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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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".
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"
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.
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.
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.
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.
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.
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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