Recently diagnosed with pernicious anaemia

[Tay10r]

Uk 49 yrs old ...over the years ive been back and forth to drs as been tired and and have been told iron deficient and taken tablets but july 23 after i visited drs and seen a nurse as i was severely lethargic and had jaundice she got me booked me into ambulatory care in hospital were I went every other day for 3 times for tests and a blood transfusion and the 3 b12 injections..and early August 23 I was diagnosed with PA I've now had my 6 loading doses and in Dec I get my 2nd.. 3monthly injections of hydroxocobalamin for life. I feel better in myself overall but there's still days when I have no energy and feel light headed .I suppose it will take time to get my b12 levels back

[Sleepybunny]

Hi Tay10r,

Welcome to the forum. I'm sure you'll find lots of support here.

I am going to post a lot of information. Might be best to read a bit every day over a week so it's not so overwhelming. It's possible that some links may have details that could be upsetting.

You might find it helpful to join and talk to PAS (Pernicious Anaemia society).

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has overseas members.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS membership is separate to membership of this forum.

pernicious-anaemia-society....

PAS support groups in UK

pernicious-anaemia-society....

Testing for PA

pernicious-anaemia-society....

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

b12deficiency.info/what-to-...

This popped out at me when I read your post.

"3monthly injections of hydroxocobalamin for life"

If you have neurological symptoms I would expect you to be on the treatment pattern "For people with neurological involvement" outlined in link below.

This is a B12 loading injection every other day until symptoms stop improving (could be weeks or even months of them) then a B12 injection every 2 months.

If you had 6 loading injections then a B12 injection every 3 months that is a pattern used for people without neuro symptoms.

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

The link above also discusses when people with B12 deficiency should be referred to a neurologist/haematologist/gastro-enterologist.

Neurological symptoms can include...

Tingling

pins and needles

numbness

twitching muscles,

limb jerks

tremors

migraine

memory problems

balance problems

clumsiness

....and many others

Have a look at the symptoms lists below and think about giving your GP a list of all your symptoms. Highlight any neuro/spinal symptoms. I used PAS list below and added extra symptoms at the bottom.

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

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

b12-institute.nl/en/symptom... ( from B12 Institute Netherlands)

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.

It's vital to get adequate treatment. Delayed or inadequate treatment can increase the risk of developing permanent neurological damage. In severe cases the spinal cord can be affected.

Unhappy with Treatment (UK info)?

How to write letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about under treatment of B12 deficiency with neuro symptoms present.

Link to thread about Patient Safety, has useful links for those in UK having difficult health experiences with B12 deficiency.

healthunlocked.com/pasoc/po...

If treatment is inadequate, may be worth discussing the risks of developing permanent neuro damage with GP.

PAS have a leaflet about SACD, sub acute combined degeneration of the spinal cord which might be worth passing to the GPs.

pernicious-anaemia-society....

Some UK forum members turn to treating themselves if NHS treatment is not enough.

Some get extra B12 injections from private GPs or beauty salons, some try high dose oral B12 (1000mcg or above) but this doesn't work for some people and some as a last resort turn to self injection (SI). There is a pinned post about this and some forum threads.

I will add more to this thread when I have time.

[Sleepybunny in reply to Sleepybunny]

Two useful B12 books

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

Martyn Hooper is the former chair of PAS (Pernicious Anaemia Society).

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

Very comprehensive with lots of case studies.

UK B12 documents

NHS article about B12 deficiency (simply written)

nhs.uk/conditions/vitamin-b...

BSH Cobalamin and Folate Guidelines

(detailed/aimed at health professionals)

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

BNF Hydroxocobalamin

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

NICE CKS B12 deficiency and Folate deficiency

Aimed at patients and health professionals.

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

NICE is developing new b12 deficiency guidelines. These should be published in 2024.

nice.org.uk/guidance/indeve...

[Sleepybunny in reply to Sleepybunny]

One thing I urge UK forum members to do is to find the local B12 deficiency guidelines used by their ICB (Integrated Care Board) in England or Health Board in Wales/Scotland as GPs are likely to refer to these for treatment guidance.

If you can't find them online or by searching forum threads here then best bet is to submit a FOI (Freedom of Information) request to ICB or Health Board asking which B12 deficiency guidelines they are using and for a link to or copy of them.

Some local B12 deficiency guidelines are not helpful. See Blog post below.

b12info.com/gloucestershire...

May also be useful to find ICB/Health Board guidelines for anaemia/macrocytic anaemia.

Many UK forum members have met health professionals with a poor understanding of B12 deficiency and PA.

I think it's helpful to know some of the common wrong ideas that they may have.

Misconceptions about a B12 deficiency

(From Dutch B12 website - units, ref ranges, treatment patterns may vary from UK)

stichtingb12tekort.nl/engli...

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

If your GP needs help, the following may be useful to point out to GP

1) PAS website has a page for health professionals. No charge for them to join PAS as associate members.

pernicious-anaemia-society....

2) Club B12 is a group of researchers and doctors who are looking into B12.

They have regular zoom meetings.

club-12.org/

3) useful article to pass to GP

B12 article from Mayo Clinic in US

Aimed at researchers and health professionals.

The Many Faces of Cobalamin (Vitamin B12) Deficiency

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

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

I'm not medically trained.

[Tay10r in reply to Sleepybunny]

Thank you so much for replying and giving me links to other sites about PA I'll take my time and check them out..

[Christine48]

If you have Pernicious anaemia the Nice guidelines say you should have 8 weekly injections for life or more regularly if symptoms persist. Go armed with them to your docs!

[Astridnova]

Do you take statins (anti-cholesterol medications)? They are now associated with high risk of peripheral neuritis and could be working against your B12 supplements.

[Tay10r in reply to Astridnova]

Take nothing else but b12 injections

[Astridnova in reply to Tay10r]

👍

[Source in reply to Astridnova]

Hello Astridnova,

Could you tell me please where you read/found the information about the statins. I’ve read about many pharmaceutical products impacting against B12 but the statins have bypassed me. It would be good to be able to read about the statins. It’s incredibly scary to know that they are ‘in the frame’ along with so many other drugs. This would impact quite a few people I know. (Mind you, whether they would listen is another story) However my son is 39 and the doctor is wanting to put him on statins and I was very concerned because I did wonder if this would be detrimental from the b12 perspective as well as other side effects that are known.

[HeartyGilly]

loading doses should continue until there is no further improvement according to NICE guidelines. I suggest they should continue on alternate days until then.