B12 Injections stopped as I do not meet crtieria.

[b12timbo]

Good morning

I now have information to identify that;

1) the practice updated their process in November 2022 to " ensure only patients with P.A. receive B12 injections.

2) Blood tests in 2018 show low B12, but Intrinsic factor and celliac screen were negative.

3) GP Practice direct me to take oral tablets instead of injections.

4) I am on P.P.I medication, ( 2 x 20mg daily) , so oral medication will not work.

Does any one have any suggestions , I currently have an active complaint with I.C.G. but they seem to defend the position stating despite planned changes to NICE guidance.

Thank you , in advance

Tim

[Nackapan]

Yrs I had a letter in this time frame with an enclosed blood form.Stating if b12 levels normal and a negative IFAB test b12 Injections would stop.

It also said high levels are detrimental to health.

I booked a Gp appointment.

Telephone.

I was immediately told the letter shouldn't have been sent to me ????

A neurologist had been sought for advice from Gp after many challenges from me.

In your situation.

1. Have they said what else causes your symptoms?

2. B12 works for you in managing symptoms.

They return without it.

3. In my case .

Trialled oral sources and didn't work.

4.

A Gp can prescribe in the patients best interests.

Clinical response

Keep it simple.

They can interpret guidelines differently.

But words like :

No further testing is required hard to interpret in an other way

[b12timbo in reply to Nackapan]

Thank you Nackapan .

My pharmacist suggests it is a cost cutting exercise .

Practice stonewalled me refusing to explain how they arrived at decision.

I have tried oral B12 but it does not work.

I do have sleep apnoea but this causes a tiredness not the fatigue and brain fog .

In the absence of injections I now have pins and needles ,muscle pains, struggle to think clearly and crash out every day .

GP is not interested in prescribing in the patients best interests.

[palmier]

PA can't be ruled out by a negative intrinsic factor antibody test. There is a high probability for a negative test result even for those who have PA. Not very cost-cutting either to refuse you an injection if not getting the b12 injection makes you worse. The vitamin itself is not expensive at all.

[b12timbo in reply to palmier]

Thank you for your reply. Do you know if there is a reliable test for P.A.

[palmier in reply to b12timbo]

I don’t think there is. Well, a positive intrinsic factor antibody test result is, I think, considered a reliable confirmation. But a negative test result is inconclusive.

Long time ago there was something called the Shilling's test, but it was elaborate and isn't used any longer. It involved drinking radioactively labelled b12 after a loading injection of normal b12, and then collecting the urine for 24h. If enough of the radioactively labelled b12 could be detected in the collected urine, that was proof that b12 had been absorbed in the intestine and the patient didn't have PA.

[Gambit62 Administrator in reply to palmier]

palmier fyi: The new guidelines being developed mention a gastrin test - it may not be available in all areas but it does seem to be quite a specific test for PA - people with PA seem to show continuously astronomic levels.

[Littlelodge123 in reply to Gambit62]

and the reason for those high levels is, if I have understood it correctly is because gastric acid is supposed to switch off gastrin production. In PA patients gastric acid is compromised and so we have weak acid secretion or none at all. Hence the specificity of this test for PA. Which makes me wonder why do GPs prescribe PPIs to PA patients when we don’t need our gastric acid reducing? I’m hoping someone might be able to explain.

[b12timbo in reply to Littlelodge123]

I believe I am on PPIs for barrats aspohogos and reflux . if this is any use .

[Gambit62 Administrator in reply to Littlelodge123]

PPIs, as well as stopping the production of gastric acid, also affect one of the valves in the stomach that is the cause of the heart burn experienced by both patients with high and low stomach acidity. Personally I find taking something acidic provides me with almost immediate relief if I experience this so I've never taken PPIs - which should really only be used for short periods only but rarely are. Personally I think GPs tend not to appreciate that the symptoms of high stomach acidity and low stomach acidity are the same so just respond to and treat the symptoms with something resolves the symptoms but may not be the most appropriate treatment for the exact cause.

[Littlelodge123 in reply to Gambit62]

Interstellar and I agree with you as I do exactly the same. I take Betaine HCL and I note that when I run out my digestion is so much more difficult.

