Update!

[Fallingapart0627]

Hi, I have been to see GP this morning and he has confirmed that they are aware of the PA diagnosis from over 5 years ago and the letter confirming positive IF and PCA is on the system. He said the reason I have not been on treatment is because my bloods are always normal. I did tell him that, as per the guidelines, as I am having neurological symptoms, I should start the injections immediately. He is not keen as he still thinks the numbness etc... is down to disk problems. He is checking my B12 and will decide on injections when they come back. He has agreed to refer to Neuro though so a small step in the right direction I think. Thank you all for your help and advice, it has been invaluable.

[Sleepybunny]

Hi again,

"and the letter confirming positive IF and PCA is on the system. "

Might be a good idea to get a copy of the letter printed off if possible.

"He said the reason I have not been on treatment is because my bloods are always normal"

Have you checked this on the system? Sometimes GPs say results are normal when they are not.

If you join PAS , print off a copy of PAS leaflet " An Update for Medical Professionals: Diagnosis and Treatment " and shove it politely under GPs nose along with a copy of this flowchart which clearly indicates that B12 treatment should already have started and that once diagnosed with PA treatment is lifelong.

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

[Fallingapart0627 in reply to Sleepybunny]

Hi, thank you for your reply. I have joined the PA society today so I will look for the Update you refer to. It is just such a minefield isn’t it, I’m exhausted with it all already! 😂 Had my bloods done today so should know in a few days if he will treat me or not. Many thanks again x

[Sleepybunny in reply to Fallingapart0627]

Hi,

The "An Update for Medical Professionals: Diagnosis and Treatment " is in this next link.

pernicious-anaemia-society....

Have you considered going to see Practice Manager in person and asking if it is practice policy to not treat people with confirmed PA? Take someone with you if you do something like this as it will be seen as being confrontational.

Perhaps ask practice manager for a copy of whichever guidelines GP practice is using for treatment of B12 deficiency and PA.

If they are reluctant you could submit an FOI (Freedom of Information) request to practice manager asking for a copy. Keep copies of any FOI requests you make.

Again this might be seen as confrontational so weigh up pros and cons.

Link about FOI.

gov.uk/make-a-freedom-of-in...

Some GPs and GP practices can struggle to cope with an assertive patient. Pressure was put on me to leave one GP practice.

Still think you should try to get written proof of your PA diagnosis before tackling GP again.. It has been known for parts of medical records to go missing.

In the end, some on this forum give up trying to fight stubborn ill-informed GPs and they resort to self treatment.

[Fallingapart0627 in reply to Sleepybunny]

Hi, yes I will definitely request a copy of the letter when I go back to see him. If he refuses to treat me with injections then I will speak to the practice manager. I am trying to keep them on side at the moment but I will not be fobbed off either. Many thanks for all your advice.

[Fallingapart0627 in reply to Fallingapart0627]

Sorry forgot to say Thank you for the link too x

[Sleepybunny in reply to Fallingapart0627]

You could hand in a signed written request to Reception that says you would like a copy of records for relevant time period.

Look at links about GDPR legislation.

ico.org.uk/about-the-ico/ne...

There should be something about GDPR on your GP surgery website if you search for GDPR.

I think you are right to try to keep GP onside at moment ; at least until you have proof of your PA diagnosis. If they start to feel that a complaint is possible then they might be unhelpful.

NHS Complaints

nhs.uk/using-the-nhs/about-...

I really hope you are able to speak to PAS soon, they should be able to guide you through how to tackle your GP.

Sadly they have a lot of experience although I think more often it's patients whose injections have been stopped rather than patients whose injections have never started.

I suggest you start keeping a symptoms diary as over time this may provide evidence of any deterioration and if you do get treatment could provide evidence of improvement. You could include in diary each time you ask for treatment and what response was.

If you haven't already, write out a complete symptoms list for GP etc making a particular effort to list every neuro symptom.

[Fallingapart0627 in reply to Sleepybunny]

Hi, yes I will bear this in mind and check the website. Thank you again x

[fbirder]

"I have decided to stop your insulin because your blood sugar levels are normal"

Ask him if he has ever said those words.

[Fallingapart0627 in reply to fbirder]

Hi, I know how ridiculous! It really is an uphill battle to get the help we need and it shouldn’t be like this. Thank you.

