I'm new to all this

Hello, I'm a 35 year old bloke who's had trouble a year ago with stomach ulcers and acid reflux diesese. I'm taking proton pump inhibitors. The specialists said I had anaemia caused by this. But after nearly a year of struggling they have finally diagnosed me with pernicious anemia. I'm getting my B-12 jabs around 7-8 weeks. I do start getting confused and a bit off balance around 6 weeks. This is aĺl new to me and I'm a bit worried because of my age. Is there anything at all you could advise me with and what I should be doing? BecauseI really haven't got a clue. My old GP was awful and I've just changed. So I'm looking for a bit of advice

[Sleepybunny]

Hi,

Some links about PA and B12 deficiency that may be of use.

I am not medically trained.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

"I'm taking proton pump inhibitors. The specialists said I had anaemia caused by this"

pulsetoday.co.uk/clinical/c...

Any exposure to nitrous oxide?

gov.uk/drug-safety-update/n...

Checked for H Pylori infection?

patient.info/digestive-heal...

Any chance of internal parasites?

Fish tapeworm and Giardia Lamblia can lead to severe B12 deficiency.

Have you also been checked for Coeliac disease?

PA is an auto-immune disease. Having one auto-immune condition can increase the chance of developing others. I went gluten free which helped my gut symptoms ...I do not have a Coeliac diagnosis.

NICE guidelines Coeliac Disease (2015 version) suggests anyone with unexplained b12, folate or iron deficiency should be tested for Coeliac.

nice.org.uk/guidance/ng20/c...

Coeliac Blood Tests

coeliac.org.uk/coeliac-dise...

Thyroid problems?

Many on this forum also have thyroid issues. I suggest putting any thyroid results on Thyroid UK forum on HU. UK GPs often only test TSH which won't give a full picture of thyroid function.

Thyroid UK website

thyroiduk.org/tuk/testing/t...

"getting my B-12 jabs around 7-8 weeks. I do start getting confused and a bit off balance around 6 weeks"

Many on this forum find that standard NHS treatment is not enough for them and self treat with patches, sublingual lozenges and sprays and injections.

Did you have any loading injections at start of your treatment?

Recommended UK B12 treatment for patients without neuro symptoms is ...

6 B12 loading jabs followed by a jab every 2 or 3 months

Recommended UK B12 treatment for patients WITH neuro symptoms is ...

A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months.

If you didn't get recommended pattern of loading jabs at start, maybe GP woudl consider a second set of loading jabs?

As you're on jabs every 7 or 8 weeks, I'm assuming you have neurological symptoms, you mention balance issues.

With neuro symptoms, loading jabs should have been every other day until symptoms stopped improving. These every other day loading jabs could continue for weeks even months as long as symptoms still improve. I suspect some UK GPs/specialists do not continue these every other day jabs for as long as they could.

Some on forum use a symptoms diary to show how symptoms change over time. This could be evidence to GPs that symptoms return earlier than next jab.

BSH guidelines suggest a review after 3 weeks of every other day jabs.

See BNF, BSH, NICE CKS links below for more info on UK B12 treatment.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

BNF B12 treatment guidance changed recently.

pernicious-anaemia-society....

NICE CKS

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

B12 books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book does not mention recent BNF change.

"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 with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

Have you considered joining and talking to PAS?

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Offers support and info about PA.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

There may be one close to you.

pernicious-anaemia-society....

B12 Deficiency Info website

b12deficiency.info/

UK B12 Blogs

There may be stories on these blogs that are relevant to you.

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

What to do next if B12 deficiency suspected

b12deficiency.info/what-to-...

Blood tests

b12deficiency.info/b12-test...

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Iron Studies

labtestsonline.org.uk/tests...

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, access to PAS members only.

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

Blog post from Martyn Hooper's blog, mentions SACD

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

Referrals

Have you been referred to a neurologist as you mention balance problems?

Be prepared...

Some UK GPs and specialists' understanding of B12 deficiency is not as well developed as it could be, so be well prepared for any appointments with GPs or specialists.

Some on forum take a supportive person with them to appointments, even better if person has read about B12 deficiency.

More b12 info in pinned posts on this forum.

[wedgewood]

So many of us on this forum cannot manage on the amount of injections that the GP will give . I could not manage on 3 monthly injections, but my GP refused any extra , although I had numb feet caused by P.A. . I have to resort to weekly self -injections to keep symptoms at bay . If you get no help from your GP , you may want to S.I. If so, come back here for advice on how to go about this .

. Having PA can result in tummy problems as the anti bodies that accompany P.A. result in the pareital cells in the stomach being attacked . Result?— Low/ no stomach acid. ( Hypochlorhydria/ Achlorhydria) . This upsets the gut flora , causing pain and bloating . Probiotics may help this ( they work for me ) Taking Proton Pump Inhibitors will obviously affect B12 absorbtion . But as you now get injections , this will not be important regarding b12 . But , low stomach acid can lead to other nutrients being poorly absorbed . Low stomach acid can cause acid reflux , because the oesophageal sphincter does not get the message to stay closed shut if the acid content is low . Some people find acidic drinks help with this , or if it’s severely low , there are Hydrochloric acid capsules that could help( you can google to see how they can be used ) . I am not medically qualified.

I’ve had to find my own solution for treating my P.A. and the attendant tummy problems . I’ve managed to crack them by trial and error . I’m sure that you can too .Best wishes ..

[Catman1 in reply to wedgewood]

I agree with this. Now SI monthly which works for me