Unable to test for Intrisic factor? - Pernicious Anaemi...

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Unable to test for Intrisic factor?

Schristie1992 profile image
14 Replies

Hi everyone. A week ago I finished my loading doses of hydroxycobalamin injection which was every two days for two weeks. I then had a blood test to test my iron and intrisic factor. When I went to see the go for the results he said the lab were unable to test my intrinsic favtor? I am in Scotland, does anyone know if that’s not allowed on nhs?

I’m very upset as my doctor doesn’t have any answers and the step forward is to test for coeliac? I do not think in coeliac, I don’t have any problems with my stomach or bowels and eat gluten containing foods everyday. I feel let down. Any advice would be great.

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Schristie1992
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topazrat profile image
topazrat

It could be because the I.F. was requested too near to your last jab. I think it has to be at least 2 weeks after a jab or it can give a false positive. I'm sure that someone will correct me if I'm wrong :)

ShootingStars profile image
ShootingStars in reply totopazrat

Yes! When taking oral B12, you need to sustain from taking any B12 for 72 hours. ( or was it at least 48 ). If loading doses were every day for two weeks, who knows how long you’ll have to wait before you can be tested.

Did you not ask why they could do the test?

Schristie1992 profile image
Schristie1992 in reply toShootingStars

I asked the doctor and he said he doesn’t know

Sleepybunny profile image
Sleepybunny

Hi,

Have you asked GP if they know why IFA could not be tested?

Has GP reordered the IFA test and if not, has he said why not?

Next link suggests doctors should leave between 48 hours and 2 weeks after b12 injection before testing IFA.

labtestsonline.org/tests/in...

"I am in Scotland, does anyone know if that’s not allowed on nhs"

UK B12 Guidelines

BSH Cobalamin and Folate Guidelines

This set of guidelines includes details of recommended tests for B12 deficiency

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart mentions that people who are symptomatic for B12 deficiency in UK should have an IFA test.

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

bnf.nice.org.uk/drug/hydrox...

NICE CKS

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

More b12 info in pinned posts on this forum.

B12 books I found useful

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

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK b12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive with lots of case studies.

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Scottish Petition B12 Deficiency

There is a petition going through Scottish parliament about b12 deficiency

parliament.scot/GettingInvo...

There may be some useful info if you click on written submissions.

There may be other links of use on my response in your older thread on this forum.

I am not medically trained.

Schristie1992 profile image
Schristie1992 in reply toSleepybunny

My gp said he doesn’t know why they were unable to test :-( he thinks it may not be on the nhs in Scotland. He seems not to bothered by it to be honest, he is going to do a coeliac test. Thank you for all the links this is very helpful x

clivealive profile image
clivealiveForum Support in reply toSchristie1992

Do you think your doctor is willing to treat you as if you do have P.A. and was your Folate level tested?

Schristie1992 profile image
Schristie1992 in reply toclivealive

He isn’t willing to treat me for PA as I’m only 25 and says it’s not likely to be that. A few months ago I was also diagnosed with underactive thyroid. He didn’t test folate. I may never know the cause of my deficiency, doctors think it’s okay just to mask symptoms but never find out the cause.

clivealive profile image
clivealiveForum Support in reply toSchristie1992

Your thyroid problems may cause a B12 deficiency and there is a cross over of symptoms which makes life more difficult.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) or a family history of these disorders are at greater risk of developing a Vitamin B12 deficiency

It is important that your Folate level is monitored as this is essential to process the B12 you have been injected.

There is a complex interaction between folic acid, vitamin B12 and iron. A deficiency of one may be "masked" by excess of another so the three must always be in balance.

Symptoms of a folate deficiency can include:

symptoms related to anaemia

reduced sense of taste

diarrhoea

numbness and tingling in the feet and hands

muscle weakness

depression

Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body

I am not a medically trained person but as for being "too young" I was 30 when I was diagnosed with P.A in 1972 and I'm still "clivealive" and over 75.

