Pernicious Anaemia Society
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After my 7 page letter

So, I spoke with the practice manager this morning following on from my 7 page letter. She has booked me in for a review with senior doctor next weds for half an hour. Whilst we were talking she stated that it is practice to have blood tests even if you are on b12 for life. Is this the case? The levels would always be higher because of the injections, surely. I want to make sure I go in armed with enough information so I can get injections re- instated. I think I will have to own up to the 2 self injections esp if they say that I need another blood test. I haven't really taken to the self injections because I was nearly physically sick and on verge of passing out on the 2nd- so I would rather get them reinstated at the docs and just use SI as back up when my levels dip.

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I believe the Guidelines for Folate and B12 Deficiency mention that further testing is not appropriate. I have read that some people have been tested and had injections stopped - even PA sufferers - due to a high result. So do your homework 😊

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That is exactly what has happened to me. So hence my 7 page letter and now an appointment to discuss.

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onlinelibrary.wiley.com/doi...

If possible print off the Guidelines in the link above - and highlight the relevant bits :-)

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not recommended to test B12 levels per BCSH guidelines unless there is a suspicion that treatment is not been complied with (not really relevant where they have a record of attending for injections)

folate is a different kettle of fish and could well be retested

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Not sure if this will help - or even connect

stichtingb12tekort.nl/weten...

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Yes thanks clivealive I've already printed this off 😁

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Hi,

"Whilst we were talking she stated that it is practice to have blood tests even if you are on b12 for life"

My understanding is that it is not recommended in recent UK guidelines.

If you look at the summary of B12 documents in third pinned post (it's the last link in list) then I think there is info that supports my understanding that further testing is not required.

Has your GP seen a copy of BSH Cobalamin and Folate Guidelines

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

I gave my GP a copy. If you think GP can't face a lot of info then the guidelines have a useful summary page at start.

Apologies if I mentioned it before but PAS have useful article "An Update for Medical Professionals: Diagnosis and Treatment"

pernicious-anaemia-society.... See page 1

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Thank you Sleepybunny.

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Use the fact that your doc should listen to your symptoms and treat u for these , blood tests apparently can come back negative I've done my own homework on this , advise doc to visit the pas site and just stand your ground , after all it's u living with the symptoms and not the doc

Good luck

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If I knew how to add a pic then I would send you my results. Lab states at bottom if patient on treatment for b12 no further tests needed

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I wonder if it says that on mine? I'll ask to see results. Thanks

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I would think carefully about whether to tell about the self injections.... when I owned up to having one b12 from a private doctor when I was desperate I

was ordered out of the consulting room.

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I don't think I will have much option if he says I need another blood test because my levels will have increased. I will play it by ear. I'm taking a friend with me to give me some support.

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Hi Alison I hope ut goes well for you.My son spoke to a colleague who is a specialist in this area and he said blood tests after treatment has started only indicate the levels in your blood and a tissue test would be much more accurate but NHS don't do them.I told my doctor this and her response was that she wasn't interested in his opinion.She said if its high in blood then you're getting enough ,this is rubbish as apparently B12 hangs around in your blood even when its not being absorbed.Uts a shame the self injection didn't suit you but hopefully your doctor wont be obnoxious like mine.

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Hi,

"Lab states at bottom if patient on treatment for b12 no further tests needed"

"I wonder if it says that on mine? I'll ask to see results"

If you're in UK, you are entitled to ask for copies of results. Maximum charge test results in UK £10, maximum charge for set of medical records £50.

Access to Medical Records (England)

nhs.uk/NHSEngland/thenhs/re...

nhs.uk/chq/pages/1309.aspx?...

In UK, viewing results is free but may need to make appt with practice manager. Not sure if Scottish and NI process is different in any way.

I prefer to have paper copies as it has been known for things to be lost, mislaid, accidently deleted etc from records.

"She said if its high in blood then you're getting enough "

Think that's rubbish as well margareta12321 . Has your GP heard of Functional B12 deficiency where there is plenty of b12 in blood but it's not getting into the cells.

Functional b12 deficiency is mentioned in links below.

nhs.uk/Conditions/Anaemia-v...

b12deficiency.info/b12-writ...

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If a person is eating animal products and they still have low B12 then they need to take B12 by shot or sublingual for life! Doctors should not make a person wait until their levels dip low before continuing treatment. It's cheap even.

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