Confused and unwell

[Petal13]

I was diagnosed by my late GP back in 1996 with PA, my practice nurse in November to,d me that my levels on my last blood test in 2015 were I. The range and that I did not need my B12 injection, I was too tired to argue so left it.Chrustmas I struggled and New Year I was unable to do many of the walks that we have previously done as my leg cramps and tiredness would not allow me to.I struggled through January with the permanent pins and needles increasing along with the cramps and constant tiredness unable to play Netball which did not help my mental state. I could not stand it anymore and saw my GP this week and said I wanted my B12 Injections re instated.she then told me that according to her electronic records going back to 2009 that there is no mention of me having PA! I explained that it was pre 1999 that I was diagnosed as having PA. She said because of my symptoms she would re introduce B12 but only 6 monthly!!! I know after 17 years and an emergency admission to hospital 6 years ago ( due to my workload I did not have my injection for over 4 months which caused the symptoms of suspected heart attack) That I cannot go this long what should I do? Do I write and complain to the Practice Manager or my GP . I did refer the Practice Nurse to PAS website but she dismissed me as she was the professional!

[clivealive Forum Support]

Oh Petal13 what a dilemma. Is there no possibility of getting hold of your original notes from before 2009? Surely there must be some record of you having regular B12 injections after 2009 up to last November! You wouldn't have been having them just for fun.

Have you had blood tests taken since November? They may show you B12 is a bit low and you also need to know what your Folate level is.

I'm not a medically qualified person but hopefully there is someone on here who can give you good advice.

I dread to think what I would say to a practice nurse who told me that they couldn't find my record of being diagnosed with P.A. in 1972 after 45 years. I doubt it could be repeated on here....

[Sleepybunny]

Hi,

Have you considered joining the PAS (Pernicious Anaemia society)?

pernicious-anaemia-society....

PAS tel no [phone]

There is an answerphone so messages can be left, may take a couple of days to get a response but you may be able to speak to the chair of PAS straight away.

They can sometimes intervene on behalf of members by writing letters. Links to stories about how PAS can help people who have had their injections stopped below.

martynhooper.com/2016/09/23...

martynhooper.com/2016/04/24...

The following UK B12 documents clearly state that PA treatment is for life. Has your GP seen these?

1) BNF Chapter 9 section 1.2

All UK GPs have access to the BNF. In fact your Gp probably has a copy sitting on their bookshelf.

evidence.nhs.uk/formulary/b...

2) "BSH Cobalamin and Folate Guidelines"

Info on UK B12 treatment is about a quarter through document. I'd recommend reading teh whole document.

b-s-h.org.uk/guidelines/ click on box that says "Diagnosis of B12 and Folate Deficiency" should be on page 3 of listed guidelines

Link to flowchart in BSH Cobalamin and Folate Guidelines which clearly states treatment should be lifelong for those with PA.

stichtingb12tekort.nl/weten...

3) Martyn Hooper, chair of PAS,has published a book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" which I think has details of current UK treatment. he's also written other books about PA and b12 deficiency

Writing letters to GP about b12 issues. perosnw ho runs website can be contacted by e-mail.

b12deficiency.info/b12-writ...

MPs

May also be worth speaking to your MP about lack of treatment

parliament.uk/mps-lords-and...

Medical Records

If your current GP is disputing you have PA, perhaps you could ask for a complete set of your paper medical records (not just a print out of online summary record). This may be rather expensive eg £50. Hopefully there might be something in there that confirms you have PA.

nhs.uk/NHSEngland/thenhs/re...

I am not a medic just a person who has struggled to get a diagnosis.

HDA patient care trust

Uk charity offers free second opinions on medicla diagnosesand treatment

hdapatientcaretrust.com/

[Gambit62 Administrator]

I would definitely write to the practice and complain about your treatment. Point them to the BCSH and NICE guidelines and detail the dates of your diagnosis.

I wouldn't mention referring the nurse to the PAS website though I'd have to edit my own post if I used the language that is going through my mind at the moment to describe the attitude of the practice nurse. Appealing to status is the last refuge of the insecure.

Levels in blood haven't been used as a guideline to when treatment is needed for some time now so the nurse is obviously totally out of touch with guidelines. Serum B12 is a poor guide to what is happening andonce you are on b12 shots it means nothing unless levels come back low.

if not a member of the PAS, join them, and contact them. they may be able to help if yhe response from the practise is unsatisfactory

[Janey121314]

agree wth Gambitz. The nurse is not an expert o your body.

[Petal13]

Thank you people I am a lifetime member of PAS joining pre 2006 and have not yet contacted them regarding this. Thought I'd throw it out there and it seems we are all in agreement. I have got an appt for my Injection on Monday and will see if my symptoms become under control,but I definitely cannot see me waiting for 6 months. I think I will write to the practice detailing events,especially after I ended up in Hospital .

It's nice to know there is a fantastic support network out there much appreciated I was feeling very low about the whole situation.

[MariLiz in reply to Petal13]

If you get nowhere with the practice, try your local MP. If the practice are failing to follow the guidelines, and you have already had an emergency admission to hospital because of a lack of injections, then a shake up is called for!

[Hillwoman]

I would think MP contact entirely justified in these circumstances, but I would see how intervention from PAS pans out first.

You have my sympathy Petal13. I'm in a very similar situation, but I decided two years ago to start treating myself.

[Sleepybunny]

Do I write and complain to the Practice Manager or my GP.....

Have you considered talking to CAB?

citizensadvice.org.uk/healt...

You mention pins and needels which is normally considered a neuro symptom. Inadequately treated b12 deficiency can lead to permanent neuro damage.

SACDSC

Some people have mentioned to their GPs that inadequate B12 treatment can potentially lead to SACDSC, sub acute combined degeneration of the spinal cord. I'm sure most GPs would not want to risk their patients developing this. Perhaps your GP is unaware of the potential complications of withdrawing injections from a PA patient.

There is an article on SACDSC in PAS library section on website , available to members.

pernicious-anaemia-society....

I believe some forum members have shown this to their GPs.

Martyn Hooper's blog has stories which mention SACDSC.

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

Think SACDSC is also mentioned in his book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

I gave a copy of this book to my GPs.

PoInt 1 in next this link may be relevant to you and maybe point 5?

b12deficiency.info/b12-writ...

b12deficiency.info/b12-writ...

Delay in receiving b12 can lead to SACDS

archive.is/hbPHE

ncbi.nlm.nih.gov/pubmed/191...

ncbi.nlm.nih.gov/pubmed/147...

I think Martyn Hooper's book "Living with Pernicious Anameia and B12 deficiency" has case studies that mention SACDSC as has the book "Could it Be B12" by Sally Pacholok and JJ. Stuart