 is normal range, in order to prevent neuro damage.
BNF
bnf.nice.org.uk/drug/hydrox...
NICE CKS
cks.nice.org.uk/anaemia-b12...
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769717 answerphone
PAS support groups in UK
pernicious-anaemia-society....
B12 Deficiency Info website
UK B12 Blogs
Martyn Hooper's blog about PA
B12 Deficiency Info blog
Blood tests
b12deficiency.info/b12-test...
Macrocytosis
patient.info/doctor/macrocy...
Full Blood Count and Blood Film
labtestsonline.org.uk/tests...
patient.info/doctor/periphe...
Folate Deficiency
patient.info/doctor/folate-...
Best piece of advice I ever got was to always get copies of all my blood test results. Some forum members get a complete set of medical records.
Access to Medical Records (England)
nhs.uk/NHSEngland/thenhs/re...
nhs.uk/chq/pages/1309.aspx?...
Neurological Consequences of B12 Deficiency
I hope your GP is aware of the potential neuro consequences of under treatment of b12 deficiency.
PAS news item
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord, available to PAS members only.
pernicious-anaemia-society....
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
Help for GPs
I gave mine a copy of PAS Symptoms Checklist, a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency " and a copy of BSH Cobalamin and Folate Guidelines.
PAS website has a section for health professionals. They can join PAS for free as associate members.
pernicious-anaemia-society....
PAS library section has a leaflet aimed at medics "An Update for Medical Professionals: Diagnosis and Treatment ", only available to PAS members. Perhaps your GP would find a copy helpful.
pernicious-anaemia-society....
If your GP is really enlightened they may decide to speak directly to PAS.
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
Lots of useful B12 info in this link below.
b12deficiency.info/b12-writ...
CAB NHS Complaints
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions on medical diagnoses and medical treatment.
"Hoping to get a telephone appt ASAP"
Might be worth following up tel appt with a letter to GP outlining concerns eg symptoms, blood test results, extracts from UK B12 documents, relevant family medical history etc. My understanding is that in UK, letters to GP are filed with medical notes so are a record of issues raised and are harder to ignore, in my personal opinion, that things said during an appt.
I am not medically trained.
Hi, yes I am in the UK. I’ve been reading BSH guidelines linked on one of your posts, I’ll mention this when I get to see/talk to GP if she is unsure about a diagnosis or treatment. I was interested in the info about blood cell shapes (sorry can’t think of proper word) being a later sign of PA, or not present in 25% of patients. My blood film microscopy didn’t show any problems.
I’ll keep reading!
"interested in the info about blood cell shapes"
See link about Macrocytosis in above post.
Thanks Sleepybunny for your very informative reply. I haven’t started any treatment as the blood tests were first port of call for my GP. My practice has medical records online so I can access all my results. I have a t/c with GP scheduled for this pm, hope she’s well informed.
I’ve joined PAS as suggested, hope to get to the root of all this. I have a good diet, altho was mainly veggie for many years I ate fish and often supplemented due to low iron levels (around 110), for last 18 months I’ve eaten meat as well.
Many thanks, I need to educate myself now 🙂
Hi again,
"My practice has medical records online so I can access all my results"
My understanding is that on-line access is to a summary of test results/records so may not contain all info a patient wants to access. Copies of medical records costs £50 maximum in UK. Set of blood test results, maximum cost £10.
If cost is an issue then an appt to view records is free, may need to make appt with practice manager. May need to specify if you want to see paper files.
"I haven’t started any treatment"
I'm rather shocked that you have not been offered any treatment especially as some of your symptoms appear to be neurological in nature eg tinnitus, tingling. See BMJ, BSH, NICE CKS B12, BNF links above. Time is of the essence to prevent risk of permanent neuro damage.
Hope your GP is aware of the potential risk of SACD.
Blog post that mentions SACD.
martynhooper.com/2010/09/21...
Have you asked them if they are aware of Antibody Negative PA (See BSH link) and if they have tested for Coeliac disease?
I would strongly suggest you look at UK recommended b12 treatment in BNF and BSH links before tel appt.
Does GP have a list of all your neuro symptoms (See Symptoms lists in post above)? I made sure my GPs had a list of all mine which included tingling, pins and needles , unusual scalp sensations, migraine, periodic limb movements, vertigo, balance issues in dark (proprioception problems?), restless legs etc etc
I'd suggest making them aware of any symptoms in spinal area...I had pins and needles in spine.
