Pernicious Anaemia Society
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Thanks for adding me

Hello,

I found your group by searching for high b12 levels in kids. My daughters level came back as 1500 and my dr doesn’t seem concerned but a quick google search has me very concerned and I’m trying to figure out what to do next. Is PA hereditary? How is one tested? I found info on it a few months ago when I was researching my own symptoms. I was supplementing with methylated B12 and started having horrible panic attacks which went away as soon as I stopped. I saw this could actually be a sign of a deficiency? I’ve also seen that issues with B12 can be associated with a double MTHFR mutation. Do you have any info on that or advice on how to even start getting answers? Very concerned about my 10 yr old daughter. Not only are her b12 levels high, her blood count was slightly off showing she’s fighting something off and she’s had very low grade fevers for about 5 weeks now. I’m trying not to freak out but my pediatrician isn’t really much help. Any advice would be so appreciated. Thanks.

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Yes PA can be hereditary but it is what is known as a familliar illness, this means not everyone will getit but some maybe more prone than others. I am now the third person in my family too get it. I was 14 when I started showing symptoms and was 29 when finally diganosed when my HB count was less than 4! My mum and my sister don't have it but my granny did.

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Can you tell me more about symptoms and getting tested?

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Pins and needles in fingers, hands, feet, memory issues, pale skin, bruise easily, hair loss and greying early, depression, mood swings, very unsteady on my feet and falling over alot, weight loss (2 1/2 stone in 4 weeks!!), costantly tired and having problems sleeping.

I was finally tested after loosing so much weight and had skin that was a stunning shade of "Frankinstein Green". Having my daughter was the main trigger as I was given gas during labour (a lot of it). After she was born my blood count was low so was given iron tablets, which caused more problems tan they solved.

On 12/01/2010 I went to see my doctor as I felt so ill, she took one look at me and gave me a b12 injection. I then fainted. Was taken too hospital and given blood transfusions and spent a week there where I was also started on folic acid and a loading dose of b12.

After 2 years my b12 injections were stopped!! This was fine at first but after going 3 years without any b12 injections I became so ill that ended up back in hospital for 5 weeks. I was told that I was very lucky as if I hadn't gone when I did that it was likely that I wouldn't have survived the next 48 hours!!!

I was a very long and slow recovery and have been left with a curve in my spine, nerve damage in both hands, feet and lower legs, I have trouble walking, standing and bending down.I cannot get in or out of the bath without the help of a bath chair and struggle with basic tasks, such as getting dressed - bras are a nightmare but thanks to a special charity I have been provided with magantic clips for them.

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PA is an auto-immune disorder that affects your ability to absorb B12 from your food. As such it is associated with lower levels of B12 not higher levels.

The reaction to methyl B12 sounds more like it is something to do with a COMT variant than MTHFR.

Raised levels of B12 in blood can lead to a B12 deficiency at the cell level - a functional B12 deficiency. Ironically, the easiest way of treating this is actually to raise and keep B12 levels very high so enough trickles past the reaction that is trying to stop B12 passing in to your cells. B12 is not toxic.

You can find a list of the symptoms of B12 deficiency here

pernicious-anaemia-society....

This is a link to an article on the use of high serum B12 levels as a diagnostic tool

watermark.silverchair.com/h...

there are also a number of genetic variants that can affect the bodies ability to metabolise B12 in cells.

However, it is also the case that the symptoms of B12 deficiency overlap with a number of other conditions.

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Thank you for all the info!

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