copy of letter sent to GP surgery

[Beadbuddy]

rheumatologist sent result of Dexa scan but interestingly he lists my medical diagnosis in which he writes History of Perniceous Anaemia (gastric parietal cell antibodies positive, intrinsic factor antibodies negative) and it was this last reading that I was told by a GP from our surgery t,hat it was proof that I didn’t have pernicious Anaemia and my B12 was sky high. So what about the positive reading that said there was history of PA? Can’t decide from those 2 different sources whether I have PA or not. Could someone perhaps provide me with an answer here on this site

[Technoid]

Your GP is wrong. A single negative intrinsic factor antibody test does not (by itself) exclude diagnosis of PA. If they read about the test themselves they will see this is the case. Sometimes I wonder how GP's can be trusted with any test results if they can't understand what they mean or do not mean.

[wedgewood]

It’s sad that your GP is so ignorant on the subject of Pernicious Anaemia . He needs to inform himself . About 50 % of Pernicious Anaemia patients test negative to an Intrinsic Factor Antibodies test . Your B12 needs to be sky high FOR LIFE !

Send him the article written by Dr Wolffenbuttel , which is on the PAS site at the moment . It’s a real eye-opener ! Excellent article.

[Jillymo in reply to wedgewood]

Do you have a link for the Dr Wolffenbuttle artical you could post me please? I am not able to locate it on Pas. !

[wedgewood in reply to Jillymo]

I don’t know how to send links , but it’s on a post of 18 hours ago headed “ Best wishes to all” from Cherylclaire . It’s in an answer from Technoid a few posts down .

Sorry I’m not much help !

[Jillymo in reply to wedgewood]

I have found it - Thank you. 😘

We cant all be computer wiz kids.

[Beadbuddy in reply to wedgewood]

Thank you Wedgwood I think Ive finally found it so Ive taken photos of first 2 pages and I will print them out and when I finally get my next B12 jab on Dec 20th I will leave them with nurse to be passed to my registered Doctor. (It was another Doc from same practice that I spoke with last week who insisted that my IF test proved I didn’t have PA. But if I felt I needed injections plus my b12 tablets that I can top up with private injections every week to which I replied, well I wish I could afford to spend that much but my pension only stretches so far? So seems like a monetary reason they don’t want us to have it more regularlyp)

It’s my own pDoc who left word that I can have my B12 injections if it makes me feel better but at no more than 3 monthly intervals!!!!!

[ACritical in reply to wedgewood]

Hi Wedgewood. May I ask where in this article it actually describes …Your B12 needs to be sky high FOR LIFE !…. It’s a good article but My fuzzy mind doesn’t seem to find this in that article. Can you help showing this? As my readings must be exceptionally high with my frequency of injections.

[wedgewood in reply to ACritical]

It is not in the article . Sorry if I’ve misled you . It’s what I know from reading posts on this forum for 10 years , and the results of my own B12 readings for many years , which are always off the scale . I inject 1mg weekly .

[ACritical in reply to wedgewood]

Ok. I inject more then you . At this moment injecting every day to get over my bad cold, it was leading to pleurisy as I have experienced regularly in the past. Now together with Vitamin D 3000ug and of course the co-factors that come with treatment for B12 deficiency. I also take a spoonful of Manuka honey 1000mgo. This is working and now on day 6 feeling almost where I was before this cold. I’ll continue until no cold symptoms, then back to twice a week and hopefully back to once a week. Not frightened anymore to up the injections as there is no alternative left for me. And it works! Still. I would like to find proof that for some people it’s absolutely necessary to keep serum levels high. In my case it seems so.

[Gambit62 Administrator]

GPC can give false positives which makes it an inconclusive test for confirmin PA as a diagnosis. It is no longer recommended as a confirmatory test by WHO.

IFAB is prone to false negatives but very rarely gives a false positive. This makes it good for confirming PA but also means that a negative result is a long way from ruling out PA.

The reason for the false positives on IFAB is because the test lacks sensitivity. The test methodology means that results will pick up other metabolites so the results are adjusted to get to a point where you are sure that the result isn't due to these other metabolites. The result is that you can have antiboidies but somewhere between 40 and 60% of the time the potential for confusion with other metabolites mean that that the result will be recorded as a negative. - The exact percentage depends on the exact test method.

Testing for gastrin isn't yet acknowledged widely but is a much more sensitive test for PA. But because it isn't quite new it isn't as widely available. Gastrin is a protein produced when you eat in response to tell your body to produce more gastric acid. In patients with PA it remains high long after you have eaten because you don't produce enough gastric acid to turn of the mechanism that produces gastrin. As a result patients with PA have extremely high gastrin levels long after eating.

[indywindy in reply to Gambit62]

Thanks for that piece of information about the gastrin levels. Does that mean that taking HCL and pancratic enzymes will help alt with the breakdown of food in the course of digestion?Kind regards

[Gambit62 Administrator in reply to indywindy]

don't know about pancratic enzymes but some acid should help with digestion in the stomach

[Narwhal10]

Best way is a Subject Access Request, using the Freedom of Information Act (2000) apply for hard copies of your notes using standard letter on the Information Commissioner’s Office to your Trust.

You can then read what was written when and by whom.

Take the win - Dr Rheumatologist at time of appointment and date has written Pernicious Anaemia (gastric parietal cell antibodies positive, intrinsic factor antibodies negative).

Please stop them checking your B12 levels. Do not offer your arm until you say, Please write on the blood form, patient does not consent to B12 levels being checked.

They will soon wake up a bit more when we start saying NO.

😘

[helvella in reply to Narwhal10]

I think you mean the Data Protection Act 2018.

(Freedom of Information Act covers access to information about public bodies, etc., not individuals.)

[Narwhal10 in reply to helvella]

Nope GDPR (2018) is one regulation. There are many data laws.

Freedom of Information Act (2000). How are the Trust/Health Board retaining, storing, transferring my health data ? It is Information Governance because if they have not been handling data properly and securely, they have been very naughty indeed.

# Oh whoops they can be reported.

Then there is the Public Records Act (1958) which is slightly different to Public Records Act (1967).

Computer Misuse Act (1990) is my favourite 😇.

Studied Computer Science so obvious had to learn which ones did what.

I am waiting to see what the outcome of Harry being hacked on 33 counts.

🐳

[ACritical in reply to Narwhal10]

👌🏻, keep us informed about that bit of research?!😂

[Narwhal10 in reply to ACritical]

Which research ?😉