Intrinsic factor antibodys: Hi I recently had... - Thyroid UK

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Intrinsic factor antibodys

suzybear profile image
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Hi I recently had bloods done at GP which one of them was b12. It came back as no action required but I told GP that I think it still to low at 211.. range (180-800) she said about doing another test that might effect the absorbtion of b12 intrinsic factor antibody. My result was 3.66. was prescribed b12 tablets from GP. Not sure what this all means why I have intrinsic factor antibody and whats causing it ? Also I'm borderline with c reactive protein. Also taking levothyroxine

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suzybear
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humanbean profile image
humanbean

This sounds like a question for the Pernicious Anaemia Society Forum here on HealthUnlocked. You'll find them here :

healthunlocked.com/pasoc

You might have Pernicious Anaemia (PA).

I don't have PA but I feel best with a B12 level at the top of the range or even over it. To keep my level that high I take methylcobalamin.

perniciousanemia.org/b12/le...

perniciousanemia.org/b12/fo...

People who have had low levels of B12 for a long time usually have too low a level of red blood cells. When the B12 is supplied the body goes into a frenzy of red blood cell making. This requires more ingredients than just B12, and one of those ingredients is potassium. If levels of potassium run low then it can make people feel very unwell, so eating a diet containing plenty of potassium is a good idea. Look up potassium-rich foods.

When the body has repaired its deficit of red blood cells the need for higher intake of potassium than usual stops.

...

Note that folate is required for your body to make use of your B12.

It is recommended that B12 is supplemented for a week to raise your level from rock bottom before starting folate supplements (if folate supplements are required). Folate shouldn't be allowed to go above range.

in reply to humanbean

Very interesting HB. Ty

Can you tell me why folate shouldn’t go above range pls?

helvella profile image
helvellaAdministratorThyroid UK in reply to

You will find this links back to the Pernicious Anaemia Society forum, but might be of passing interest:

helvella - Folate/Folic Acid and B12 Deficiency

A short discussion about commencing folate/folic acid supplementation in those who have low levels of vitamin B12.

helvella.blogspot.com/p/hel...

in reply to helvella

Thank you for that. I’ve moved onto PA Forum as suggested but the information you give is very interesting.

Three years ago I was prescribed 5mg dose of Folic Acid by a Neurologist after blood tests showed low folate. The experience was not pleasant. I was jittery, couldn’t sleep and generally unwell. My GP reduced the dose to 400 mcg and things settled down.

I know that 5 mg supplements are prescribed for people who have some cancer treatments (including Prostate) but I can’t imagine why large 5mg doses would be necessary in most people.

helvella profile image
helvellaAdministratorThyroid UK in reply to

I think the main reason is that is the only dose that can be prescribed.

Better by far, if cost isn't a barrier, is to take multiple 400 microgram folic acid or methyl-folate (I'm keeping out of the discussions as which should be taken). There is a limit of 500 micrograms for UK products over-the-counter.

(£2.50 for 180 folic acid from one large UK supermarket.)

humanbean profile image
humanbean in reply to

I think helvella has said it all better than I could.

I would never take folic acid, and certainly wouldn't take any folate or folic acid product in doses of 5mg per day - I think that is far too high - but it is what doctors give women who are deficient and want to get pregnant or are newly pregnant. I suspect this is because this is what is listed in the BNF.

You might find this helpful :

cks.nice.org.uk/topics/anae...

I take a methylfolate supplement at a dose of 1000 mcg per day. I'm not too fussy about brand. When my levels are good I just reduce the number of days I take the methyfolate each week to help keep things as close to optimal as I can.

takecareof.com/articles/ben...

chriskresser.com/folate-vs-...

It is quite easy to find links discussing symptoms of folate toxicity. But when you read them carefully you realise the authors are talking about folic acid toxicity not folate toxicity. The two links above make it clear that folate and folic acid are not the same.

But I take the information on board even though I don't take folic acid, and I try to keep my folate within the top half of the range. Whether I'm being over-cautious or not I don't know.

in reply to humanbean

Thank you for explaining 😉

humanbean profile image
humanbean in reply to

I've just found a bit more info :

ods.od.nih.gov/factsheets/F...

helvella profile image
helvellaAdministratorThyroid UK in reply to humanbean

Thanks for that - despite their inherent USA orientation, I find the ODS sheets are often very helpful.

I wish that the NHS/MHRA/NICE or whoever else would look at them as a model for what is needed. I like the consumer/professional split, the detailed numeric information, the links they provide. The existing NHS information tends to the condescending and patronising. "No need to worry your pretty little heads with details."

