I’m confused if I have a deficiency o... - Pernicious Anaemi...

Pernicious Anaemia Society

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I’m confused if I have a deficiency or not?

rustydog profile image
24 Replies

Hi everyone,

I am new to posting on here.

I honestly don’t know if I am deficient or not and am not getting anywhere with my GP.

I have had some chronic health issues for many years and they have been getting worse the last few years.

I have awful digestive issues (nausea, acid, excessive gurgling, bloating, pain, diarrhoea etc) had endless tests and told its ‘just’ IBS, I have zero appetite due to the gut issues. Nothing seems to ease these symptoms.

I am knackered to the point of exhaustion.

Daily, (absolutely annoying) tinnitus - drives my insane but told I just need to learn to live with it.

Was very iron deficient until iron infusions this year. Ferritin was 3 now 34 (not sure if this is relevant to a B12 deficiency).

I often feel weak, shaky and tired with palpitations as though I have a sudden drop in blood sugar levels.

I suffer daily bad anxiety and depression.

Very thinning hair.

I get tingly finger tips (mainly the left first 3 fingers). Sometimes he tip of my tongue tingles too.

I get a really sore tongue with sore patches. This comes and goes and no idea what causes it. I was told many years ago it geographical tongue?

I often get a ‘fuzzy’ feeling in my head, I suppose a bit like dizziness

I have only had my B12 tested once, that was in 2017 and my level was 340. The GP said that was well within the normal range and was never discussed again.

However, I was just on a FB IBS group asking about my awful daily gut issues and a lady came on saying she had B12 deficiency and that my levels are really low regardless of what my doctor said.

It’s got my wondering if my symptoms could be all related?

Obviously, I have no idea what my levels are 5 years on. My diet is poor due to my gut issues and lack of appetite so maybe worse. I have a doctors appointment soon and will ask.

Could my symptom be indicative of a B12 deficiency? Is 340 low or did that lady on the FB group get this wrong?

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24 Replies
Steph0077 profile image
Steph0077

this sounds like my story get your B12 and folate levels checked again asap if it was 340ng/l in 2017 it may be well low now, you sound like you have all the symptoms get CHECKED AS SOON AS YOU CAN, your in the right place people on here will rally round with advice and support, but sounds like you may have a malabsorption problem like myself, come back and let us know what your levels are get all vit checks if you GP will do and a complete iron evaluation not just ferritin, but sound extremely low too! Good luck don’t take no fir an awnser 👍🏼

rustydog profile image
rustydog in reply toSteph0077

Thank you so much. I have a GP appointment tomorrow. Should I ask for b12, all iron, Vitamin d and folate?

Steph0077 profile image
Steph0077 in reply torustydog

absolutely spot on, and anything else they think of, please come back and let us know how you get on 👍🏼❤️

Steph0077 profile image
Steph0077 in reply torustydog

how did you get on?

rustydog profile image
rustydog in reply toSteph0077

The GP says she will do an array of blood tests, including B12. The blood test is next week. Thanks for asking 😊

Steph0077 profile image
Steph0077 in reply torustydog

that’s great news 👍🏼 I’ll keep a look out for your update 🤗

EllaNore profile image
EllaNore

You sure do have all the symptoms of B12d. 340 is on the lower end. But for sure have it checked again as it is probably very low. However, there are times where b12 levels are being masked by something else. So ask for b12, MMA, IFAB, and homosistene tests. Even if you have to pay for it privately. You're symptoms are pretty unmistakable for B12d. GP's just don't know much about b12, Pernicious Anemia or your gut and they are all linked together. Good luck. Everyone here will help you as you go through this. This forum is very helpful. Let us know what you find.

rustydog profile image
rustydog in reply toEllaNore

Thank you so much for your advice. It’s all so confusing. I’ve limped along feeling so off for years and have gotten nowhere fast from the GP’s I’ve seen. I had to ask for the iron infusion, they were happy with me crawling through life with ferritin of 3!

