Hi was looking for some advice. My daughter in law has posted the following on the B12 Facebook group.
So a few months ago my daughter had what I thought was a sezure so taken her to my gp who did bloods and said her iron was really low so she had taken iron tablets for 3 months but still feels no better.
She has the following symptoms
Weakness ..shortness of breath from time to time ...fatigue .. sleeps most of the day .. lack of appetite.. irritability ... seizure (happened once) .. concentration problems .. depression ... headache .. dizziness.. ringing in her ears from time to time.
Have a family history of b12 deficiency also.
Rang for the results of her bloods and they told me they have come back normal.
So folate - 3.1 range 2-18.7
Ferritin - 38.6 range 20-620
B12- 268 range 197-771
Is this normal? Should I request more tests ?
Tia
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Lincsangel1
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Whart do they clase as normal ? It seems all labs vary in what they class as normal ! Lower range can be classed as anything from 160 to 200 which is a big margin.
You could do a private test which is what I did at little cost and a simple finger prick test. Others on here will advise so keep eye's peeled.
I've just edited my post to include ranges. Although all in range they look very low to me especially for a 14 year old. I have B12 deficiency and have had symptoms for years before being tested.
What we see as low drs see as normal ! As you know it is dificult to get a dr to recognise a boil on the bum these days let alone B12 deficiency.
If a dr treats the condition we are all put in the same bracket of needing three monthly injections ! They should be considering there is a history of B12 deficiency in the family but that doesn't seem to enter their heads.
Thankfully your grandaughter has you who recognises the symptoms.
I was thinking those tests also.. just want to get everything tested before she starts on any type of supplements. My parietal test wasn't done till after I had already had B12 injections, and came back negative, even though my B12 was 122 and I had already been taking a supplement with high b12 in it ...so goodness knows how low it would have been if I hadn't took those.
"had already been taking a supplement with high b12 in it"
In many cases, people who are low in B12 are low because they are unable to absorb B12 through the digestive tract, which means dietary B12, and oral supplements do no good. The alternative means of obtaining B12 is via injections.
I would do the same. Push for a trial of loading dose of b12 given the family history and look for clinical improvement. You can test and test but they are not reliable and the interpretation of results is very variable.
If there is a concern about a young person having possible B12 deficiency, I would suggest that the family seek support from PAS.
Parents of children with B12 deficiency are not always listened to by doctors and there have been cases of parents being labelled with Munchausen by Proxy.
See this blog post by Martyn Hooper, chair of PAS, about parents of children with PA.
Thankyou for all the info.. Am I right in thinking her levels are too low, given her age, and symptoms.
Her gp, at the same surgery as mine luckily, has no idea as to what is causing her symptoms..it was only when I spoke to my daughter in law yesterday about her that I told her to ring for her blood results, as she had been told they were all normal x
Your doctor might be interested in a research review article entitled "The Many Faces of Cobalamin (B12) Deficiency". The article clearly describes instances where physicians are unsure whether a patient has B12 deficiency. The suggested course of action is for the physician to prescribe B12 injections for several months, then looking to see whether symptoms have improved. This is an entirely safe course of action, because B12 injections are never toxic, at any level.
Suggest her mum tracks down the local guidelines on diagnosing/treating B12 deficiency for her UK area and compares them with NICE CKS, BNF and BSH links.
Local guidelines are likely to be updated soon due to abolition of CCGs (England) in July 2022 (See thread about Integrated Care Systems) and publishing of new NICE guidelines in 2023.
UK B12 documents
NHS article about B12 deficiency (simply written, lacks detail in my opinion)
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment. I think children are mentioned.
Has the GP tested for coeliac disease?
Guidelines below suggest anyone with unexplained B12, folate or iron deficiency should be tested for coeliac.
There is a lot of ignorance about PA and B12 deficiency among some health professionals.
For example, some may think PA /B12 deficiency does not occur in children....it does, the youngest ever member of PAS was under 5 years old, an adult joined on their behalf.
B12 article from Mayo Clinic in US (aimed at health professionals)
The Many Faces of Cobalamin (Vitamin B12) Deficiency
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
If she has symptoms consistent with B12 deficiency, BSH Cobalamin and Folate guidelines, BMJ article and NICE CKS links indicate that she should be treated even if serum (total) B12 is within range.
Symptoms of B12 Deficiency (folate deficiency also mentioned)
Thankyou so much.. you really are a star! Would I be OK to message you regarding my recent blood results? Not sure if they are all heading in the right direction x
I prefer to comment on the open forum. Perhaps you could start a new thread.
The reason I tend to post so much info is that I suffered from unrecognised B12 deficiency for many years and as a result had some very difficult experiences.
"that I told her to ring for her blood results, as she had been told they were all normal"
This happened to me.
I was told everything was normal and no action and then I found abnormal and borderline results.
Might be worth her mum getting hold of even older blood test results if they exist and comparing them to more recent ones.
Results that are increasing or decreasing over time may be significant even if still within normal range.
Lincsangel - B12 levels are very individual - I have not come across anything in the literature that suggests there might be a different normal range for children. The term 'normal' comes from statistics and represents where 90% or soof the population normally sit. It is no guarantee that an individual is okay if the sit in that range, or that they are not okay if they sit outside that range. Serum B12 is a diagnositic tool aimed at helping to flag up something that looks out of the norm and indicate an obvious problem.
The problem with using the normal range that is that it is enormous in the case of B12 and the degree of variation means that some people may be at a point in the range but it may not be the right point for them.
The thing to look for is falling B12 levels as these indicate that the individual is not managing to maintain their levels at the point that is right for them because of an absorption problem. The fall indicates that they are already likely to be deficient.
The serum B12 test isn't very accurate in itself and measuring the same sample many times will give results varying by 20% - so you need to see a drop outside this range in the results to be certain that it is a falling B12 level rather than just in the noise range for a steady level.
Basically the test is very difficult to interpret and its significance is often misinterpreted.
My GP only took notice after I wrote a letter outlining family history, symptoms, various links and sent them Dr Chandy’s book, ‘B12 Def. in Clinical Practice’, as well as link to BMJ latest research document - (surgery can access this in full, but summary states how common it is, that there is no reliable test, diagnosis should be by made from symptoms, and treated as per UKNEQAS).
After doing this, your daughter could book an appointment with GP, if possible, with accompanying extra support.
Very best wishes Lincsangel1 for grand-daughter’s better treatment 🤞🤞
I could barely get out of bed with a b12 of 282, so it is entirely possible that it is low b12. I would push for a trial of injections and see if she gets better. Most efficient way to get some answers and help her at the same time if it is low b12.
Good luck and I hope she feels better. Btw, I had my kids tested around ages 9 & 12 and their b12 was in the 800-900 ranges, so yes 268 is on the low side especially given her symptoms.
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