New here but sent over from the Thyroid UK group.Had private blood tests done for my 16 year old daughter to check thyroid function etc.Tests have shown up Vit B12 & Folate levels as follows....
I would be very surprised if she isn't highly symptomatic and in need of pretty urgent treatment. The folate will also need to be treated but this should ideally start about 24 hours after treatment starts for B12 deficiency.
They will probably want to repeat tests to double check the results as the B12 is unusually low - this blood sample needs to be sufficient to also cover testing for IFA and possibly for MMA and/or homocysteine.
From response on the thyroid forum it looks as if there are also thyroid issues going on.
Yes she is very symptomatic and after reading the link its all making more and more sense! She's been unwell for a long time but anytime we see the doctors they always seem to put it down to her chronic constipation thats making her so lethargic etc.She hit rock bottom last week emotionally and knew i just had to find out more for myself! So many times i've felt like hitting my head off a brick wall at gp's/hospital paediatrics as my gut instint has always told me there was more to it.😩
Hi Trezbuc. I agree with Gambit62 and RosyG. Your daughter needs treating immediately.
Unfortunately, many GP's (and consultants too) are not always well-informed about B12 deficiency (as you have already found out).
There's lots of information in the PAS pinned posts to the left of this page when you log on (or at the bottom of the page if using a phone) that will help you to understand more about B12 deficiency - and about what doctors should be doing in terms of treatment.
To give you the heads up - your daughter should be treated with 6 x loading doses of B12 on alternate days and then an injection every other day until no further improvement - perhaps for many months. This is called the neurological regime - not many doctors appear to have heard of it.
If you have trouble getting this treatment for her or need any further help or advice please post again and we can help further.
Very best of luck....let us know how it goes 😄.
P.s folate and B12 work together so what Gambit says about treating folate deficiency too is equally important.
link to flowchart in BSH Cobalamin guidelines below. Makes it clear that patients symptomatic for B12 deficiency should have an IFA (Intrinsic Factor Antibody) test and start initial B12 treatment. Some UK GPs may not be aware of this document.
IFA test can help to diagnose PA (Pernicious Anaemia) but is not always reliable. It is still possible to have PA even if IFA test results are negative (called Antibody Negative PA).
1) "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Book is up to date with UK guidelines. he has written 2 other books about PA and B12 deficiency.
2) "Could it Be b12" by Sally Pacholok and JJ. Stuart
Is your daugter vegetarian/vegan? It's possible that Gps may assume her low b12 is due to diet.
A person can have more than one cause of b12 deficiency so my personal view is that Gps should try to exclude all possible other causes of B12 deficiency in their patients.
I am not a medic, just a person who has struggled to get a diagnosis.
The most important thing I learned
It was to always get copies of all my blood tests. I learnt to do this after being told everything was normal/fine and then finding abnormal or borderline results on the copies.
Someone who has both low iron and low B12 may appear to have a normal MCV. Low iron can lead to small red blood cells and low B12 (and low folate) can lead to enlarged red blood cells.
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