What's the next step.: Morning all, Am... - Pernicious Anaemi...

Pernicious Anaemia Society
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What's the next step.

Moggie
Moggie

Morning all,

Am having to deal with a doctor I dont know or trust regarding my mums health and, although she has been prescribed iron injections, I would like some advice as to what to look out for and what to push for as far as testing it concerned.

A brief bit of history regarding my mum, who is 84.  She has Pagets disease of the head (extra bone growth causing deafness and pain) and two weekends ago she had a bad fall and ended up in hosp.  I then took matters into my own hands, as even though she had had thyroid tests come back "slightly over" she would not let me contact her doctor.  That all changed after her fall and I marched her down her GP's and, after ascertaining that her thyroid results where not "slightly over" but way over the BMA's recommended treatment range, I then went to work on getting her a raft of other tests (B12, Vitd, Folates, Ferritin and iron) and the upshot is that her B12 was 122 (range 180 - 914), her vitd was 13 (anything below 50 is deficient), her folates were 4 (no range given) but her iron and ferritin were fine.

She is now due to start B12 injections (2 a week for 3 weeks as a loading dose and then every three month), has started on thyroid medication as her levels had increased since the "slightly over" test and her TPO (antibody test) was positive.

As I know next to nothing about B12 and what to look out for (although I do know a lot about thyroid illness as I am a sufferer myself) could anyone please give me a guide as to what I am looking for regarding ongoing blood testing and anything else you feel I should be aware of. 

Thanks guys

Moggie x

7 Replies
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Hi,

There may be some useful info in following links.

UK b12 websites

b12deficiency.info/

pernicious-anaemia-society....

01656 769 717

Are you a member of the PAS? lifetime membership costs £20

The PAS are helpful and sympathetic.

b12d.org/

martynhooper.com/

Useful B12 books

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

Could it be B12?: An Epidemic of Misdiagnoses by Sally pacholok and JJ. Stuart

UK B12 documents

ukneqas-haematinics.org.uk/...

bmj.com/content/349/bmj.g5226

Google "BCSH Cobalamin and Folate guidelines"

Management section in link below has treatment info based on BNF (British National formulary) Chapter 9 section 1.2

patient.info/doctor/pernici...

Moggie
Moggie in reply to Sleepybunny

Thanks - I will look at all the links you sent but I was really after some "been there, done that" info as, in my book, there is nothing like info from people that have experienced it.

Moggie x

Moggie
Moggie in reply to Sleepybunny

Have found the pernicious society website very good thank you but the uknequas link does not work.  Will work my way through them but I am already confused as it is not as straight forward as just having B12 injections and blood tests is it??

Moggie x

Sleepybunny
Sleepybunny in reply to Moggie

ukneqas-haematinics.org.uk/...

Hopefully this works...

I agree its not simple. The PAS will normally respond within a few days if you leave a phone message.

My experience is that b12 deficiency is not always well understood by doctors and sometimes they are not up to date with recent info eg the "BCSH Cobalamin and Folate guidelines". It has taken me many years for medics to consider that b12 deficiency is part of my health issues. I think its good to read up as much as possible about b12 deficiency and recommended treatment.

Something I found out is that the NHS in a particular area may be using local B12 management guidelines which sometimes differ in guidance to the BNF and BCSH Cobalamin guidelines. Some of these local guidelines have not been updated for several years. Local guidelines may be found on local NHS website or an internet search.

Moggie
Moggie in reply to Sleepybunny

Thanks for that, will have a read and see what I make of it all.  Did all this with thyroid illness and can now hold my own with an GP or endo regarding my illness - which is why I knew which tests to ask for regarding my mum - but this is just as much a minefield.

Thanks for taking the trouble to answer, its appreciated.

Moggie x

If your mum had neurological symptoms eg poor balance causing fall, BCSH and BNF guidelines are alternate day injections until no further improvement then 2 monthly. This is rarely followed. I had a load of neurological symptoms and my GP was not going to treat me after falls. I often thought I might have ended up immobile if I had not been 40 and able to research and put my case. Your mum is very lucky to have you.

Moggie
Moggie in reply to Secondchance

Thanks for that - she is having 6 loading dose injections and then one every three months but if I dont see any improvement I will then go armed with your information regarding the guidelines and take it from there.  I agree that research and homework is vital with GP's as, left to their own devises, most would do the bare minimum if that.  It is criminal sometimes what they fail to do and it makes me frightened for my own old age.  I will have to pass on all my thyroid knowledge onto my daughter so that if I do go dotty she will be able to fight my corner.lol.

I dont think my mum considers herself lucky having me because at the moment all she thinks I am doing it bullying her into tests and treatments, as far as she is concerned she is falling because of her age.  Her balance is so bad that she is walking sideways!!!!!!

Thanks for all your help and pointers I will certainly be following the guideline thing up if I see no improvement in her balance.

Moggie x

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