my 17 year old son has been very depressed, anxious and suicidal. He has vitiligo Here are his blood results.
B12 =226 (201-914)
folate =7 ( 3-20)
TSH 2.73 ( 0.38-5.53)
T4 10.4 ( 7.90-14.40).
He probably has undiagnosed autism and has been diagnosed with dyspraxia.He has been struggling with recall in exams and understanding his A level course work.
Would a trial of injections help him. Would it be worth furthur investigation?
Definitely more tests needed before treatment or a trial of b12 injections .And anything that thst lowers his stress levels .
Reduce amount of A levels .
Pull out.
Health comes first
An active B12 gps may use now?
IFAb test csn pick up 5o% of those with PA.
Keep him off oral supplements until more tests done.
Get a referral.
Hoping he is getting other help with his mental health .
Very difficult time for you as well.
Do you know if we get INFab test done privately? I think blue horizens do an active B12.
Blue horizons do a test for both antibodies. I agree with definitely getting an active B12 - my son didn't have the antibodies but did have a low active and we now know was symptomatic - B12 made a considerable difference to him
Keep the oral supps to minimum . . . . . . . . Tests, any tests are not conclusive. . . . . . B12 jabs do no harm in any case. . . . . . Dr Chandy fought the bit out on that one. . . . . . .
Hi,
Have you seen the new NICE B12 deficiency guideline published on March 6th 2024?
This is written for patients over 16.
I have some reservations about it but there are some good bits and I think it's worth reading thoroughly.
Have you considered joining and talking to PAS (Pernicious Anaemia Society)?
PAS membership is separate to membership of this forum.
pernicious-anaemia-society....
They have info on juvenile PA and PA in adults.
pernicious-anaemia-society....
Vitiligo is quite common in people who have PA.
Risk Factors for PA and B12 Deficiency
pernicious-anaemia-society....
Next link about causes is from a Dutch B12 website
b12-institute.nl/en/causes-...
Blog post about being symptomatic for B12 deficiency with a normal range serum B12 result.
b12info.com/your-serum-b12-...
Your GP may say that PA does not affect young people. You could pass them info on juvenile PA.
GP may say that PA does not cause the symptoms your son is experiencing.
Maybe pass PAS symptoms checklist to GP. I used it and added extra symptoms at bottom.
pernicious-anaemia-society....
If your son has an IFA test that is negative or normal range, GP may say he cannot have PA.
You could show them this diagnostic flowchart from a UK health document that mentions Antibody Negative PA.
stichtingb12tekort.nl/engli...
I left a detailed reply on this thread with other useful info.
Some links may have details that could be upsetting.
Help Needed! Have I got Pernicious Anaemia?
healthunlocked.com/pasoc/po...
There is a chain of chemists (not Boots) whose online service offers a B12 test that includes IFA test.
NHS GPs sometimes don't accept private blood results but if private test shows a positive or above normal range result this may nudge NHS GP to repeat test on NHS.
There's no guarantee that NHS IFA test will have same result as a private one.
I came across a research article recently where all 600 people with ASD (Autism Spectrum Disorder) in sample had functional B12 deficiency. This is where there is plenty of B12 in the blood but it's not getting to where it's needed in cells so person develops deficiency symptoms.
MMA, homocysteine and Active B12 (holotranscobalamin) may help to diagnose functional B12 deficiency.
I'm not medically trained.
Hello,
What a terribly stressful situation for both of you. But, well done for identifying possible causes.
I’d say there’s every chance his dire B12 is causing those problems. Do you have any results from a recent full blood count?
Also you’ve highlighted his thyroid results; I don’t suppose he’s ever has his FT3 or antibodies tested?
Thank you for your reply. I will try and post more bloods tommorow, just off to bed.
Definitely worth trying B12 jabs. Must doctors will say that level is not deficient, but I believe the reference range is too low and that's why s lot of people are left to suffer.
Read everything you can about B12. Sally Pacholok. Dr Chandy. Sarah Myhill on chronic fatigue.
Unless you can address it with a change in diet (if he's vegan), the chances are he'll only improve with self-administered jabs.
