So annoyed

[Andypandy30]

Got my bloods done last week and just rang for my results I was to get b12 iron and thyroid check . I also sneakily asked for intrinsic factor to be done so iv just found out I only had iron done . I'm so annoyed as I was at my lowest last week and wanted to see what blood results were prior to getting injection on wed . Now iv had the injection and this will skew results not that it matters as they are not listening to me ! I am no better since having injection please can someone tell me the quickest and cheapest place for b12 testing and intrinsic factor in U.K. Iv had enough of my doctor and they're all the same .the injection I received has not helped I have numbness brain fog pins and needles poor coordination and fatigue I am no different to what I was like prior to injection . My first results in April were 302 then when I had loading doses it went up to 2000 I felt the best I had in years . In June prior to next injection on 3 monthly regime I had a reading of 1000 I received my b12 injection in July and have felt the same with no benefit since then . This was my second 3 monthly injection and I still feel like this so this regime is not working . I really wanted to find out my result before injection as I have suffered since loading doses stopped . Please help

[Gambit62 Administrator]

if I was you I wouldn't waste my money on an intrinsic factor test at this point.

From your description above it sounds as if your problem isn't low B12 levels it is that treatment for low B12 levels has resulted in a reaction that is hampering the transfer of B12 from your blood to cells. This is most effectively treated by keeping your levels really high - meaning that you sound as if you really need much more frequent treatment.

Unfortunately it can be really difficult to get a GP to treat more frequently than 2 months (and it sounds as if this is what you need) because the vagaries of the licencing rules in the UK mean it is only 'licensed' for a frequency of 8 weeks, though it isn't actually dangerous to have and keep levels high but it does act as a barrier for many GPs.

You could try sublinguals tablets or sprays or nasal sprays or skin patches as a way of supplementing, and they can be quite effective as a way of maintaining high levels for some people (though the amount you absorb is actually a small fraction of the dose in the spray/tablet), but this can be sufficient to maintain high levels after a B12 shot.

IFA is another test that is problematic - it gives false negatives 40-60% of the time so a negative doesn't prove that PA isn't the cause of your absorption problems. Which means you could have the test done several times without getting a positive even though you do have PA. The advantage of knowing that you have PA is that it increases the risk of some types of cancer, so you know to get yourself monitored for these.

If you still want to go ahead St Thomas's in London do the tests - but you'd need to refrain from supplementing for at least 3 months for the active B12 and for at least a day or so for the IFA - possibly a week - depends on the test method and I don't know what test method they use.

If you are suffering from pins and needles you have neurological symptoms and should really be on 8 weekly shots per BCSH guidelines - your GP can access these through the BNF but you can also access them here.

onlinelibrary.wiley.com/doi...

[CCSP-27]

Hi Andypandy , I hear you and feel your 'pain' ! The 3 monthly regime is ridiculous of course.

Ok so first of all to get the IF test done you have to completely badger them, try another GP in your Practice, or talk the Practice Nurse into doing it ! It's just dreadful to have to resort to being divisive when you're feeling so ill !

Re the Private testing - I'm sure I read it on the PAS site if you have a look. Mind you why the hell should you have to pay for it. It'll be sheer frustration and lack of help will drive you down the Private path - I've been there too

I think if there's a time lapse between 💉 you can be tested again for a reliable result as the B12 is no longer being absorbed ? Check that on the PAS site too. Mind you my B12 would appear never to be absorbed !

I did manage to get agreement for both the IF test and the Parietal Cell test too. Do y'know I can't even remember how and it's only a few months ago. I usually just wear them down ! Well, guess what both tests came back positive for antibodies - whadayaknow !

We started on the injections every other day for a month and GP wanted to go down to once every three months - as per NICE and NHS guidelines PAH Totally useless, I'm still very symptomatic and I'm still at once a fortnight. I get about 10 days of ok'ness and I then go downhill very quickly !

I'm red flagged anyway with an undiagnosed brain condition so I reckon it's worth just wearing them down until I get my way! This one size fits all carry on drives me mad

Have you been tested for the hpylori bug in your gut ? Do you know if you've a 'leaky gut' ? Do you have acid reflux or similar digestive problems ?

I've got all of the above ! When you have PA with the antibodies present the above conditions often go hand in hand.

It's my belief that an endoscope is needed once a year to biopsy the stomach wall and check for pre cancerous cells. Now not that I'd look forward to that type of procedure but I've had a Trans oesophageal echo for my heart with no sedation so I reckon I can handle it.

Does the Hpylori test need repeated to check if the bug has gone ?

NO says GP ..........IT DOES ! I've researched.

Does an endoscope need done as a pre check for cancer

OH NOT AT ALL says GP.......IT DOES ! More research

The U.S., Australia and Europe all have this as standard protocol. My maternal grandfather died of stomach cancer as did his daughter, my aunt - you'll appreciate my concern.

If you're having all those Neuro symptoms you definitely definitely need more care and more 💉💉💉💉💉💉 ......before there's irreversible damage done 🙈

Get on to the PAS site and you'll find much more knowledgeable info than I can offer. There's a helpline too - sorry I don't have the links at hand.

I wish you the very best and hope for your improved health. It's very difficult living with invisible illnesses - I can empathise entirely !

Susanmac

[Andypandy30 in reply to CCSP-27]

Thank u so much for your great advise . I will try for another test . I'm just not feeling any benefit from the injection on this 3 monthly regime . I have tried and tried they are def stuck on the one size fits all just like people who don't have it and when you explain your symptoms they look at you so strangely . Not fair x

[CCSP-27 in reply to Andypandy30]

No it's not 😡

I have found the only way to get things done is through stealth and persistence. Print off info from the PAS site and say "look at this great research - I'm sure you'd be interested" or something like that.

They're not giving away gold ! These B12 💉 cost very little

The IF and PC tests are a wee bit expensive as far as I know but hey what's another few quid !

You might have to just give in and have them done privately along with self injecting. I know nothing about self 💉 as I've had no need up to now .......here's where the PAS folk will give you all the biz.

All the best 😊

[Andypandy30 in reply to CCSP-27]

Thank you Susan I M seriously thinking of self injection as I have struggled so long . I will print off the info and try again x