EllaNore profile image
EllaNore in reply torustydog

You are very welcome. I hope you find your answers. Good luck with your journey. We're always here.

wedgewood profile image
wedgewood

Yes , your symptoms sound very much like B12 deficiency . Could be Pernicious Anaemia ,is B12 deficiency caused by an autoimmune condition . I’ll send you some information which might help you to narrow it down . But the fact that you have IBS symptoms leads me to P.A. .With this condition , your parietal cells are destroyed by antibodies that you produce . Those cells provide The intrinsic factor which is needed for the absorption of vitamin B12 , and also stomach acid , which is needed for absorption of all vitamins, minerals etc . Stomach acid also helps to keep your stomach flora ( good bacteria ) happy .Lack of it enables bad bacteria to thrive and that causes symptoms like reflux , stomach pain , bloating etc . I needed B12 injections and a good probiotic to get rid of those symptoms .

How to diagnose Pernicious Anaemia 

by  elimination when you have B12 deficiency symptoms . 

if you are not vegan or strict vegetarian.

If you do not take Metformin or PPIs ( proton pump inhibitors e.g.Omeprazole ) any  acid-negating preparations and other pharmaceutical drugs ( look up on the internet ) 

If you do not abuse Nitrous Oxide ( laughing gas) 

If you do not have fish tapeworm 

If you have not had surgery to your digestive system, then you probably have P.A. Then , also if you can tick 4 of the following ———

Low serum B12 

Symptoms of  B12 deficiency (Google to find  out - and there are many symptoms.

Gastric atrophy restricted to the corpus and fundus  

Intestinal metaplasia in the stomach ( can be caused by Helicobacter Pylori.infection 

Macrocytic anaemia ( enlarged red blood cells) and not enough normal sized 

Hypergastrinaemia (various causes including Helicobacter Pylori infection .)  Of course a positive result for an Intrinsic Factor Antibody test(  IFAB) is conclusive proof of Pernicious Anaemia, but , in about 50% of P.A. patients , the test comes back as negative. 

High Homocysteine occurs in untreated or insufficiently treated Pernicious Anaemia patients , but there are also other causes for it . 

High levels of Methylmelonic acid can  also be indicative of Pernicious Anaemia.( In blood or urine ) 

Don’t forget that this information does not come from a medical source , but from someone who went undiagnosed with  pernicious anaemia for many years , and has an irreversible symptom for that reason . By trial and error ( and gross financial depletion ) I have arrived at the above .  I did get a conclusive diagnosis.I was  lucky to get a positive IFA test , obtained through a private doctor ,which was acknowledged by my GP , but I could not get sufficient injections ( only allowed 1 every 3 months ) So now I self inject weekly, and keep well, and have to cope with the irreversible symptom . 

Reading posts on the forum has been very informative. Best wishes . 

You can have P.A. even if your B12 reading is normal. It is called functional ,” when the Intrinsic Factor Antibodies interfere with the laboratory assay “. Many doctors do not know this . You should be diagnosed on your symptoms , not a blood test result There is huge ignorance in the medical profession about this condition .

.

BUT PERNICIOUS ANAEMIA IS THE MOST COMMON CAUSE OF VITAMIN B12 DEFICIENCY . . ..

rustydog profile image
rustydog in reply towedgewood

Wow! Thank you so much, that is so helpful. I have suspected b12 issues for some time but because the doctor said it was all ‘normal’ I went away and struck that off as a potential for my symptoms. Thing is, GP’s never ask about you as a whole, just the symptoms and the want to treat those. I want to get to the root cause of my issues. I’ve had gut issues/tiredness/weakness/anxiety and depression etc for so long and nothing I try helps. I’ve suspected that I have had low stomach acid for ages, they never ask but I have a poor diet due to being ‘stuck’ on the low fodmap diet for years which, I know, is far from ideal and also having a very poor appetite due to the gut issues, it’s a vicious cycle. I will look into everything you have mentioned.

Yahaci profile image
Yahaci in reply torustydog

Being told my b12 level was normal meant that like you I closed that door. I asked countless doctors and they usually blanked me. Happy to put me on anti depressants though! I also had the same symptoms and have been going round the houses. It is not psychological, anyone physically incapacitated for no apparent reason, is down. No amount of thinking right will make a jot of difference. Good luck tomorrow.

WiscGuy profile image
WiscGuy in reply torustydog

Wedgewood has provided very good information. Especially that B12 deficiency with neural symptoms should be diagnosed based on symptoms. Diagnostic tests can sometimes help, but only one is definitive, and that is the intrinsic factor antibodies test, and half of people with these antibodies are missed by this test.

A good list of B12 deficiency symptoms is provided by the Pernicious Anemia Society:

pernicious-anaemia-society....