Have added links to the folate and B12 ODS sheets to my blog helvella - Folate/Folic Acid and B12 Deficiency (linked earlier in thread).

suzybear profile image
suzybear in reply to humanbean

Sorry for the delay in replying. I got a bit overwhelmed with all the replys. I have autism so been getting my head around it. Very interesting to know I'll need to raise my potassium. How do I know if I need folate ? Should I check with my GP ?

humanbean profile image
humanbean in reply to suzybear

You would need to get your folate level tested with a blood test.

This symptom list might be helpful :

b12info.com/folate-b9-defic...

suzybear profile image
suzybear in reply to humanbean

Oh I had folate level checked last month. That was 11 ug/L ref range ug/L >3.00

humanbean profile image
humanbean in reply to suzybear

I hate those kinds of reference ranges without an upper level. Too much folate is not good for people, so there should be an upper level. Having said that , it seems to me (not a doctor) that most of the problems described are caused by excessive folic acid intake, rather than excessive folate. I would never take folic acid myself, I supplement with methylfolate.

ods.od.nih.gov/factsheets/F...

Based on the ranges with an upper level we usually suggest that people aim for a result of 15 - 20 ug/L. If the range you are given for as folate test does have an upper level we suggest aiming for the top half of the range.

I don't know why, but some of us (me included) struggle to keep our folate levels up, so experimentation and testing is worthwhile.

Noelnoel profile image
Noelnoel in reply to humanbean

Hi humanbean

know this is an old post but I filed it for some reason and was looking through it again just now and saw your comment and wondered which of the cells, lower. I know MCV increases but interested to hear if the others

People who have had low levels of B12 for a long time usually have too low a level of red blood cells

For some context, husband had positive Medichecks MMA. Dr referred him to specialist who ordered an NHS MMA and IFab. Both negative. Now it feels as though we might have to fight our case. Currently waiting to hear if we can speak to specialist as husband never actually had a consultation with him

Thanks

humanbean profile image
humanbean in reply to Noelnoel

B12 and folate deficiency - some useful generic links :

irondisorders.org/wp-conten...

cks.nice.org.uk/topics/anae...

hormonesmatter.com/?s=B12

b12info.com/signs-and-sympt...

b12deficiency.info/folate-b...

.

Title : Three neglected numbers in the CBC: The RDW, MPV, and NRBC count

Link : ccjm.org/content/86/3/167

Quote :

A high RDW is often found in nutritional deficiencies of iron, vitamin B12, and folate.

.

labtestsonline.org.uk/tests...

According to the above labtestsonline link :

Quote :

A high RBC count may indicate congenital heart disease, dehydration, obstructive lung disease, sleep apnoea or bone marrow over-production. A low RBC count may indicate anaemia, bleeding, kidney disease, bone marrow failure (for instance, from radiation or a tumour), malnutrition, or other causes. A low count may also indicate nutritional deficiencies of iron, folate and vitamin B12.

Other things you might see in an FBC when B12 is low :

High RDW - This tells you that there are red blood cells of many different sizes.

Low Haemoglobin

High MCV

.

I'm not actually sure what question you were asking about B12. I hope one or more of the links above is helpful. I think your best bet for info on B12 is the PA Society forum on HU :

healthunlocked.com/pasoc

SlowDragon profile image
SlowDragonAdministrator

Low B12 symptoms

b12deficiency.info/signs-an...

methyl-life.com/blogs/defic...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and a week later add a separate vitamin B Complex 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

healthline.com/nutrition/fo...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

Other options

healthunlocked.com/thyroidu....

Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

SlowDragon profile image
SlowDragonAdministrator

Previous post

healthunlocked.com/thyroidu...

Ferritin is deficient at 30

Has GP prescribed iron tablets

cks.nice.org.uk/topics/anae...

Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

Medichecks iron panel test

medichecks.com/products/iro...

Look at increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

An article that explains why Low ferritin and low thyroid levels are often linked

preventmiscarriage.com/iron...

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

healthunlocked.com/thyroidu...

Posts discussing Three Arrows as very effective supplement

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Iron patches

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

Iron and thyroid link

healthunlocked.com/thyroidu...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

Good iron but low ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron

healthline.com/nutrition/he...

Ferritin over 100 to alleviate symptoms

healthunlocked.com/thyroidu...

Great research article discussing similar…..ferritin over 100 often necessary

ncbi.nlm.nih.gov/pmc/articl...

Low Iron implicated in hypothyroidism

healthunlocked.com/thyroidu...

Ferritin range on Medichecks

healthunlocked.com/thyroidu...