[wedgewood]

A diagnosis of Pernicious Anaemia means treatment FOR LIFE ,with injections of B12 -often enough to keep symptoms at bay .

[Fallingapart0627]

I have been officially diagnosed by blood test for over 5 years and not one Doctor has ever explained the importance of this to me. If they had then maybe I could have avoided a lot of the neurological problems I'm having now. I'm just relieved that I am a lot more informed now, mainly thanks to the lovely people on here, and will hopefully get the treatment I need. Thank you x

[Mannequin18 in reply to Fallingapart0627]

I feel for you.

I didn't get treatment for 8 years after being diagnosed with autoimmune PA. It was only when I changed surgeries that I got proper treatment.

I moved area about 2.1/2 years ago and came back to the same thinking GP, who tried to stop treatment, (because people take too many vitamins). It is frightening to think how much knowledge they don't have.

I fought and had them reinstated, but I don't think that they gave me my B12. And now I have Lupus, just diagnosed. I feel awful, and have just gotten over flu.

Good luck to you.

[Fallingapart0627 in reply to Mannequin18]

Hi, yes it is really scary and so frustrating when the Doctor’s don’t understand our condition. We shouldn’t have to fight for treatment but it looks like it’s the norm for most of us unfortunately! Good luck to you too and take care x

[Sleepybunny]

"have been officially diagnosed by blood test for over 5 years and not one Doctor has ever explained the importance of this to me"

Have you asked every GP in the practice to treat you?

GPs within the same practice can vary widely in what they are prepared to prescribe.

Some of the other GPs may not even realise that you have not been treated.

Print out PAS leaflet " Treatment is For Life" and stick that one under their noses as well.

pernicious-anaemia-society....

It's in the second row.

[Fallingapart0627]

Hi I will do just that 🙂 Thank you x

[Sleepybunny]

It's easy to change GPs in UK.

nhs.uk/common-health-questi...

Might be worth joining your nearest PAS support group and seeing if any of them know of helpful GPs in area just in case you need to change.

pernicious-anaemia-society....

You can look at people's comments about GP surgeries in your area on NHS website.

nhs.uk/service-search

Hope you get the chance to ring PAS today. PAS office should be open from 8am.

PAS tel no 01656 769717

[Budsa]

If you look on your GP practice website it will give details and maybe a link to which Clinical Commissioning Group (CCG) they belong to. Email them and ask what are their policy guidelines for treating b12 deficiency. I did this and they replied that they are still working on a standard but meanwhile expect all their GP practices to follow NICE guidelines. I have seen a decent change in my doctor's attitude since presenting him with this letter. However, he has told me that if he treated my 144 level with injections then he would have to treat 75% of every patient he sees. This is obvious nonsense but he has agreed to start injections if he can't find alternative reasons for my b12 deficiency and/or neurological issues within the next month. I am awaiting results of a coeliac test, despite having none of the symptoms. He has also done a repeat full blood test. He asked me what I thought my b12 level would now be after 3 months of 1000 mcg of cyanocobalamin daily. I said, somewhere in the 400s based on trials I had read about, but that the BMJ says that oral medication does not address the clinical symptoms. I was right it is now 465. Not sure why he bothered. Everyone can absorb around 1% of oral b12 regardless of the cause of their b12d. I have to keep a food diary (bloating), get my eyes checked by an optician (degrading vision) and my ears checked by an ear specialist (tinitus). Next appointment should be interesting.

Keep up the fight. I think you are almost there but if still having difficulty then change your GP. Its easier than most people think.

[Sleepybunny in reply to Budsa]

Hi,

Link to CCG list (England)

nhs.uk/servicedirectories/p...

Wales has Health Boards

wales.nhs.uk/ourservices/di...

Scotland has Health Boards

scot.nhs.uk/organisations/

Northern Ireland has Local Commissioning Groups

hscboard.hscni.net/local-co...

[Fallingapart0627 in reply to Sleepybunny]

Hi Sleepybunny, Thank you for this, I will check now. Not too good today so sorry for late response x

[Fallingapart0627 in reply to Budsa]

Hi, Thank you for the advice. My bloods may be back tomorrow so I will try and get an appt to see GP. Just feeling a bit rubbish and tired today but I will have a look on the website. Thank you x

[Fallingapart0627 in reply to Fallingapart0627]

Hope you get your injections started soon. Why is it such a struggle to get the right medicine that we are entitled to?! Take care x