Hello all. I have been feeling incredibly tired for months, maybe longer, and have been attributing it to some extreme stress at work over the last six months and previously losing my Dad who died a year ago now. I’ve also had dizzy spells, pins and needles in hands, general muscular aches and periods of feeling extremely low sometimes frighteningly low. I’ve had blood tests and just had a second test with a result of 138 but it is not yet clear if I will be given treatment. I had a similar result earlier but was asked to wait 2 months and retest. The surgery receptionist said my result was normal and I should come and wait on a drop in clinic (around 3 hour wait) or make an appointment for a couple of week’s time if I wasn’t happy. There is no option for a conversation with a GP otherwise. When I suggested I might make a complaint she laughed and said ‘you do that I’ll have a complaint form ready for you to pick up when you come in’. This has and is causing me distress and anxiety and being mocked does not help. I’m not sure what the next step will be now or even whether what is happening is all due to B12. I’ve read about problems in the Cardiff area (where I am from) because of very low reference ranges. I really hope I can get some treatment but I never get more than 5 minutes with a GP and am not confident about how this will go. I’m no shrinking violet and a competent professional in my day job but somehow become much more inarticulate when dealing with this. Suggestions welcome.
New (possible) diagnosis: Hello all. I... - Pernicious Anaemi...
New (possible) diagnosis
Do you have the range for your latest blood test? It’s usually shown in brackets after the actual result.
Was just told result over phone so no more details yet
You are entitled to your blood test results so I would go back to the receptionist and ask for a print out. Then you will know what you’re dealing with before your dr appointment.
If your B12 is below range you should be treated as per guidelines.
Thanks. Yes I will do that
Hi. Just had some more details. GP surgery say B12 is 134 (130-900) and Folate is 4.4 (3.0). GP says results are normal so no treatment needed but has not discussed with me directly. Not quite sure why result changed from 138 I was told yesterday except they may have been looking at the earlier test.
Hi,
"B12 is 134 (130-900) and Folate is 4.4 (3.0"
"GP says results are normal so no treatment needed "
The BMJ and BSH Cobalamin links in my longer post emphasise that in UK, people who are symptomatic for B12 deficiency should be treated even if B12 blood level is within range, in order to prevent neurological damage. I suspect GP is unaware of these documents and may be unaware of the potential neurological consequences of untreated or under treated B12 deficiency.
Neurological Consequences 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.... See Page 2
Letters to GPs about Under treatment of B12 defic with neuro symptoms
b12deficiency.info/b12-writ...
Blog post from Martyn Hooper's blog, mentions SACD
martynhooper.com/2010/09/21...
You describe several symptoms found on lists below. I gave my GPs a copy of PAS list with all my symptoms ticked plus 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.
B12 Deficiency Symptoms
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/... (may need to be B12d.org member)
You mention dizziness and pins and needles which would usually be considered as neurological symptoms. In UK, people with B12 deficiency with neuro symptoms are supposed to get more intensive treatment. See NICE CKS, BNF and BSH Cobalamin links in post below for more info.
UK B12 treatment for B12 defic. without neuro symptoms...
6 B12 loading jabs followed by a jab every 3 months
UK B12 treatment for B12 defic. With neuro symptoms...
A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.
NICE CKS link recommends GPs seek advice from a haematologist for patients with b12 defic. with neuro symptoms. Perhaps your GP might consider contacting a haematologist?
If you have neuro symptoms, have you been referred to a neurologist?
Be well-prepared for any specialist appts as lack of understanding of B12 defic. can occur in specialists as well as GPs.
PAS leaflets
There is a useful article " An Update for Medical Professionals: Diagnosis and Treatment " in PAS library section. You would need to be a PAS member to access it. Some people have passed this on to their GPs.
Help for GPs
There is a section on PAS website for health professionals. They can join PAS for free as associate members.
pernicious-anaemia-society....
UK B12 blogs
May be stories on these that are relevant to you.
Martyn Hooper's blog about PA
B12 Deficiency Info blog
Blood test results
You mention b12 and folate results. Do you have results for ferritin (or other iron results) and full blood count (FBC)? There can be useful clues on FBC.
Link about What to do next if B12 defic. suspected
b12deficiency.info/what-to-...
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-...
I am not medically trained.
Good luck.
You poor soul! I so sympathise having had similar experiences. I too have always been fine in professional situations but struggled when it's me.
