GP does not do loading dose as per BNF guidelines due to pressure on appointment availability !1

[Barry1955]

Hi all,

Finally had a reply from my letter to GP questioning why my loading dose of 6 jabs was over 6 weeks, not 2 weeks as per guidelines. ( I enclosed copies of EVERY treatment protocol ) and reminded him I had tested positive for IFA antibodies and Parietal Antibodies, and had neuro symptoms even though serum test was 340.

Seems they don`t do alternate day loading as it puts too much pressure on appointment availability.

Also, my retest (after loading ) showed b12 was over 2000 ( big surprise ) and quoted normal levels being between 191 - 663 according to their laboratory guidelines.

He quoted an article in the Oral Diseaeses journal published on 7th Sept 2012 by A.Sun, Y.P Wang et al, finding only 12.9 % of persons with a gastric parietal cell antibody positivity had pernicious anaemia by the WHO definition. However, those with positivity had a higher frequency, thereby tendency of haemoglobin, iron or vitamin B deficiency. Therefore extrapolating from this I would envisage you to have one injection every 2 months as per your positive results.

1) Should I be happy I`ve got some sort of treatment , or

2) should I request the proper treatment ie, alternate day injections UNTILL symptoms stop improving

ATB

Barry

[Foggyme Administrator]

Hi Barry1955. Pariatal cell antibodies are no longer recommended as a test for PA (because of reliability issues).

However...

If you have a positve anti-IF antibodies test you definately have pernicious anaemia.

If you have neurological,symtpoms, go back...you need the right treatment...6 x loading doses then injections every other day until no further improvement, then eight weekly injections - though that's not enough for some people - but that's another story.

👍

[Gambit62 Administrator]

GPCA is no longer considered accurate enough as a test to be recommended for use per NICE or BCSH guidelines so bit confused by your GPs use of the article. Really not sure what his projections are about - unless he's saying that maintenance should be every 2 months based on your symptoms

Being positive for IFA is much more conclusive - a test that is prone to false negatives rather than one that is prone to false positives. IFA can give a false positive if done too soon after a B12 shot but assuming that wasn't the case with you as you would appear to still be waiting for loading shots.

Would suggest you ask your GP to clarify exactly what he meant and draw his/her attention to BCSH guidelines to look to treat on basis of symptoms if there is a discordance between these and test scores, particularly where these point to neurological involvement, and that there is a different protocol for loading doses where there is neurological involvement

[Gambit62 Administrator in reply to Gambit62]

think this is probably the article your GP was referring to

onlinelibrary.wiley.com/wol...

[Barry1955 in reply to Gambit62]

Thanks Gambit62 and Foggyme, I have an appointment tomorrow pm, was to originally get results of post loading dose re IFA and B12 levels. As previous test showed positive IFA , I don`t understand reference to Parietal Cell Antibodies ; most of us know its totally unreliable,

I have already started sourcing needles etc., to self inject as do not expect to get proper alternate day jabs after loading, until symptoms level out - but I am going to ask for them ( did he really read my printoits of protocols on treatment for PA with neuro symptoms ) ?

[clivealive Forum Support]

Good Golly Barry1955

"puts too much pressure on appointment availability".

I've been having B12 injections at my surgery every 4 weeks for 45 years and my nurses "love" me because I'm in and out in five minutes flat and it gives them a chance to catch up with the paper/screen work.

This is your life and well being for goodness sake.

Oh, by the way, do you know what your Folate level is as this needs to be healthy in order to process the B12 you are having injected

I hope you get the treatment you need.

[Barry1955 in reply to clivealive]

Hi Clivealive,

my folate was 5.5 ug/L back in October when original bloods showed up positive IFA.

Do not have a clue on current levels, but have been taking a multi vit & mineral tablet since start of `loading dose`

ATB

[clivealive Forum Support in reply to Barry1955]

without the range I don't know if your Folate is low or not. Best ask your GP for supplements if necsessary

[Bluedragon]

How do you feel about asking them to show you how to do injections and ask for the supplies to do them? They can do the first to ensure there is no reaction and then you can do as many as needed. Sell it to him that not taking up surgery time. I know it's not ideal but at a east you get what you need.

[Barry1955 in reply to Bluedragon]

Thanks bluedragon,

That was one of the options I am planning to raise if he refuses alternate day therapy, with last resort telling him I will have to buy from Germany.

ATB

Barry

[Polaris]

In view of the urgency of treating neurological symptoms, I find it shocking that appointment availability is given as an excuse when they are usually so keen (texts and emails) to push flu, pneumonia etc. vaccinations, even when it's plain you never want them.

[miglet54]

Probably don't get government bonus for giving B12. They do for lots of other unwanted treatments and box ticking duties.