Depleted B12 after surgery: Hi All I... - Pernicious Anaemi...

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Depleted B12 after surgery

LizWilsonpa profile image
9 Replies

Hi All

I had surgery in July 2018 - a long operation with lots of antibiotics (mainly removal of a breast lump - thankfully benign). I have since struggled with post-operative fatigue - cutting my hours of work from full-time to 20 hours, and finding it difficult to go out socially.

I've had B12 injections monthly since 2015. When my surgery refused my B12 injection in March I was shocked how quickly I developed neurological symptoms and realised that my B12 levels must have been very low. The surgery's nurse responded to my concerns and taught me to self-inject (thanks to all who gave me advice on here as it gave me the courage to have a go). I decided to give myself 5 loading injections - and I'm well! It honestly feels like a bit of a miracle.

I've looked online but I'm not finding much out about what could have triggered the B12 depletion. I have read that there's a link with nitrous oxide but only odd snippets and I don't know if that was used in the unaesthetic. Also wondering about the antibiotics.

I first had surgery for the same reason in 2005 and wonder if I have struggled with low B12 since then (though told all mums are tired!). I would like to know more in case I need to have surgery in the future.

Thanks, Liz

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LizWilsonpa profile image
LizWilsonpa

*anaesthetic - typo!

Nackapan profile image
Nackapan

I've stopped searching for reasons recently.

I would concentrate on getting the treatment yoh need.

All the operations s will of course have taken thete toll on your body.

Anaesthetic would've affected tiy tok.

Naturally with age you can absorb less b12 from food.

Stress eats b12.

So probably a combination.

Is monthly enough.

Some need a higher frequency.

So glad your surgery were sensible.

Also that you are well!!

With more b12

LizWilsonpa profile image
LizWilsonpa in reply toNackapan

Thanks - I think I'm more aware of my symptoms now so carrying on with more frequent injections for now whilst I feel I need them. Liz

Sleepybunny profile image
Sleepybunny

Hi,

A link about nitrous oxide

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

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Have you been tested for PA?

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....

Meetings cancelled during pandemic.

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

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.

Both these tests can be unreliable.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

Tested for Coeliac Disease

In UK, two first line tests are recommended.

1) tTG IgA

2) Total IgA

If you were tested in the past

1) Did GP order both tests above?

2) Were you told to eat plenty of gluten in more than one meal per day for several weeks before blood collected?

If you didn't have both tests and/or weren't told to eat plenty og gluten then it's possible that a negative result is not reliable. See both links below.

NICE guidelines Coeliac Disease (UK document)

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

Coeliac Blood Tests

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

H Pylori infection?

patient.info/digestive-heal...

Any chance of internal parasites eg fish tapeworm or Giardia Lamblia?

There are other possible parasites that can lead to B12 deficiency.

I wrote a very detailed reply on another forum thread with links to symptoms lists, causes of b12 deficiency, info about PA tests, B12 books, B12 websites, UK B12 documents and other B12 info which you might find helpful.

healthunlocked.com/pasoc/po...

I am not medically trained.

In UK, many on forum have had injections stopped/delayed/frequency reduced or swapped for oral tablets.

Have you considered challenging your GPs decision?

I've assumed you're in UK.

I copied some of the info below from a reply I left on another thread.

Have you considered joining PAS (Pernicious Anaemia Society?

They should be able to pass on useful info.

There are useful leaflets/articles that PAS members can access in library section on PAS website eg "Treatment is for Life"

pernicious-anaemia-society....

Concerns about Treatment

Have you also considered putting any concerns about treatment into a brief, polite letter to GP?

In UK, letters to GP are supposed to be filed with medical notes. Letters could contain symptoms, test results, personal and family medical history, extracts from UK B12 documents/articles, info from PAS etc.

Keep copies of any letters written. It is useful to have a paper trail in case there is a need to complain in the future.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in above link is about under treatment of B12 deficiency with neuro symptoms.

Make sure your GP knows about any neurological symptoms you have.

CAB NHS Complaints

citizensadvice.org.uk/healt...

MPs

May be worth informing local MP of any difficulties in getting treatment and contacting AMs in Wales, MSPs in Scotland and MLAs in Northern Ireland.

People whose injections have been stopped/delayed may want to think about drawing GPs attention to the potential for permanent neurological damage if a person is under treated.

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.

If people start to suffer deterioration in symptoms due to injections being stopped/delayed/swapped for oral tablets I think it is important to keep GP informed.

