I am a PA sufferer ( I was diagnosed approx 8 years ago & have injections every 4 weeks) and my daughter (13 yrs old) is showing a lot of the symptoms that I suffered with for many years, she has neurological symptoms & has a low folate level. My Dr has refused to treat her for PA but has instead said that she will refer us to a Pediatrician anywhere in the UK. Does anyone have any experience with any UK Pediatrician Consultants who understand B12 & Folate deficiency? Any recommendations would be greatly received. We are willing to travel ANYWHERE to find someone who understands the condition. Many Thanks.
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It was after shed been misdiagnosed several times. She wasnt right since 9yes old.
Got very ill at University.
Even did a brain scan limber puncture but nor a b12 test!
It eadnt until she was hospitalised a few years later that her b12 was very low and folate and megobalastic aneamia. It was found by a general doctor . All the specialists she saw missed it as did Gp.
If your daughter has neurological symptom s get a referral to a neurologist .ivr not found one with a special I terese in B12.
My daughter got good treatment at Addenbrooke and The National for many more tests. As by then it had caused POTs . And a nerve problem in her spine changed symptoms .
Main thing is get more testing g done.
Has the Go done the basic blood tests ? N12 folate iron vit d ferritin
Thank you, thank goodness your they eventually found the low B12 in your daughter. I hope she is well now? We have had blood tests done. B12 was 290 & Folate 3.3 (range 3.7-18.7). I feel if I can get to see someone who knows about the condition at least I will be able to have an educated discussion. At the moment I think I know more than the GP, I know I need to get her diagnosed but I can't find the right person to help. It's so frustrating. I'm at the end of my tether!
Whilst waiting for referrals Gp makes. A neighbour has taken this route and is being seen privately recently .
Everything on hold still here in the NHS. . I've been waiting since January.
You are right any b12 treatment needed is to be done before folate. But that if b12 low
Low folate give similar symptoms if you look it up.
Her b12 is in range so MMA and homostistene blood tests are sometimes used if b12 in range but symptoms present. (Functional b12) intrinsic factor blood test.
I dint know much about those. On here many have posted if you go through topics. They have science backgrounds and know more.
So frustrating I know very well. Have to kero pushing for more blood tests that are relevant.
Yes we have had the blood tests. Low Folate 3.3 (range is 3.7-18.7), B12 was 290 & she was taking Iron tablets already. The GP tried to prescribe her Folic Acid, but I explained that this can be dangerous if PA is un-diagnosed. The GP wouldn't treat for B12 deficiency even though she understood that the B12 levels are flawed & are not used to diagnose now, the GP said the B12 level of 290 was fine. I did explain that my daughter was having neurological symtoms: Passing out, pins & needles etc so should be treated as if PA was diagnosed but the GP refused. My only option is to find a Pediatric Consultant who I can have an educated discussion with & who understands the PA condition. I'm at the end of my tether!
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It;s been great chatting to you.
Update on blood test - sorry long post
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Help re B12 and folate treatment please...
Is my low folate causing B12 to be low. .New to me and I'm a bit lost!
