Went into my docs for results of the IF test. Told by a frosty receptionist "the blood test is normal" I asked for a printout of the result and was informed I would have to request this in writing and why did I need this as the test said "no further action required". So decided to go to boots and buy B12 tablets and folic acid as I am so exhausted and can't wait until July for next neurologist appointment. I explained to the pharmasist about the GP refusing to treat me and she was appalled.
I'm going to get the results of IF test results (I will request in writing) and send it all off to my neurologist and get him to try help as constantly sending me for MRIs and other expensive tests might trigger him into hopefully intervening.
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lorrilang
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Hi Lorrilang, don't give up! I feel your frustration - I've been waiting for my IF test results back since November and despite my GP chasing them, they haven't appeared! I ended up going to a private hospital yesterday and paying for the test to be done myself - obviously not had the test results back yet (11 working day turn around), but so far so good in terms of service from the provider and staff at the hospital. I'll let you know how I get on - we shouldn't have to go to these lengths though should we! Keep going and don't give up! You're doing everything you can.
Even if you test negative for the antibodies to the Intrinsic Factor, it doesn't mean you don't have Pernicious Anaemia . The test is notoriously unreliable .
I believe that Martyn Hooper , our chairman,tested negative at least twice before he was diagnosed ! I'm afraid that taking the B12 oral supplements will skew any blood test results . If you have P.A.. your body can really only use the B12 if you have it injected . Your symptoms should be treated , not the blood test results . Your doctor should know about the unreliability of the I.F. Antibody test .
My Gp practice is useless and I cannot change as other practices in area are full.
Gp told me that "you definitely don't have pernicious anemia" that was before the IF test.
It doesn't matter about me taking the tablets now myself and upsetting any blood tests as because the last B12 was just within the normal range they won't test me again.
I really need to try something asthe brain fog, exhaustion , balance etc are really getting to me. I had to give up driving last year due to the balance problems but my GP couldn't give a hoot.
That was a ridiculous statement for the doctor to make , that you " definitely did not have P.A. ". I got my diagnosis when I had a very high blood serum B12., because I was plastered all over with B12 patches , and I had been taking Methylcobalamin sub- lingual lozenges by the fistful, as I was so desperate . I have to say that in my desperation , I had gone to see a private GP at a Nuffield hospital . That was the best investment that I gave ever made- Cost ? £160 for consultation and the blood test ( 2 years ago )'My own doctor then had to start treating me through gritted teeth . But the 3 monthly regime was insufficient to keep symptoms at bay, so now I self-inject (about £1.00 a time ) My life has changed enormously for the better .
Ask yr gp in writing why you definitely don't have P A. Of course, she may be right... but why? If she thinks it is not possible to have PA without macrocytic anaemia your gp is a turnip.
As far as i am aware your surgery cant refuse to give you a printout. Unless it will be in your interest not to because of health issues which it could contain,
The Information Commissioner's Office has held that the medium of a request is not important - for example, a tweet on twitter suffices in some circumstances.
Requiring a written request is excessively bureaucratic when all that needed to be done was press a button to send it to the printer. If you had already been told the result then even the potential excuse that a doctor needs to permit release of information fails.
If they ask again for request in writing lorrilang , I'd suggest you ask them for a piece of paper and write it there and then and hand it to them.
this is link to the pages on the ICO website - which is relevant to UK requests - gives a template to use for requesting the data - but also makes it clear that it doesn't have to be on paper
Have you considered giving GP a copy of flowchart in BSH Cobalamin guidelines which mentions Antibody negative PA (PA where IFA (Intrinsic Factor antibody)test is negative.
If you are in England, you are entitled to have access to your medical records online, along with registering for repeat prescriptions and making appts online, called Patient Online Programme. It is not the full records but does include test results. I can see mine the day after the test. Details are in NHS choices/GP Services /online services.
All practices are being monitored on the percentage of their patients using online services. Print out the section from NHS Choices and take it with you in case they try saying they know nothing about it. Practices have all had a lot of information about starting. It doesn't apply in quite the same way in Wales and Scotland, but they are also developing their own programmes
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