I am posting regarding my 24 year old son. His childhood history saw problems start around 12 with concentration/ADHD problems at school and have progressed into severe anxiety and depression with self medication with alcohol. I have auto immune hypothyroidism and his father has Pernicious anemia. So far he's tested negative for thyroid. His vitamin b12 was 256 a couple of years ago and he has been supplementing on and off with Jarrow sublinquals.
Life has been hard for us all as a family and we recently took him to see a doctor in London who diagnosed him with Bipolar. He wants him to start on Seroquel which is a mood stabiliser. I am not really liking the idea of that but don't really know where to turn. He does have terrible moodswings, rages and depression. I'm not sure I think all these heavy drugs are a good idea as I have read lots about how low thyroid and other things can mimic bipolar.
Could my son gave a problem with vitamin b12? I'm not sure he could have any tests now that he's supplemented. One thing I have noticed is after any exertion he has a funny smell. It is like a rusty smell or like blood. I have also noticed that his dad has this smell when he is due his jab. Is this linked to vitamin b12?
Thanks for any advice
Best wishes
Carolineanne x
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CarolineAnne
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Very difficult as you say he has been taking B12 supplements and its there fore not useful to test Active B12, homocysteine. B12 and folate def and bipolar can go together, there also is a possible risk re PA in family, see:
" Only pernicious anemia in the family was associated with raised risk for bipolar disorder (relative risk: 1.7), suggesting a small role for genetic linkage "
Testing for IF antibodies would not be affected by supplementing, but that test is notoriously unreliable, so all not easy. Perhaps a trail of B12 injections and folic acid tabs if he is deficient could help with any antidepressants needed. But its terribly important to take the depression seriously, he is of an age that needs help, and it may only be for a year or so.
The pressure on the young is so high now, some just need a break and help. I know of many that age having spend a year or so on antidepressants, but they pulled trough and are now healthy happy individuals. I also know of a very sad outcome of those that do not get help, he needs help and trust it will get better over time.
Very difficult, hope I've been able to help a little,
The supplement situation most likely has muddied the waters when it comes to testing.
Yes, b12 deficiency can cause psychiatric problems. There have been a few research papers of late. I'm trying to think of the name of one you could read...
Found it. This is a link to Kelly Brogan's website - it's not specifically related to bipolar but you can see how, with even relatively low levels of b12, severe psychiatric symptoms can occur.
Although you can't have any of the direct blood tests done, what you can do is get your lad's stomach acid levels checked. You have to go through a GP for the referral, either private or NHS. You can also go through a nutritionist.
It's a non invasive spittle test - he spits into a test tube. Total cost is around £120 (£60 for the test and whatever the doc charges)
If your son has an alkaline stomach acid then the deduction is simple, he can't be getting enough b12 because this needs an acid environment to separate the b12 from food.
It might not be enough to convince your doctors - but you would know.
The lab that does it in the UK is Acumen. I don't think they have a website...but I'm not sure.
Edit if you click on the first bit in pink on that link I gave you it leads you to the research paper and you can see what this poor woman went through prior to getting b12.
Not heard about the smell but that doesn't mean that there isn't something going on.
Has B12 been mentioned to the doctor who diagnosed him. There have been signs that awareness of B12 amongst psychiatric professionals is starting to increase but it is still very low.
B12 deficiency can cause psychosis, paranoia as well as depression, anxiety and mood swings.
Have you tried upping the sublinguals.
Some people find that nasal sprays work well for them - sometimes better than sublinguals - they are what I use. I find though that I need about 3-4 times the dosage recommended on the bottle - people just vary quite a lot. B12 isn't toxic and there are no known risks of overdosing. Hydroxocobalamin - the form that is used to treat by injection in the UK is used at very high doses - 5000 x a maintenance shot (given generally every 2-3 months) over a 15 minute period. So, not really a lot to lose from trying more and seeing if that has an effect.
May also be worth looking at his B9 levels (folate) as body needs B9 to properly metabolise and use B12 - I supplement folate as well as using the B12.
It may also be worth looking at B12 levels again - just in case they have gone down (which would indicate a definite problem) - though it wouldn't be unusual for someone to be having clinical signs of deficiency at 258 as it is slap bang in the middle of the grey area that is called normal but really should be amber light at the very least.
Understand your reluctance to start on heavy medication routines and really hope that you find a solution that works for your son.
Gambit it wouldn't suprise me about the smell thing - if you tie it in with the tendancy to perspire - and that too is mentioned in the comments section of the BMJ article.
What I think there has been very little research done on is the psychological routes caused by b12 deficiency.
