History of low b12 and ferretin - Pernicious Anaemi...

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History of low b12 and ferretin

ella2b profile image
20 Replies

Sorry if this is the wrong place to post but, i have a family history (on both sides) of PA.

I eat meat and dairy and i dont smoke and dont drink often,

I do have frequent diahorrea and nausea endoscopy nd colonoscopy showed inflammation of the lower sphincter of my stomach and duodenum. I was diagnosed with GORD and the lower bowel issues atributed to IBS/ Hypermobility.

I regularly take OTC multivitamin with iron.

I have previously over the past 15 years or so had borderline and low b12, i have been treated with prescribed oral suppliment on a few occasions.

For a while, My b12 was up to around 460 which i noticed i felt better at (prior to me knowing any test results) but in about 6 months it halved to around 200 (again i began feeling worse prior to finding these results) i have not been able to get it to rise again.

Iv also had ferretin levels of below 30 for at least the past 3 years, they reached 16 in november last year, i was treated with ferrous fumerate??sp which brought the levels up to 55 at the begining of march this year. But again it is falling rather than being stable.

I am fed up of being so fatigued and generally feeling rubbish. Im trying all i can with my diet and suppliments.

Anyone got any suggestions? Of what i can ask my GP?

Thank you.

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ella2b
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pvanderaa profile image
pvanderaa

The assumption is that the inflammation at the entrance to the duodenum is from ??? .. too much stomach acid.

However, too alkaline (i.e. bile) backing up into the stomach causes exactly the same symptoms.

How do you react to drinking a cup of hot water with 2 TBLS apple cider vinegar and a slice of lemon? Or to orange juice?

Have you tried going gluten and dairy free? Do you supplement with 5000 mcg B12 in addition to your other vitamins?

Have you been tested for heliobacter pylori?

ella2b profile image
ella2b in reply topvanderaa

Hi, thanx for your reply. I didnt actually ask if the inflammation was from stomach acid or not. Hmm.

No difference with acv or orange. Or gluten free and tested negative for ceoliacs blood test (had been eating gluten before that so unlikely to be false). Dairy free made no difference either. Only diet that has helped is low fiber/residue.

Tested negative for H.pylori.

Currently no additional B12 other than diet and multi vit which has 2.5Ug ( its not a U though, dont have the symbol on my phone)

ella2b profile image
ella2b in reply toella2b

I didnt acutally realise the multi vit had so little b12... seems pointless. Ill get seperate

deniseinmilden profile image
deniseinmilden in reply toella2b

If you look online (Amazon is an OK starting point) there are several brands at 5000ug (mcg or micrograms / back-to-front u is the Greek letter mu).

The Solgar Methylcobalamin 5000 MCG are the most expensive but are small and smooth so readily dissolve under your tongue if your digestive system won't absorb your nutrients readily.

The others will do the same sort of thing at less cost.

I think you will do well to keep taking the multivitamin and mineral supplement too as the B12 needs a wide range of other nutrients to work.

While iron total is good the most important type is heme iron which is only available from meat. Beef and lamb are the best source by far, followed by pork with chicken some way behind.

For best absorption take iron supplements on an empty stomach (one hour before food and two hours afterwards) and not with things containing high calcium (dairy products, spinach) or eggs!

It's hard to believe all the hoops we need to jump through for defective digestion but it does help!!

I strongly recommend Googling everything to get a broader knowledge but try to make sure the information is sound and verified.

Good luck!

ella2b profile image
ella2b in reply todeniseinmilden

Thank you i shall have a look.

pvanderaa profile image
pvanderaa in reply toella2b

Ug is mcg (micrograms)

1 mg is 1 milligram = 1000 mcg

wedgewood profile image
wedgewood

With PA on both sides of your family , you may well have PA yourself . If this is the case , you will only benefit from B12 injections . Oral supplements will not help . PA is an autoimmune condition where antibodies attack the parietal cells in the stomach . This interferes with the production of Intrinsic Factor and stomach acid (hydrochloric acid ) both of which are essential to the absorbtion of vitamin B12 . Getting an official diagnosis of PA is not always easy as the test for it (Intrinsic Factor antibody test ) is very unreliable and gives negative results when they should be positive . Even when proven , many patients cannot get sufficient injections ( usual treatment after loading doses of 6/5 in 2 weeks , is one injection every 3 months ) I have had to resort to self injection once a week to keep well. We are all different and can only find out the optimum frequency of injections by trial and error . It’s possible to obtain B12 ampoules from German online pharmacies . In U.K. they are only obtainable on prescription . Needles , syringes swabs etc. can be obtained in the U.K. .

