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diagnosis and symptoms

Bluebell7575 profile image
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Hello everyone - first post and looking for feedback. I have been low in B12 for some time. I would go to the doctor and told I need to take a supplement or a jab but no one ever looked into why I was deficient so I thought nothing of it. Fast forward to June of this year and I feel terrible - low B12, iron deficiency anemia requiring an infusion, weekly B12 shots, tingling in hands/feet. Was sent to a hematologist who ordered IF and APC bloodwork after being on B12 shots for 8 weeks and having a jab less than 24 hrs before bloodwork. Both came back positive. I have had an endoscopy and colonoscopy - both normal and no signs of gastritis, no reflux, no h pylori.

My question is - if PA is end stage autoimmune gastritis - how do I have normal scopes and no GI issues? I also recently tested positive for Hashimoto’s as well. Wondering if I received a false positive for IF and the PCA are related to thyroid? Any thoughts?

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Gambit62 profile image
Gambit62Administrator

injection very close to an blood test is known condition for high likelihood of false positives so it may well be that you had a false positive and something else was causing the B12 absorption problems

Bluebell7575 profile image
Bluebell7575 in reply toGambit62

Thank you! This is my understanding as well.

Sleepybunny profile image
Sleepybunny

Hi,

A few links that may be helpful....

Two useful B12 books

B12 books I found useful

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

Martyn Hooper started PAS (Pernicious Anaemia Society).

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

Very comprehensive with lots of case studies.

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has some overseas members.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

B12 Deficiency Info website

b12deficiency.info/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort

(Dutch website with English articles)

stichtingb12tekort.nl/weten...

B12 Institute - Netherlands

Has useful symptoms and causes lists.

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

b12-institute.nl/en/symptom...

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 (wrong ideas) about B12 deficiency that health professionals may have.

Films and videos about PA and B12 deficiency

PAS conferences

pernicious-anaemia-society....

Films about B12 deficiency

b12deficiency.info/films/

There are other forum members here from Canada so may be worth searching forum posts using term "Canada".

I think it's possible to get B12 ampoules over the counter in pharmacies in Canada.

When I searched online for "B12 deficiency guidelines Canada", I found some Canadian documents.

Have you been tested for coeliac disease (also spelt celiac)?

UK guidelines suggest that anyone with unexplained B12, folate or iron deficiency should be tested for coeliac disease. It's possible for a person with coeliac disease to get a negative result in some coeliac tests if

1) they have IgA deficiency

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

Have you looked at Canadian Celiac Association website?

I'm not medically trained.

Bluebell7575 profile image
Bluebell7575 in reply toSleepybunny

Hello and thank you for your reply. Yes, I’ve been tested twice for celiac and it’s negative. I’m told I have PA based on my bloodwork but just concerned about the timing of the bloodwork and the untreated Hashimoto’s and whether that is the issue. The lack of GI symptoms is another reason I’m wondering about the diagnosis. I am on the Canadian group as well but wanted to get other insights. I’m currently SI as B12 is available over the counter here in Canada. I just ordered Could it be B12 so hopefully will get a better understanding!

Cherylclaire profile image
CherylclaireForum Support in reply toBluebell7575

If bloods showed large floppy red blood cells, PA would be the likely cause. This is not evident in everyone with PA (about 60% of them), but can be the most obvious sign for medical professionals, although macrocytosis could be masked by supplementing folate - red blood count would be skewed and red cells appear "normal". Folate and ferritin being common additional deficiencies, you can see why sequence of treatment for deficiencies can cause a diagnostic problem.

40-60% of those with PA would get a positive IFAb test result, meaning that around half would not.

If B12 deficiency symptoms not improved by B12 injections, a functional problem could be the cause - which would normally be confirmed by testing MMA. High or raised MMA would indicate that the injected B12 is not linking to MMA in bloodstream, so the MMA left increasing in blood. Renal problems (blood test) and SIBO (breath test) would rule these out as causes for a raised MMA. Small intestine bacterial overgrowth thrive on certain vitamins stolen from you - which include B12.

There is a strong link between Hashimoto's and PA - and all autoimmune conditions seem to like the company of others (vitiligo, psoriasis and others - over 100 others available !) In Martyn Hooper's book, he quotes from medical guidelines (2014) :

Some (PA) patients also develop Hashimoto thyroiditis and 50% have thyroid antibodies; conversely, parietal cell antibodies are found in 30% of patients with thyroiditis.

You are right about the unfortunate timing of the IFAb blood test, and the possibility of a false positive. Your particular case is complicated by the fact that IFAb negative cannot rule out PA, and the known link between the two conditions - otherwise, you could just request another test.

Assume you are still having b12 injections ? If so, at what frequency ?

Bluebell7575 profile image
Bluebell7575 in reply toCherylclaire

Thank you for this response! It’s confusing because I was microcytic possibly due to iron deficiency anemia at the same time requiring an iron infusion. I received a B12 shot every week for 8 weeks but now self injecting as required as I was going to be moved to monthly. I just don’t seem to have the PA symptoms like GI issues that many others have and my symptoms seem closer to Hashimoto’s. Reference range for Hashimoto’s was less than 35 and my result was greater than 600 but my other thyroid results were normal. Negative for celiac as well. I should note that many in my family (aunts, cousins) as well as my mother have Hashimoto’s and celiac.

Marz profile image
Marz in reply toBluebell7575

I have Hashimotos - diagnosed back in 2005 in Greece. The TSH FT4 FT3 were in range but antibodies TPO & Tg were high. I have a B12 issue due to surgery. I am also a member of Thyroid UK here on HU - many of us frequent both fora. You may wish to post your results on Thyroid UK for more suggestions. Hashimotos is a known cause of absorption issues resulting in Low B12 - Folate - Ferritin - VitD. Lots of good advice to help you on your way. You can be gluten sensitive without being a celiac with Hashimotos.

Cherylclaire profile image
CherylclaireForum Support in reply toBluebell7575

Glad to see that Marz has responded. She helped me a lot when trying to find answers and make sense of all of this.

Vitamin D - yes, didn't think of that too. Get it checked. I was found to have osteoporosis of the spine - but was only sent for a Dexascan because I'd broken both shoulders in seperate incidents and was in (?) late 50's when first checked, I think.

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