Hello everyone Newbie here

[john159]

Hi everybody not long joined want to say Hello to everyone. I'm 62 retired due to struggling with shift work. Suffering from short term memory loss so bad cannot do mental arithmetic now and in any conversation lose my train of thought. Since I retired I have been diagnosed with Sleep Apnoea, Psoriatic Arthritis, Asthma, Fatty Liver and Dry Eye syndrome. And here's me looking forward to retirement! I have lost about 12kgs so Liver Stiffness test at the Hospital came back normal, Inhaler has stopped my Asthma attacks, got a CPAP machine which has sorted my Apnoea.

I went on symptom checker on the Patient info website and it came back with possible B12 deficiency. I sent for a self test kit from Medichecks and it came back borderline active B12 at 39 and suggested I take their methylmalonic acid test but at £200 was too expensive. Went to see my GP he ordered some tests which came back normal (is borderline classed as normal in the NHS?)

Tried BetterYou Vit B Daily Oral spray 1200ug and that helped. Then tried AB Health&Wellness A B-12 Energy Patch 5000mcg and 400mcg Folic Acid . That didnt seem as good. Changed from once to twice a week and made me feel dizzy. Maybe it will take longer to become affective?

Just bought some Vitamin B12 Depot Hevert Ampullen, 100 pcs. Ampoules × 1 from Apohealth - Gesundheit aus der Apotheke. Very good service arrived in 2 days cost for delivery 5 euros. Better than a lot of UK firms. They did send the 2ml dose instead of the 1ml but not bothered about that.

Ordered all the needles syringes etc from Medbasic in Wakefield stuff never turned up and they never returned my emails so notified my credit card company and they are going to get my money back. Use at your peril.

Ordered from Medisave at the weekend order due here today. Very professional, free gift, constant updates about my order and give me hour slot from DPD when to be delivered. What a difference!

I will post an update on my first injection

Stay safe John

[Hidden]

Hi John welcome to the forum.You’ve been very proactive already so well done.You will gets lot of support and advice from our regular members here,they are so knowledgeable and kind. X

[wedgewood in reply to Hidden]

Welcome ! You’ve doing the best thing possible by joining PAS .O.K you have got the Hevert ampoules . I used them at first . They are excellent . They contain 1mg of Hydroxocobalamin, but in 2ml of saline . The ones I use now are the Rotexmedica which also contain 1mg of Hydroxocobalamin in 1ml of saline — so the same dose . Injections are undoubtedly the most efficacious. way to administer B12 if you have any queries , there is always someone who is pleased to help . Best wishes .

[john159 in reply to wedgewood]

Hi Wedgewood, thank you for the welcome. Any tips you can give been about injections the better. Always open to advice.

regards John

[Gildy]

Welcome! You are on the right track, John. I can relate to your story, especially the recently retired part. The goal is to get well so we can enjoy life! I did my first self injection(SI) this month. People here and on FB group are such a help. I watched SI you tube videos which were great. I mentally walked through the SI procedure before actually doing it, and it went very easily— I did intramuscular(IM) in my thigh. Wishing you well. Salud!

[Sleepybunny]

Hi,

I hope you see improvements soon.

Too many of us on this forum find that GPs are not as well informed about B12 deficiency as they could be.

Some links that may be of interest....

Link about "What to do next" if B12 deficiency suspected or newly diagnosed.

b12deficiency.info/what-to-...

The UK document below indicates that people who are symptomatic for B12 deficiency should be treated even if serum b12 is within normal range, in order to prevent neurological damage.

BSH Cobalamin and Folate Guidelines

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

Summary of above guidelines

pernicious-anaemia-society....

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF Hydroxycobalamin

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

NICE CKS

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

Each CCG/Health Board in UK will have its own local guidelines on treatment and diagnosis of B12 deficiency. May be worth tracking down the local guidelines for your area.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

cks.nice.org.uk/topics/anae...

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 5 is about being symptomatic for B12 deficiency with an in range B12 result.

Link has letter templates that people can base their own letters to GPs on.

If you think PA is a possibility, worth joining and talking to PAS.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

It is still possible to have PA with a negative result in IFA or PCA test but some doctors may not be aware that it is possible to have Antibody Negative PA.

NICE guidelines Coeliac Disease (UK document)

The guidelines suggest that patients with unexplained B12, folate or iron deficiency should be tested for coeliac disease.

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

Vital to get adequate treatment.

Untreated or under treated B12 deficiency can lead to permanent neurological damage.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

B12 article from Mayo Clinic in US

ncbi.nlm.nih.gov/pmc/articl...

Table 1 in above article is about frequent misconceptions about B12 deficiency.

Useful B12 books

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment info in this book is out of date. See BNF link in this reply for up to date info.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (US authors)

Very comprehensive with lots of case studies.

Films about PA and B12 deficiency

PAS conference 2019

pernicious-anaemia-society....

Films about b12 deficiency

b12deficiency.info/films/

I've written some very detailed replies with more B12 info eg causes of b12 deficiency, symptoms, B12 books, B12 articles, hints about how to deal with unhelpful GPs etc that you may find of interest.

See links below to a couple of them. I've written others as well which you might want to search for.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.