The lack of acid in PA patients leads to gut problems, as the stomach flora is upset . No

Medical treatment for this . I found (after trial

and error again ) that probiotics help enormously . A liquid probiotic that was developed for IBS patients , called SYMPROVE, was first class . Unfortunately expensive .There are other probiotics in capsule form e.g. Bio -kult . Another possibility is -make your own — sauerkraut — organic and eaten raw . Can be purchased at health food shops or Amazon or MAKE YOUR OWN ! ( recipe online ) Also google ACHLORHYDRIA DIET . Achlorhydria/ Hypochlorhydria is no /low stomach acid . Drinking acidic drinks like lemon/ lime juice or diluted organic apple cider before eating also helps . Having low stomach acid also impacts on absorbtion of other vitamins and minerals , so a multi-vitamin and mineral tablet can help . But for PA , only injections can help with B12. Do tell your doctor about PA being in your family . Try to get a test , bearing in mind that it is very unreliable . But if it is positive , you DO have PA , but if negative , you may still have PA , Symptoms are the best indication .

Best wishes to you .

IF YOU SUPPLEMENT WITH B12 , your blood serum of B12 will register high and your GP will not believe that you have B12 deficiency .

ella2b profile image
ella2b in reply towedgewood

Thankyou, i do take lanzoprasole ans have done for 10 or so years. Unfortunetly symprove is out of my budget but will get some yogurt as the beneficial biotics are more likely to survive my stomach ect. I have an apt this morning so will mention to my GP

wedgewood profile image
wedgewood in reply toella2b

If you are taking Lanasoprazole ,any stomach acid that you have will be wiped out. This results in your not being able to absorb B12 properly . In that case , if you cannot give it up , injections are your only way of getting the B12 that you need .

rusholme profile image
rusholme in reply toella2b

Try making your own Kefir instead of buying probiotics - I do. It doesn't cost much to buy Kefir grains; I got mine from a seller on Amazon. Once you have them it is just a matter of 'feeding' them; they are a live organism and grow. There is plenty of information on the internet. So much cheaper than buying probiotics and it will have many times more of the beneficial bacteria in it.

KimberinUS profile image
KimberinUS in reply toella2b

how were you tested for h pylori? breath, blood or stool?

i ask because with blood testing they need to check for 3 different types of iga factors. i think they are A, G and M. many blood tests only check for one or two so are not a reliable test.

also you cannot have taken a breath or stool sample test for h pylori until you are off ALL acid blockers for a minimum of 14 days.

sooo... b12 and ferritin issues. were you tested correctly for h pylori?

fbirder profile image
fbirder

The gastroscopy results suggest that you don’t have PA.

PA is the result of Autoimmune Metaplastic Gastric Atrophy which involves an attack on the cells of the fundus and body (top and middle) of the stomach. But your result showed atrophy of the antrum (bottom) of the stomach.

Did they say what the inflammation of the duodenum was caused by? It sounds as if they think it was caused by excess stomach acid. If so, did they give you PPIs (Proton Pump Inhibitors, normally drugs with a name that ends in -azole)? Long-term use of them can lower B12.

Another possible cause of duodenal inflammation is coeliac’s disease.

Sleepybunny profile image
Sleepybunny

Hi,

What does your GP think is causing the drop in your B12 levels?

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Link about "What to Do Next " if B12 deficiency is suspected.

b12deficiency.info/what-to-...

"tested negative for ceoliacs blood test (had been eating gluten before that so unlikely to be false"

Which blood tests did you have for Coeliac Disease?

In UK, two first line tests are recommended.

1) tTG IgA

2) Total IgA

My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coeliac disease. If you only had tTG IgA test then I don't see how GP can be confident you do not have Coeliac disease.

NICE guidelines Coeliac Disease (2015 version)

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

Coeliac Blood Tests

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

"Tested negative for H. Pylori."

What tests did you have? Sometimes people test negative on blood or stool tests but symptoms can persist, in which case doctors may consider a tissue biopsy.

labtestsonline.org.uk/tests...

patient.info/health/dyspeps...

Parasites

Have you been checked for parasite infection eg fish tapeworm? Fish tapeworm infection can cause severe B12 deficiency. One potential sign of fish tapeworm infection is an increase in eosinophils, a type of white blood cell. A full blood count test will show an eosinophil result.

Nitrous Oxide

Have you had any surgery recently that involved nitrous oxide as part of anaesthesia/pain relief? Nitrous Oxide can inactivate B12 in the body.

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

"over the past 15 years or so had borderline and low b12"

Are you symptomatic for B12 deficiency?

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/... (may need to be B12d.org member to use this)

In UK, emphasis in UK B12 guidelines is on treating people who are symptomatic for B12 deficiency even if B12 is within range.