Those symptoms are pretty scary for a parent. I had those symptoms. I was put on all kinds of antidepressants. It was NOT that. It was a b12 deficiency. Your sons B12 is low. If he eats meat and has low b12 he may have absorption issues and need injections. I was left like that for decades so I got bad. But B12 has helped me so much. Your son is young and I feel B12 would help him tremendously. When B12 is low, it affects your ability to concentrate and think straight and it def affected my anxiety and depression levels. You feel confused and discombobulated. No one can relate and you feel alone. I am not a doctor but my suggestion, before you allow docs to shove antidepressants down his throat, to try B12 injections. If I can do one thing and save a young person from being misdiagnosed with depression, I will do my best. I think when they call depression a Chemical Imbalance, they should say it is a vitamin imbalance. maybe not in all cases. But in mine it certainly was. Good luck to you and your son
Thank you that is so helpful ella nore.
You are very welcome. Good luck. But before you start him on Injections, if you haven't already, get an IFAB test to test his parietal cells for antibodies. If he tests positive for antibodies, then that would be PA. But you can not take that test with any supplemental B12 in your system for a long time. So before you start, have that test. Have it anyway, even if you have started.
I could be mistaken, but my impression was that Intrinsic Factor Antibody Test (IFAB) looks for antibodies to Intrinsic factor. There is a different test for parietal cell antibodies. Again, I could be wrong, and I welcome correction.
Oh thank you. I did not know that. I looked it up and sure enough you are correct.
Intrinsic factor antibodies are proteins produced by the immune system that are associated with pernicious anemia. This test detects intrinsic factor antibody (IF antibody) circulating in blood
Intrinsic factor is a protein produced by a type of specialized cells that line the stomach wall known as parietal cells. During digestion, stomach acids release vitamin B12 from food and bind to intrinsic factor to form a complex. The formation of this complex is necessary for the absorption of vitamin B12 in the small intestine.
An antiparietal cell antibody test is a blood test that looks for antibodies against the parietal cells of the stomach. The parietal cells make and release a substance (IF) that the body needs to absorb vitamin B12.
It might be worth finding out what his MMA is doing. Useful secondary test if symptoms indicate a B12 deficiency but B12 levels returned as a borderline result. Suggested pathway in NICE guidelines. However, it's a difficult test to get from primary care level , easier from haematology - and otherwise, Id expect, quite expensive.
Insufficient B12 will cause a build-up of methylmalonic acid (MMA) in the bloodstream, waiting for the B12 to arrive to form a link. Sometimes, to quite high levels if B12 lack not addressed.
In those with B12 deficiency, injected B12 (certainly by completion of loading dose of 6 injections) would then rapidly reduce the MMA because it would take the B12 where it is required (cells/tissues). Patient should feel improvements.
In those with functional B12 deficiency, the problem can be that the link is not being made efficiently, so both B12 and MMA remain where they are in the bloodstream, and symptoms persist. Patients would need frequent B12 to ensure sufficient amounts are reaching cells and tissues. Then the patient should feel gradual improvements.
Active B12 test, IFab test - both may be easier to request. Also ferritin and vitamin D levels could be checked easily, and can often be low with any B12 deficiency.
his ferritin was a bit low. Do they do active B12 test on NHS. His vitmain D is OK because I have been making him take it.
Good for you, Hectorsmum !
Active B12 tests: yes, I've had one. Again, I think easier from secondary care. Haematology no doubt the best route: think that was where mine was done. Mine was fine - but long after frequent injection regime had started.
EllaNore is right - depression, anxiety, irritability, mood-swings, inability to focus or think straight can all be B12 deficiency symptoms. Whether they are all recognised by GPs as such can be another matter.
I was offered antidepressants three times, but refused them as I recognised that this wasn't what I was feeling - this was what I was experiencing. Knowing that difference comes with age though.
(Not all post-menopausal women are depressed - just treated as if they should be !)
My mum had vitiligo. It started at an injection-site on her upper arm - she said from a school vaccination, not sure what for - and spread over her chest and shoulder. Quite obviously an autoimmune reaction. She also had psoriasis, another autoimmune condition, which would flare up in times of stress. I still remember the smell of her hair from the tar shampoo she got on prescription. In much later life, the venous ulcers on her legs were appearing exactly where her psoriasis sites had been. So many unknowns still.