My observations on it and they are purely observations, are that people tend to take one of two routes - either they have primarily neurological symptoms or primarily psychological. This doesn't mean they don't have some of the other symptoms because usually they do.
So, you can have one person who has primarily neuro symptoms (founded in the physical) with some psychological disturbance, and another person who has primarily psychological symptoms with some neuro symptoms.
In either case you get people focusing on their primary symptoms (ie mental disturbances) and not giving that much significance to the physical or vice versa - and in the end it gets to be quite easy to read which patient is going down which route.
Definitely not saying that the smell is rubbish - makes a lot of sense - just that I hadn't heard of it - a sweet ordour is quite common in diabetics and actually some dogs have been trained to detect it and advise their owners at its a sign that they need to pay attention to blood-sugar levels urgently.
May be I am the only person in the world but I have just about always (past 30 years +) had a mixture of psychological and neurological ... and also symptoms not directly related to either - eg thinning of hair (25 years). Most doctors aren't capable of thinking outside the box though so fail to ask about symptoms in other possible areas - even when they do their ability to describe the symptoms can be a bit limited. There is a tendency to treat symptoms rather than looking for the underlying cause so you get lovely labels like 'depression' and 'GAD' (general anxiety disorder) that could be symptoms of something else but if they look for anything else it's generally thyroid and nothing more. And then things get muddied because some symptoms creep up on you slowly and get dismissed as old age ...
Thank you everyone for your replies and the links. I took a look at Kelly Brogans website- very interesting and I think I might look into getting my son to do the stomach acid test.
It does seem that doctors treat the symptoms and don't look for the underlying causes. I have read the link between PA and bipolar risk but I did wonder if maybe it was the case of doctors diagnosing bipolar and not investigating underlying issues as they tend to do.
The smell thing is weird. It's metallic. I've googled it and found other people suffer with it but they seem to be trying to find out what it is too. Someone had suggested high adrenaline and high copper levels?
Thanks for all your suggestions. It is heartbreaking to see my son go through this but we will persevere. We brought him back home to live as we felt he needed extra support.
I have thought about trying b12 injections. Is that something I could do I wonder?
You can only do your best to give him as much support as needed and to a certain extent you have to trust those who are specialists. Both my grown up daughters suffered from eating disorders, a fashion at that time, but still a devastating fashion. Expert help is what helped them, but both were also eventually diagnosed with B12 def. So it can be a mixture of both and it may be something to mention to the people who are looking after your son medically.
I'd never just give B12 injections with out a medical reason to do so; and with regular monitoring and support for that treatment from those that are involved with his care now.
In the UK any injectable medications are prescription only - although it is possible to source them from outside the UK (many of us do) but agree with Marre that would be better to go down the route of getting medics to confirm first.
Have you tried keeping a diary of your son's symptoms and when he has been supplementing just in case there is any correlation? Might make dealing with a 'prescription' happy psychiatrist a bit easier if you could show that the B12 makes a difference.
There are lots of different ways of supplementing B12 - generally if someone becomes deficient its because of an absorption problem - PA (autoimmune response) is the best known but by no means the only cause. So, that means that relying on absorption through the gut generally isn't going to work (though some passive absorbtion (outside specialised process in the ileum) does occur which is why flooding with very high doses can work. Sublinguals work mainly by absorption by membranes in the mouth - nasal spray obviously works by absorption through the nose and there are skin patches out there ... there's probably even a suppository but ...
If your son is very moody then trying injections could be problematic and might be better to try other things first - there is a notable absence of research on how different people vary with different methods of absorption so it has tended to become injections without questioning if that is right for the person concerned.
Hi CarolineAnne. Your son's test results appear to be on the low side and alcohol could have depleted his vitamin B12. PA and thyroid disease in the family also make B12 deficiency more likely.
"The B12 Deficiency Survival Handbook", written by Dr Aqsa Ghazanfar, and "Could it be B12" both have information on tests and here is an extract from the latter:
"we believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550". "For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
Vitamin D deficiency is also linked with depression as well as many illnesses and diseases. Latest research finds that most of us are deficient, partly due to the use of sunscreen, and at least 2,000 iu vitamin D3 a day is recommended, if deficient. The symptoms are:
Depression
Muscular weakness
Feeling of heaviness in legs
Chronic musculoskeletal pain
Fatigue or easy tiring
Frequent infections
It would seem a good idea to optimise both levels of these vitamins and see if it helps your son. Best wishes.