I had typical symptoms of B12 deficiency including neurological symptoms for years with B12 results between 300 - 500 ng/L. Some UK GPs are unaware that it is possible to have B12 deficiency with an in range result. Many on this forum get told it's ME/CFS, depression, hypochondria or psychosomatic.

If you're in UK, I'd suggest reading all following UK documents/articles.

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...

BMJ B12 article

bmj.com/content/349/bmj.g5226

BNF

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

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 is up to date with UK b12 guidelines. I gave a copy of this to my GPs.

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

Has several case studies. I cried when I read this as it was like reading about myself.

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

Very comprehensive with lots of case studies.

UK B12 websites

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Offers support and info about PA. Not every PAS member has a confirmed diagnosis of PA.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

PAS support groups in UK

pernicious-anaemia-society....

"i have a family history (on both sides) of PA"

I'd urge you to consider joining and speaking to PAS. There is an answerphone so messages can be left. May take a few days to get reply but may get through to PAS chairman, Martyn Hooper. PAS can support people seeking PA diagnosis, see blog post below.

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

I want to make it clear that I am not medically trained. fbirder mentions that gastroscopy results do not suggest PA. I wonder if a person in very early stages of PA would show enough AMGA to be picked up on a gastroscopy.

Have you been tested for PA?

With your family history, I would be surprised if you have not been tested.This would be an Intrinsic Factor Antibody test. IFA test is not always reliable and it is still possible to have PA even if IFA result is negative or normal range. Flowchart link further up page outlines when PA or Antibody Negative PA can be diagnosed in UK.

B12 Deficiency Info website

b12deficiency.info/

USA B12 website

b12awareness.org/

Dutch B12 website (has English language articles)

stichtingb12tekort.nl/weten...

UK B12 Blogs

May be stories on these blogs that are relevant to you.

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 1 is about under treatment of B12 deficiency with neurological symptoms.

Point 5 is about being symptomatic with an in range B12 result. Lots of useful info in above link.

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/

Best piece of advice.....

I ever got was to always get copies of all my blood test results.

Access to Medical Records (England)

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

nhs.uk/chq/pages/1309.aspx?...

Process may vary in other parts of UK.

Blood tests

Have you got recent results for folate and full blood count tests? There can be useful clues on FBC test as to whether B12, folate or iron deficiencies are possibilities.

b12deficiency.info/b12-test...

Has GP considered ordering MMA, homocysteine and Active B12 (Holotranscobalamin) tests? Results of these tests may be affected if you have been supplementing B12.

Macrocytosis

patient.info/doctor/macrocy...

Full Blood Count and Blood Film

You mention in first post that B12 has dropped and iron levels are falling. Low iron can lead to small red blood cells (microcytosis) and B12 and/or folate deficiencies can lead to enlarged red blood cells (macrocytosis). So iron deficiency can mask effects of B12 or folate deficiency on red blood cells.

labtestsonline.org.uk/tests...

patient.info/doctor/periphe...

Folate Deficiency

patient.info/doctor/folate-...

Neurological Symptoms

Do you have any neuro symptoms eg tingling, pins and needles, tremors, tinnitus, memory problems, balance issues plus other possible neuro symptoms?

Recommended UK treatment for B12 deficiency without neuro symptoms is...

6 B12 loading jabs followed by a jab every 3 months

Recommended UK treatment for B12 deficiency WITH neuro symptoms is...

A B12 loading jab every other day for as long as symptoms continue to get better then a jab every 2 months

See NICE CKS, BNF, BSH links for more info on UK B12 treatment.

If yes to neuro symptoms, have you been referred to a neurologist?

NICE CKS link further up page suggests GPs should seek advice from a haematologist for patients with B12 deficiency with neuro symptoms.

There is a window of opportunity for B12 treatment to be effective. Left too long, there is a risk of permanent neurological damage.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord, available to PAS members only.

pernicious-anaemia-society.... See Page 2 of articles/leaflets

Blog post from Martyn Hooper's blog, mentions SACD

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

Help for GPs

1) PAS website has section for health professionals. They can join PAS for free as associate members.

pernicious-anaemia-society....

2) PAS library section has leaflet "An Update for Medical Professionals: Diagnosis and Treatment" available to PAS members only. Some UK forum members have passed this to their GPs.

pernicious-anaemia-society.... See Page 1.

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

Sadly, many on this forum have struggled to get a diagnosis and adequate treatment. B12 deficiency is not always as well understood as it could be amongst GPs and specialists. I suggest being well prepared for any appointments where B12 might be discussed. Do you have anyone supportive who can go with you to appts? Even better if they have read up about B12 deficiency and PA.