Sleepybunny profile image
Sleepybunny

Hi,

From personal experience I can tell you it's possible to have severe symptoms of B12 deficiency with a normal range result.

UK guidelines suggest that people who have the symptoms of B12 deficiency should be treated even if serum (total) B12 is within range.

Look up Functional B12 deficiency, if you have time.

This is where there is plenty of B12 in the blood but it's not getting to where it's needed in the cells so the person develops deficiency symptoms.

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

b12deficiency.info/what-to-...

Unhappy with Treatment (UK info)

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

Point 5 in above link is about being symptomatic for B12 deficiency with an in range serum B12 result.

Blog post about being symptomatic for B12 deficiency with an in range serum B12 result.

b12deficiency.info/your-ser...

If you think PA is a possibility, worth joining PAS who can offer support and pass on useful info.

PAS membership is separate to membership of this forum.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

Lots of useful leaflets/articles on website and a page for health professionals.

Testing for PA

pernicious-anaemia-society....

Have also read that a pepsinogen test may be helpful.

Symptoms

Do you have symptoms consistent with B12 deficiency?

Symptoms of B12 Deficiency (folate deficiency also mentioned)

pernicious-anaemia-society....

b12deficiency.info/signs-an...

b12d.org/admin/healthcheck/...

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

b12-institute.nl/en/symptom... (B12 Institute Netherlands)

Symptoms of Peripheral Neuropathy (damage to peripheral nerves)

nhs.uk/conditions/periphera...

Peripheral neuropathy can be associated with B12 deficiency and sometimes with folate deficiency.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

PAS article about SACD, sub acute combined degeneration of the spinal cord

pernicious-anaemia-society....

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

Next link about causes is from a Dutch B12 website

b12-institute.nl/en/causes-...

UK B12 documents

NHS article about B12 deficiency (simply written)

nhs.uk/conditions/vitamin-b...

Includes the statement

"But some people can have problems with their normal levels of these vitamins, or may have low levels despite having no symptoms.

This is why it's important for your symptoms to be taken into account when a diagnosis is made."

BSH Cobalamin and Folate Guidelines (aimed at health professionals)

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

Summary of BSH Cobalamin and Folate Guidelines

pernicious-anaemia-society....

Includes the statement

"In the presence of discordance between test result and strong clinical signs of deficiency, treatment should not be delayed to prevent neurological impairment"

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

BNF Hydroxocobalamin

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

NICE CKS B12 deficiency and Folate deficiency

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

Above document includes the statement

"Note: clinical features of vitamin B12 deficiency can occur without anaemia and without low serum levels of vitamin B12."

There are new NICE guidelines in development for Pernicious Anaemia and B12 deficiency. Should be published in 2023.

nice.org.uk/guidance/indeve...

If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment.

BNF Folic Acid

bnf.nice.org.uk/drug/folic-...

See Cautions section in above link which says that folic acid should never be given on its own for PA (Pernicious Anaemia) or other megaloblastic anaemias caused by Vit B12 deficiency as this may lead to SACD, subacute combined degeneration of the spinal cord.

Local B12 deficiency guidelines

CCGs (Clinical Commissioning Groups) were replaced by ICBs (Integrated Care Boards) in July 2022. It's likely that ICBs will take on the clinical guidelines of the CCGs they replaced.

Each ICB/Health Board is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency. Worth tracking down local guidelines for your area of UK and comparing them with BNF, BSH and NICE CKS links.

If you can't find them online, try submitting a FOI (Freedom of Information) request to ICB or Health Board asking for a link to or copy of local B12 deficiency guidelines.

Two useful B12 books

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

Martyn Hooper started PAS (Pernicious Anaemia Society).

UK BNF treatment info is out of date in book. See BNF hydroxocobalamin link.

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

Very comprehensive with lots of case studies.

Misconceptions

Unfortunately, B12 deficiency is not always as well understood by health professionals as it should be.

B12 article from Mayo Clinic in US

The Many Faces of Cobalamin (Vitamin B12) Deficiency

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

Table 1 in above article is about frequent misconceptions about B12 deficiency that health professionals may have.

Diagnosis and Treatment Pitfalls

(From B12 Institute in Netherlands - units, ref ranges, treatment patterns may vary from UK)

b12-institute.nl/en/diagnos...

I am not medically trained.

Sleepybunny profile image
Sleepybunny in reply toSleepybunny

Hi again,

You mention iron deficiency and symptoms that are consistent with B12 deficiency.

