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Intrinsic factor blood test results...

Sarahlouise1980 profile image
26 Replies

Hi All,

After testing below range for vitamin B12 I have just received the results of the intrinsic factor blood test and it states intrinsic factor ABS negative. Does this mean I can supplement with b12 now? And folate? At what dose? I know I’m low in b12 but the only symptom I have is hairloss! I would rather not have the injections as I’ve heard a very common side effect is acne. I’m already down enough about the hairloss without adding acne into the mix! I already supplement with iron tablets so my ferritin level is over 100 and I’m on loading doses of vitamin d too.

Thank you!

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Sarahlouise1980
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26 Replies
Nackapan profile image
Nackapan

The absorbtion rate is very low with oral tablets. I think 10 -20%. I've read it's better to take it twice a day. As for amount the advice varies.

Alsour concentrate on your diet if you don't think it a an absorbtion problem.

Liver , lean meat fish and non heam as well . With Vitamin C. Don't drink too much at meal times as this dilutes your stomach acid.

If diet and oral supplements don't work dont worry about the acne if you ill it's a small price to pay to prevent nerve damage. Not everyone gets it. I did initially but only get the odd spot now after an injection. T C

Gambit62 profile image
Gambit62Administrator in reply to Nackapan

Nackapan absorption of oral B12 is actually just under 1% - but that is an average - some people will absorb more others will absorb less and about 25% of people won't get any benefit from high dose oral - that seems to be across the board and not related to B12 absorption problems.

Nackapan profile image
Nackapan in reply to Gambit62

Obviously what I read was wrong then. Will check source/article.

Nackapan profile image
Nackapan in reply to Gambit62

So it actually depends on ones absorbtion rate if any. Okay. So no one really knows.

Probably why different things are written about it.

Trial and error again with treatment options.

Mean73 profile image
Mean73 in reply to Nackapan

I have had good results with sublingual B12. last check was around 700, up from 220.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to Mean73

Hi Mean73, how long has it taken for you to get your levels up with the sublinguals? Do you have any side effects? x

Mean73 profile image
Mean73 in reply to Sarahlouise1980

taking 1000mcg sublingual took about 3 months I guess? It was in normal range at the next check. The only side effect is trouble sleeping if I take it too late in the day.

fbirder profile image
fbirder in reply to Nackapan

The absorption of B12 depends on the dose. You will absorb about 1% of a 1000 mcg dose, and about 50% of a 10 mcg dose, assuming you have no absorption problems.

If you do have absorption problems then you'll absorb close to zero percent. clinchem.aaccjnls.org/conte...

Nackapan profile image
Nackapan in reply to fbirder

I'm sure that article good. Unfortunately I'm unable to read it!

Probably too technical for a non scientist anyhow. It all is so individual and whether you can absorb well or not. Yes so we all just have to try things.

Oh btw amitriptyline is used 'off licence ' in the UK for neuropathic pain. I agreed with you on another post when you said it wasn't. then thought about it.

Not that it really matters .The main thing is it's used with some success for people which is good.

may61 profile image
may61 in reply to Nackapan

Have taken sublingual as a fill in with my injections for years ,and take them as I need them Need a high dose though ,I take a 2000mcg ,cos yes I read also that you only get a small percentage of uptake ,and I thought it was only 1% Don’t forget the folic acid though.Also read take one, see how that goes and if you feel you need another take it .Also had to try a few different ones to find the one that suited me best.Good luck

fbirder profile image
fbirder

You need to figure out why your B12 is low. It is possible that you can get by with oral supplements - if your deficiency is due to your diet.

If you are vegetarian or vegan then it is likely that you do not eat enough B12 (it's only found in foods of animal origin). In that case taking oral supplements will probably fix it.

If you do eat plenty of foods with B12 in then your problem is one of absorption. That may be caused by certain medication - PPIs (for stomach acid) and metformin (for diabetes) are the most common culprits. If you are taking those then stopping them (after talking about it with your doctor) should result in your absorption recovering after a while. It may be that you can continue to take them and get enough B12 from oral supplements. You must discuss this with your doctor.

If you're not on those drugs then it's fairly certain you have Pernicious Anaemia. The IFAB test you had is unreliable, a negative result doesn't mean that you don't have PA. If you do have it then the only solution is injections. WIthout them you will get worse. Bad enough so that a little acne for a few weeks will seem like nothing.

Probably the best course of action, being as you do not have serious symptoms like nerve damage, is to take B12 supplements for a month (about 50 mcg a day) and get your blood tested again. If levels have increased substantially then carry on taking the pills. Otherwise it's injections.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to fbirder

Should I only take 50mcg a day? The sublingual tablets and spray I have been looking at are 1000mcg?

I’m confused as I’d like to get my levels up fairly quickly to see if it helps my hair ( which is awful ). I have also been prescribed 5mg of folic acid as that was low too.

