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Author Topic: Really bad week - possible pernicious anaemia  (Read 230 times)

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Offline Gomubukai

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Really bad week - possible pernicious anaemia
« on: August 25, 2014, 04:01:07 AM »
I'm having a very rough week.

My doctor ordered a blood test about 3 months ago that showed really low levels of B12. I had 3 B12 injections and was told to get a blood test done in 3 months, which was today to see if the levels have gone back up to where they should be.

She told me that in the follow up test she's testing for something called 'pernicious anaemia' which is a kind of autoimmune disease that means my intestines don't allow me to absorb B12 on my own and I might have to have injections to top it up forever.

Fine. No problem.

The PROBLEM is the fact sheet she gave me which says that pernicious anaemia is usually found in conjunction with OTHER autoimmune diseases. It doesn't specify, but of course MS was the first thing to pop into my mind.

I also think I have some ACTUAL weakness in my left hand. I've been dropping things with it a lot more over the past few months - today I picked up my water bottle which was a bit slippery from condensation and I could not stop it from slipping. I put it in my right hand and no problems.

So now of course I'm afraid of MS and other autoimmune diseases that could be poking their ugly heads up at me.

Does anyone know anything about this condition?

I know I'm very lucky because the fact sheet she have me said that a few decades ago they had no idea how to treat this (if it is actually what I have) and it was actually considered fatal. It was considered along the same lines as leukaemia actually. So I'm so soo lucky to be born where they can treat it.

I'm just afraid there's another more sinister condition lurking.
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Offline mollyfin

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Re: Really bad week - possible pernicious anaemia
« Reply #1 on: August 25, 2014, 04:08:42 AM »
That does sound anxiety-provoking, but I would try not to worry too much until the tests come back.  I know the wait is awful, but it may come back negative.  And even if it doesn't, that doesn't mean something catastrophic is lurking. 

I drop things constantly, especially when I'm tired or anxious.
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Offline leah2013

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Re: Really bad week - possible pernicious anaemia
« Reply #2 on: August 25, 2014, 09:37:49 AM »
I also fear autoimmune diseases, in my case lupus... I have low iron.

Do u eat meat and animal products? I know vegetarians are in risk for B12.

Please stay positive and keep us posted!
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Going thru a rough patch! Praying for peace of mind and happiness!!!!

Offline Gomubukai

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Re: Really bad week - possible pernicious anaemia
« Reply #3 on: August 25, 2014, 04:14:36 PM »
Thanks guys.

Yeah you're right Molly the waiting is the WORST. I don't mind having to get injections forever if that's what it takes - it's really the 'other' condition that could be lurking that worries me.

I think it's the great hypochondriac standby of the unknown.

Hopefully it's nothing... The weak hand thing worries me a little bit though.

Leah - i am actually vegetarian - but my doc told me that everything else is perfect in my blood. My iron is a touch low but still well within normal so she said she doesn't think it's my diet.

I read something on that fact sheet that said besides the injections another way they found to keep the B12 levels up in a person who has this is to eat 1kg or liquidised RAW liver every DAY.

So I think I'll stick with the injections. :)
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Offline Slangevar

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Re: Really bad week - possible pernicious anaemia
« Reply #4 on: August 25, 2014, 04:38:51 PM »
A severe B-12 deficiency can cause weakness issues - your hand issue may be due to that.

Are you a vegetarian or vegan by any chance?  Or do you take antacids or PPIs like Prilosec for acid reflux?  Certain medications have B-12 deficiency as a side effect (I have to take sublingual B-12 because I'm on Prilosec), and some people just don't get enough B-12 in their diet.
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Offline Gomubukai

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Re: Really bad week - possible pernicious anaemia
« Reply #5 on: August 25, 2014, 05:45:41 PM »
I am vegetarian, but the doc said she doesn't think my diet is the problem.

I wonder if my brain is powerful enough for it to make my hand seem weak because it knows that's where my worries lie. Maybe it feels awkward because I'm focussing on it.

Health anxiety sucks.

I'm going to call my doctor tomorrow and see if the results are back. I have an appointment with her next week too for a checkup so it might be good to ask her then.

Why would they put something like that on a fact sheet? I mean, I get that it's a fact but I would rather have not known that this usually only appears with other autoimmune diseases.

Urgh...thanks for the encouraging words everyone :)
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Offline Slangevar

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Re: Really bad week - possible pernicious anaemia
« Reply #6 on: August 25, 2014, 06:33:21 PM »
Interesting... I wonder why your doc doesn't think diet is the problem?  A B-12 deficiency is a known side-effect of a vegetarian diet: http://www.health.harvard.edu/press_releases/vitamin_b12_deficiency

You'll probably have to wait and see about the weakness issue. It could be vitamin B-12 related or it could be anxiety. When I was feeling anxious a few months ago, I kept tripping over things. My husband - who never worries about anything health-related - was even starting to freak out. Fortunately I'd just had an MRI for another reason, so I didn't go to MS. And when my anxiety about the other thing cleared up, the tripping stopped.

One final thing: you need to stop reading up on pernicious anemia until you've actually been diagnosed with pernicious anemia. Right now, you have low B-12 levels. A lot of benign things can cause that. Wait until your doc gets the results before you start casting for other autoimmune conditions.
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Offline Gomubukai

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Re: Really bad week - possible pernicious anaemia
« Reply #7 on: August 25, 2014, 06:59:41 PM »
Thanks for the reply.
 
My doctor doesnít think itís diet related because everything else in my blood is apparently perfect.  I have regular blood tests because Iím vegetarian, and this is the first time anything has been wrong except for some low iron about 4 years ago.
 
The B12 has dropped really low without apparent cause and she said she thinks it might be due to my body not being able to properly absorb it.
 
Also, Iím not googling pernicious anaemia.  My doctor gave me a factsheet on the condition. :)
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Offline Slangevar

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Re: Really bad week - possible pernicious anaemia
« Reply #8 on: August 25, 2014, 09:22:58 PM »
I know you weren't Googling... I said you were "casting for other autoimmune conditions." i.e. You haven't even been diagnosed with pernicious anemia yet and you're already thinking about what autoimmune condition you might have. That's a bit like wondering what I'll wear to the Oscars when I haven't even finished my movie yet.

I know it's awful waiting for tests, but the good news is that you're in the funnel - your doctor is investigating and if it is pernicious anemia, you'll have caught it earlier than most patients (it's almost never diagnosed in people under 30).
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