Hello to you all & I hope you are well. My father had PA in old age, I was diagnosed with PA in 1992 when I was 32yrs old, One of my daughter who is 27yrs old, has been unwell for a couple of yrs & after blood tests etc she received a phone call from her surgery telling her she had PA and to make two appointments 1st with Dr then with the nurse to start treatment, 1st app with Dr, the Dr said she didn't think she had PA at all she believed it was because she had 'admitted' to drinking alcohol if she went out socially (she has 5kids & is poor) the Dr also accused her of lying about being told she had PA on the phone call she received! I am besides myself with anger but mostly I'm scared for her health, she felt so humiliated (grrrr) I have bought her a B12 spray which I believe she is using but I can only do that short term (state pension) I'm imploring her to change her Dr's which she can do but it's falling on deaf ears & I know now 100% she wont ever go back there again regardless of the health problems. Please can anyone advise me on anything practical/usefull I can do to help her. I am grateful to you. xx
Feeling scared for my daughter. - Pernicious Anaemi...
Feeling scared for my daughter.
would your daughter agree to make another appointment if you went with her?
you could also see if you can find out which member of the surgery actually rang your daughter ... and make sure that you have a copy of your daughters results.
casual drinking is extremely unlikely to cause liver damage that would lead to B12 deficiency ... and if her GP suspects that her problems are caused by liver damage what is she doing about treating this.
Sorry I can't be of more practical assistance as it really does sound as if the GP has been extremely unprofessional in the way she treated your daughter. However, it is also possible that the GP didn't express herself very well and so wasn't understood properly - it would be useful to try and get to the bottom of who really did say what to who if you can and then take it from there.
Thank you for your reply. We did try and find out who rang her but no one's talking, I love the idea of getting a copy of her results, I'm in the UK & they don't like that sort of thing over here lol, thanks for that I'll take a look now & see how we do it. Do we apply to the Hospital who did the tests or her GP/Practise Manager etc? Thanks again. x
If the hospital did your daughter's tests perhaps it was they who telephoned the diagnosis of P.A. Perhaps the surgery your daughter attends hasn't joined up the dots.
All blood tests are sent to the Hospital for testing by the GP's & it is someone at the practise who phones with results etc, her Dr had the results in front of her when making the comments to my daughter but I understand where you are coming from. Thank you. x
your daughter is entitled to a copy of her results and as they are at the surgery then you should be able to get them from the surgery - if you ask at reception they will tell you what their local requirements are - they can make a charge to cover administration - though they won't be able to make a charge once the GDPR comes into effect at the end of May - some surgeries do, some don't - some will do it as you ask - others will require something in writing - so you can write a note then and there. If they are really officious then they will insist on sending you the results rather than giving them to you then and there - if they refuse tell them that you will be complaining to the Information Commissioners office.
Hi,
It might be worth you or your daughter joining PAS (Pernicious Anaemia Society) and talking to them. Membership costs £20 for a year. In some cases they can intervene by writing letters and at very least they can pass on useful info.
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....
Some people on forum have been helped by B12d.org charity.
More b12 links, apologies if I've posted these to you before.
B12 Deficiency Symptoms
pernicious-anaemia-society....
b12deficiency.info/signs-an...
b12d.org/admin/healthcheck/... (may need to be B12d.org member)
Risk Factors for PA and B12 Deficiency
Having a blood relative with PA or other auto-immune conditions can be a risk factor for developing PA.
Is GP aware of family history of PA?
pernicious-anaemia-society....
b12deficiency.info/what-are...
b12deficiency.info/who-is-a...
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.
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. I gave a copy of this book to my GPs.
"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.
UK B12 documents
I suggest reading all of them plus summary of b12 documents in third pinned post.
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...
"I love the idea of getting a copy of her results, I'm in the UK"
Access to Medical Records (England)
nhs.uk/NHSEngland/thenhs/re...
nhs.uk/chq/pages/1309.aspx?...
It can be very interesting to see what a GP has written in past.....
I learnt to always get copies of all my blood results after being told everything was fine and then finding abnormal and borderline results on copies.
Blood tests
In relation to b12, I look particularly at B12, folate, ferritin and full blood count.
Link about What to Do Next if b12 deficiency 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-...
Coeliac disease
Has she had tests for Coeliac disease?
NICE guidelines Coeliac disease recommends anyone in UK with unexplained b12 deficiency, folate deficiency or iron deficiency should have tests for Coeliac disease.
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.org.uk/coeliac-dise...
"Dr said she didn't think she had PA at all she believed it was because she had 'admitted' to drinking alcohol"
If GP thinks alcohol is responsible then it might be worth her keeping a diary of what she is eating and drinking for a week or two.
Symptoms diary
Some forum members keep a symptoms diary. it can be useful evidence of b12 deficiency symptoms.
More b12 info in pinned posts on this forum.
I am not medically trained.
Thank you so much I'll take a look now. x
Hi miniskirt
As Sleepybunny has already mentioned and posted a link regarding this, you are ENTITLED to a copy of your test results. If you don't have on-line access set up for this, ask at the reception if it could be set up. You will have to sign a document giving permission etc. At the same time, ask them if they would print you a copy of the test results although there may be a charge for doing this printing. Once you've got on-line access set up, you'll be able to check them and/or print off yourself etc.
Good luck
Hi again,
Online access in UK gives access to a summary of results and records but it is just a summary and may not have all the info wanted. Process may vary according to which part of UK a patient is in.
If a patient is unhappy with treatment over a long period of time, I think it can be helpful to get a copy of complete medical records , maximum UK cost £50, especially if there is a possibility of making a complaint in future. As far as I know a patient does not have to give a reason why they want to have copies.