I know it’s vain not wanting the injections incase they cause acne but I am already so very down about my hair I am on antidepressants. I’m not sure I could cope with the acne too xx

fbirder profile image
fbirder in reply to Sarahlouise1980

It'll make no difference if you take 1000 or 50 mcg a day. The amount you can absorb from a single dose is limited to about 10 mcg at a time. And it'll do no harm to take the high-dose stuff.

It might be a good idea to hold off on the folic acid for now. High doses of folic acid, in the presence of an untreated B12 deficiency may be harmful b12science.com/B12Science/D... So I would wait until you've seen if the oral B12 fixes your deficiency.

A common symptom of a B12 deficiency is depression. So it may be that it will go away when your levels get back up to normal.

Again, the best way to do that quickly is to have the injections.

Sleepybunny profile image
Sleepybunny

Hi,

" the only symptom I have is hairloss!"

The symptoms of B12 deficiency are very varied. It can affect virtually all body systems and both mental and physical health.

Symptoms of B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

As well as the IFA test for PA, has GP tested for

Coeliac Disease?

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac Blood Tests

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

H Pylori infection?

patient.info/digestive-heal...

Any chance of internal parasites eg fish tapeworm? Do you ever eat raw fish eg sushi/smoked salmon etc?

There are other parasites associated with B12 deficiency.

Any exposure to nitrous oxide?

gov.uk/drug-safety-update/n...

"received the results of the intrinsic factor blood test and it states intrinsic factor ABS negative"

I hope your GP is aware that it is possible to have Antibody Negative PA, where IFA result is negative but patient has PA. See BSH flowchart below.

UK B12 documents

BSH Cobalamin and Folate Guidelines

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

Flowchart from BSH Cobalamin and Folate Guidelines

stichtingb12tekort.nl/weten...

Flowchart outlines process for diagnosing PA and Antibody Negative PA in UK

BMJ B12 article

bmj.com/content/349/bmj.g5226

Emphasises need to treat patients who are symptomatic even if their B12 level is within range.

BNF

Link below mentions potential side effects of B12 injections.

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

BNF guidance on treating b12 deficiency changed recently.

pernicious-anaemia-society....

NICE CKS

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

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 does not show updated BNF info.

"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. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".

I plan to read ""Vitamin B12 deficiency in Clinical Practice" (subtitle "Doctor, you gave me my life back!" by Dr Joseph Alexander "Chandy" Kayyalackakom and Hugo Minney PhD " soon.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

Blog post about how PAS can support PAS members seeking PA diagnosis

martynhooper.com/2017/06/24...

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

Both these tests can be unreliable.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

B12d.org holds support meetings near Durham, UK

b12d.org/event

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Link about "What to do next" if B12 deficiency suspected

b12deficiency.info/what-to-...

Blood tests

b12deficiency.info/b12-test...

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-...

Iron Studies

labtestsonline.org.uk/tests...

Best advice I ever got was ....

to always get copies of all my test results. I learned to do this after being told everything was normal/no action and then I found abnormal and borderline results on the copies.

Access to Medical Records (England)

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

england.nhs.uk/contact-us/h...

Vital to get adequate treatment or there may be a risk of further deterioration including permanent neurological problems.

Neurological Consequences of B12 Deficiency

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.... See Page2 of articles.

Blog post from Martyn Hooper's blog, mentions SACD

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

Unhappy with Treatment (UK info)?

I feel it is more effective to put queries about treatment/diagnosis into a letter to GP. In UK, my understanding is that letters to GP are supposed to be filed with medical records so are therefore in my opinion less likely to be ignored.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 in link above is about under treatment of B12 deficiency with neuro symptoms.

CAB NHS Complaints

citizensadvice.org.uk/healt...

HDA patient care trust

UK charity that offers free second opinions on medical diagnoses and medical treatment.

hdapatientcaretrust.com/

Warnings....

1) B12 deficiency is not always well understood by GPs and specialists so it pays to be well prepared for any appointments.

2) Some GPs are not able to cope well with assertive patients so be prepared for GP/patient relationship becoming strained and have a back up plan eg another GP surgery to go to.

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

I am not medically trained. More B12 info in pinned posts on this forum.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to Sleepybunny

So hairloss is a symptom of b12 deficiency?

Sleepybunny profile image
Sleepybunny in reply to Sarahlouise1980

Yes, it can be in my experience.

I had hair loss all over body eg head, eyebrows, eyelashes, underarm and elsewhere on body.

I had put some of the symptoms I had down to getting older and being a busy mum. I hadn't realised until I looked at lists of symptoms that the majority of them could well be due to B12 deficiency.

Gambit62 profile image
Gambit62Administrator

Whilst hairloss is a symptom of B12 deficiency its also a symptom of hypothyroidism and also a number of other conditions.

Hypothyroidism is associated with problems absorbing B12 - and there are a number of ways this could happen.

Do you have any gut issues such as acid reflux, bloating or excessive wind - these could indicate low stomach acidity which is a risk factor for B12 absorption.

What, if anything has your GP said? - realise that this may be on other posts so apologies for that.

The IFAB test is notoriously insensitive - gives false negatives about 50% of the time - so a negative is a long way from ruling out PA ... though a positive is good evidence that you do have PA.