With enough treatment you will find it easier and cope with the stress better.
If you can't get the treatment you need it would be possible to have a jab privately or where you can access help in the very rare chance you had a bad reaction and then self inject to get your life back and put yourself back in control of your destiny.
See Sleepybunny's replies for excellent advice on dealing with Drs.
Hi,
I'd suggest it might be worth joining and talking to PAS.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769717 answerphone so messages can be left. May take a while to get reply during holiday periods.
PAS support groups in UK
pernicious-anaemia-society....
B12 Deficiency Info website
Unhappy with Treatment (UK info)?
Letters to GPs about B12 deficiency
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.
UK B12 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
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.
More b12 info in pinned posts.
Just written a very long reply on TiredMomma's recent thread. May be some useful info.
"When I suggested I might make a complaint she laughed "
If you are considering making a complaint may be worth looking into advocacy services who support people making complaints.
nhs.uk/conditions/social-ca...
seap.org.uk/services/nhs-co...
It depends who you're complaining to.
If surgery directly (it looks like receptionist had this in mind) than I found it's a waste of time.
If NHS it'll take long to get a reply but should get sorted out.
This sounds terrible, I'm so sorry. I found that sending a polite but clearly explained letter to the doctor before my appointment helped lots because there is always so little time during the appointment that I just get flustered trying to explain myself and am nowhere near as coherent in person as I can be in writing! The first letter I sent didn't lead to treatment, but the second one was forwarded to a consultant haematologist who actually knew something about B12 and agreed with me (I was shocked 
) I've been getting every other day injections since November. Don't give up hope, but don't let them mess you about either. If it's any help at all, here are my letters:
Thank you everyone. There’s a lot to digest there but all very helpful. I will concentrate on getting better details of the test results and see what the initial response of GP is. If treatment not offered I will then gather the evidence together and arrange a prebooked appointment, possibly writing something in advance as suggested by ktwing and speaking to PAS (I hadn’t realised they were based so close).
Just one other question in the meantime: I get tingling and numbness in 4th and 5th fingers and along forearms on both arms. I’ve had it for around a year but was told it was golfers elbow and offered steroid injections which I declined as I wasn’t convinced. Would that be typical of b12 neuropathy or more likely a coincidence? It’s just that a neurological symptom would sadly seem quite helpful right now.
A lot on here report tingling and numbness... personally I have pins and needles in my legs and arms and researching it shows it is a sign of B12 deficiency. Hope this helps! I was diagnosed 4 weeks ago after many similar symptoms to yours, my level was 105 and was given course of injections immediately, I live in Hull. Sorry you're having such a rough ride and hope you can get help soon.
Hi all. I have finally succeeded in getting blood test results
Latest results (1/6/18)
Red blood cell (RBC) count 4.66 10*12/L (4.50-6.00)
Heamatocrit 0.45 L/L (0.40-0.52)
MCV 97 fL (80-100)
MCH 31.9 pg (27.0-33.0)
Serum B12 138 ng/L (130-900)
Intrinsic Factor antibody 1.00 U/ml (0-6.00)
Serum folate 4.4 ug/L (>3)
No ferritin test done
Results from 29/3/18
B12 124 ng/L (130-900)
Folate 5.w ug/L (>3)
Ferritin 63 ug/L (15-300)
RBC count 4.68 10*12/L (4.50-6.00)
MCV 95 fL (80-100)
MCH 32.9 pg (27.0-33.0)
I also have results from Feb 2017 which show RBC count of 4.4 and MCH of 33.3, both of which were outside the reference range but was nkt told about these specifically at the time just red blood cells are a little enlarged, nothing to worry about and no further tests were done.
My thoughts are the results are consistent with borderline macrocytosis and that this has been the case for some time and should be enough for B12 deficiency diagnosis alongside the symptoms I have tried to report. I have been taking omeprazole 20mg since around Nov 16 and had thought that may have been reason for current low B12 but the Feb 17 blood results make me think that it may actually be PA. I have now had 2 of the initial 6 injections as GP agreed to make me go away whilst strenuously denying any deficiency so either way things will hopefully improve.
Interested in any observations on results and whether really worth the bother to pursue diagnosis further.
Possible iron anemia
Anxiously awaiting diagnosis
Wait between B12 diagnosis and loading doses?
NEW B12 RESULT - Should I supplement or not?
New diagnosis, questions to ask GP
