Pernicious Anaemia Society

Intrinsic Factor Positive

Hi All, after I was diagnosed with Hashimotos last year, I thought my quality of life would improve once prescribed 100mcg T4 daily but unfortunately it has not been the case. I have been supplementing with Vitamin D and K which has improved my Vat D results. I am still exhausted, have dry scalp, hair coming out, weigh between 4 and 5 stones more than I should though I don't overeat, nails in a dreadful state and generally feel awful. My B12 results are within range so GP refuses a trial of B12 injections stating that it might put my B12 too high, refuses to increase dose of T4 and refuses a maintenance dose of D3 which is what I asked for when she asked me why I had the appointment. Her voice softened briefly and she asked me "and how are you FEELING" to which I replied "Well, I'm not depressed" Her voice hardened again and I ended up coming out of the surgery really annoyed and vowed never to see her again. As I was getting nowhere I took the plunge and ordered some tests from medichecks and here are the results TSH 0.93 (0.27-4.2)

Free T4 18.1 (12.0-22.0)

Total T4 126 (59-154)

Free T3 5.8 (3.1-6.8)

TGAb 526* (0-115)

TPO >600* (0-34)

Active B12 52 (25-165)

Folate (serum) 3.2 (>2.9)

25 OH Vit D 76 (50-200)

CRP-High sensitivity 2.2 (0.0-5.0)

Ferritin 79 (13-150)

Intrinsic Factor antibodies 82.0* (normal <6U/ml)

I now know that what I suspected is true that I have indeed got pernicious anaemia but as my B12 is within range I don't hold out much hope of getting any treatment. I have ordered another 2 checks as advised by medichecks which are Full blood count and gastric parietal autoantibodies.

I would just like to ask how I should play it when I go to see (different) GP. It has been such an uphill struggle so far and have had to self-diagnose and confirm with test results so far.

Thank you in advance for listening

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Had you taken any B12 supplements before the IFA test - this can produce false positives. Biotin can also interfere with B12 results but I'm not sure which - just as it can intefere with thyroid tests.

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No, I have never taken anything for B12, only T4 for thyroid and Vit D. Out of interest, when I do medicheck tests as suggested, does anyone know if they need to be early morning fasting like the thyroid tests or does it not matter?

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if you are asking if time of day is important for serum B12 test - no - and probably not for any other B12 tests - in a healthy individual B12 levels are quite constant because of the availability of large stores in the liver.

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Sorry, I meant the gastric parietal autoantibodies and full blood count tests. I’m fairly sure the blood count doesn’t matter but not sure of the other. I thought it probably wouldn’t but as I’m used to the thyroid tests being fasting early morning so thought it worth asking.

Am I right that the intrinsic factor test can give false negatives but not false positives (as long as you are not supplementing)? What do you think the chances are of getting injections if B12 results are in range?

Sorry to bombard you with questions but it was an uphill struggle to get thyroid meds and now this seems to be the same. My family have a history of PA and thyroid. My grandmother and mother both had PA, my mother had and my sister has Hashimoto, my cousin has PA and looks like I have them too. ☹️

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not aware of any need to do as fasting tests. IFA very prone to false negatives - but not false positives, unless supplementing

getting injections, even when out of range, is very dependent on GP.

40% of PA sufferers goon to develop hashi's - and studies give between 10% to 40% for hashi's developing PA

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I suggest taking your test results back and also a list of symptoms of PA so you can cover how they apply to you. I am assuming UK but best practice guidelines say they cannot refuse you treatment especially as you now have proof of PA.

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Thanks, I will get results together once last ones done and see what they say. I will hopefully get someone with some knowledge this time.

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