Pernicious Anaemia Society
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Getting my ducks in a row ahead of GP appointment - NICE Guidance etc

Hi Guys

I was diagnosed B12 deficient in July with a result of 106 (198 or less being deficient) and given a high dose of iron tablets as my ferritin level was 8. I had 3 monthly injections (no loading injections) and gradually felt abit better by October with the tingling sensations largely going at that stage.

The tingling, dizziness and exhaustion are now back and I am returning again to my GP on Tuesday as I feel I need some sort of regular treatment, or at least the assurance I am on a 3 month maintenance cycle. As of November my B12 was at 400 and my ferritin 30 so my GP felt I wasn't ready for another injection despite symptoms coming back.

Does anyone have any links to NICE guidelines etc or any insight into what I should be saying to my GP? I believed that once you start treatment the readings are more or less academic as it's the symptoms that count, but anything official you could point me to would be much appreciated.

Wishing you all a symptom-free and happy Christmas. Many thanks.

Sozza

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In my experince (assuming your in uk) a GP basing on symptoms and being helpful with PA is incredibley rare...but they do exist...im told best thing is NICE guidlines and BNF (i think thats what its called there are others way more in the know on this here)

Ive had multiple doctors notes from old doctors and still its been a constant fight being labled hypercondriac and all sorts.... even after becoming unable to work or walk properly... personaly i wound up going to france and seeing Drs there with far better results (i hear germanys good too) but if course that should be a last resort!

People here a a fountain of advice and info or you could contact the people at PAS who are great for help

Good luck and im sure someone else will post soon enough with better advice :)

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The N.I.C.E Guidelines

Click on the link, then on "Scenario: Management" and scroll down Treatment for B12/Folate deficiency.

google.co.uk/url?sa=t&rct=j...

Have you had your Folate tested as B12 and Folate work together with your iron.

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Hi,

I've assumed you're in UK.

I found BSH Cobalamin and Folate Guidelines most useful.

BMJ B12 article

bmj.com/content/349/bmj.g5226

BSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines when PA and Antibody Negative PA can be diagnosed in UK. Flowchart makes it clear that people who are symptomatic for B12 deficiency should have an Intrinsic Factor Antibody test and start B12 treatment.

IFA test can help to diagnose PA. It is still possible to have PA even if IFA test result is negative/normal range (called Antibody Negative PA).

Have you had an IFA test?

BNF British National Formulary Chapter 9 Section 1.2

UK GPs will have access to BNF. Possible to get own copy.

bnf.nice.org.uk/drug/hydrox...

NICE guidelines B12 Deficiency

cks.nice.org.uk/anaemia-b12...

Before lining up your ducks, I'd suggest looking at/contacting the following...

1) PAS (Pernicious Anaemia Society) website

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717 answerphone

PAS can be busy so may not have resources to help non-members. Membership costs £20 for a year.

Useful symptoms checklist on PAS website plus lots of other PA and B12 info.

pernicious-anaemia-society.... See Checklist PDF on right of page

I ticked all my symptoms on checklist and gave a copy to my GPs plus added any symptoms not on list.

2) B12 Deficiency Info website

Useful section on writing letters about B12 deficiency to GPs plus lots of other B12 info.

b12deficiency.info/b12-writ...

Person who runs B12 Deficiency Info can be contacted by e-mail. Link on website.

3) Useful summary of mainly UK B12 documents in third pinned post. I read this before lining up my own ducks.....

More B12 info in pinned posts on this forum.

4) B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

I gave a copy of this book to my GPs.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency with lots of case studies.

5) B12 blogs

There may be stories relevant to you.

Martyn Hooper's blog about PA and B12 issues

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

"The tingling, dizziness and exhaustion"

Tingling and dizziness are usually considered to be neurological. NICE Guidelines suggest (also in BSH Cobalamin and Folate Guidelines) that doctors should seek advice from a haematologist for people with B12 deficiency who have neuro symptoms.

Has your GP contacted a haematologist?

UK B12 treatment for those without neuro symptoms is 6 B12 loading jabs over 2 weeks then a jab every 3 months.

For those with neuro symptoms it's a B12 loading jab every other day for as long as symptoms get better ( could mean loading jabs for weeks even months) then a jab every 2 months.

From reading your post , you appear to be on the treatment regime for those without neuro symptoms.

Has GP explained why you are not on the neurological treatment regime?

Neuro Consequences

I hope your GP is aware of the potential consequences of untreated or under treated B12 deficiency. Under treatment could lead to further deterioration including spinal problems.

PAS news item about neuro consequences of PA

pernicious-anaemia-society....

PAS leaflet about SACD, sub acute combined degeneration of the spinal cord available to PAS members.

pernicious-anaemia-society.... See page 2

Blog post that mentions SACD

martynhooper.com/2010/09/21...

I am not medically trained, just someone who has spent a long time trying to find out what is wrong with me.

Reply

Thank you so much for all your responses - I will work through all that you suggest over the next couple of days.

I'm in Guernsey in the Channel Islands and the GP's here basically follow UK guidance, although everything is private so I have the pleasure of paying £50 per GP visit and often come out having achieved little. Last time I left feeling like a hypochondriac so this time I'm actually going to say that I'm not booking appointments to pay £50 lightly.... I'm coming back because I'm feeling progressively worse.

My folate was 18.2 on the last blood test which I believe is ok.

My main issue is that after an initial improvement I know feel that I'm going backwards with no reassurance that I'm on a considered treatment path. I haven't been tested for IFA nor been referred to a haematologist. I did have an MRI because of all the tingling in my back but that came back ok.

Thanks again for your advice guys. I really appreciate it.

Stay well!

Sozza

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Personally I think the NICE guidelines are rather confused and confusing so would suggest referring your GP to the BCSH guidelines which are somewhat clearer - they can also be accessed via the BNF

onlinelibrary.wiley.com/doi...

- Sleepybunny provided a link , along with a link to the PAS website - particulary the area for medical professionals

pernicious-anaemia-society....

also this review article from the Blood journal

bloodjournal.org/content/bl...

Hope the appointment goes well

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