I would go with fbirders suggestion of trying 50mcg tablets for a while to see if they help.

Nackapan profile image
Nackapan

I try things and then get blood tests to see what's worked. Ferritin vit D ect.

I couldn't do this with b12 as went straight into into injections.

So if you feel well enough do what fbirder suggests . Take what b12 tablets you've got . Hold back on folic acid and get a blood test to see of you are able to absorb them.

One of my many symptoms was hair loss. It will go back to normal with the right treatment.

Meanwhile a skilled hairdresser can give you a good cut to hide the loss if your hair. If you are able to get out.

Make your plan. Write things down. Go by your symptoms.

I hope you are feeling somewhat better very soon.

Sarahlouise1980 profile image
Sarahlouise1980 in reply to Nackapan

That’s the thing nackapan, the only symptom I have is hairloss and oilier skin than is usual. I’m on thyroxine and that’s all okay, I’m on vitamin D and iron tablets so that and my ferritin levels are good (over 100). The only blood tests that have come back low are the B12 and folate xx

Nackapan profile image
Nackapan

Hair loss takes time to recover.

A good haircut would really help your confidence. No one notices it like you do.

Try the b12 tablets you have.

Discuss your plan if action with Gp. Follow up with a blood test. Great if tablets work. If they don't injections will.

Drink loads of water to help your skin.

Look at your diet and the way you eat food. Sometimes cooked veg gives more available nutrients.

What is your b12 level?

Sounds like you on track with everything else .

If you new to antidepressants check out any possible side effects with your doctor. ?

Frustratingly your body needs time to re-balance.

I realise your hair and skin getting you down.

All the posts hopefully will help you. Alot of information there.

We do help each other.

Take a step at a time.

Things will change. T C

Gambit62 profile image
Gambit62Administrator

sarahlouise1980

this is just to let you know that I have deleted a subthread on this post as the comments strayed from forum policy in relation to politeness.

if you don't have an absorption problem then the difference between taking 50mcg and 1000mcg is marginal and 50mcg x 2 per day is the dose recommended for dietary deficiency per UK guidelines.

Passive absorption using very high dose oral can skew results when trying to diagnose a B12 absorption problem and make getting a diagnosis difficult. As per the paragraph above it isn't going to be any more effective for raising B12 levels in the absence of an absorption problem. If you have an absorption problem then it is going to take a very long time to raise B12 levels, if it works at all.

The symtpoms of B12 deficiency and folate deficiency overlap considerably and there is also a huge overlap with a number of other conditions.

I don't think you have mentioned what your B12 levels were - though you say they were low - or if you have any signs of macrocytosis (your red blood cells being larger and rounder than normal.

Do you have any digestive issues?

Sarahlouise1980 profile image
Sarahlouise1980 in reply to Gambit62

No digestive issues and no other symptoms other than the hairloss. I do have an underactive thyroid but this is well treated. My vitamin b12 level was 119.

JanD236 profile image
JanD236 in reply to Sarahlouise1980

My hair has become very thin and there could be one or more reasons....age , post menopausal, dodgy thyroid, B12d. My GP did also test my zinc level as low levels can be a cause of hair loss. My level was, from memory, 11 and the bottom of the range is 10 so who knows, that might also be contributing to the problem. Has your zinc level been tested?

Gambit62 profile image
Gambit62Administrator in reply to Sarahlouise1980

was the test done by GP? and is the result below range? was your GP wanting to treat you with injections? have you discussed treatment with them? It sounds as if you definitely are deficient and need to start treatment.

How long were you using the sublinguals before testing?

Sarahlouise1980 profile image
Sarahlouise1980 in reply to Gambit62

Yes the test was done by my GP. I’ve never taken any b12 supplements. Is oily skin a symptom of low B12? I’ve never had oily skin before now x

Gambit62 profile image
Gambit62Administrator in reply to Sarahlouise1980

for me oily skin was related to hormones but we are all different - think dry skin is more common with B12 deficiency.

If you are folate deficiency as well as B12 deficient that points to a B12 absorption problem, so unlikely that using tablets is going to be effective for you.

In most cases the acne caused by B12 is due to a reaction of micro-organisms that live on your skin reacting to the excess B12 by secreting a substance that your skin finds toxic. It is a long way from being a problem for everyone - for many B12 will improve skin condition - that was the case for me.

I know this isn't what you want to here but if you have been offered injections I really would suggest you take them - they are likely to be the only way of getting your B12 levels to where you need them in a timescale that will prevent other problems occuring.

Anxiety is a symptom of B12 deficiency which is why some of the replies on this forum have mentioned that suggesting that you may have more symptoms of B12 deficiency than you realise.

Deal with acne if it becomes a real thing. A pharmacist should be able to help you find a suitable skin wash if it does become a real thing.

You can find a full list of B12 symptoms here

pernicious-anaemia-society....

To give you an example of my own experience - I suffered decades of on-going depression and anxiety so thought they were nothing to do with B12 but they actually went when I finally got my B12 levels to the right place for me.

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