Need advice

[Elleeee]

I’m 19 and was diagnosed with a b12 deficiency last year. My levels where below 100. So really low, I felt so ill. I had numerous tests to find out why I had this deficiency, I had the PA test 3 times just to be sure they all came back negative. I’ve had every blood test imaginable everything is normal. I’m not a vegetarian, my diet is fine and no one In my family has this. Should I be concerned? I’ve been offered an endoscopy but have been told it’s not necessary. I really don’t want one of those and don’t think there’s any point

[Marybrown06]

Hey,

I am sorry to hear you felt so ill...

Have you also run H Pylori and coeliac tests?

Do you have stomach ache?

[Elleeee in reply to Marybrown06]

I’ve had both of those everything negative and no

[clivealive Forum Support]

Hi Elleeee

Anyone at any age, can become B12 deficient. However, certain people are at an elevated risk. They include the following:

Vegetarians, vegans and people eating macrobiotic diets.

People aged sixty and over

People who’ve undergone any gastric and/or intestinal surgery, including bariatric surgery for weight loss purposes (Gastric bypass).

People who regularly use proton-pump- inhibitors. H2 blockers, antacids, Metformin, and related diabetes drugs, or other medications that can interfere with B12 absorption.

People who undergo surgeries or dental procedures involving nitrous oxide, or who use the drug recreationally.

People with a history of eating disorders (anorexia or bulimia).

People with a history of alcoholism.

People with a family history of pernicious anaemia.

People diagnosed with anaemia (including iron deficiency anaemia, sickle cell anaemia and thalassaemia).

People with Crohn’s disease, irritable bowel syndrome, gluten enteropathy (celiac disease), or any other disease that cause malabsorption of nutrients.

People with autoimmune disorders (especially thyroid disorders such as Hashimoto’s thyroiditis and Grave’s disease) Type 1 diabetes, vitiligo, lupus, Addison’s disease, ulcerative colitis, infertility, acquired agammaglobulinemia, or a family history of these disorders.

Do you see yourself among any of the above "people"?

[Elleeee in reply to clivealive]

No I’m not

[wedgewood]

It is possible to have the PA test 3 times and it to be negative , and you could still have PA. The test is NOTORIOUSLY unreliable . FOLATE /folic acid is also important . Has your doctor not treated you in any way ? Have you tried supplementing with a vitamin B complex? ( amazon ) Of course if you do have PA this will not help , and only send up your B12 readings , but not help your condition . In your position I would change doctors .

Suggested reading - Could it be B12? by Sally Patcholok an American book (Amazon ) and books by our founder Martyn Hooper (Amazon)

[Sleepybunny]

Hi,

I am not medically trained.

Might be worth joining PAS or a relative joining and talking to them. Costs £20 a year.

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

PAS support groups in UK

pernicious-anaemia-society....

PA is difficult to diagnose.

pernicious-anaemia-society....

pernicious-anaemia-society....

I believe Martyn Hooper tested negative on Intrinsic factor Antibody test more than once.

"I had the PA test 3 times just to be sure they all came back negative"

It's possible to still have PA even if Intrinsic factor Antibody test result is negative or normal range.

Is your GP aware of Antibody Negative PA? It's mentioned in flowchart link below and link to BSH Cobalamin and Folate Guidelines.

Appointments

Some GPs may be dismissive about a young person's concerns. Is there a supportive adult who can go with you to appts? Even better is they have read up about B12 deficiency and know the guidelines.

UK B12 Documents/articles

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...

There is a summary of b12 documents in third pinned post on this forum that I personally found helpful.

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

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

Risk Factors for PA and B12 Deficiency

Is there a family history of auto-immune conditions?

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

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.

UK B12 blogs

There are stories on Martyn Hooper's blog about people seeking a diagnosis and of young people with PA/B12 deficiency.

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

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

B12 Deficiency Info blog

b12deficiency.info/blog/

Blood Tests

Most important thing I learned was to always get copies of all my blood test results. I learnt to do this after being told everything was normal and then finding abnormal or borderline results on copies.

Access to Medical Records (England)

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

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

Link about What to Do Next

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-...

"Have you also run H Pylori and coeliac tests?"

"I’ve had both of those everything negative and no "

Have you seen actual test results or were you just told over the phone that they were negative?

Which tests did you have for Coeliac disease?

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 in UK but I think it's an important test as people with IgA deficiency will need different tests for Coelaic disease.

Did you have Total IgA test? If not, I don't see how your GP be sure you do not have Coeliac Disease?

NICE guidelines Coeliac Disease (2015 version)

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

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

H Pylori

What tests did you have for H Pylori?

patient.info/health/dyspeps...

See section on how is H Pylori is diagnosed.

Functional B12 deficiency

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

Are you taking any medication eg PPI drugs that may interfere with B12 or folate levels?

pulsetoday.co.uk/clinical/m...

There are other medicines besides PPI drugs that may interfere with B12 levels.

See Risk factors links for more info.

Nitrous Oxide

Have you had any surgery involving nitrous oxide? Nitrous oxide can inactivate b12 in body.

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

Low stomach acidity

Some forum members are diagnosed with high stomach acidity due to gut symptoms eg acid reflux but then find out they actually have low stomach acidity. The symptoms of high and low stomach acid are similar.

drmyhill.co.uk/wiki/hypochl...

Low stomach acid can lead to difficulties absorbing B12.

B12, folate and iron

Changes in levels of one of these may influence levels of others. Do you know what your B12, folate and ferritin levels are?

Parasites

Have you ever eaten raw or undercooked fish? Visited a country where intestinal parasites are common?

There have been cases of people with severe b12 deficiency due to infection with fish tapeworm. There may be other intestinal parasites that can cause B12 issues.

b12deficiency.info/blog/tag...

nhs.uk/conditions/tapeworms/

Unhappy with Treatment (UK info)?

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

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/

Support for B12 deficiency

PAS support groups

pernicious-anaemia-society....

Not everyone in PAS has a diagnosis of PA, partly due to difficulty in diagnosis.

B12d.org holds meetings near Durham.

b12d.org/event

B12 Deficiency Info holds occasional B12 cafe meetings in Leicestershire.

b12deficiency.info/b12-pop-...

There used to be a Thyroid and B12 support group in Kilmarnock, it posted on Thyroid UK forum. Not sure if this group is still active.

Good luck with finding answers, at least you are getting b12 treatment even if you are unsure of the cause.

Do you have any neuro symptoms eg tingling, pins and needles, tinnitus, tremors, memory problems, balance issue splus other neuro problems? See Symptoms lists.

If yes, then in UK, a person with b12 deficiency with neuro symptoms is supposed to get....

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

From what you said elsewhere, I think you are on standard UK treatment eg

6 loading b12 jabs followed by a jab every 3 months

How many loading jabs did you have?

If you have neuro symptoms then being on standard treatment pattern may not be enough to prevent further deterioration.

See BSH Cobalamin and Folate Guidelines , a quarter through guidelines, for more info on UK b12 treatment.

Link about under treatment of b12 deficiency with neuro symptoms.

b12deficiency.info/b12-writ...

Link about B12 deficiency in children including teenagers

b12deficiency.info/children...

"I’ve been offered an endoscopy but have been told it’s not necessary."

An endoscopy may pick up signs of gastritis/damage to gut due to PA, Coeliac disease or other conditions.

nhs.uk/conditions/gastritis/

[Ryaan]

Are you now on B12 injections ?