Inflammation affecting ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes: 

Males 16-60: 30-400 ug/L

Female's: 16-60: 30-150

Both >60: 30-650 

The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘

Lilian15 profile image
Lilian15

If you do not have intrinsic factor you are unlikely to absorb any B12 you take by mouth. You will need injections. Or at least more tests BEFORE taking supplements.

suzybear profile image
suzybear in reply to Lilian15

Thank you Im going to my GP tomorrow and will hopefully get injections

SlowDragon profile image
SlowDragonAdministrator

vitamins very likely low because you are not on high enough dose levothyroxine……only on 75mcg

Push for dose increase in levothyroxine

Ideally to 100mcg daily…..but if GP reluctant 75mcg and 100mcg alternate days

Which brand of levothyroxine are you taking

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

ESSENTIAL to test vitamin D

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

How much vitamin D are you currently taking

Baggy8 profile image
Baggy8

You need Intrinsic Factor to enable the body to process B12. The antibodies you have destroy IF, which transports the B12 from your gut to your blood. This means you have Pernicious Anemia and will need injections for life. Believe it or not your journey may be easier because you have had this result. There are some very knowledgeable people over on the Pernicious Anemia Society site here on Health Unlocked who are amazingly helpful!

tinkerbell22 profile image
tinkerbell22

I'm glad the antibodies showed up in your test! I hear that they often don't appear in testing, they can come and go from view, and that some people have needed three tests before they have shown up! So this result is really good as it gives you something to work with. Hang onto that test result! Hope you find some relief soon

Sparklingsunshine profile image
Sparklingsunshine in reply to tinkerbell22

The test is only 50% accurate. I had extremely low B12 and this didnt budge despite being on high dose B12 tablets, yet my IF test was negative. I've been on jabs ever since. Its tantamount to flipping a coin frankly.

CoeliacMum1 profile image
CoeliacMum1

So your positive intrinsic factor means you should be given B12 shots or tablets.

If your low NHS rarely do much unless deficient and usually run 2 B12 tests to check in case errors made, given the intrinsic factors positive means you need supplements or eventually will… B12 shots are best way to get level up but maybe as not deficient decided it was cheaper option to go with tablets, which NHS will do whatever although arguably we know that in many cases this is false economy, but that’s another topic.

I have Pernicious aneamia with negative intrinsic factor, it is a thing… anyhow you should have a follow up B12 test to make sure your levels are increasing on supplementation, but like Vit D once you are supplementing they often won’t waste more money testing in some cases, as they assume you will be obviously getting better, it’s not always the case.

I supplement Vit D at 3000 and my levels were mediocre 49 in May…,I’ve upped to 4000 to all year round now… GP recommends I do 800, although mentioned I do 3000 , if took their advice I’d be worse…I get sick of the same thing will work for everyone approach by all mean use as guidelines but if still symptomatic, or tests say different then help people don’t be stuck on results as it looks ok or even not symptomatic but tests say low.

Cornwaller profile image
Cornwaller

You are correct. 211 is very very likely too low and not taking action, frankly, is being reckless, with your health, by the GP. Do you have b12 deficiency symptoms- see B12d.org?

See NICE guidelines also BMJ best practice for b12. But the best advice is on the HU PA forum. The Dutch b12clinic is also excellent.

Many NHS GPS are woefully ignorant on the diagnosis and treatment of b12 deficiency.

Best wishes

suzybear profile image
suzybear in reply to Cornwaller

It scares me that my result came back within range and I'm glad I asked about it and got a copy of my results off the receptionist. I said to the doctor it seems to low so she finally said about the intrinsic factor antibody test. I'm not sure if I have a lot of symptoms but i get tired even tho I'm on thyroid meds. The doctor haven't even given me a diagnosis after the intrinsic factor antibody test I just had a text message saying to pick up prescription for the b12 tablets. I'm thinking when I see my GP Tuesday im going to question about having b12 injection coz I would imagine tablets wouldn't be absorbed well ?

Cornwaller profile image
Cornwaller in reply to suzybear

Again you are right. Assuming you are not Vegan or something then your b12 is low and probably getting lower because of poor absorption. Therefore tablets are only likely to be partially successful and worse may have little effect on your declining b12 levels. B12 absorption is a complex metabolic process and there is little passive absorption.

Low b12 is associated with a significant number of conditions particularly autoimmune diseases and it not worth risking your health and well being by not effectively treating your low b12.

Best wishes

cpidoc profile image
cpidoc

Take a look at b12d.org

suzybear profile image
suzybear

I just seen my GP and spoke about the intrinsic factor antibody results. I think I got it wrong that Im positive because she just told me it's negative with my result of 3.66 u/ml. ?

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