ShootingStars profile image
ShootingStars in reply toSchristie1992

I am not so sure about your doctor. How about finding a better one? You have tested and shown deficiency, doctor thinks it’s not PA, and won’t treat you? So, he just wants to leave you deficient? A few months ago your doctor found that you have an under active thyroid. Is he treating you with thyroid meds or is he also ignoring treatment for this, like the B12?

Have you been tested for MTHFR? It’s a very common gene mutation that causes inability to absorb folic acid and folate that is not co-enzymed. Inability to properly absorb B12 often goes along with MTHFR and the inability to absorb folate. With this gene mutation, synthetic forms of folate and B12 cannot be utilized or processed. Coenzymed forms, methylated or hydro, are forms of folate or B12 that a person with MTHFR can utilize.

Furface profile image
Furface in reply toSchristie1992

Cant offer anything about the B12 but regarding the coeliac test, I had one done within three days of seeing the Dr. I told him I had been reacting every time I ate carbohydrates, (bread, pasta, rice, cakes, biscuits so had stopped eating those things for the last two weeks . The blood result came back negative but that afternoon whilst i was in the pharmacy next door to Drs, i saw a brochure for coeliac testing. It said you must consume gluten substances everyday for six weeks before testing otherwise the result cannot be relied on. (The GP had failed to tell me that).

Fudgemanjim profile image
Fudgemanjim

Im 29 (i think) and ive had PA my whole life, and got very ill the past 2 years or so... wouldnt let age detirmine likleyhood of pr9blems in that regard... but it could be diet , operations and all sorts... as clive alive says folate issues can be one too... im not to knollegable and sorting out drs aboad and what not due to nhs issues ... just wanred to chime in after reading the age thing in post

Schristie1992 profile image
Schristie1992 in reply toFudgemanjim

How do you get a diagnosis for PA, is it IF test?

ShootingStars profile image
ShootingStars in reply toSchristie1992

Intrinsic factor is just a test to see if you have the ability to absorb B12. You can still have PA for other reasons even if you have intrinsic factor.

Sleepybunny profile image
Sleepybunny

Hi again,

"isn’t willing to treat me for PA as I’m only 25 and says it’s not likely to be that"

I think this betrays possible lack of knowledge...PA and B12 deficiency can affect all ages from babies and toddlers to 80 plus years although more commonly diagnosed in older people.

b12deficiency.info/children...

I gave my GPs a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and B12 Deficiency".

It may be worth joining PAS (Pernicious Anaemia Society) and asking them about

1) Incidence of PA in younger people.

pernicious-anaemia-society.... Article on Juvenile PA page 2 of articles

pernicious-anaemia-society....

There are stories on Martyn Hooper's blog about young people with PA.

martynhooper.com/2017/04/18...

martynhooper.com/2015/11/24...

2) Diagnosis of PA

pernicious-anaemia-society....

Flowchart in my first post above outlines when PA and Antibody Negative PA can be diagnosed in UK.

3) Availability of IFA test in Scotland

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

There is a section on PAS website for health professionals which your GP may find helpful. Health professionals can join PAS for free as Associate Members. See link underneath.

pernicious-anaemia-society....

"How do you get a diagnosis for PA, is it IF test?"

IFA can help. It's still possible to have PA even if IFA result is negative or normal range. See flowchart in my first post which outlines when PA ans Antibody Negative PA can be diagnosed in UK.

Other tests that may be of use are MMA, Homocysteine, Active b12 but results of these tests may be affected by recent B12 supplementation.

b12deficiency.info/b12-test...

I suggest reading BSH Cobalamin and Folate Guidelines (link in first post) which covers diagnosis.

There can be clues on FBC Full Blood Count as well.

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Scottish support groups

Sadly I don't think there is a PAS support group in Scotland any more. I think there was a B12 and Thyroid support group in Kilmarnock but not sure if group active any more. Think they post meetings on Thyroid UK forum.

NHS Scotland B12 deficiency

nhsinform.scot/illnesses-an...

Your local MP may be able to find out from Scottish Health Minister if the UK B12 documents listed in post above are being used in Scotland. Your MP may also be interested in Scottish petition about b12 deficiency.

parliament.scot/msps/curren...

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

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