Specialist recommends b12 injections but GP refusing

[Lazarus1983]

Hi there,

I am hoping someone will be able to give me some advice. After much back and fourth with the GP, and being referred to the NHS CFS unit due to feeling so foggy headed, fatugued and lacking and various other symptoms, i decided to get some additional tests done for b12 via my private medical insurance. A

s expected my results came back as me being deficient in b12 and she recommended quarterly injections of b12. Whilst i was negative for intrinsic factor because of the other results she advised that pernicious anaemia could not be ruled out and this course of action should be taken.

my results are b12 - 181ng/l, normal serum ferritin level 97.3ug/l, negative intrinsic factor serology and gastric parietal cell serology and methyl masonic acid levels of 0.13 mol/l the specialist has then written 'these results do not exclude a diagnosis of pernicious anaemia.'

Unfortunately there was no option to get them done at the clinic i saw the haematologist at.

I have just called my GP, they were yet to receive the letter (even though sent over a week ago) but i read it over the phone and a bit of an argument happened as she said they were incredibly unlikely to give me these injections because of the intrinsic factor result. I am taking the letter to the doctors today to be scanned so it's on their system and trying to call again tomorrow or Friday. I don't know what to do in this situation. I clearly need this treatment - my b12 has gone down from the august test to the jan test, it's the recommendation of a specialist, but because i don't definitely have PA they are refusing.

they are also pushing back saying i should concentrate on the CFS unit and take the anti-depressants that i was prescribed by them. I don't want to go down the road of taking these tablets. Yes i am low but its an effect and not a cause i am absolutely sure of it. I'm seeing the CFS unit and cooperating with what they are asking - all but the anti-depressants and now that its clear from the test result that i need these injections, they aren't helping.

I don't know what to do... I think i'll need to try my docs again when they have the letter - who have no doubt written i am being difficult in the notes, but if they then don't cooperate i don't know what my rights are - or if i'll need to be referred again or have to pay for the injections privately, write and speak to the specialist etc.

I thought i had finally made some progress and now this happens. Has anyone been in a similar situation, can anyone help? I will pay if i have to, i'm just not really in that great a financial position to do this.

Thanks so much for your advice and support as always.

[Barry1955]

Hi Lazarus 1983,

I was referred to the chronic fatigue clinic about 10 years ago, and they could not find a reason for my constant lack of energy. I put it down to side effects of my Heart Meds.

Last November was diagnosed with P.A. after my yearly Heart Disease Clinic Blood Test showed positive IFA and PCA, but a `normal` B12 of 340.

Have you got a copy of your blood test to post on forum ?

Do you have neurological symptoms ?

Are you vegan/vegetarian ?

Just because you IFA test came back negative DOES NOT rule out P.A., as the test is 40% incorrect in negative results, and you could well show positive in another test.

I have had to start self injecting because even with a positive PA diagnosis, my GP`s will not treat me as per guidelines. I have already seen a big improvement in symptoms over the last month of alternate day jabs.

If your low B12 level is due to diet, you could try high dose tablets, sublingual spray, lozenges to see if they boost your level.

If you have to go down the self treatment route( like many of us here ) it is not difficult to source the required products, and if you can post your blood results there are some great people on this forum who can advise you much better than eslf taught me.

ATB

Barry

[Lazarus1983 in reply to Barry1955]

Hi Barry, thanks for your response. Really nice and helpful of you.

I'm not vegan or Veggie and i eat well with a lot of B12. I'm reluctant to use tablets, sprays or supplements until i get a final answer on this and especially if i then have to be re-tested or whatever the GP is going to say. But i will look into all these along with self injecting if i don't get any help from an alternative GP and the specialist can't administer. i knew i would come uo against issues - i just feel that its battle after battle and you've obviously experienced this too.

my results are b12 - 181ng/l, normal serum ferritin level 97.3ug/l, negative intrinsic factor serology and gastric parietal cell serology and methyl masonic acid levels of 0.13 mol/l the specialist has then written 'these results do not exclude a diagnosis of pernicious anaemia.'

and then she recommended 3 monthly b12 injections, with me writing to her after 3 but then she has discharged me (as she thought the GP would give them to me) and now they are saying they won't give them to me....

I know these results are better than a lot of people on here but i am 33 and i used to have a great memory and concentration but for the past couple years - it's been awful and is getting worse and worse. My energy levels are so low, i struggle to do things, i struggle to concentrate, i have rigged nails, pains in hands etc...

Hopefully another GP will help.. Or i will have to maybe write back to specialist or self administer.

Thanks for taking the time to reply

[taka Administrator]

Maybe give your GPs a copy of the "Guidelines for the diagnosis and treatment of cobalamin and folate deficiencies" at the same time as your letter? pernicious-anaemia-society....

Page 501: "Patients negative for IFAB, with no other causes of deficiency, may still have pernicious anaemia and should be treated as anti-IFAB-negative pernicious anaemia. Lifelong therapy should be continued in the presence of an objective clinical response (Grade 2A)" The flow chart in fig 1 summarises this nicely too!

Your specialist is correct that pernicious anaemia cannot be ruled out as the anti-IF antibody test is not great. It sounds like your GP needs to read up on B12 def and having the guidelines handily with the letter would make it very easy for them to learn more and that they need to treat you asap!!

[Lazarus1983 in reply to taka]

thank you so much.

I had to give the letter to the receptionist as its a weird appointment system there! you have to speak with the doctor on the phone before they see you...they didn't take the guidelines but will mention them friday when i ask to speak to a different doctor. I'm not hopeful though. they think i'm being difficult not taking the antibiotics and 'going over their head' and getting additional tests.

My test results were -

my results are b12 - 181ng/l, normal serum ferritin level 97.3ug/l, negative intrinsic factor serology and gastric parietal cell serology and methyl masonic acid levels of 0.13 mol/l the specialist has then written 'these results do not exclude a diagnosis of pernicious anaemia.'

My B12 was 230 in august so its gone down too - and i just want to feel well. i don't want to cause trouble - just get better.

[taka Administrator in reply to Lazarus1983]

Take the guidelines with you with the relevant bits marked in that case maybe? Fingers crossed the other doc will be more open to treating you!

[clivealive Forum Support]

Have you thought to join the Pernicious Anaemia Society? It costs £20.00 for a year's membership and they may intervene with your doctor on your behalf.

[Lazarus1983 in reply to clivealive]

Hi clivealive yes i'm a member. i didn't know they could do that. i may ask them for advice if i don't get any joy from another GP at the practice on Friday. It's just horrible feeling so stuck