Pernicious Anaemia

[SarahFerguson]

I've was diagnosed with PA 3 years ago, gp started loading jabs according to NHS guidelines then I was having jabs every 4 weeks for a year then went to every 8 weeks as gp wanted to stretch it out. Now I'm told that after my gp has retired I have to go in for a review-I'm guessing they will want to stretch it to 3 months now-I won't cope with that! Worried and now thinking of going down the private route or self injecting. I had neurological damage when diagnosed- in the guideline British medical journal it does say that if neurological damage b12 should be every 8 weeks. Anyone got any adv, seeing Gp on 25 Jan. TIA

Sarah

[clivealive Forum Support]

Hi SarahFerguson Your "new" doctor should adhere to the guideline paragraph which reads:

The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement, then 1 mg every 2 months.

Do you know what your Folate level is as this is essential to process B12?

I wish you well and a successful appointment.

[SarahFerguson in reply to clivealive]

Thank you Clive. My folate was low at time of diagnosis not sure what level thou. I'm assuming that neurological symptom they mean shaking and brain fog etc.

[clivealive Forum Support in reply to SarahFerguson]

1 Pernicious Anaemia - Symptoms

1.1 General Symptoms

The following general symptoms are common in those with PA:

 The Strange Tiredness

 Fog days, where you have difficulty in thinking clearly

 Weakness

 Fatigue

 Upset stomach

 Abnormally rapid heartbeat (tachycardia) and/or chest pains

 Abnormal yellow colouration of the skin (jaundice)

 Heightened sensitivity to hearing, smell, and taste

 Vision distortion, e.g. seeing stars, or double vision

 Breathlessness

 Headache

 Cankers (ulcers) in the mouth

 Sleep disorders

 Intolerance to loud sounds, flashing lights

 Intolerance to crowded malls (needing personal space)

 Tinnitus – ringing in ears

1.2 Neurological Symptoms

The neurological symptoms of vitamin B12 deficiency may include:

 Numbness and tingling of the arms and more commonly the legs

 Difficulty walking

 Loss of balance

 Hands feel gloved with loss of sensitivity

 Loss of vibration sense, having to look down to see where you are walking

 Unable to close your eyes and stand on one foot

 Night vision

 Memory loss

 Disorientation

 Dementia

 Extreme mood changes

 Short term memory loss

Some experience many of these symptoms and some none of them. It depends on how quickly the PA is treated and on how well managed it is.

1.3 Gastrointestinal Symptoms

The gastrointestinal symptoms of vitamin B12 deficiency may include:

 A sore tongue

 Appetite loss

 Diarrhoea and/or constipation

 Stomach pain

[SarahFerguson in reply to clivealive]

Thank you. I do have quite a few of the neurological symptoms-I m guessing I was in diagnosed for at least 6/7 years.

[clivealive Forum Support in reply to SarahFerguson]

It might be worth getting your Folate level checked again if you haven't been supplementing with folic acid.

I've had P.A. for 45 years and I'm still "clivealive" at 75.

[SarahFerguson in reply to clivealive]

Wow Clive just read your story. I find it staggering that the GP's don't know a lot about how we feel on a day to day basis. I'm only 46 obviously quite young to be dignosed, I've also got vitilgo, however, there is a family history on my Dads side - he had duodenum stomach ulcer. I have two sons one has gone thru some tests as he's having stomach problems aged 18. He's had an endoscopy test just before Xmas but all they said was he had some inflammation on stomach lining and is taking ppi as treatment omeperazole I'm not convinced! All his blood tests have come back satisfactory but on the low end of satisfactory, not sure now what to do for him. He's taking buscopan and ranitidine to elevate symptoms at the mo.

[clivealive Forum Support in reply to SarahFerguson]

Sadly, long term usage of PPIs may cause B12 absorption problems for your son.

[Sleepybunny]

more B12 deficiency symptoms lists

pernicious-anaemia-society.... i gave Gp a copy of PAS checklist with all my symptoms ticked.

b12d.org/admin/healthcheck/...

B12 info

1) "BSH Cobalamin and Folate Guidelines" These Uk guidelines came out in 2014 but some Gps may not have read them. Info on UK B12 treatment is about a quarter through document.

b-s-h.org.uk/guidelines/ click on box that syas "Diagnosis of B12 and Folate deficiency" should be on page 3 or put "cobalamin and folate guidelines" in search box.

Link to flowchart in BSh Cobalamin guidelines

stichtingb12tekort.nl/weten...

2) Pinned posts on this forum. I found fbirder 's summary of B12 documents very useful when faced with medics who haven't done their homework on B12. link to his summary in third pinned post (last link in list)

3) BMJ B12 article

bmj.com/content/349/bmj.g5226

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

5) Book "Could it be b12" by Sally Pacholok and JJ. Stuart

6) PAS

the PAS can sometimes intervene on behalf of members by writing letters.

pernicious-anaemia-society....

PAS tel no [phone]

martynhooper.com/

7) B12 Deficiency Info website

has interesting blog on website

b12deficiency.info/

8) b12d.org

b12d.org/

unhappy with treatment?

b12deficiency.info/b12-writ...

citizensadvice.org.uk/healt...

HDA patient care trust

A Uk charity that offers free second opinions on diagnoses and treatment.

hdapatientcaretrust.com/

[SarahFerguson in reply to Sleepybunny]

Thank you. Glad I've found this support. X

[Marymary7]

articles.mercola.com/sites/...

Proton pump inhibitors are the worse. A self perpetuating drug too.

[SarahFerguson in reply to Marymary7]

Hi Mary, he's stopped taking omperazole as he doesn't think they are helping the symptoms. He's taking buscopan is this a PPI?

[SarahFerguson in reply to SarahFerguson]

Thank you.

[Marymary7]

No it's not a PPI, it's an antispasmodic treatment. I don't know much about those but the link I gave u above has a lot of info on there and Dr Mercola is excellent.