Short one as , well, I am buggered. Brain not working , so here to pick brains. As per not really getting anywhere with Gp. They have sent me a form to arrange repeat bloods, usually children are booked into walk in centre next door fairly quickly , but booking myself that isn't an option. So they tested her B12 and folate after her 5th loading dose, told them this is not recommended by NICE . Which of course showed B12 > 2000, folate 2.3 (3.9 - 26.80) previous results a month before B12 <150 (197-771) Folate 2.9 (3.9- 26.80) . After her 6th injection she was pxd folic acid and Vit D, So I thought the blood forms would be to check Vit D and folate, but no it's a repeat of HbA1c and Lipids. They were HbA1c 41 <41 Total cholesterol 4.5 <5
Really don't know what I 'm asking for here, just thoughts really. I am a little concerned or confused really , think maybe HbA1c might go up as had loading doses not sure about Lipids.
We are no nearer getting any clarity on situation, no IFAB, no one seems to want to try and clarify what is needed. GP referred to Alder Hey for them to investigate, Alder Hey took the fact that GP had pxd loading doses as " I understand B12 is being managed by Primary Care".
She has had MRI, and Abdo US to rule out PCOS which it seems to have done. Sorry for the confusing saga, head spinning
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Polo22
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Studies seem to suggest that HbA1c would be expected to (eventually) go down after treating a B12 deficiency, rather than up.
If pre-diabetes is already present however, that might be a different story.
"Previous studies showed that vitamin B12 deficiency anemia causes a false increase in glycosylated hemoglobin (HbA1c) and that HbA1c decreases with B12 treatment. "
Total cholesterol is a pretty lazy test in terms of usefulness in predicting risk from elevated lipids, more serious investigation would look at LDL-C or better yet ApoB.
Thanks for response, I am worried about a Hospital appointment I have tomorrow and not really focussed. I do have the numbers for HDL. LDL. Triglycerides,serum cholesterol/HDL ratio and non HDL level but had started to seriously waffle so stopped myself.
I was also wondering about this for me, long story. Her HbA1c first and only test was end of November , when B12 was <150 and folate 2.9 so maybe it could be the deficiency ? think I am getting my B12 and T3's mixed up brain fog rules
Based on the research paper above I wouldn't draw conclusions from HbA1c until B12 deficiency has been corrected for a while, as it might be falsely elevated.
Research articles may have details that could be upsetting.
I came across a BMJ article from a few years ago about paediatric B12 deficiency.
Search online for "BMJ B12 deficiency paediatric population" to find it.
Also found an article about a study of B12 status in infancy.
Search online for "BMJ B12 status infancy".
I'm struggling with RSI at moment so can't write much.
PAS article on new NICE B12 deficiency guidelines mentioned "Our second concern is that the NICE guideline is limited to Over 16’s due to lack of evidence for children and young adults...... we feel that greater effort to find the necessary expertise in this area should have been found to advise the NICE Committee.
I am apparently a member of PAS, have made a little folder for daughter with some of the resources in , list of references, explanations etc, her blood results so far, appointment letter and reports from appointments. Haven't spoken to anyone there yet. Tell you what I did do, emailed Cheshire and Merseyside NHS Uk enquiries email asking for the current protocol used to treat B12 deficiency in children and young adults. Within an hour or two the responded with a link to the national NHS site very blargh blargh no details so I politely requested the information again, "I have seen the Pan Mersey Area Prescribing Committee Vitamin B12 deficiency in adults guideline and wanted to check if this is the one used in the Cheshire and Merseyside ICS and what B12 deficiency guidelines are referred to when treating children and young persons with B12 deficiency within Cheshire and Merseyside ICS and ask for a link to or copy of the guidelines."
Have resent it a few times, guess I'll have to do a FOI , might also be doing a SAR for her records from Alder Hey.
Need to stop going over results, Serum Alkaline Phosphatase 53 u/L 60.00 - 400.00 ul. These are on the results from 29/11/23, no one has even mentioned it , I feel sick, hoping I am being over dramatic, but angry that no one has taken any notice
buffalo hump, obese, below chest arms, this has only developed over last few years, even though doesn't seem to have a high enough intake, the most noticeable her head/face seems to have become rounder, wider, skin is very spotty rough and dry like acne but all over. Periods that were late to start, then became erratic, flooding through everything now only had maybe 3 in last year. Always complaining of being the shortest , the others except for youngest were all much taller at her age, shortest elder sister was fractionally under 6 foot at 18 years old. Difficulty sleeping although fatigued, depressed to the point of feeling suicidal at times. I feel awful because school have been very unsupportive, talking about not letting her sit her exams and although I have tried to be supportive just half an hour ago was having a go at her to be in school tomorrow because I need to be at an appointment.
I hope your appointment goes well today - the pair of you need you to be okay first.
What was the reason for GP testing B12 after loading injections ? To find out that serum B12 is over 2000 ? In order to do what ? Stop there or start a maintenance regime ? After loading injections, B12 would be over 2000, of course it would , but we both know GP is measuring what has just been administered. There is no point to that, at serum level, if it is not reaching cells/tissues and making a difference. Symptoms: early I know, but any sign of improvements yet ? For some of us it took quite a while to get to that stage. Low mood and anxiety both common symptoms of B12 deficiency.
Do you think the GP overcautious because of daughter's age, or just lack of understanding of B12 deficiency ? I hope your doctor is working as hard as you are to find answers, NICE having stopped short of guidelines for younger patients. MMA (serum test) can be a secondary indicator for B12, if it is returned as high/ raised - once renal problems ruled out (blood test) and SIBO later (breath test) as possible causes. One for later/ just in case perhaps. Easier to get at secondary care level.
I don't know much about thyroid issues, although two of my sisters have Grave's disease.
Keep in touch, keep asking the questions. You will reach the right person or people for answers, information, support and guidance. And kindness, which all of us have needed at some point. I found it here in abundance.
Take a deep breath and one day at a time. It sounds like they have started to investiagate with mri and ultra sound. Has her thyroid been tested? You might benefit if you can afford it by seeing a private peditrician. I have a now sixteeen year old son who had cronic fatigue and huge over night weight gain from the age of seven. He developed breasts, a moon face, lost his eyebrows, went deaf and slept all the time. I had alsorts of investigations done and saw private doctors etc nothing was diagnosed except autism. Anyway over the past two years or so he has lost about six stone, is coping well at school. has energy, his eyebrows are back and he can hear. Helped an awful lot by gym membership and kick boxing. I dont know if this is relevent really but just saying dont panic it might all resolve in time.
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Still cannot get injections reinstated 
So deflated and confused 
Which vitamins alongside SI?
Advice moving forward?
Thank you - hopefully on the road to recovery