UK GPs will have a copy of BNF (Britsh National Formulary) book to hand. If they look at chapter 9 Section 1.2 they can see the recommended treatment pattern for B12 deficiency. BNF concentrates on PA and Macrocytic anaemias. BSH Cobalamin guidelines are clearer that Treatment applies whether person has anaemia/macrocytosis or not.
1) For B12 deficiency without neuro symptoms....
recommended UK treatment is 6 loading B12 jabs followed by a jab every 3 months
2) For B12 deficiency WITH neuro symptoms....
recommended UK treatment is a loading B12 jab every other day for as long as symptoms continue to get better (could mean loading jabs for weeks even months) followed by a jab every 2 months.
Some UK people on forum get put on first pattern of treatment even if they have neuro symptoms when actually they should be on second pattern. Correct treatment is vital or further deterioration may occur.
NICE CKS link in post above mentions that doctors should contact a haematologist for people with b12 deficiency with neuro symptoms. Has your GP written to a haematologist or referred you to one?
As you appear to have neuro symptoms, have you been referred to a neurologist?
If Coeliac disease is a possibility, have you been referred to a gastro-enterologist?
It's a patient's right to request referrals but GP does not have to agree.
As with GPs, some specialist doctors ' understanding of b12 deficiency is not as well developed as it could be so be well prepared for any specialist appts.
I'd suggest talking to PAS after appt. Think PAS office is closed on Mondays. Best to phone.
pernicious-anaemia-society....
Good luck.
Many thanks for this additional information and support. The emphasis has been on me to to make a follow up and I even had to get past the receptionists this morning who sd my test results say no action needed. I pointed out the continuation of the statement which reads ‘if neurological symptoms are present start IM B12’ So I am hopeful the GP will be aware of guidelines, but it’s great to have so much good, evidence based info as backing. I will look at the guidelines and the negative antibodies info before she rings. Thanks again
Wow!!! Sleepybunny Your 'info post' gets longer and longer 
Great that you can post all this information with the links.
Thanks so much for all your help and support on this forum
Thanks JMN2017 ,
All I wanted once I'd worked out that b12 deficiency was the most likely cause of my problems, was the info needed to fight for treatment. I found the info but still had to resort to self treatment for a long time.
Are you saying you are now being treated by NHS???
Yes, my GP has admitted I appear to be much better in so many respects but ... he can't prescribe it - I apparently am NOT B12 deficient - coz my lab reports are all normal !!! One day he'll answer my question re what he looks for to make such a diagnosis
Anyway, so much appreciation for all you do here
Just a little update, the GP has agreed to prescribe the B12 injections after asking me if I’d like to replace it? Yes please I said! She pointed out the negative for antibodies but I felt able to say that wasn’t a good indicator and my diet is varied and also have been supplementing for sometime so I’m sure it’s not dietary related, and def not drug/alcohol/surgery related. I also highlighted the neuropathy in feet, legs and hands. I got the impression to her it wasn’t a big deal and if I thought it might help, try it. There does seem to be a lack of education at primary care level. Ok, thank you so much for your help JMN2017 and Sleepybunny.
Fantastic result Cardigan167
Well done. You obviously got your point across very well.
Yes, you're so right. Medical staff aren't taught much about the importance of vitamins and don't seem to want to find out more about it. I think that's so sad and, in fact, neglectful. I appreciate they are busy and under pressure but, in this instance, are doing patients a dis-service. They'd sooner prescribe antidepressants, which cost so much more - because the Reps convince them the 'newer' meds are so good ...
I just wish they would be prepared to be re-educated
Glad this seems to be working out for you with your GP. I am curious, though, about your earlier statement of how you felt unwell since your bout of sinusitis. Can I ask you which antibiotic you were prescribed? I had a major relapse this past winter (after 10 years of stability with PA) just after a course of antibiotics. Some antibiotics can cause peripheral neuropathy in people who have underlying medical conditions, such as low B12. It’s good to avoid those antibiotics.
Hi, I was prescribed amoxicillin 500mg 3 times a day for 7 days. Is that one of the ones to avoid?
No, I think amox is fine.
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