Hi CarolineAnne. Your son's test results appear to be on the low side and alcohol could have depleted his vitamin B12. PA and thyroid disease in the family also make B12 deficiency more likely.
"The B12 Deficiency Survival Handbook", written by Dr Aqsa Ghazanfar, and "Could it be B12" both have information on tests and here is an extract from the latter:
"we believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550". "For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
Vitamin D deficiency is also linked with depression as well as many illnesses and diseases. Latest research finds that most of us are deficient, partly due to the use of sunscreen, and at least 2,000 iu vitamin D3 a day is recommended, if deficient. The symptoms are:
Depression
Muscular weakness
Feeling of heaviness in legs
Chronic musculoskeletal pain
Fatigue or easy tiring
Frequent infections
It would seem a good idea to optimise both levels of these vitamins and see if it helps your son. Best wishes.
Thanks all for the replies. I understand what you are saying re the injections. Thanks for the book recommendations. Will have a read of those and yes I will start a diary.
My son was found to be low in vitamin D and takes supplements. So I will keep up with the sublinquals.
Welcome to my world... The same thing happened to my son . It began when he was around 15. He was also diagnosed with ADHD and given Ritalin. When the poor kid went from bad to worse the "wizards" put him on Olanzepine , Risperdal, Effexor then Valium, Lithium and valproic acid, to name a few. NOTHING HELPED. But who were we to question the shrinks' judgement? We were scared witless - and followed their instructions faithfully.
When our boy was 16 and his feelings of "unreality" and depression became too much he deliberately downed a bottle of his meds and was hospitalized for 6 months. After a five month hiatus (and still under psychiatric care, mind you) he then became irrational, paranoid and finally catatonic. He was sent to a different funny farm for another 9 months with "schizoaffective disorder".
The odor you mentioned is called "the sweet smell of schizophrenia". Don't freak out...Just know what you're dealing with.
Carolineanne - here's a case study similar to your son's of a B12 mental health misdiagnosis "fail" and treatment. Your son has an excellent chance of recovering from this. I can say that because It's happening with my own boy. In our case the damage went on for much longer, so it will take some time to repair. But I'm still hopeful. If I can be hopeful, so can you!
Here's what's working for us right now (based on Dr. Abraham Hoffer's "orthomolecular" treatment for schizophrenia and bi-polar. I highly recommend visiting this website for info on this important treatment plus links to Hoffer's memorial website
In addition to the every other day shots of B12 and daily 2000mcg sublingual methylcobalamin pills, our son takes mega doses (3,000-5,000 mcg) of niacinamide and vit C ; two 600mcg doses of NAC (another supplement : clinicaltrials.gov/ct2/show... plus selenium, zinc, omega3, twice daily B complex, melatonin and betaine. Thank God he's getting a little better every day.
I must warn you not to wean him entirely off his meds yet! I know it's tempting-but you have to do it gradually-mainly because those nasty meds make you MAJORLY SICK if you come off them too fast, and until the B12 kicks in, he's going to need the psych meds as a temporary "crutch". You don't want to get stuck with a teen aged werewolf !
Hi Caroline Anne, I am a qualified Natural Health Consultant and Educator and would recommend that you visit a Naturopath. Vitamin and mineral deficiencies can indeed cause psychiatric and physiological symptoms such as you have described and they are qualified in these areas and an adjustment in diet and lifestyle can also help. It is important to address the root cause of the problem not just deal with the symptoms. A Naturopath's primary goal is to find the root cause of the problem and eliminate it. If the root cause is not attended to then it could result in further problems down the line. For instance excessive alcohol consumption can interfere with vit B absorption and this deficiency in turn can lead to diseases such as alzheimer's and cancer to name just a few. Certainly worth pursuing all the natural means at your disposal. Best of Luck. Please keep me posted on your progress.
Neglected to mention that wacky baccy can also result in low vitamin and mineral absorption levels.
Hi. I know it is a while since you posted. How is your son now? Also, do you know what his serum ferritin level is? ADHD is associated with low brain iron, and it might be worth making sure his ferritin is at least 90. Has he or his father or you been tested to exclude celiac disease? That's a long shot, but the test is cheap over the internet and it is worth excluding.
I am in a similar situation to you. Please PM me if you feel you want to chat.
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but ...
The same thing happened to my son . It began when he was around 15. He was also diagnosed with ADHD and given Ritalin. When the poor kid went from bad to worse the "wizards" put him on Olanzepine , Risperdal, Effexor then Valium, Lithium and valproic acid, to name a few. NOTHING HELPED. But who were we to question the shrinks' judgement? We were scared witless - and followed their instructions faithfully. 
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