Hashimoto and pernicious anaemia..

[madness07]

Hi there!

I didn't post for awhile. I just want to ask what kind of antibody test is done for pernicious anaemia? I had a test for hashimoto antibody done around half year back and my very low b12 was discovered now, so doctor send blood to the lab for antibody test for pernicious anaemia. And they denied testing saying it's pointless since I got antibodies tested in last half year. I can't understand it since are two different conditions... Can anyone explain please.

Thanks a lot

[shaws Administrator]

I don't understand either. I have P.A and as far as I know they test the instrinsic factor (?) to know whether you have a B12 deficiency or P.A.

[shaws Administrator]

There is also a Pernicious Anaemia (HU) that you could ask for more info on P.A.

[madness07 in reply to shaws]

Thank You very much I asked in there as well. NHS in UK is driving me crazy for the second time.

[shaws Administrator in reply to madness07]

Well Madness07 we're driven to it because the people who we expect to know don't come up with answers that would sound like common sense to us.

[madness07]

Why is test denied by the lab if its different antibody? Everyone knows autoimmune are like to be in groups...

[galathea in reply to madness07]

Because there is an r in the month....  No rhyme or reason what so ever.

[Singoutloud]

The doctor probably asked for the wrong antibody test as most of them are somewhat clueless. 

[madness07 in reply to Singoutloud]

It is so hard to believe that such a thing is possible, but well will find out soon, hopefully.

[Singoutloud in reply to madness07]

Although I'm still inclined to go with my first  comment,  it could be possible that the lab refused to test intrinsic factor antibodies if your b12 level was in range.   This happened with my young son.   I managed to get mine tested but only because my b12 level had dropped into the grey area.   

[madness07 in reply to Singoutloud]

My is below the norm as well, and its 4 months since it first was discovered (on my own, no one requested it for me :))), I already have my injections being done too. The answer from the lab was clearly saying that they will not test it, as antibodies were already tested before in past 6 months etc. Yes ATPO and ATG but never IFA...

[Singoutloud in reply to madness07]

How ridiculous.   The lab is definitely at fault here then.   I would put this back in the hands of the GP to insist that the lab do the IF test that was requested.  Your doctor can't be that bad if he is prescribing injections without definitive proof of PA so hopefully he will  get it sorted for you.  Good luck 🍀 

[greygoose in reply to madness07]

I thought there was no point in testing for PA once you were on B12 injections, because the results would be skewed. The testing should have been done before you started the injections, shouldn't it? 

[madness07 in reply to greygoose]

I had blood test done first, 4 months ago in  my country, then i repeat it in uk, both showed very low b12. I was advised to wait 3 months and see what happens. After 3 months b12 was even lower than before, so my blood was send for antibody test and i started injections straight after. I am supposed to make a set of injections wait 3 months and repeat the blood test. But the antibody test was denied. So yes it was done before injections.

[greygoose in reply to madness07]

Ah ok! well, you didn't explain all that. So, what did the antibody test say? Do you have Pernicious Anemia?

[madness07 in reply to greygoose]

That's the whole point, lab said they will not do antibody test because there was antibody test done in past 6 months. The point is i have never been tested for PA only for hashimoto. So nothing makes sense.

[greygoose in reply to madness07]

No. It doesn't. They should not have started you on B12 injections before they tested for PA. It can't be done, now.

I think you doctor must have ordered the wrong antibodies, and that's why the lab won't do them. Seems like he's made a right mess of things! 

[madness07 in reply to greygoose]

I mean they got my blood from before injections for testing, so i guess it still can be done if they hold onto sample. I hope to have doctor explain it to me and have it fixed. It drives me crazy enough already.

In less than a year have 2 shits popping up in my life isn't funny. And such a treatment (second time) doesn't make it any better.

[greygoose in reply to madness07]

Well, there's a limit to how long they can hold on to blood for testing, so I Don't know if that's feasable. I Don't know what to suggest. Perhaps your doctor doesn't know there are different antibodies for different illnesses!

[madness07 in reply to greygoose]

I don't want to believe that! But if i will have 3 months break after injection, isn't then another chance to test for antibodies before eventual second set of injections?

[greygoose in reply to madness07]

That's a possibility, although I'm not sure three months is long enough. But you'll have to make sure your doctor gets his act together next time. Check on what he's actually testing for.

[madness07 in reply to greygoose]

I will speak with her on monday so will see... Thanks for answering, I will be more careful now :).

[greygoose in reply to madness07]

Good luck! Let us know how you get on.

[madness07]

I got a call from my gp today. I have been informed that, test result came back. So apparently there was a mess but after all test was done. She said my antibody came back normal. This is indeed reason to be happy. So she blamed it on diet. The thing is that I have education regarding diets from University, and I perfectly know what to eat to boost things etc. So I would never say it is diet fault. I told her that in my family  very low b12 is very common, she said it indeed maybe genetics fault. But it doesn't really tell me why is it so low. I would love to know the cause. As I said before low b12 was first discovered in November, but I do not know how long for was it low before that. And it remains low until now, even lower than before. I have been advised to redo b12 test in 3 months after this set of injections, but if it will stay low, what other reason can it be? My endo told me that antibodies has different periods and they do go up and down, obviously he was talking about thyroid antibodies, but I guess it is related to all antibodies. Is it possible that it was such a moment or is my gluten free diet working out? Or is it something else? Well lots of questions even although I know i should wait this 3 months before asking.

[Benji76]

Hi Madness. I know it’s been three years since your post here. I hope that, therefore, there is no need for this advice and things are ok for you now. However, I also know that three years can just go by without progress or answers and you can easily lose heart. The short answer here, if you haven’t found out already, is that intrinsic factor tests are not reliable. If they show a positive for Pernicious Anaemia then that’s certain. But, if they show a negative, there is a 50/50 chance that the result is unreliable - you could still have it. A doctor should know this. Not many do. Good luck!