Autoimmune conditions commonly aren't singular in a person. The likelihood of PA would therefore be a sensible search. One IFab test might be unproductive on first trial - only about 50% of those with PA get a positive result - but as long as your GP is aware of that, it won't be ruled out on a single negative result. Martyn Hooper (founder of the Pernicious Anaemia Society) had three before finally getting a positive result. Which almost comes with a guarantee, as it is 95% accurate.
(Not all post-menopausal women are depressed - just treated as if they should be !)
Yes Cheryl Claire. This is so true. I was put into synthetic menopause at 23 years old. and 3 years later had a complete hysto. No one explained the emotional side to that. I just wanted to be out of pain from endo. I know now or believe now, that the synthetic menopause hurt me very much. That is when my health journey began. My emotional mental health changed overnight. That took me down a dark road of misdiagnosis for decades. One doctor puts something in your records and that is your label for life. Right or wrong. And in most cases it is wrong! Now, I know B12d was my issue. Not depression. Anxiety was unbelievable, coupled with egotistical doctors that never ran a simple B12 test, and blamed mental health. Many of my emotional issues have completely changed with daily B12 injections. I have some residual issues that I believe are cognitive. And may be as good as I will get but I have answers. That is 90% of your health. Knowing what is wrong. Women do not get taken seriously. And male doctors cannot possibly know how we feel inside. I have had bad female doctors too, though.
Where there is one AI condition, there is likely more. And they mimic each other. Making it harder to diagnose B12D. It is just a blood test. We should fight for that to be a standard test in a "Complete"(?) CBC panel. They are by far, not complete!
Also seem to have some cognitive issues left. Maybe this is the most we can get back.
There is no recognition of what this has cost us, personally and financially, is there ?
Yes, you are right , a serum B12 test could easily be added as part of a full blood test. Difficult to stop routine re-testing then, though: "You're chock-full of the stuff now -so we're stopping your injections."
Being told you have B12 deficiency is just the beginning of the story - and not a diagnosis, not why.
Sorry you have cognitive issues too. It sucks. Yes. My doctors always check my b12 when I tell them not to. My doctors have not administered an injection to me for over 2 1/2 years. How can you trust a doctor/hematologist that believes you are ODing on B12? I just asked for an entire blood work up last month. I asked for folate and no B12. But they did it anyway. I have an hour long meeting on Monday with my GP. I had reported him and told him he was a terrible doctor and I won't pay him for not doing his job anymore. I told him to do his freaking research. So I got a call and he wants to have a meeting for however long I need on Monday after hours. YAY!! I hope he will listen to me.
Take someone with you !
I would advise you take a witness, even just for moral support.
That's actually a very good idea. I will see if i can find someone. thanks Cherylclaire !!
>>Would a trial of injections help him. Would it be worth further investigation?
It is quite possible that a trial of B12 injections would be helpful. The only way to tell is do do a trial if all testing does not indicate a trial is warranted. It is unlikely a physician will prescribe a trial by symptoms alone without testing indicates a trial is needed which causes much suffering that may be prevented with B12 injections.
This website is the most helpful to me. theb12society.com/treatment
It is very unlikely that any mental health professional will not misdiagnosis B12 deficiency.
from the article "Vitamin B12", Bruce HR Wolffenbuttel, et al., in British Medical Journal:
[Start quote]
What you need to know
• The clinical picture is the most important factor in assessing the significance of results of blood tests assessing cobalamin (B12) status because there is no “gold standard” test to define deficiency.
[End quote]
In other words, test results can be helpful, as long as they are not over-interpreted to conclude there is no B12 deficiency, but B12 deficiency is a clinical diagnosis, based on symptoms. If the clinician is unsure based on symptoms, then a trial run (every other day, or twice per week is preferable, since B12 is not toxic) is the indicated diagnostic action.
I don't know why the last part is underscored.
Thank you wise guy.
Any connection with B12 deficiency and Bladder issues?
Try asking family members to get B12 levels checked
Feeling helpless
Newbie here b12 advice
