Can you have PA if Haemoglobin is ok? - Pernicious Anaemi...

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Can you have PA if Haemoglobin is ok?

Vicky2822 profile image
6 Replies

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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Gambit62 profile image
Gambit62Administrator

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.

pernicious-anaemia-society....

pernicious-anaemia-society....

Vicky2822 profile image
Vicky2822 in reply toGambit62

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.

Gambit62 profile image
Gambit62Administrator in reply toVicky2822

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.

wedgewood profile image
wedgewood in reply toGambit62

Gambit , you are a first rate administrator. 🥇🥇 🥇

Sleepybunny profile image
Sleepybunny

Hi,

"Just said the gp practice was taken to court 4 yrs ago by a patient who wasn’t happy with her b12 treatment"

I think that says it all...can you go to another practice?

"gp said she couldn’t have PA as Haemoglobin was ok and to have any type of anemia it had to be low."

PAS will tell you that some people with PA do not have anaemia and can probably refer you to articles/documents that discuss this.

I'd suggest she rings PAS and tells them about GPs response. They may be able to intervene further on her behalf.

Think GP needs to do some homework.

I think BSH Cobalamin guidelines has something about this in it.

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

Misconceptions about a B12 deficiency

English article from Dutch B12 website. See Section 2.

stichtingb12tekort.nl/weten...

"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

b12deficiency.info/b12-writ...

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.

nhs.uk/ServiceDirectories/P...

Sadly some GPs find it difficult to cope with assertive patients and she may find GP/patient relationship suffers.

May be worth mentioning in any letters, GP discussions, the potentially dire consequences for patient if b12 deficiency is under treated. See below.

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....

Blog post from Martyn Hooper's blog, mentions SACD

martynhooper.com/2010/09/21...

Other sources of help

1) MPs

If your daughter is not getting treatment to which she is entitled then local MP may be interested in hearing her story

parliament.uk/mps-lords-and...

2) PALS

nhs.uk/common-health-questi...

Personally I don't think PALS are very effective.

3) Complaints about NHS

citizensadvice.org.uk/healt...

4) HDA patient care trust

This UK charity uses a network of specialist doctors around the UK. It's for people who have concerns over diagnosis or treatment.

hdapatientcaretrust.com/

HDA patient care trust helpline

0207 935 8366

They are usually quick to respond to enquiries.

5) Local PAS support groups

pernicious-anaemia-society....

Is there a PAS support group your daughter could get to? This would give emotional support and they may know about helpful GPs in the area.

If there is no PAS support group close by then PAS is always keen to hear from people willing to set one up and will offer support to a new group.

B12d.org has meetings near Durham.

b12d.org/event

B12 Deficiency Info organises occasional B12 Cafes

b12deficiency.info/

6) Specialists

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.

cks.nice.org.uk/anaemia-b12...

There is always the chance that a specialist may know more about b12 deficiency than GP although ignorance about b12 exists among some specialists.

"Coeliac negative"

Have you both checked national guidelines and on Coeliac UK that the correct tests were done?

From personal experience, can tell you that recommended tests are not always done.

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac Blood Tests

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

H Pylori infection

Has she been tested for H pylori?

patient.info/health/dyspeps...

Internal parasites?

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.

Full Blood Count

labtestsonline.org.uk/tests...

I was told once that any formal complaint about a GP is discussed at their performance review.

I would imagine that the GP practice is likely to be quite defensive after being taken to court. I hope she finds another surgery.

Is your daughter in a position to seek private treatment? Although that is no guarantee of better treatment.

I am not medically trained.

wedgewood profile image
wedgewood in reply toSleepybunny

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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