[rogergee in reply to Gambit62]

No opinion either way on this, but I read a week or two ago that taking a bit of apple cider vinegar (the sort with the 'mother') is supposed to be excellent at relieving heartburn.

[jade_s in reply to rogergee]

I take lime juice & it's 100% stopped reflux/heartburn. ACV gives me migraines.

Based on endoscopy results & some reading, i concluded i probably had bile reflux due to slow digestion due to low stomach acid, something often seen in PA/AMAG. GI doc resistant to testing stomach pH levels 🤷‍♀️

[rogergee in reply to jade_s]

Thanks jade_s. How much lime juice would you take, and how diluted?

[jade_s in reply to rogergee]

I take about 1/4 cup lime juice (such as ReaLime brand) added to 1 cup or bit more of water. I primarily take this once a day at dinner - my biggest meal. I also take it during the day if I've eated something that upsets my stomach.

That might be too strong for some. According to google, 1/4 cup is 4 tablespoons, so somebody just starting out might try 1 or 2 tablespoons at first and see how it goes. It can burn a bit at first especially if you have some gastritis or ulcers.

Last year I did gluten loading - and for whatever reason didn't take my lime juice (i've been using it for about 6 years now). I felt horrid - lots of bloating, burning, reflux, etc. On my endoscopy there was "reactive gastropathy" - which is what can be caused by bile reflux. ( niddk.nih.gov/health-inform... ; can also be found in PA pathologyoutlines.com/topic... ) . Negative for H. pylori and no celiac.

I restarted the lime juice and cut out gluten anyway. The first few days it burned a bit, but very quickly my stomach got better and back to normal. Obviously I'm not a doctor and not "recommending" this for people in the same situation, but it has helped me.

[rogergee in reply to jade_s]

Thanks for that jade_s. I definitely think starting with less would be the way to go.

[Littlelodge123 in reply to rogergee]

30ml diluted with water in a glass is what I used to do

[rogergee in reply to Littlelodge123]

Fab, thanks. In anticipation, or when the heartburn struck?

I've also recently been told that a bit of bicarb dissolved in warm water does the trick... that's a bit of a stretch to drink though, I'd say.

[Littlelodge123 in reply to rogergee]

With every meal. It is acidic about pH2 so it’s replacing the gastric acid I am missing

[rogergee in reply to Littlelodge123]

Thanks very much.

[HKAnne in reply to Littlelodge123]

My former GP admitted that he did not know that PPI's affected B12 absorption. His exact words were "that's a new one on me!". However, I was lucky that he believed me, probably because I walked into the surgery holding a copy of Martyn Hooper's book!

[Sleepybunny]

Hi,

Might be worth pointing out to them in a letter that a negative result in IFA test does not rule out PA (Pernicious Anaemia).

Maybe you could show them this...

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

Testing for PA

pernicious-anaemia-society....

When they tested you for coeliac disease, did they follow the recommended procedure in guidelines below?

NICE guidelines Coeliac disease?

nice.org.uk/guidance/ng20

It's possible for patients with coeliac disease to get a negative result in tTG IgA test (usual test for coeliac).

1) they have IgA deficiency.

Did you have a Total IgA test?

2) they were not eating enough gluten before blood was tested.

Did GP tell you to eat plenty of gluten in more than one meal per day for at least 6 weeks before blood was tested?

More about diagnosis on Coeliac UK website.

coeliac.org.uk/information-...

Unhappy with Treatment (UK info)?

How to write letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link to thread about Patient Safety, has useful links for those in UK having difficult health experiences.

healthunlocked.com/pasoc/po...

[b12timbo in reply to Sleepybunny]

Thank you so much.

Unfortunately the practice refuse to answer what tests were performed but have sent me a wonderful letter stating " as long as you are are patient here you will not receive any further B12 injections". Waiting on response to my complaint to the integrated care board.

I have however found a service that will provide B12 injections at a cost . will update my experience on here once I have had it.

Thank you to every one for your valued input .

Tim

[jade_s in reply to b12timbo]

How nice of them 😒

You can also order from Germany pharmacies and do it yourself at home, like the rest of us do... if you would like that info, let us know.