Have you you got recent results for folate and Vitamin D?

Forum members often report deficiencies in iron, folate and Vit D as well as B12.

If a person has both folate and B12 deficiency, B12 treatment should be started first.

Coeliac disease

Have you been tested for coeliac?

NICE guidelines for Coeliac disease suggest that anyone with unexplained B12, folate or iron deficiency should be tested for coeliac.

nice.org.uk/guidance/ng20

If you were tested in past and got a negative result, check that the doctors followed the recommended diagnostic process...some don't.

A person with coeliac disease will get a negative result in tTG IgA test (looks for antibodies to gluten) if

1) they have IgA deficiency. GPs should test Total IgA to see if person has IgA deficiency.

2) they were not eating enough gluten prior to blood being tested

NICE recommends eating plenty of gluten in more than one meal per day for several weeks before testing blood.

There are other tests for coeliac disease.

More info on Coeliac UK website

coeliac.org.uk/home/

GUTS UK website

gutscharity.org.uk/

Links to forum threads where I left detailed replies with lots of B12 deficiency info eg more UK B12 documents, more B12 books, B12 films, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.

Some links may have details that could be upsetting.

Some of the info will be specific to UK.

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

healthunlocked.com/pasoc/po...

rustydog profile image
rustydog in reply toSleepybunny

Tha k you so much for all the info, I will look through it all tomorrow in preparation for my gp appointment tomorrow afternoon. I have been tested for coeliac via endoscopy biopsies and they were negative. I haven’t had my vitamin d tested for about 5 years, that was 49 then and also folate a few years ago was 10.

I had most of these symptoms until finally near deaths door I was diagnosed with coeliac disease, anaemia is a big red flag … b12 injections are needed monthly for coeliacs, your blood levels will not show it as you need a healthy stomach to convert it so you can have lots in your blood but it’s not absorbed, have an injection, you can get them from beauty salons ect and go on a strict gluten free diet or get tested. Blood tests are not always reliable I was diagnosed through biopsies. Also take Lmethylfolate.

rustydog profile image
rustydog in reply toTanyanarialucia1965

I’ve had an gastroscope where they took biopsies for coeliac disease but it came back clear.

Gen89 profile image
Gen89

low iron levels could also contribute to some of those symptoms. Ask for your b12 and folate to be done again. If your b12 levels have reduced by a significant amount then even if you are not below normal levels it demonstrates that your level is decreasing.. this could be due to other reasons than PA eg low meat diet, absorption problems for other reasons than PA. The cause doesn’t affect treatment, unless you don’t have enough meat in your diet when tablets may work, in that if your levels are low then you need supplementation of some sort and if not yet low but levels are decreasing it suggests you aren’t absorbing enough despite eating enough b12 sources so should be monitored to see if decreases even more with time. It seems lots of people with low b12 levels also have problems absorbing iron. Does IBS affect this? Definitely ask for another blood test. I have had no success in getting my go to do MMA or homocysteine tests. She says those have to be done in a hospital setting. Not sure if that’s just an excuse!

rustydog profile image
rustydog

Thanka, I’ll ask for these things to be rechecked, I have an appointment later today 🤞

Kazania profile image
Kazania

Good luck with your appointment

Littlelodge123 profile image
Littlelodge123

low iron could be causing any and indeed all of those symptoms. 340 is NOT a low reading in and of itself. You need another test and if it has fallen substantially then you have a strong indicator of PA. Ask for instrinsic antibody test (note it is negative in up to 60% of cases). Ask for homocysteine and MMA test which if over range strongly indicate PA as does a gastric test. At this stage you cannot say with any certainty you personally have PA - that is really important to understand.

Get a fecal elastase test to check pancreatic enzyme levels which could also be the cause of your stomach issues.

Good luck and do come back and let us know how you get on.

rustydog profile image
rustydog in reply toLittlelodge123

That’s great, thank you.

Dizzart profile image
Dizzart

I was diagnosed with lichen planus / geographical tongue by my dentist who photographed my mouth and immediately sent the image to the oral department of the local hospital, which is what should have happened to you. As far as I can gather there is no magic cure but they can advise and offer antibiotics etc. Mine comes with gut problems and itchy spots etc but nothing as serious as you. If you have a half decent dentist he should do the same as mine 👍🏻 Good luck

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