Help with PA and boosting energy.

[Rowcocks]

Hi,

My partner has Hydroxocobalamin every 6 weeks, rotating with nhs and private.

What other vitamins/ supplements can she take to boost the effectiveness?

She is tired allot.

Thanks

[Nackapan]

Best to go by bloods results.Get done full loads done.

Including:

Folate

Ferritin

Iron

Vitamin E

Thyroid check

If there's levels are okay

Consider upping the b12 injection frequency.

Depends how long you've been diagnosed with PA or a b12 absorption problem.

Also if other health issues going on.

I recluse its hard to penetrate the gp service but get seen.

A supermarket mulitivut is good A-z

Get thr bloods done first.

[Rowcocks in reply to Nackapan]

Thanks for your help

[Sleepybunny]

Hi,

I am very pleased that your wife has a supportive partner.

I wondered if she needed B12 more often if an injection every 6 weeks is not enough for her.

Has she also got recent results for folate, ferritin (or other iron tests) and Vitamin D as forum members commonly report deficiencies in these as well as B12.

How long has she been getting injections?

Some people take a long time to start showing improvement especially if they've been ill for a long period.

Some people may experience a drop in potassium levels when treatment starts so if she's only recently started treatment maybe she could ask GP to check her potassium levels.

Some UK forum members resort to self treatment as a last resort if NHS treatment is not enough.

There are forum members who need B12 injections monthly, weekly or even daily to keep symptoms at bay.

Some forum members supplement with high dose oral b12 between injections eg 1000mcg B12 although some report that oral B12 treatment is ineffective.

Does she have any neuro symptoms?

BNF link below outlines two patterns of treatment in UK

1) for those without neuro symptoms

2) for those WITH neuro symptoms

BNF Hydroxocobalamin

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

If she has neuro symptoms or had neuro symptoms prior to treatment starting then my understanding is that she should be on the treatment pattern for those with "neurological involvement"

I'm assuming she is on an NHS injection every 12 weeks.

Whether or not she has neuro symptoms, BNF says maintenance injections can be every 2 months.

How many loading injections did she have at the start of her treatment?

I'm guessing she had 6 over two weeks.

If she had or has neuro symptoms, BNF suggests

a loading injection every other day for as long as symptoms continue to improve then a maintenance injection every 2 months

There is no set time limit as to how long every other day loading injections can continue for if patient has neuro symptoms.

It could be weeks or even months of them.

GPs may not be aware that there is a different pattern of treatment recommended for those with neuro symptoms so someone may need to point it out to them.

If she has neuro symptoms and was not given the recommended BNF pattern of loading injections then perhaps she could ask for loading injections to be restarted.

I think putting queries about treatment/diagnosis is more likely to be successful if put in a letter as harder to ignore (in my opinion).

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Link above has letter templates.

Point 1 in above link is about being under treated for b12 deficiency with neuro symptoms present.

Letters avoid face to face confrontation with GP and allow patient time to express their concerns effectively.

Best to keep letters as brief, to the point and polite as possible.

Keep copies of any letters/communication sent or received in case needed in the future.

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

b12deficiency.info/what-to-...

PAS can offer support and pass on useful info.

Membership of PAS is separate to membership of this forum.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PAS support groups in UK

pernicious-anaemia-society....

PAS is hoping that face to face meetings will start again soon.

PAS has useful leaflets and a page for health professionals that her GP may find useful.

pernicious-anaemia-society....

pernicious-anaemia-society....

UK B12 documents

NHS article about B12 deficiency and folate deficiency (simply written)

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

BSH Cobalamin and Folate Guidelines (aimed at health professionals)

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

Summary of BSH Cobalamin and Folate Guidelines (main points from above)

pernicious-anaemia-society....

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

NICE CKS B12 deficiency and folate deficiency

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

There are currently new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. These should be published in 2023.

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

If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages).

Local B12 deficiency guidelines

Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Might be worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.

Some local guidelines have been posted on forum so try a search of forum posts using terms "local guidelines" or try an internet search using "name of CCG/Health Board B12 deficiency guidelines" or submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.

See blog post below if you want to know why I suggest that UK forum members should find their local guidelines.

b12deficiency.info/gloucest...

Thyroid

It's quite common for people on this forum to also have thyroid issues and thyroid issues can lead to fatigue.

I suggest she puts any thyroid results she has on Thyroid UK forum on HU.

In UK, GPs often only test TSH which won't give a full picture of thyroid function.

There are other thyroid tests a GP or specialist can order.

Thyroid tests

thyroiduk.org/getting-a-dia...

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books and films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

I am not medically trained.