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
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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.
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.
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.
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.
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.
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.
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.
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
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.
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
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