At last I have copies of my test results!!

[Icymind]

I finally got copies of my test results! If anyone has got time over the next few days would you mind taking a look 👀 I would be extremely greatful. I have a doctors appointment next week for my last plea for injections failing that I have an order on the way from Germany 🇩🇪!

Serum B12 108 ng/L (150-750)

Intrinsic factor ab - NEG

Serum Ferritin 204 ug/L (22-322)

Serum Folate 4.1 ug/L (>4.0)

Serum total vit D 34.7 nmol/L (>50)

ESR 71 mm/h (1-20)

RBC 4.49 (3.5-5.5)

There's loads more! If I've missed any that link to anything else!! Also don't know if it helps I'm 34 female and I've had my gallbladder removed! X

[Sleepybunny]

Hi,

I wrote some long replies on your previous threads. Has your Gp seen a copy of pages 8 and 29 from the BCSH Cobalamin and Folate Guidelines?

[Icymind in reply to Sleepybunny]

Morning Sleepy yes the last one has copies of everything! She wasn't interested. I'm seeing my dr that has been on maternity next week and taking everything again so fingers crossed.

[Sleepybunny in reply to Icymind]

Good luck with your next appt. Is it worth talking to PAS before the appt?

[fbirder]

Lemme see if I've got this right. You have a B12 level of 108 ng/L - way below the lower end of 'normal' yet your doctor won't treat you!

Unbelievable!

I'll bet I know why as well. They're one of those idiots who hears 'Pernicious Anaemia' and only concentrates on the second word, totally ignoring the first (and probably not even knowing what it means - deadly). They will look at your MCV (mean cell volume) and see that your cells aren't enlarged - so you can't have macrocytic anaemia - so you can't have PA. Except that they haven't read p.3 of the BCSH guidelines where it says...

Neurological presentation (peripheral neuropathy, sub-acute combined degeneration of the cord) may occur in the absence of haematological changes, and early treatment is essential to avoid permanent neurological disability

[Icymind in reply to fbirder]

You are spot on and almost quoted her thank you for you reply

[fbirder in reply to Icymind]

OH, I forgot. She probably thinks a negative IFAB test means you haven't got PA. p7 of the BCSH guidelines -

IFAB is positive in 40-60% of cases(Ungar 1967) i.e. low sensitivity, and the finding of a negative intrinsic factor antibody assay does not therefore rule out pernicious anaemia (hereafter referred to as AbNegPA).

[Pixielula]

Your b12 is very low and you should be getting your loading doses, why are you having to plea for injections when your b12 is way below the reference range....

[Icymind in reply to Pixielula]

Because she seems to view it as just a little lacking in vitamins and take these supplements all will be sorted. She's not bothered why I'm deficient it's not through diet etc so let's hope my usual dr has a bit more sense.

[Foggyme Administrator]

Hi Icymind. Agree wholeheartedly with fbirder. This is just disgraceful.

You need treatment with B12 injections, and you need it now.

Please be aware that if you have neurological symptoms, you need 6 X loading doses given every other day, then 1mg Hydroxocobalamin every other day until no further improvement (this could be for many months) then 1mg Hydroxocobalamin every eight weeks (though this is not enough for some people- but that's another story. Most GP's do not know about this neurological regime of treatment so you may have to point it out!

Information about it is contained in the pinned posts and in something called the Britsih National Formulary (BNF), the doctor's prescribing bible. Your GP will have a copy on the desk sos hold look it up while you're there. It's the second item down so they'll probably have to read further than they usually do 😖.

If you do have neurological symptoms, it's important that you are treated with this regime since undertreatment at this stage can result in possibly irreversible neurological symptoms. I say this not to frighten you, but so that you are forewarned and have the tools to deal with your GP, if necessary.

If you belong to the PAS, there's an information leaflet on sub-acute combined degeneration of the spinal cord - or you could look it up on the Internet. Might be worth also showing this to your ill-informed GP if you struggle to get the neurological regime (if needed). Or indeed if he still refuses to treat you.

I also not that your folate is very low (though your GP probably thinks it's normal). B12 and folate work togetherness so so,if folate is as low as yours, then you body might not be able to utilise the B12 properly. So folate needs to be in the top third of the reference range.

But here's an important point. Your GP should not give you folate without first addressing your B12 deficiency. This can cause neurological damage and also mask the B12 deficiency - which is then left u treated. So, B12 injection first and then start folate supplementation 24 hours later.

If your GP has already prescribed folate, and no B12, this is wrong and could be doing harm - so you would need to go back and discuss as quickly as possible.

I assume that the vitamin D deficiency is being addresses.

Again, and as fbirder says, this is unbelievable. I can't imagine why your GP is choosing to ignore your B12 result. You are very deficient and I should imagine you feel very ill indeed.

Really hope you manage to get your GP to act. And soon. Please let us know how you get on. And many people here to help if further support needed.

Take care X

P.s. Excuse me if I'm simply repeating information you've been given before - haven't the time right now to look back at any of your previous posts 😀