Misdiagnosed Pernicious Anemia?? 2 D... - Pernicious Anaemi...

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Misdiagnosed Pernicious Anemia?? 2 Differnt Drs Opinions Im confused!

Oberley
Oberley

Four years ago Blood test B12 was 209. Dr started me on B12 sublingual. Then week later gave me injection Cynocolbium, thenShe sent me to lab for intrinsic Factor, Gastric Partial test. She did not order Homeocistine or MMA. The Intrinsic Factor said Positive. Gastric Partial Cells said Eqivical . So she said I had Pernicious Anemia.

I had 47 injections of Cynocolbium that summer, and every shot made me feel no better, (not sure if it was Cynocolbium reaction) My B12 levels were up to 2,000.

I had found a New Dr (Internal Med) to help with on going symptoms, She ran a Homeocistine and MMA said They were Normal and I Didn’t have Pernicious Anemia.

The thing is I did NOT have a break from B12 before she did the test.

And since the 1 st Dr never ran Homeocistine and Mma at time of Intrinsic Factor to confirm.

I haven’t had a shot since 3 years ago , just been taking sublingual, my B12 is down to 480 and I feel worse with Symptoms, memory loss, tremors, pins needles in lower legs, insomnia, chronic Diahrea., no energy, .....

Do you know of any other test I could get to definitely see if I have Pernicious Anemia?

Someone once said a Bone Marrow test ...?? Sounds painful. And expensive.

If I actually have PA and haven’t been getting shots, maybe its the reason Im so sick, can it cause neurological problems? I know this sounds confusing, Hopefully someone will respond, i also have Hashimotos thyroid. High RT3. Thank you

7 Replies
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Your Intrinsic FActor Antibodies test was positive so you have Pernicious Anaemia, and must therefore have injections for LIFE . Having the injections will have corrected your Homocysteine level , so now they are normal . They will revert to low levels if your injections are not reinstated . You must get them back ASAP . Very important . If you fail , come back here for help . Are you in the USA?

Oberley
Oberley
in reply to wedgewood

I am in USA. I haven’t had injections since 2015.

The first Dr who said intrinsic factor was positive had me on B12 sublinguals for a week before test. And day of test I had shot before the blood draw to test for intrinsic factor. Could that have given a false positive?

Also if I talk her into shots how often would I get them?

clivealive
clivealiveForum Support

You may also need to get your iron and Folate levels tested Oberley

Oberley
Oberley
in reply to clivealive

My iron was good. However my folate rbc was high. My ferritin was 58.

What type of columbium is best. I dont tolerate Cyno or Methyl ?

clivealive
clivealiveForum Support
in reply to Oberley

Sorry I don't know about columbium as I'm not a medically trained person.

Personally I take 1 – Iron Ferrous Fumarate 210mg every day and cyanocobamalin injections every three weeks as I've had Pernicious Anaemia (a form of B12 deficiency) for more than 46 years.

Here in the U.K. the B12 injection normally prescribed is hydroxocobamalin

I wish you well.

Gambit62
Gambit62Administrator

a) IFA will give false positives if done too close to a B12 injection - so if the blood was taken immediately after the result will be inconclusive

b) MMA and homocysteine are tests that can help diagnose a B12 deficiency - they do not establish the cause. Neither would have been an appropriate test after a loading shot.

c) IFA gives false negatives 40-60% of the time depending on the exact test so whilst it is good for showing that you have PA (unless done too close to an injection) it can't be used to rule out PA. British standards refer to IFAB negative PA as a result of this limitation.

d) the fact that your levels are falling despite taking high dose oral suggests that you do have a B12 absorption problem - and treatment would generally be the same whatever the cause

d) - link to an article on thyrogastric syndrome - high probability of having both hashis and PA

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

e) huge overlap in symptoms of hashis and PA so unravelling what is going on

f) elevated gastrin levels might be an easier test - though not sure that it is recognised as a test relating to PA - or endoscopy to look for damage to the ileum.

Hi,

Have you looked at Pernicious Anaemia Society website?

PAS (Pernicious Anaemia Society)

Based in Wales, UK. Has members in other countries.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769717 answerphone

B12 Deficiency Info website (some info may be UK specific)

b12deficiency.info/

B12 Awareness (USA website)

b12awareness.org/

Stichting Tekort (Dutch B12 website with English articles)

stichtingb12tekort.nl/weten...

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. Some info may be UK specific but lots of interest to anyone with B12 deficiency.

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

Has several case studies, think it includes at least one USA case history.

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

Very comprehensive with lots of case studies.

There is also a pediatric version of this book, aimed at parents "Could It Be B12? Pediatric Edition: What Every Parent Needs to Know".

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

There are many causes of b12 deficiency. See links above.

Have you ever been tested for Coeliac disease (spelt Celiac in USA)?

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

For H Pylori infection?

patient.info/health/dyspeps...

For internal parasites eg fish tapeworm?

As Gambit62 says , it's possible to have IFAB negative PA.

This flowchart from a UK B12 document shows when IFAB negative PA can be diagnosed in UK. I'm not sure if IFAB negative PA is recognised outside of UK.

stichtingb12tekort.nl/weten...

"Do you know of any other test I could get to definitely see if I have Pernicious Anemia?"

Have you ever seen a gastro-enterologist?

If they do an endoscopy, they may be able to spot gut damage due to PA, Coeliac disease, H pylori infection etc.

UK used to use a test called Schilling test to diagnose PA but this is no longer available in UK. Not sure if still used in USA.

en.wikipedia.org/wiki/Schil...

Complete Blood Count (Full Blood Count in UK) may have useful clues as to whether B12, folate and iron deficiencies are possible. Do you have recent results for CBC?

labtestsonline.org/tests/co... See section on what test result means.

Have you ever had a blood smear, also known as blood film?

labtestsonline.org/tests/bl...

"maybe its the reason Im so sick, can it cause neurological problems? "

Untreated or under treated B12 deficiency, whether due to PA or another cause can lead to severe deterioration including spinal problems.

PAS news item on Neurological Consequences of PA

pernicious-anaemia-society....

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

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

Blog post from Martyn Hooper's blog about PA, mentions SACD

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

More B12 info in pinned posts on this forum.

I am not medically trained.

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