Doctors app today

[Andypandy30]

I’m seeing my daughters gp Today . I have the information re children and b12 deficiency off the pernicious anaemia society and stichting report . I will be asked for evidence based research as to why my child should receive more frequent injections than 3 monthly so have done my best to cover everything . Is the stichting report something he would take seriously as a gp as he keeps saying that he is bound by licence and cannot treat unless her blood results show she is deficient which they don’t and her intrinsic factor is negative and this is what he makes a decision on .she has all the symptoms and managed to get her started on injections in July but she lasts 2 weeks before numbness tingling burning mood changes and fatigue comes back .

[Margaret-S]

Hi Andy. I'm so sorry to hear of all the problems you are facing . This is the unfortunate story of the attitude most doctors/health professionals have towards this debilating illness. I'm afraid I know nothing about this or the report so cannot help you. I would like to learn more myself. My new health centre is about the most dysfunctional, ridiculous set up we have ever come across. The people I've spoken to have little to no knowledge or understanding of pernicious anaemia and as little compassion...even when confronted with evidence. I have been here since July and have not been able to see a doctor yet but have an appointment for 5th December. At this health centre they don't keep the I injections...instead, they sent a prescription to my nearest chemist for 5 little phials and I have to keep them at home and bring the whole box in every time I get my injection😡 It's so stupid. Everyone is complaining about it and our brand new councillor has vowed to take steps to get this whole debacle sorted. I did get a call back from one of the best and most popular doctors there. Unfortunately he thinks my problem with perfumes and smells is all in my head!!!! So he thinks I need to speak to a psychiatrist 🤔 no wonder people who can't get proper help just give up.

I do hope you get the proper help for your daughter, Andy. Don't give up. It's so good to have the Pernicious Anaemia Society to help us.

My apologies for my rant about things here. I know it's not helping you but I needed to get it off my chest. By the way, I got a phone call last week followed up by a letter about my repeat prescriptions. They told me that Amitriptyline was never on my prescriptions and another item which I had never heard of could be bought over the counter!! The stress levels by then were sky high. They obviously mixed me up with someone else. Not Good!

Anyway I do hope you get the help you need and your daughter.

Take care and let us know how you get on. 🌞

[Brainfoglady]

Look up NICE/BNF guidelines and sleepybunny on this site has a whole list of sites to click on for information.

Print these guildlines from various Health Authorities.

Your dr is talking nonsense and is old fashioned and uninformed . Blood results are subjective and only an indication.

He is not “bound by License” to undertreat

The guidelines state that neurological symptoms take precedence over blood test because they are not a true indication. Good luck

[Gambit62 Administrator]

not sure what you mean by Stichting report - Stichting is a dutch word roughly equivalent to 'charity'

If you are referring to materials from Stichting B12 Tekort then the GP may or may not be willing to pay attention to them. If they take no notice of materials from the PAS then reaction is likely to be similar. However, the article probably references materials that your GP would accept.

Being bound to act on licence is a bit of a jobs worth justification. Your doctor is under a duty to act in the best interests of his patients. The arrangements for licencing in the UK rely mainly on applications from drug suppliers so doesn't mean that a treatment isn't safe so much as that no manufacturer has applied to be able to treat under that protocol.

Unfortunately disciplinary boards can also be jobs worths in the way they use licencing arrangements which doesn't help.

[Sleepybunny]

Hi,

I hope your daughter's appointment went well.

There is a BNF for children, link below.

If your daughter is 16 + then adult BNF will probably apply.

BNF (Adult)

bnf.nice.org.uk/drug/hydrox...

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

BNF Children

bnfc.nice.org.uk/drug/hydro...

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

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 does not show updated BNF info. I gave one set of GPs this book.

"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. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

There are stories about children with b12 deficiency on these blogs; some of the stories are upsetting.

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Link about children and B12 deficiency

b12deficiency.info/children...

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

[Marz]

How did your appointment go ? Hopefully not too stressful ...

[Andypandy30]

Very stressful Marz even though I was prepared . I gave him all the info and he just kept saying I will go over these and make a decision . I felt that I’d given a good case for my daughter until I was explaining about the lasting damage if not treated and said that I’d been left with some nerve damage and he said but who told you that ? Was it a neurologist? I said no but I know myself and I felt a bit threatened at this point and lost my nerve . My daughter looks fine but the symptoms come and go as it has been with me . He said it can’t be neurological symptoms as it isn’t there all the time !! . So hoping she can get more frequent injections

It’s all I ask for . I told him to seek advise from any neurologist he wants to as he insists they’re the experts . I have a small bit of hope as my daughter cried and showed her vulnerability and said to him . So if I take too much is it going to be worse than how I’m feeling now . Hopefully he listened .

[Marz in reply to Andypandy30]

Really hope things improve for your daughter. Difficult to understand what goes on in these doctors minds. Such unrewarding work now they have their hands tied - preventing good practice due to Guidelines that are just that - and NOT rules ...

[Sleepybunny]

Hi,

I'm sorry to read the appointment was stressful.

Have you had any contact with PAS (Pernicious Anaemia society)? I'm sure they could suggest useful info to pass on to doctors.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no 01656 769717 answerphone

PAS membership

pernicious-anaemia-society....

There's a lot of helpful info on B12 Deficiency info website as well.

b12deficiency.info/

"I felt that I’d given a good case for my daughter"

Might be worth following up appointment with a letter to specialist which includes the info you want them to read, in the body of the letter plus a request to file letter with medical notes.

Keep any letters as brief and polite as possible and keep copies for yourself.

The reason I suggest putting the info in the body of a letter is that letters to doctors are supposed to be filed with patient's medical notes and putting the info in a letter will hopefully ensure that the necessary info is on file.

There will be some doctors who may be irritated by a letter.

I suspect the photocopied info I passed to one set of GPs was filed in the bin.

[Andypandy30]

Oh thanks sleepybunny I wil definitely do this . It would let him see his serious I am . Yes Iv spoken to Martyn hooper in the past and found him helpful re my own treatment so thank you

[Marz in reply to Andypandy30]

Sleepybunny would not have seen your reply as inadvertently you forgot to click REPLY so she would not receive an alert 😥

[Sleepybunny in reply to Marz]

hi,

It's okay I did see it. thanks.

[Sleepybunny]

Hi,

"He said it can’t be neurological symptoms as it isn’t there all the time !! "

I despair of ignorance sometimes....

I have multiple neurological symptoms, some of them very distressing and while I have a few that appear to be permanent, the majority disappear as long as I have enough B12.

Sadly for me the neuro symptoms return very quickly after an injection which is why I had to self treat.

[Andypandy30 in reply to Sleepybunny]

I am like this also as my symptoms come back very quickly . Do you know why that is or are some people just like this and need more to have be functional

[fbirder in reply to Andypandy30]

Nobody knows why some people need B12 more frequently than others. But some people are trying to find out.

The PAS are involved in an on-going study to try and find differences between three groups of people - those who do not need B12 injections, those who survive fine on 12-weekly jabs, and those who need more frequent injections. The study is looking at the chemical profile of the faeces and urine from these groups.

Preliminary results say that they have found differences between the frequent injectors and the other two groups in the faecal samples. This is great news as it is evidence that it is not 'all in our minds'.

But it'll be a long while before they work out a full explanation. The current study needs to be completed. Then they will have wo identify exactly which chemicals are present (or absent) in the frequent-injectors. Then they need to find out what biochemical processes might cause those differences.

It's many year's work.

[Andypandy30 in reply to fbirder]

Thank you fbirder

[Andypandy30]

Thank you