BananasMakeUHappy : HelloI am waiting... - Pernicious Anaemi...

Pernicious Anaemia Society

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BananasMakeUHappy

BananasMakeUHappy profile image
8 Replies

HelloI am waiting on results of intrinsic factor for PA

My blood result showed B12 at 151. I don't know what the normal range is. This site has been very helpful. Thanks for the suggestion of writing all symptoms I'm experiencing down and presenting them at appointments. I saw Dr today due to worsening symptoms (insomnia, tingling, forgetting things, fatigue, muscle/joint stiffness and recently mild stomach pain. I had already had first B12 injection 2 weeks ago, with little effect.

I've been given melatonin for sleep. Ibuprofen and Panadol for pain. The melatonin has had no impact. I'm struggling with work even though I've cut my hours back. Am self employed and concerned how long I can continue. Results of intrinsic factor due back on 14 Feb.

Usually a glass half full person -not feeling it currently.

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BananasMakeUHappy
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8 Replies
clivealive profile image
clivealiveForum Support

Hi BananasMakeUHappy

I don't know whether you in New Zealand will be able to "open" any of the links beou low.

Sorry if you can't as I am in the UK where they apply.

The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

google.co.uk/url?sa=t&rct=j...

The British Committee on Standards in Haematology - the biggest blood brains in Britain - writing in the British Journal of Haematology onlinelibrary.wiley.com/doi...

They say...

“Maintenance treatment for patients presenting without neurological deficit is with hydroxocobalamin 1000 lg i.m.every 3 months. Those with initial neurological deficit should receive hydroxocobalamin 1000 lg i.m. every 2 months. No further testing for cobalamin levels is required”.

Make a list of your symptoms and present this to your doctor and ask him to treat you according to your symptoms and (perhaps) even start you on loading doses "until there is no further improvement" according to the N.I.C.E guidelines below. Click on the link, then on "Scenario: Management" and scroll down to "Treatment for B12 deficiency"

google.co.uk/url?sa=t&rct=j...

or

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

If possible take someone with you who can validate your neurological symptoms as the doctor is less likely to pooh pooh you in front of a witness.

I am not saying that this is an easy thing to do but try to stay calm, write out what you want to say and keep to the script and be confident that you are "in the right" and your facts are correct.

I'm not a medically trained person but I've had P.A. for over 45 years and I wish you well.

according to the N.I.C.E guidelines loading doses should "continue until there is no further improvement" in neurological symptoms which include those you mentioned above so one option would be to list them and go back to your doctor asking for the injections to continue.

google.co.uk/url?sa=t&rct=j...

Click on the link, then on "Scenario: Management" and scroll down.

BananasMakeUHappy profile image
BananasMakeUHappy in reply toclivealive

Thanks Clive. Helps knowing I'm not alone. Unfortunately I can't open the links outside of the UK. I took all my symptoms to Dr in written form, my memory is so bad ATM (another symptom I told her about). She wasn't willing to prescribe any more B12 until results came in. If I don't get any sleep tonight, which looks likely, I'm going to have to at least get some proper sleeping pills. Thanks for your message. It's appreciated.

clivealive profile image
clivealiveForum Support in reply toBananasMakeUHappy

I am sorry the links were no use to you. Hopefully some of my comments between may help when speaking with your doctor, Sadly the IFA test is unreliable in that it gives false negatives in people with PA half the time. So a negative result doesn't mean that you don't have PA. However, a positive result is a sure-fire, 95% certain indicator of PA.

I wish you well.

Sleepybunny profile image
Sleepybunny

Hi,

Welcome to the forum.

Have you considered joining the Pernicious Anaemia Society?

pernicious-anaemia-society....

Membership is open to people worldwide and it's separate from membership of this forum.

Health professionals can join PAS as associate members.

pernicious-anaemia-society....

Your doctors might be interested in joining Club B12.

club-12.org/

Club B12 is a group of doctors and researchers looking into B12.

They have regular zoom meetings.

Guidelines

Have you hunted online for national or regional guidelines on treating B12 deficiency?

There are other forum members from NZ so might be worth searching forum posts for their threads.

Two useful B12 books

Published a few years ago so some bits may need updating.

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

Martyn Hooper is the former chair of 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.

Some other B12 websites

B12Info.com website

b12info.com/

B12 Awareness (US website)

b12awareness.org/

Stichting B12 Tekort (Dutch website with English articles)

stichtingb12tekort.nl/weten...

I am not medically trained.

BananasMakeUHappy profile image
BananasMakeUHappy in reply toSleepybunny

Thanks very much. I'll look in to those.

Sleepybunny profile image
Sleepybunny

A few more links that might be useful...

"Results of intrinsic factor due back on 14 Feb"

A negative or normal rage result in Intrinsic Factor Antibody test does not rule out PA.

Your doctors should know this but it's possible they don't.

Diagnostic flowchart from UK document that mentions Antibody Negative PA.

(hopefully you can access this one)

stichtingb12tekort.nl/engli...

Testing for PA (from PAS website)

pernicious-anaemia-society....

I have also read that the following tests may be useful in helping to diagnose PA -

gastrin/ pepsinogen/ indirect bilirubin levels/ serum lactate dehydrogenase.

There are many other possible causes of B12 deficiency besides PA.

Has your doctor discussed diet with you?

Have you been tested for coeliac disease?

UK guidelines suggest anyone with unexplained B12, folate or iron deficiencies should be tested for coeliac. Usual tests are tTG IgA and Total IgA.

People with coeliac disease can get a negative result in tTG IgA test if they

1) have IgA deficiency

Total IgA test checks for IgA deficiency

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

H Pylori infection?

Any possibility of an internal parasite eg fish tapeworm?

One sign that an internal parasite might be present is an increase in eosinophils, a type of white blood cell. Eosinophil results can be found with Full Blood Count results (also known as Complete Blood Count).

Has your doctor reviewed any medication you are on?

There are some drugs that have been associated with low B12 levels.

Causes/Risk Factors for PA/B12 deficiency

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12info.com/causes/

b12info.com/whos-at-risk/

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

Oneash profile image
Oneash

Ibuprofen can exacerbate anemia, according to my GP. I was told to avoid asprin too. Have you had loading doses? You should notice some difference after 6 injections in a fortnight.

BananasMakeUHappy profile image
BananasMakeUHappy in reply toOneash

Thanks to everyone for your replies. All very useful. No loading doses prescri ed. Had second injection yesterday, last one was two weeks ago and now on three monthly. GP doesn't want to do anything else until intrinsic factor results arrive. I don't know why they take 3 weeks. I don't like taking Ibuprofen so just taking the Panadol. I've also purchased 50mg B12 pills as a top up. Using mindfulness to help with symptoms and will join the PA Society if things haven't improved or positive result next week. Thanks again for taking the time to reply.

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