Some forum members have found that although told they had PA it was not recorded in their medical records or a letter/test results confirming diagnosis of PA or B12 deficiency had been lost at some point.
GP surgeries can refuse to give copies if they feel that to do so could cause harm to the patient.
Although relatively easy to get copies from UK GP surgeries, my personal opinion is that it is much more difficult to get copies of medical records from hospitals: may involve filling in forms and visit to hospital records office.
If patients are unhappy about something in medical records they can ask for a statement giving their side of things to be inserted into their records. A doctor's medical opinions cannot be changed just because a patient disagrees with it.
If paying £50 is difficult then as far as I know it is free to just view medical records but this would probably involve contacting practice manager and arranging an appt to view records. I am assuming that there is no reason why a patient could not make notes from screen when viewing records.
"she received a phone call from her surgery telling her she had PA and to make two appointments 1st with Dr then with the nurse to start treatment, 1st app with Dr, the Dr said she didn't think she had PA at all"
If GP says she has not got PA, may be worth checking blood results to see if an IFA Intrinsic Factor Antibody test was done. IFA test can help to diagnose PA but test is not very reliable and it is still possible to have PA even if IFA result is negative or normal range. Some UK GPs may not be aware that it is possible to have Antibody Negative PA.
If IFA test has not been carried out, has doctor explained why not?
She could also look carefully at copy of B12 result. If B12 is low then lab who carried out test will often include a note to GP to carry out IFA test.
Even if GP thinks B12 deficiency is due to another cause; to me it makes sense to exclude possibility of PA especially if there is a family history of PA.
Antibody Negative PA
stichtingb12tekort.nl/weten...
See flowchart above for when Antibody Negative PA and PA can be diagnosed in UK. I take a copy with me to appts. Has this flowchart been followed by GP? Some GPs may not be aware of BSH Cobalamin and Folate Guidelines (link in above post). I gave a copy of them to my GPs.
Alcohol and B12 Deficiency
The GP suggested alcohol may be causing B12 problems. One of the symptoms that can be associated with excessive alcohol intake is enlarged red blood cells (macrocytosis). See link on Macrocytosis in my post above.
If your daughter has enlarged red blood cells (macrocytosis) then I wonder if GP has assumed that this is due to alcohol intake. As I said above, may be worth your daughter recording her food and drink intake for a time to show GP if she feels GP has misunderstood.
I feel it's very important to correct anything in medical records that is wrong otherwise the wrong info can get passed on to other medical professionals and potentially delay diagnosis/correct treatment.
Macrocytosis can also occur in PA.
She could look at her results for full blood count (FBC) or blood film to check if there was evidence of macrocytosis. High MCV and high MCH on Full Blood Count can indicate possibility of macrocytosis.
PAS article about FAQ from medical professionals about PA
pernicious-anaemia-society....
It mentions some of the difficulties with diagnosing 12 deficiency and PA.
PAS article about FAQ from patients about PA
pernicious-anaemia-society....
May be some useful info for your daughter in above link.
Martyn Hooper's blog, posts about people seeking diagnosis and how PAS supported them.
martynhooper.com/2017/06/24...
martynhooper.com/2017/07/01...
Have GPs refused to treat her with b12 and does she know what her b12 level was?
b12deficiency.info/b12-writ... See various points listed towards bottom of page, there's some very useful info.
My personal preference has always been to put queries about treatment/diagnosis in a polite, brief letter. along with symptoms list, relevant blood results, extracts from relevant medical articles/documents.
I have sometimes asked for referrals to specialists eg neurologists, haematologists and other specialists in brief letters to GP along with evidence/reasons why I felt referral was necessary eg references to UK medical guidelines.
Doe she have neuro symptoms eg tingling, pins and needles, tremors, balance issues, memory problems, tinnitus plus other neuro symptoms?
If yes to neuro symptoms, has GP sought advice from a haematologist? See NICE CKS link in my post above which recommends this.
Has she seen a neurologist if she has neuro symptoms? They may pay more attention to family history of PA although sadly b12 deficency is not always as well -understood by neurologists as it could be.there are many conditons that can lead to neuro symptoms so importnat for other possible conditions to be excluded.
Some forum members have passed on info about neuro consequences of b12 deficiency to GPs/specialists in the hope that this might encourage doctors to consider B12 treatment.
PAS news item Neuro Consequences of PA
pernicious-anaemia-society....
PAS article about SACD, sub acute combined degeneration of the spinal cord, only available to PAS members.
pernicious-anaemia-society....
I hope she finds a GP who will really listen.
A word of warning, some GPs and specialists find it difficult to cope with assertive patients who ask questions, write letters, provide info etc and doctor/patient relationship may suffer. I eventually gave up worrying about this although I always tried to be as polite as possible.
"Pernicious" means harmful, deadly and PA can be if not treated correctly.
Other specialists
Sometimes route to diagnosis can be through other specialists who spot possible signs of b12 deficiency eg
Dentist may spot mouth ulcers, glossitis of tongue
Opthalmologist may spot damage to optic nerve
Audiologist may diagnose tinnitus, common symptom associated with b12 deficiency.
Gastroenterologist may spot signs of gastritis
Podiatrist,may be helpful for patients with neuropathic symptoms in feet, in UK podiatrists with correct training are allowed to prescribe B12.
martynhooper.com/2015/11/30...
Endocrinologists, rheumatologists may also be helpful.
I think best chance of support/useful info is PAS.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769717 answerphone
Posting for my daughter
Help with blood test interpretation for my daughter 
Trying to help my 80 year old mum- advice would be much appreciated!