If I need to do this I will be writing brief letters informing GP of any increase in/return of symptoms.

Impact of Pandemic

Unfortunately this is an extremely hard time to argue for reinstatement of injections.

Many on forum have had B12 injection stopped/delayed or swapped for oral tablets during Covid crisis.

Many on this forum have been put in a situation where they have no alternative but to source their own supplies and self inject.

Injections stopped due to pandemic

Have a look at these two links which both have ideas on what to do if jabs cancelled because they are seen as non essential during pandemic.

From PAS website

pernicious-anaemia-society....

There are lots of comments under the posts as well.

From B12 Deficiency Info website

b12deficiency.info/blog/202...

Blog post below asks for people to leave comments if their injections have been stopped due to impact of pandemic.

b12deficiency.info/blog/202...

Most recent blog posts/news items about stopped injections

From 1st April

b12deficiency.info/blog/202...

PAS statement published 11th April

pernicious-anaemia-society....

Blog post about Covid crisis from B12 Deficiency Info from 18th April

b12deficiency.info/blog/202...

Blog post about e-mail campaign from B12 Deficiency Info from 19th April

b12deficiency.info/blog/202...

BSH guidance

If you're in UK, be aware that the British Society of Haematology (BSH) has issued advice about B12 treatment for doctors to use during pandemic.

PAS news item about BSH advice published 25th April

pernicious-anaemia-society....

Latest version of the BSH advice for GPs etc during pandemic.

Be warned that your GP may not know that BSH have revised their advice within last few days and they may be using an earlier version.

b-s-h.org.uk/about-us/news/...

Click on General Haematology tab in link above

then

Click on BSH Advice on Supplements tab

I think long term that some UK forum members will struggle to get their jabs reinstated after pandemic has ended.

There are moves afoot in some areas of UK to make a permanent change to oral tablets.

See link to another forum thread below about treatment in Gloucestershire.

healthunlocked.com/pasoc/po...

Alternative B12 treatment

Some people get injections from private GPs and some find that high strength oral b12 eg tablets, sub lingual lozenges, sprays, drops help a bit. I think most people on here find that injections are more effective than other methods. Some on forum source their own supplies and self inject.

At the moment, GP surgeries may argue that these are exceptional times and they cannot offer injections at the surgery. Some on forum have asked their GP surgery if they can be taught to self inject.

WHO (World Health Organisation) classifies B12 as an essential medicine so in my mind, people should not be denied treatment.

B12 article from Mayo Clinic

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

Suggests

1) No proof that oral b12 is a good at treating B12 deficiency as B12 injections

2) Many current diagnostic tests eg serum b12, active B12, MMA, Homocysteine, are not totally reliable

3) Successful treatment should not be stopped

Symptoms Diary

I think it's worth keeping a daily symptoms diary which tracks changes in symptoms over time and when any treatment is given. It could be useful evidence of deterioration ( or improvement) in symptoms that could be shown/copied to GP if necessary.

LizWilsonpa profile image
LizWilsonpa in reply toSleepybunny

Many thanks. I've relied on your posts many times through this journey. It's great that you provide such support as it's been difficult. I hadn't seen the gov.uk link - very helpful. I am a member of the PA Society but as with many didn't have the proper tests at the beginning so no idea about my diagnosis - it's not likely to be dietary and I haven't had any of the other treatments associated. Seeing the information you provide I will go back and remind myself of things I haven't revisited since first finding out about my B12 deficiency - helpful to keep informed. Thanks again. Liz

waveylines profile image
waveylines

There is definately a link between b12 depletion and some anaesthetics. When I had surgery due to a lump, sadly not benign, I was told by the surgeon that they dont use nitrous oxide very often these days. You should make sure your dentist is aware too.

Its not really known why some people loose the ability to retain B12 more frequently than others, anymore known why some need to inject more frequently. Its certainly the case that as we age we become less able to absorb b12, often due to a drop in acidity in tummies.

LizWilsonpa profile image
LizWilsonpa in reply towaveylines

Thanks - this is helpful to know, I'll mention it to the dentist also. I hope you have recovered well - very difficult thing to go through. Liz

LizWilsonpa profile image
LizWilsonpa

Thanks - have asked the hospital for info about what was used thought they did know I have a B12 deficiency so maybe it wasn't nitrous oxide. Useful to have this feedback as I may need surgery again in future. Liz

waveylines profile image
waveylines

Thanks Liz. Wish you well on your journey to recovered health.

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