I am not medically trained, just someone who has spent years trying to find out what is wrong with me.

Good luck with finding answers.

ella2b profile image
ella2b in reply toSleepybunny

GP hasnt thought about because still in normal range.

It was a IgA anti-endomysial antibodies test for ceoliac and breath test for H.pylori.

I was testes for paracyts at the time of coeliac test and that was negative.

Recent HB was 130 or 13. Folate was 8.

I do have symptoms, SOB, tingling fingers and toes, fatigue, palpitations. Feeling weak.

I get tremors too but atribute that to dystonic reaction/familial tremors.

Thank you for the links i shall have a look.

Sleepybunny profile image
Sleepybunny in reply toella2b

Hi,

If in UK and with the symptoms of b12 deficiency, my understanding of UK B12 guidelines is that you should be treated even if B12 is within normal range.

See BMJ and BSH links in my post above. See UK NEQAS B12 Alert in following link.

b12deficiency.info/b12-writ...

"IgA anti-endomysial antibodies test for ceoliac"

In UK, my understanding is that this test is used as a second line test when tTG IgA test gives an inconclusive result eg a weak positive.

Are you sure this is the only Coeliac test you had? Have you got access to your medical records?

Due to previous difficult experiences, I don't trust what I am told unless I have copies of results in my hand.

Have you been able to track down any recent Full Blood Count results (known as Complete Blood Count in USA)?

Flowchart link in my post above, makes it clear that in UK, people who are symptomatic for B12 deficiency should have an IFA, Intrinsic Factor Antibody test whatever their B12 level.

I think it is possible that your GP has not read the BSH Cobalamin and Folate Guidelines.

"I get tremors too but atribute that to dystonic reaction/familial tremors."

B12 deficiency can sometimes be misdiagnosed as other conditions eg Parkinsons. See next link.

b12deficiency.info/misdiagn...

Misconceptions about a B12 deficiency (English language article from Dutch b12 website)

stichtingb12tekort.nl/weten...

Marz profile image
Marz

Having scrolled through your posts on other fora I am wondering if you have had Hashimotos ruled out. Many of your symptoms would also fit auto-immune thyroid disease. Hashimotos is known to be a cause of absorption issues and sadly in the NHS thorough testing is very rarely carried out leaving people undiagnosed or very poorly treated.

The complete testing required is - TSH - FT4 - FT3 and the Anti-bodies TPO and Tg. The NHS do test the TSH - occasionally the FT4 and rarely the FT3 - which is the most important one. Only the TPO antibody is tested - but the Anti-Tg should also be tested.

Have you had your VitD tested ? Needs to be around/over 100 if you are in the UK. VitD is anti-inflammatory - steroidal - pro-hormone .... so much more than a vitamin.

B12 is metabolised mostly in the Terminal Ileum before returning to the liver - so with IBS this could put the process in difficulty ! I have Crohns so having had lots of surgery I have to inject B12. I also have Hashimotos ...

Sleepybunny profile image
Sleepybunny in reply toMarz

Hi again,

May be worth putting any thyroid results on Thyroid UK forum on HU.

Thyroid Blood tests

thyroiduk.org/tuk/testing/t...

thyroiduk.org/tuk/testing/i...

Marz profile image
Marz in reply toSleepybunny

ella2b - think the reply above was for you. 😊

ella2b profile image
ella2b in reply toMarz

Hi, iv had TSH measured regularly it crept up to 5.5 but now ia back down to 1 so only TSH has been tested but not t3/4 ect.

Iv had borderline low vid D despite again the multivitamin and being in spain.... not had it checked for a while.

Have you ever used medichecks?

Marz profile image
Marz in reply toella2b

No I have not used Medichecks as I live in Crete and can have any test I need - although I do pay for some ! Medichecks is used by 1000'on Thyroid UK as it is the only way to have the correct testing done. I will post the link for you below ...

thyroiduk.org.uk/tuk/testin...

Blue Horizon is another company that is well used.

If your TSH fluctuates then it could indicate Hashimotos so it is very important to have both the FT4 and FT3 tested along with both anti-bodies. TSH is a Pituitary Hormone that tells the Thyroid to pump out T4 which is a storage hormone. With the correct nutrients in place - like B12 - Folate - Ferritin and VitD - it will convert into the ACTIVE thyroid hormone T3. T3 is needed in cell of the body - with the biggest demand from the brain.

Again VitD can be low with Hashimotos - as it was in my case.

Always important to have the TSH tested at the same time of day for comparison - early in the morning is best - and fasting - just water. TSH fluctuates throughout the day and and after food !

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