Here we go again....: I had a g.p. appt... - Pernicious Anaemi...

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Here we go again....

Chelle1310 profile image
8 Replies

I had a g.p. appt last Tuesday (17th July) to discuss the possibility of my having B12 Deficiency, or PA. I took along with me, some paperwork that listed quite a few of the symptoms that I myself am experiencing.

After relaying everything that I thought important, including low normal B12, 263ng/L (220-700) below range Folate 2.3ng/ml (2.6-17.3) Low Ferritin 31ng/ml (10-420) and low but in range Iron 17umol/L (14-28), I got what I pretty much expected, and was bitterly disappointed at the lack of even a tiny bit of understanding.

I have not been offered anything for the Folate, and even though I explained in detail, all of my symptoms, I left the surgery, thinking "why did I bother"?

No further testing was offered, although I managed to get her to agree to test for Intrinsic Factor Antibodies.

Can anyone please tell me if I.F. testing alone will show whether I have B12 Deficiency or PA? Also what should my next course of action be?

Thank you

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Chelle1310
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8 Replies
fbirder profile image
fbirder

If the test for IF antibodies comes back positive then you definitely (well, 98%) have PA.

If it come back negative, it means nothing. Half of people with PA test negative.

Tests are meaningless. Symptoms matter. Get your GP to follow this advice from the NHS

hey.nhs.uk/wp/wp-content/up...

Chelle1310 profile image
Chelle1310 in reply to fbirder

Thank you for the link, I will give it a go..

Sleepybunny profile image
Sleepybunny

Hi,

I prefer to put queries about treatment etc into a polite, short letter. In UK, letters to GP are as far as I know, filed with medical notes so I think are less likely to be ignored.

Letters to GPs about B12 deficiency

b12deficiency.info/b12-writ...

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

b12deficiency.info/what-to-...

More B12 info

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

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

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

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/

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.

"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.

PAS (Pernicious Anaemia Society)

If you suspect PA , may be worth joining and talking to PAS.

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 from Martyn Hooper's PA blog about seeking PA diagnosis.

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

B12 Deficiency Info website

b12deficiency.info/

UK B12 Blogs

Martyn Hooper's blog about PA

martynhooper.com/

B12 Deficiency Info blog

b12deficiency.info/blog/

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-...

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 Coelaic disease.

NICE guidelines Coeliac Disease (2015 version) recommend anyone with unexplained B12, folate or iron deficiencies is tested for Coeliac disease.

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

Coeliac Blood Tests

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

H Pylori infection

patient.info/health/dyspeps...

Nitrous Oxide

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

Best bit of advice I ever got was to always get copies of all 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.

Neurological Consequences of B12 Deficiency

PAS news item

pernicious-anaemia-society....

I am not medically trained.

Chelle1310 profile image
Chelle1310 in reply to Sleepybunny

Hi, I have the, Could it be B12 book, which is what prompted me to see my g.p. in the first place. It just seems that I am constantly ignored, fobbed off etc. This is my health and my crappy quality of life that I am trying to improve. So frustrating to feel like you have to literally battle for everything these days..

Thank you for all of the information and links that you have provided for me, seems I have some reading to do..

ShelleyME profile image
ShelleyME

I don't know if this test is available in the UK, but my daughter's pediatrician identified a B12 deficiency by running a Spectracell test panel. There were several things that it tested, but it's a test that checks for deficiencies at the cellular level. Meaning, are these substances crossing the cell wall? She had been previously diagnosed with a D3 deficiency and it took several months of high dose D3 to get her above the lower limit and it showed the same on the Spectracell test. However, B12 serum levels were fine, but Spectracell showed a deficiency. She was not a vegetarian and she took multi-vitamins at the time. The only thing the doctor could tell me was that she needed methylated B12. Meanwhile, I looked up what all of this meant and figured out that it could be a methylation defect, specifically a MTHFR defect. I found an article that gave an explanation, why it was important and then it recommended to take a DNA test through 23andme (since it was the cheapest at the time). Then upload the raw data file onto Genetic Genie for free, which will pick out SNPs relating to methylation and detox. Sure enough, I and all my kids have the MTHFR defect and several other related defects. The kid who 1st got the Spectracell test would get sick taking so much methyl-B12. One of her defects makes her sensitive to methyl groups and it was recommended to take a combo of methyl, adenosyl, and hydroxy B12. It was also recommended to take methyl folate with it. Apparently, folic acid itself is not good. I have since found several paid websites that I can upload the raw data files to have SNPs analyzed.

deniseinmilden profile image
deniseinmilden in reply to ShelleyME

Wow - really interesting!

Where are you in the world, please?

Good luck to you and your family - I hope you can lead full lives with the treatment you need.

Thank you for your reply ShelleyME

Chelle1310 profile image
Chelle1310 in reply to ShelleyME

Definitely worth looking into, thanks very much for sharing.

KimberinUS profile image
KimberinUS

you might consider h pylori.

it is a root cause for b12 deficiency and reduced my iron saturation % to 20 and total serum iron to 69.

i got tested just to rule it out as i never had the main symptom of heartburn. BUT then the test came back positive.

after treatment (it took me two tries) my iron saturation percentage increased to 35 and total serum iron increased to 109.

i cant help you with how much b12 improvement you will have, as i was already getting b12 injections, due to a deficiency at 169, prior to getting tested for h pylori.

my doctor never suggested h pylori. i just read about b12 deficiency root causes, on this forum, and decided to get tested to rule it out. i had to actually argue with my doctor to test me, as i did not have heartburn, the main symptom of h pylori. so very glad i persisted.

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