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Have I got pernicious anaemia?

13 replies

fluschmoo · 06/06/2011 19:12

Does anyone have any knowledge/experience of pernicious anaemia? As a background, my mum has had it for many years and it does tend to run in families.

I have had a blood test for iron-deficiency anaemia and my levels are lower than normal. I have been feeling incredibly tired and this week, my legs and hips are aching really badly. I feel quite sick and have no appetite. My memory is getting worse and I struggle to think clearly.

Have had a lot of other blood tests which have ruled out other obvious stuff.

The doctor also asked me whether I had trouble swallowing which I don't really but sometimes I feel like food isn't going down very well.

Any thoughts? Be gentle with me because I am not good with health stuff and am feeling very anxious so anything will set me off into a spin.

Many thanks.

OP posts:
EldonAve · 06/06/2011 19:16

just get your B12 level checked
it's a quick blood test
what else have they checked you for? thyroid?

fluschmoo · 06/06/2011 19:18

Eldon, they've checked me for thyroid and diabetes etc. Feeling so rough at the moment. I am seeing the doctor tomorrow so will get my B12 levels checked hopefully.

OP posts:
mummylouise · 06/06/2011 19:22

how low is ur iron level? have they checked ur clotting?

Nullius · 06/06/2011 19:24

Yes you need B12 levels checked and these must be checked before you are given suppliments, especially folate. He should know that though, he is a doctor after all!!

Could be folate deficency alone, and if you are given stuff for that it will mask B12 results, thats why you need them first.

With pernicious anemia you lack intrinsic factor, so you will need to have injections. They can check this when they give you supplements, if your levels dont go up then you obviously arent absorbing them.

Nullius · 06/06/2011 19:27

Another thing, just straight forward deficency can make you suprisingly ill, get folate levels checked aswell, especially if you have numbness in hands or legs.

fluschmoo · 06/06/2011 20:02

Nullius thanks for that. What are folate levels? Is that the same as iron deficiency?

OP posts:
whomovedmychocolate · 06/06/2011 20:11

My mum also has it - I get low level anaemia and clotting issues now and then. I have to take meds to make my blood clot more during my periods etc. Tis a bit of a bugger but I've lived with it for so long now it's more of an irritation than a disease IYSWIM.

The official screen for pernicious anaemia does include a full blood count and a reticulocyte count these days. It's much better than it used to be. But if you are diagnosed expect to run the gauntlet of consultants as it can have some interesting side effects which need monitoring. Because I have a heart murmur as well as funny blood I showed up as having a very high likelihood of developing it - but never have.

Fingers crossed for you.

Nullius · 06/06/2011 20:21

fluschmoo its a defincency of folic acid basically, the same thing they give you in pregnancy. Low levels of it can make you feel pretty ill, its not the same as iron deficency but you sometimes get them together. Other signs are hair falling out, crap nails etc, but it helps neurological stuff in your body hence the numbness and why you need it in pregnancy.

Pernicious anemia is quite rare, but if you had low B12 levels than it probably is that, unless you are vegetarian. We mainly get B12 from meat so in the west deficency is rare unless you lack intrinsic factor.

fluschmoo · 06/06/2011 20:32

Thanks WhoMoved and Nullius. My mum developed pernicious anaemia when she was in her late 30s and has had B12 injections ever since. My iron levels were only just under the norm about 2 months ago but I feel really awful at the moment. I struggle to do anything strenuous without getting out of breath and I struggle to remember common words and cannot concentrate on anything without my mind going in a different direction.

Something wrong I'm sure. WhoMoved, have you been told that you may get it because your mum has it? What symptoms did your mum have with it.

Nullius thanks for the info on folic acid. My hair is falling out but it always has to a degree.

I'm just thinking along the lines of the pernicious type only because my mum has it.

OP posts:
Buddhastic · 09/06/2011 07:13

I have pernicious anaemia as does my brother. I suspect my Mum has it too and I am in the midst of nagging her to get tested. I am just about to start on monthly injections previously had been on injections every three months but having stomach trouble so Doc has 'upgraded' me. I forget words when my levels are low, get out of breath(it's called the sighs) and the tiredness is like a vampire has sucked all the blood out of me. It was such a relief to be diagnosed as I felt like I was a hypochondriac. My brother had been on anti-depressants for over a year before I insisted he get tested as had been reading up on symptoms. His levels were very low and soon after he had his loading dose he came off his ad's. It was truly amazing. Have a look at the following website. A lot of the people on there have not been diagnosed early enough so it can be a bit scary reading but they are so helpful and know their stuff. You may find you know more than your Doctor about PA, as it is not that common, after reading up on it. I will keep checking in on this page but in the meantime here's the website www.pernicious-anaemia-society.org/. Good Luck

Buddhastic · 09/06/2011 07:18

PS Nullius is correct in that folic acid will mask B12 deficiency. I still don't know why I have it as I am not a vegetarian and according to my last blood test I am producing Intrinsic Factor. The test is not reliable though according to my Doctor so am attending a gastroentologist and eventually will visit the haematologist and may eventually figure it all out!

whomovedmychocolate · 09/06/2011 07:51

My mum was diagnosed in her teens - I think she was always a bit anaemic. With me, I was told I might develop it - probably need a test again actually it's been a while.

I've got used to feeling like crap though - I have children Hmm Grin

whomovedmychocolate · 09/06/2011 07:52

Dead link from buddhastic - try this one

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