Pernicious anemia

[helen_1]

I am just wondering if anyone on here has got pernicious anemia, i have had this for 12 years now and have injections every 3 months but i looked on a website and now im really scared about what it can do and also the uk is worse for treating it i have been suffering badly with brain zaps and im not on any medication apart from b12 injections and vitamin D supplements as i have low vit D and found out the brain zaps could be lhermittes sign. I am really freaking out over all this been to see doctor about the zaps and got dismissed and told its the low vit D,considering i have had pernicious anemia for 12 years its only recently i got really scared about it and wishing i never had it and i am more worried the doctors dont even give me regular blood tests or checks i only have test if i take ill i am really panicking over this is there anyone else who suffers this

[rachael t]

Hi i avnt been told i have prenicious anemia just low b12 ive ad two 3 month injections and waiting on blood results to see if need anymore its all confusimg isnt it x x

[Daisy Sue]

yep... i have B12 deficiency.. used to have injections 3 monthly, now have them 8 weekly as i was getting the symptoms before the next jab was due... also my Vit D was 'untraceable' not long ago, so i had to have a mega dose of that..

i think with pernicious anemia, once you're on the jabs, the docs pretty much relax as they know it's going in your blood stream, and your B12 levels should then be ok.. i never have mine checked specifically, but occasionally have a FBC done and it shows up then... always ok since i started the jabs.

[zippy]

I was going to post about this too.
I take a strong multivitamin and my last bloods werent right. My red blood count was low and packed cell volume was low and I tested positive for gastric antibodies. My gp said all these usually indicate that you have pernicious anaemia. He said you also are usually deficient in b12 and folate but my results were really high but that's because I take strong vitamins. So I don't know if I am masking the anaemia or does it not matter because they only give you bit b12 to correct it anyway.
I am getting odd symptoms that can be with anaemia but because my b12 and folate were high they aren't interested.

[AuntieMoosie]

Hello helen:)

I too have Pernicious anemia. Mine was diagnosed Autumn of last year.

I had 6 loading injections given in 2 weeks to start with, and I'm now on 3 monthly injections and so far as I can tell, I seem to be doing ok :)

Hun my very strong advice to you would be to be careful what you read on the internet and what sites you visit for that information. There are many self proclaimed "experts" on this subject who seem to put just about everything and it's wife down to Pernicious anemia, in fact, in my opinion they seem to become totally obsessed with it. I searched and searched for information about Pernicious anemia and even joined a site, I was only there for a short while though as I just didn't find their advice at all helpful, in fact it just confused me and blinded me with science!!

Hun my belief is this, if you are being regularly treated and looked after by your doctor and GP's surgery, then you shouldn't let this condition frighten or worry you in any way :)

All the wild, horrendous stories that you may have read on the internet are mostly about people who were not being treated for the condition. Also, contrary to popular belief on some internet sites, I believe that the treatment, diagnoses and care of people with this condition, is very good here in the UK. I was very quickly diagnosed and very quickly treated :)

Hun if you're at all worried and you need to have your mind put at rest, then I would strongly advise you to go to your doctor and have a good chat with them, steer clear of anything on the internet, just go straight to your doctor and get the information straight from the horses mouth so to speak :) :hugs:

[helen_1]

the website i got this imformation from was pernicious anemia society the website was given to me by my brother in laws mum who is a nurse as i was telling her i am getting alot of symptoms which i think is down to the pernicious anemia,her husband also has the same thing she seemed to know all about it and told me to look at the site and to push my gp into doing a bloodtest to check what my levels are but when i went to the gp she dismissed me and said its all anxiety related i have been getting extreme tiredness a month sometimes 2 months before my next b12 jab,pins and needles,brain fog,memory loss,weakness and recently these brain zaps and also weight loss so i cant help but worry and panic over it especially when my gp dismisses me and wont even see what my b12 levels are,i tried to talk to her to find out more about pernicious anemia but she just said you are being treated every 3 months so you shouldnt have any problems so right now i am in a right panic about it all and just cant calm myself down

[rachael t]

So how often does doctor test ur b12 as i sed b4 ive ad 2 b12 injections so was bout 5 month ago my results tday sed mine r better but still need more im due one in march but like u been.avin.slite pins n needles so mayb its when due for another injection x

[helen_1]

The last blood test for my b12 levels was about 3 or 4 years ago got told by doc that because i am being treated i will be ok but my brother in laws dad has the same and he has blood checks every 6 months and he is at same doctors practice as me maybe because its because his wifes a nurse at a hospital and she knows the ins and outs of regular tests he gets them but his wife did tell me to push it with the docs cos i should be having regular checks and not to let them dismiss me but them doctors are so hard to get through to