Hi guys
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....
B12 - 81 (140.00-724.00 range)
Folate - 1.9 (3.89-26.80)
Trip to the GP first thing tomorrow?
Thanks 😊
Definitely trip to GP if not an immediate trip to local A&E wtih a B12 that low
This is a link to the symptoms of B12 deficiency
pernicious-anaemia-society....
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.
Hi
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.😩
I hope you get treatment for your daughter swiftly-go to A and E if your GP isn't available/ doesn't treat straight away
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.
Hi,
If you have time before appt, I would suggest reading following
1) BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
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).
stichtingb12tekort.nl/weten...
2) BNF (british national formulary) Chapter 9 section 1.2
All Uk Gps will have access to BNF, probably a copy on GPs desk/bookshelf
evidence.nhs.uk/formulary/b...
3) BMJ B12 article
4) fbirder 's summary of mainly Uk B12 documents in third pinned post.
I would strongly suggest being well prepared as my experience has been that B12 deficiency is not always well understood by some UK doctors.
PAS (Pernicious Anaemia Society)
If you ring them you may be able to speak to someone before appt. Office opens at 8am.
pernicious-anaemia-society....
PAS tel no +44 (0)1656 769 717 answerphone so messages can be left
Martyn Hooper's blog may have stories that are relevant to your situation
Other UK b12 websites
lots of useful b12 info and an interesting blog about b12 issues
B12 books
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
Who gets PA?
pernicious-anaemia-society....
Is there a family history of PA (Pernicious Anaemia) or other auto-immune conditions?
B12 deficiency symptoms lists.
I gave my Gps a copy of PAS list with all my symptoms ticked.
b12deficiency.info/signs-an...
pernicious-anaemia-society.... see Symptoms Checklist
Causes of B12 deficiency
b12deficiency.info/what-are...
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.
B12 deficiency blood tests
b12deficiency.info/b12-test...
What to do next?
b12deficiency.info/what-to-...
Unhappy with treatment?
Link about writing to GP about B12 deficiency
b12deficiency.info/b12-writ...
CAB
citizensadvice.org.uk/healt...
HDA patient care trust
UK charity that offers free second opinions about medical diagnoses and treatment.
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.
nhs.uk/NHSEngland/thenhs/re...
england.nhs.uk/contact-us/p...
As your daugter is 16, it may be her who needs to request copies if wanted.
In relation to B12, I look at B12, folate, ferritin and full blood count (FBC).
patient.info/doctor/macrocy...
labtestsonline.org.uk/under...
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.
Some people have a blood smear /blood film
labtestsonline.org.uk/under...
Folate Deficiency
Important treatment note in Management section in link below.
High b12 low folate?
B12 and folate
B12 & folate
Folate /b12
