Worried about daughter : My 19 yr old... - Pernicious Anaemi...

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Worried about daughter

Kapat1 profile image
14 Replies

My 19 yr old daughter is showing symptoms of PA just like myself. (You can read my earlier posts ) Her recent bloods came back normal , no action required ????

B12 142, folate 7.5, serum freeT4 8.2, Esr mildly abnormal, FBC mildly abnormal Erythrocytes 19 mm, mean corpusc.Hb.conc. 352

I really hope she doesn't have PA but I hate to see her so exhausted all the time ,she is existing not living !

Of course I know we have to approach the GP again but I just can't face it because I know what the outcome will be. It would be much easier if we could just pop into Boots and buy some b12!

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Kapat1
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14 Replies
fbirder profile image
fbirder

142 sounds low for B12 - what was the range? And the units (pg/ml or nmol/L)?

Kapat1 profile image
Kapat1 in reply to fbirder

On the print out it lists serum vitb12. 142ng/L >140.

Gambit62 profile image
Gambit62Administrator in reply to Kapat1

At that close to the bottom of the normal range it would be surprising if the problem didn't involve a B12 deficiency

Suggest that you go back to the GP armed with relevant sections from the papers that fbirder put together

frankhollis.com/temp/Summar...

fbirder profile image
fbirder in reply to Kapat1

So it is barely above the minimum of the range. Bearing in mind that the assay normally has an error os +/- 10% or more she could quite easily be below the bottom of the range.

The doctor needs to treat her for a B12 deficiency - because she has three warning signs -

1. She has a low B12 level

2. She has the symptoms of a B12 deficiency

3, She has a family history of PA,

Expert opinion is that the symptoms need to be treated. Download this for more info and expert documents to support it.

frankhollis.com/temp/Summar...

Kapat1 profile image
Kapat1 in reply to fbirder

That's what I'm thinking . I can't believe it !!! Now I've got her to inject as well lol

Kapat1 profile image
Kapat1 in reply to fbirder

Hi . I've just been to the GP surgery supporting my daughter to get some diagnoses on her PA symptoms B12 142 . The GP looking at her recent blood test said to her that she cant possibly have PA cause she is not anaemic ! Didn't want to listen to the information I took with me. Instead he decided not she has an under active thyroid and gave her medication for 2 months to see how see gets on!

fbirder profile image
fbirder in reply to Kapat1

Moron!

Download my summary document - frankhollis.com/temp/Summar... - and the BMJ document linked to therein. Print the BMJ paper and find the bits referenced in the summary section - "Haematological changes not essential in PA

" and highlight them.

Then send the BMJ paper, along with a letter, in the post. Explain how you realise that the information in that paper is quite recent, so he probably hasn't read about it as GPs have little time for such stuff.

It's much harder for a doc to ignore a letter as it is a permanent addition to your daughter's records. With a bit of luck he will read the rest of the paper as well - and learn a lot more than he does currently. And being a respected medical journal he should pay attention to the contents.

Kapat1 profile image
Kapat1 in reply to fbirder

Thanks for your support . I was made to feel an idiot! I can't believe his statement 'I dont want to subject her to a life long regime of injections '. If that's what she needs why deny her treatment

sue_higgins54 profile image
sue_higgins54

My B12 came back as 141 with the range being 200-800. I was given loading injections.

wedgewood profile image
wedgewood

In my opinion, B11 at a reading of 142 is really low. When mine was 150 , I was very dizzy, exhausted, confused and my feet were numb. I was also sent on my way .So I resorted to a private doctor at a Nuffield Hospital, where I was diagnosed with P.A after a positive Intrinsic Factor anybody test. I now self -inject as I cannot manage on a three monthly injection. Having P.A. Is not terrible, providing you can get the right treatment . For many people this is not possible owing to the great ignorance of the condition in the British Medical community. So, you have to take responsibility for your own health, and self-inject. It's not too expensive I estimate about £1.00 per injection of Hydroxocobalamin , which is what the NHS use. It is easily obtained from Germany . Needles and syringes come from many sources in UK. Think about it ,if you can't get the correct treatment .

If your daughter isn't vegan or a strict vegetarian, it points to her having P.A. as you have it .

Kapat1 profile image
Kapat1 in reply to wedgewood

Thanks for your speedy reply

Sleepybunny profile image
Sleepybunny

This PAS article mentions a strong genetic link.

pernicious-anaemia-society....

"I know we have to approach the GP again but I just can't face it "

Is there any way you can change to another surgery?

Has the GP got a copy of Martyn hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" which I think mentions the genetic link.

Kapat1 profile image
Kapat1 in reply to Sleepybunny

i might just look into changing surgeries on Monday

Kapat1 profile image
Kapat1

Hi . I've just been to the GP surgery supporting my daughter to get some diagnoses on her PA symptoms B12 142 . The GP looking at her recent blood test said to her that she cant possibly have PA cause she is not anaemic ! Didn't want to listen to the information I took with me. Instead he decided not she has an under active thyroid and gave her medication for 2 months to see how see gets on!

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