I can't even work out which part of the above is the result? I receive B12 jabs every 3 months plus take a low dose B vitamin daily (to see if I can stop my hair falling out!!) but cannot tell if this result is good, bad or indifferent? I had my last B12 jab around 3 weeks ago.
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Loobs39
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Your result is negative meaning that it hasn't picked up intrinsic factor antibodies which would confirm a PA diagnosis. However, this doesn't necessarily mean you don't have PA. It's widely published in research that a negative result alone doesn't rule it out as many people have PA without having antibodies. You should be treated based on your symptoms only.
As PlatypusProfit8077 has said, Your result is negative. Although, this is how to read this report in plain English :-
Intrinsic factor antibody level less than* 0.5 U/mL.
The computer software also writes the next bit of [0.0 - 6.9];
If the person’s blood test is less than 7 their blood result is Negative.
If the person’s blood test is between 7 - 10 their blood result is Difficult to interpret.
If the person’s blood test is greater than 10 their blood result is Positive.
May I ask why after 8 years of diagnosis of Pernicious Anaemia which was again, queried 3 years ago, your doctor is ordering an Intrinsic Factor test ?
Oh because that is how your doctors have been programmed. Please find out who your CCG, ICB, Trust or Health Board’s Data Protection Officer is.
We cannot be having this nonsense anymore.
You were diagnosed with a disease on whatever date by Dr Jekyll at Arkham Clinic. If they have not stored and retained that information on their computer system, you can report them to the Information Commissioner’s Office and they will be fined.
Loobs39, most of us self-inject because we cannot manage on 3 monthly injections. We cannot be bothered fighting medics. Plus, lovely, you have lots of other illnesses to live with.
Thank you so much for replying. To be honest, I have no idea why the test was requested? I was diagnosed with PA when my doctor realised that the symptoms (sores that didn't heal easily at the corner of my mouth, palpitations etc.) could be an indication of low B12 and coupled with the Hashi's started me on B12 jabs. Is it possible to be poor at absorbing B12 and not have PA? I seem to be fine on the 4 times a year injection but my ferritin is through the floor at 34 (15-300) and my hair thinning which is why I take a supplement. I have an appointment with the GP on Monday for something else so will ask about this too - can someone be 'cured' of PA??
GPs can be confused about what PA is. The PAS defines it as an autoimmune condition which cannot be cured.
The IF test is a good test for confirming PA as it rarely gives false positives. It is a poor test for ruling out PA as the cause of a B12 deficiency as it has a high rate of false negatives (40-60% depending on the exact methodology).
Whilst your test has come back with a negative result but, given the high rate of false negatives, this should not be used to say that you do not have PA as the cause of your B12 absorption issues.
Please also note that ferritin is a protein that is used to provide a guide on iron levels - it is generally quite a good guide but doesn't show the whole picture and should not be used as a definitive measure of iron status - a full iron panel should really be done before starting iron treatment.
Because PA reduces stomach acidity it can also affect the absorption of other minerals and vitamins. The ones most commonly affected are iron and folate so if you are having problems absorbing iron it may well be related to your B12 absorption issues.
How many Autoimmune Diseases (ADs) do you have ? There are NO CURES just management. My biological father in the 1970’s said The NHS are rubbish at Chronic Diseases which ADs are.
Doctors are not trained in Dietetics. I noted you were also on Gluten Free Guerillas. Now, the best approach is not to think along the lines of Is it possible to be poor at absorbing B12 and not have PA? But what does my body need to stop my hair thinning ? My ferritin isn’t great are my nails pitted, brittle ? My angular cheilitis, (sores around mouths ) gets better when….
This low dose B vitamin daily is it a vitamin B complex ?
Now, lovely, recently, I had a hospital appointment, the Nurse failed to introduce herself. I knew what she was going to do to My body. I have to give CONSENT for her to touch me. If not then it is equivalent to common assault and the Tort of Battery.
So, if you do not know why someone is coming at you with a needle, then just politely ask and do not expose your skin until they have explained to a level that you understand.
Sores that didn't heal easily at the corner of your mouth: known as angular cheilitis.
I had (have) this problem. Not all the time, and no real pattern to be found. When sent to an Oral Medicine consultant, he tested for cultures several times: staphylococcus and candida. Neither were found to be present -just like IFab test, maybe just taken on the "wrong" days ? Nothing was found to explain this condition anyway.
He looked at the photos I took with me and kept file copies. Since nothing was found as the cause, he could only offer management treatment - nipple cream ! - which worked within a few days and continues to work years later, as long as I remember to apply the cream every morning and night after cleaning my teeth. If I stop putting 100% lanolin cream on my mouth, the condition returns within days. So it's not a cure.
Worth trying.
My hair falling out really improved early on when both folate and ferritin were found to be low and both were treated with 3 months supplements on prescription. This was after the NHS B12 injections were started, but to be honest, it was quite difficult to determine which of the three treatments were doing what for symptoms; I was just relieved to see a change.
When I look back now , both of these symptoms (angular cheilitis and hair loss) had gradually crept up on me and had become "my normal", so it was many years before other symptoms forced me to seek professional help.
So far I have had, I think, three negative IFab tests. Martyn Hooper, the founder of the Pernicious Anaemia Society, only managed to get a positive result on the 3rd test.
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