My 15yr old son has many b12 symptoms the worst of which are fatigue, depression, no appetite and brain fog. Also unbalanced, tinnitus, occasionally pins and needles, very disturbed sleep.
He had bloods at gp
b12 381 (197-771)
Folate 4.5 (3.89-26.8)
Vitamin D 35.6 (50-150)
Ferritin 64 (30-400)
( i should add that i was/am b12, folate, ferritin and vit d deficient and im self injecting and healing as my gp was useless)
Gp insists that only thing abnormal is vit d a little low. And his symptoms are most likely mental health related.
I know that his vit d is very low and i have him on a vitamin d protocol and also on iron and high dose vitamin c and folic acid 5mg daily.
Spoke to a different gp and he again insisted that most likely my sons problems are mental health related. The gp refused further testing, according to him what i asked for isnt available on the nhs in my area. I asked for referral to a haematologist, which the gp agreed to. Haematologist refused to see him.
So i paid privately for more testing which gave the following results (5wks after first tests, so had been on folic acid for 5wks by then)
Intrinsic factor antibodies <1
Gastric pareital cell antibodies- negative
Active b12 60.57 (25.1-165)
Homocysteine 22.78 (<15)
MMA 25.7 (<32)
I did not realise that i should of stopped his folic acid 2 days before testing mma 🤦♀️
Had a face to face gp appointment today to discuss my sons worsening congnitive function and his inability to attend school.
Gp dismissed high homocysteine level and refuses to consider that b12 may be causing symptoms. I asked for a theraputic trial of b12 and he refused. He is referring him to a paediatrician. He says that feeling dizzy when he stands up is normal for tall young people 🙄 and that his breathlessness when exercising is is maybe asthma (no family history of asthma or eczema).
I dont know what to do next. Maybe pay for an MMA urine test?
I dont have a lot of faith that the paediatrician will have any more understanding of b12.
I couldnt walk properly, was having urinary accidents, very forgetful, blurry vision, bad back pain and more. I tried high dose sublingual b12 and my symptoms kept progressing, so it pushed me to self inject as i was desperate. Im still weaker but most symptoms have resolved.
As my sons a minor i cant just inject him, ive heard this can be classed as child abuse. Im frightened how far he may deteriorate before i can get a doctor to listen. 😢
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Muddywinter1
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The Active B12 test is supposed to be more accurate than the serum B12 test and his result is well above the bottom of the range, suggesting that he has plenty of B12 in his blood.
The normal MMA also suggests that B12 isn't the problem.
The hCys result is a moderately high and could be caused by deficiencies in B12, folate of B6. Have you tried B6 supplements? It is thought that P5P (pyridoxal 5' phosphate) may be better than pyridoxine. I take these - amazon.co.uk/Country-Life-P...
The Active B12 test is supposed to be more accurate than the serum B12 test and his result is well above the bottom of the range, suggesting that he has plenty of B12 in his blood.
The normal MMA also suggests that B12 isn't the problem.
The hCys result is a moderately high and could be caused by deficiencies in B12, folate of B6. Have you tried B6 supplements? It is thought that P5P (pyridoxal 5' phosphate) may be better than pyridoxine. I take these - amazon.co.uk/Country-Life-P...
I'm sorry your son is unwell. Have other things been looked into too?
Hormone imbalances can also cause similar symptoms
I'm really surprised his referral wasnt accepted.
You know your son so keep pushing.
It took too many years to get a diagnosis for my daughter .
You need one doctor to take an interest . Usually a general hospital one.
Specialists dont talk to each other. The jigsaw puzzle is never put together.
Is your son able to explain symptoms.
Get him to as specific as possible. To write a daily log.
What's helps what makes things worse. Walking is important
. Also seeing his peers.
My daughter on too many occasions was sent down the mental health route
Dint dismiss that all together as being unwell especially at his age can cause problems.
I always had to express very clearly that the physical symptoms and pain came first and anyone gets down being ill and fatigued day in day out to every doctor she saw.
On an okay day a different person.
It sounds like too many assumptions being made by the medics because he is 15.
Bloods do not show everything.
The paediatrician is a good referral.
My daughter is also very tall.
It is not normal to feel dizzy standing up !!
Has his autonomic function been tested ?
Also ENT for tinnitus
Hormone levels
POTs been considered
So
many conditions overlap.
Functional b12 deficiency been discussed
All ideas to put to the paediatrician
I've learn to let them take the lead in questions
We used to take so much information and feel so overwhelmed then disappointed at so many appointments.
Pick out the worst 5 symptoms
Alsi give a comparison to how he used to function . When did this change and how?
Ask for a trial of b12 if he/she doesn't know the problem. Explaining your history.
"and high dose vitamin c and folic acid 5mg daily"
I suggest you discuss whether there is a need for folate supplement with GP.
If a person has both folate and B12 deficiency at the same time, I've read that it's important to treat both deficiencies. I have read that treating folate deficiency without treating a co-existing B12 deficiency can lead to neurological problems.
UK guidelines below suggest patients with unexplained B12, folate or iron deficiency should be tested, also patients with a first degree relative with coeliac.
Has he ever had any thyroid tests?
Some of the symptoms of thyroid problems overlap with the symptoms of B12 deficiency.
In UK, GPS often only test TSH which won't give a full picture of thryoid function. There are other tests that GP/specialist can order.
If you have concerns about thyroid issues, may be worth posting on Thyroid UK forum on HU.
All these books mention children with B12 deficiency.
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). BNF treatment info in this book is out of date. See BNF hydroxycobalamin link in this reply for up to date info.
"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper
Has several case studies.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies. There is also a paediatric version of this book "Could It Be B12? Paediatric Edition: What Every Parent Needs to Know".
UK B12 Blogs
There are stories about young people with B12 deficiency on these blogs. Some of the stories are upsetting to read.
Best advice I ever got was to always get copies of, or access to all my blood test results. I was told on more than one occasion that everything was normal and when I got copies I found abnormal and borderline results.
Your son's condition sounds very frightening for you particularly as the GP doesn't seem to make any link bewtween how you were feeling before you started to treat yourself with inecting Vit B12. Does the GP know that you have resolved your condition by yourself?Have you got any 'alternative' GPs in your area such as homeopathic or holostic as they might be more open to trying different things.
How long is it until your son reaches the age of 16?
The big problem is that NICE have decreed that there is no evidence that Vit B12 is an effective therapy for the multitude of symptoms that persistently low levels cause. There will probably never be evidence of its efficacy since the research funders want a return on their money and Hydroxocobalamin is so cheap. Perhaps we need to look into what evidence NICE would accept and have a go at crowd funding a research program.
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