Help with blood results please

[Padeficiant12]

Please can someone help with my latest blood results please, i am awaiting results for instrisic factor and parratel cells tests! I feel awful ive laid on sofa all day, my joints ache i cant think properly, pins and needles and restless legs, memory problems, and lots of other symptoms, my levels are dropping since my doctor stopped my injections

[Foggyme Administrator]

Padeficiant12. Sorry but I don't have time for a long reply right now, so...swiftly...

I'm assuming that you haven't had your injections re-instated?

They should never have been stopped! And waiting until your levels drop below the ridiculously low 120 in their reference range and then stopping your injections once you creep over it again is stupidity beyond words. In the presence of neurolgical symptoms, it's also negligent (which they'd realise if they read the guidelines and the NEQAS Alert in the link below).

And as I said before, once injections have commenced (which yours did at one stage) 'normal' reference range no longer applies and trying to manage B12 deficiency vis serum B12 levels is a nonsense (see previous reply for better explanation and evidence).

Also - your GP should be aware that the IF test is negative in 40-60% of those with PA. So,you can test negative and still have PA. And PA is only one cause of B12 deficiency - there are many others (IBS, GI surgery, coeliac and Crohn's disease, certain drugs (metformin, PPI's etc.)...

Can I refer you back to the response I left in your,post from four months ago:

healthunlocked.com/pasoc/po...

Revisit my reply there (to refresh your memory) and follow up as advised with the GP you subsequently saw who you thought knew a little more about B12 deficiency.

You have neurolgical symptoms and it's important treat your B12 injections are re-commenced.

Here's a link to another document that might help - B12 Treatment Alert stating that treatment should be commenced immediately if neurolgical symptoms are present to prevent subacute degeneration of the splinal cord - even if B12 levels are within 'normal' limits (not sure if I left this one for you before).

archive.is/hbPHE (UK NEQAS ALERT: B12 False Normal Treatment Alert)

If you still can't get anywhere with a formal letter containing print outs of the evidence and guidelines suggest you join the Pernicious Anaemia Society and ask Martyn Hooper to interven on your behalf (details on the PAS website). He has been successful in getting treatment re-started for many people in your situation.

Also - is it possible for you to change to a new surgery (though no guarantees that it would perform any better. Sadly).

Please do chase this now because you do need those injections re-instating.

And seriously - the nurse practitioner in your surgery needs urgent training on PA and B12 deficiency - she's causing detriment and damage to 'her' patients. Furthmore, she will be giving her 'professional' advice to the GP's (yes, nurses do that) - and they will follow it...in the assumption she knows what she‘ talking about. Shameful.

Perhaps direct her to the PAS website and tell her that she can gain professional development credits for completing their quite short (but very effective) online PA and B12 deficiency course for medical professsionals 😉.

Good luck 👍

P.s. Vitamin D, folate look on the low side and ferritin levels look low too - edging towards iron defiance anaemia (though your GP may say that they're all okay because still within range 😐). (I feel very ill if my ferritin levels drop below 60). Low levels in all of these can make you feel quite ill (look up the symptoms of those deficiencies on the internet for more information. Also worth noting that these are potential signs of absorption issues...and they often go hand in hand with B12 issues too.

B12 level’s are meaningless because you've previously been on injections - but they are consistently dropping since your injections were stopped - not surprised about that!

[Padeficiant12 in reply to Foggyme]

Thankyou foggy for your help, its been a long hard struggle, im looking to move doctors, my daughter has just been diagnosed with b12 deficiency and her doctors couldnt believe my injections were stopped either

[Foggyme Administrator in reply to Padeficiant12]

A great to hear that her GP's seem to know what they’re doing. We hear far too many tales like yours - shocking. As are your GP,s (and that dreadful nurse practitioner).

Good luck finding a new GP...if it's not going to be quick, contact the PAS for swift action - via your current GP, cause I think you need it - and your jabs - swiftly.

👍

[Padeficiant12 in reply to Foggyme]

Yes i think im going to do that any way now while im waiting to see if i can change gp

[Foggyme Administrator in reply to Padeficiant12]

Forgot to say...you have to be a member of the PAS to access that service...but one year's membership is not expensive - details on their website 😉.

Also forgot to say, you should have loading doses again and then stay on every other day injections until no further improvement (because of,your neuro symptoms - needs intensive treatment. When you speak to Martyn, ask him to make that point to your GP's - 'cause they certainly won't know!

[Padeficiant12 in reply to Foggyme]

Yes i will do that, thankyou foggy im going too join the PAS now x

[lilymg]

The results are all normal...see top of page