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Pernicious Anaemia

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#1 mrshappymum

Posted 16 January 2013 - 03:34 PM

I was diagnosed with this around 18 months ago, I was feeling very run down and now have b12 shots every 2 months.  

I have never spoken to anyone who has this so I thought I would see if anyone of this forum has it and would tell me about their experience and how they feel now.

I feel a lot better having the regular injections but still feel run down and tired a lot of the time.

Thanks original.gif

#2 tily

Posted 16 January 2013 - 03:39 PM

I have had this for about 20 years to varying severities. Actually have good B12 levels at the moment but always need to watch it. Can be very difficult to live with.

#3 mrshappymum

Posted 16 January 2013 - 09:21 PM

Thanks Tily.

Bump ... anyone else?

#4 OneProudMum

Posted 16 January 2013 - 09:24 PM

I am living a bit of a nightmare ATM with B12 deficiency.
My level is 120-something. To say it has affected me is an understatement. I had my first shot today and I have another in 2 weeks time.

#5 Shamoo

Posted 16 January 2013 - 09:56 PM

Hi there  original.gif

I was diagnosed back in 2011. I now have the regular shots & limit processed meats/carcinogens (bbq'/anything burnt to a crisp)
My gp at the time had done iron tests on me many times, noticed my levels were VERY low but nothing had ever been confirmed  mad.gif This went on for a few years
I've just had a baby and i remember my OB checking my bloods throughout, but i also had gestational diabetes so was well monitored  wink.gif

My Dad has lived with it for about 10yrs, he has his regular B12 shots & watches what he eats. Minimal processed meats (hams and bacon are on mums watch list, he sneaks it every now and then  wink.gif )
He also has his insides checked out (up the back way unsure.gif ) once a year, i know this gives him a peace of mind to check if any damage had been fine

I'll try to find my results, i know they were bad. Seriously bad.

Sorry if I'm all over the place, on my phone  original.gif

#6 mrshappymum

Posted 16 January 2013 - 10:08 PM

Thanks everyone.

Hmm that is interesting about the processed meats. I have read about people having different symptons. I have always had a very low tolerance to alcohol, literally when I drink 2 glasses of wine or more I would vomit (sorry for tmi). I have a sensitive stomach aswell but haven't really made any changes to my diet but I should probably look at that.

My main symptom is just fatigue. I have such a slump in the afternoon, but I never give in to it - I just struggle through. Sick of the struggle though.

My levels were about 130 when first diagnosed and I think I am up to 170 now with regular shots.

Can I ask you girls, what your main symptoms are?

#7 mrshappymum

Posted 16 January 2013 - 10:11 PM

Oh and also my grandfather had it, but my parents dont. My grandfather actual died from it in the 70's but only because he didn't seek treatment early enough, wouldn't happen these days.

I suffer from mild depression and anxiety, and although I am on anti-depressents it really hits me in waves. I have read links to Vitamin b12 deficiancies. Interested if anyone else has this.

#8 OneProudMum

Posted 16 January 2013 - 10:18 PM

Yes I am plagued with Anxiety! I am lying here in bed wondering if I have a brain tumour.

#9 Shamoo

Posted 16 January 2013 - 10:42 PM

My main symptom was fatigue but i also used to catch nearly every little cold/flu/bug that was going around. It really messed with my immune system.
I remember the gp saying that because i had 2 blood immune deficiencies i really lucked out  glare.gif
It took awhile for me to physically feel any different when having the shots, probably a couple of months??
I have missed my shots a few times (my own forgetfulness) but my new gp always picks it up at my next appt  blush.gif they store my B12 in their medicine fridge (my 'shots' are the oral dose not injection)
I have heard that it is more hereditarily (sp?) common in families with certain lineage (i have German ancestors)

I have had anxiety problems in the past & both anxiety and depression during my pregnancy  

eta: Pressed reply too soon, Stoopid phone.

I hope you start to feel better soon, keep up date with your shots you will feel it if you miss too many in a row.
Although the anaemia won't go away it is manageable  bbighug.gif

Edited by Shamoo, 16 January 2013 - 11:12 PM.

#10 Atomac

Posted 16 January 2013 - 10:47 PM

I was diagnosed years ago but only started getting shots when I was pregnant with my daughter. My levels were about 9. When my levels are getting low I find that I get headaches, am tired but can't sleep and my hair falls out.

#11 OneProudMum

Posted 16 January 2013 - 10:54 PM

QUOTE (Atomac @ 16/01/2013, 11:47 PM) <{POST_SNAPBACK}>
I was diagnosed years ago but only started getting shots when I was pregnant with my daughter. My levels were about 9. When my levels are getting low I find that I get headaches, am tired but can't sleep and my hair falls out.

9? Holy crap! You must have been terrified?!

#12 Atomac

Posted 16 January 2013 - 11:11 PM

QUOTE (OneProudMum @ 16/01/2013, 08:54 PM) <{POST_SNAPBACK}>
9? Holy crap! You must have been terrified?!

Not really. My dr had me come in for daily shots for a couple of weeks.

#13 Shamoo

Posted 16 January 2013 - 11:19 PM

QUOTE (Atomac @ 16/01/2013, 11:41 PM) <{POST_SNAPBACK}>
Not really. My dr had me come in for daily shots for a couple of weeks.

I just found my results & my subsequent frantic emails to my parents to get our family tree medical history.
At the beginning of my diagnosis/worst my levels were down to 11 (my Dad's were barely measurable at 5)

Same as Atomac I was in the gp's for numerous doses over a 2/3 week period

#14 Megs25

Posted 16 January 2013 - 11:47 PM

Not me but my son was born with no B12. They have so far not been able to work out why.

They didn't discover it until he was 11 months old but wasn't developing.

Now he has a lot of learning difficulties and delays, and mild cerebral palsy. They think it's because he had no B12 for so long.

That said, he's intrinsic factor is normal, so they still aren't sure what's going on. Interesting to hear from grown up with it.

#15 tily

Posted 17 January 2013 - 06:33 AM

I was on daily shots for a while too but haven't had one for a while and just had levels checked and was normal for about the first time ever. I have a number if gut issues and it is the lack of intrinsic factor that gets me. My lain symptom is exhaustion and some grogginess of thinking (probably linked!) also get anxiety which may all be a part of it. No family history that I am aware of but that doesn't mean it wasn't there!

#16 mrshappymum

Posted 17 January 2013 - 03:29 PM

Wow some of those levels were crazy low.

I have always have my injection on time, I can feel when I need it.

My levels are normal now but I still feel lethargic which makes me think I will be like this forever  sad.gif  I shouldn't complain - could have worse things wrong with me.

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