Just taken my daughter to gp (different one in the surgery) to discuss test results and what to do next. Coeliac negative, intrinsic factor negative.
Other gp had ok’d loading jabs which she had in December as b12 was 166, ferritin 14 and folate 4. McV and MCH at top of range. Also put on iron tablets.
This gp said she couldn’t have PA as Haemoglobin was ok and to have any type of anemia it had to be low. Is this correct?
He said they want to stop treating people with a b12 above 100 as the range is too high. He said as her intrinsic factor was negative she doesn’t need injections as her stomach can absorb the vitamin in her stomach. He said it her b12 was low because her diet doesn’t include enough and to get her a good multi vitamin.
When I mentioned her chronic fatigue he said she isn’t getting enough sleep and she needs to go to bed earlier. She told him she feels like she hadn’t slept for days and he said it’s sleep debt just go to bed earlier.
I had the leaflet from the PA society to give him about intrinsic factor test not being reliable but he wouldn’t even look at it. Just said the gp practice was taken to court 4 yrs ago by a patient who wasn’t happy with her b12 treatment so he knows all about it. He just kept saying Haemoglobin has to be low to have PA.
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Vicky2822
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20% of patients with PA present without anaemia so yes, possible to have PA and no anaemia.
Intrinsic factor test gives false negatives about 50% of time so negative doesn't rule out PA.
To be honest it really sounds as if she needs to look for a different surgery. GP obviously didn't learn anything about B12 from being taken to court about treatment and if that's the atmosphere ... heaven help anyone who has a problem with B12 - really sounds as if they have no regard for any national guidelines at all.
You would probably be better off contacting the PA directly about the surgery (though you would probably need to join/daughter would need to join.
Thanks yes she has joined. I took him their leaflet on intrinsic factor saying it’s only 50% reliable but he wouldn’t even look at it as he knows everything about PA and was adamant she couldn’t have it as she wasn’t anemic.
well, he obviously doesn't know everything about PA and is likely to beyond saving from his own ignorance.
Think the only things you can do are look for another practice (though no guarantee that a new practice would land you with a more knowledgeable GP) and contacting the PAS directly.
"but he wouldn’t even look at it as he knows everything about PA"
"leaflet from the PA society ...about intrinsic factor test not being reliable ..wouldn’t even look at it"
Might be worth putting extracts from B12 documents directly into a letter to GP as in UK I understand that letters to GP are filed with a patients medical records. It won't guarantee that the info is read but it should guarantee it is on file.
Link about writing letters to GPs about B12 deficiency
Has she checked what the local NHS guidelines are on treating B12 deficiency and compared them with national guidelines? She might be in one of the areas of UK that is using outdated local guidelines.
Local guidelines on b12 deficiency may be found by
1) An internet search
2) Search on local NHS website
3) Freedom of Information request to local NHS website
4) Request to practice manager for a copy of B12 deficiency guidelines surgery is using (this may irritate GP practice).
If local guidelines are out of date, may be worth contacting CCG and asking when guidelines are going to be up dated.
Has she seen a neurologist if she has neurological symptoms eg tinnitus, tremors, tingling, pins and needles, memory problems, balance issues, word finding problems, clumsiness, restless legs (many other possible neuro symptoms)?
A gastro-enterologist if she has gut issues?
A haematologist if she has neuro issues. NICE CKS link below indicates that GPs should seek advcie from haematologist for a patient with B12 deficiency with neuro symptoms.
Has she ever eaten raw/undercooked fish or been in an area where internal parasites are common?
Fish tapeworm infection can lead to B12 deficiency. One potential sign of fish tapeworm infection is an increase in eosinophils ( a type of white blood cell). Eosinophil result can be found on Full Blood Count results.
Giardia lamblia is another parasite that can be associated with B12 deficiency.
I love it that you are “not medically trained” , but have superior knowledge about Pernicious Anaemia over most GPs . 3 hearty cheers for you, your knowledge , compassion and helpfulness .
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