Really Interesting Study showing Functional B12 Deficiency in Austism and Relation to Functional B2 Deficiency

[VellBlue]

Hi everyone,

walshmedicalmedia.com/open-...

I'm one of those who have to inject B12 every other day to avoid B12 deficiency symptoms. I also suspect I'm one of those many undiagnosed autistic women, could there be a link? All of the 600 samples from people with autism were functionally B12 deficient!

And this seems to be caused by functional B2 deficiency. I need to look into this.

Sharing the link above for anyone interested.

[Dilly_blue]

This is really interesting, thanks so much for passing this link on. We have functional B12 deficiency and autism in the family..

[Sunshine1932]

This is interesting. I have been self injecting since 2018 and still not able to get my dose quite right.Last September (age 42) I was told I have autism.

Life has been turned upside down as I learnt how to mask who I was and now I have to learn who I am.

If I'm honest being autistic makes me feel better than just odd. I never felt like I fitted in anywhere and to my detriment I would drink lots of alcohol and take drugs to suppress my emotions which apparently is very common in women with a late diagnosis.

The world of doctors has a long way to go with adults and autism especially as society has it all messed up when expecting what someone would look like and behave like with autism.

[Espeegee in reply to Sunshine1932]

So true, my 51 year old daughter was diagnosed with both autism, ADHD and ADD. Whilst it was a huge relief because it answered so many questions and she has been left with the What Now situation. Medication was prescribed which is a double edged sword, it makes a lot of difference to many aspects of daily living but the side effects are so bad she can't tolerate how they make her feel. There doesn't seem to be a middle path, finding a good counsellor might help but matching is really difficult and of course they charge enormous amounts. Life is fraught as I'm sure you know.

[Sunshine1932 in reply to Espeegee]

Sad to hear medication is not helping. I also have Bipolar and complex PTSD. (God was busy when he made me 😂) and for the past year I have seen a psychotherapist and recently started a medication called lamotrigine. So far I'm feeling more balanced and no side effects. I have been on others which helped towards me gaining 6st and I was always tired with a slightly whacked thyroid.

I strongly believe that good vitamins, a healthy diet the best you can afford, autistic friends even if a zoom catch up once a week and a creative outlet. I'm still learning to navigate and sadly I removed myself from my family as it was the only way to dodge judgement and start my healing process.

I hope your daughter can find some peace and comfort.

There is a YouTube channel called Orion Kelly autism. Australian guy helping those with autism and others to understand.

[Espeegee in reply to Sunshine1932]

Thank you so much for your post, I have already linked my daughter to Orion Kelly, his video on late diagnosed Autism resonated with her, she said that's exactly the trajectory of her life so far. I have passed your post to her, we are still looking for ways to move forward, it's been so very difficult!

[Sunshine1932 in reply to Espeegee]

I am pleased I have been able to help and I hope your daughter finds her way soon x

[VellBlue in reply to Espeegee]

Also share this with her: youtu.be/OvZVOlVnQW0(Not working as expected?)

[Asselchen]

Oh, thank you! I was only diagnosed via MMA level too and am likely autistic.

[Sleepybunny]

Hi,

Thank you for this.

Sally Pacholok, a US campaigner on B12 deficiency issues discussed autism in her book "Could it be B12".

[Espeegee in reply to Sleepybunny]

Did she? I have the book and read it but don't remember that although she joined the dots to a lot of other conditions. I read before my daughter was diagnosed though so wouldn't have seen the relevance. Thanks, I will revisit 👍🏻

[WIZARD6787]

Thank you very much for the link. I have been working with my understanding that I experience functional B12 deficiency and have my whole life due to a transcobalamin issues and that death is not the one and only possible outcome.

I found this article emotionally helpful.

I did notice the two articles I have read that did not deem death as the only outcome were from different countries. This one from Australia and another one from China.

In the UK the treatment for functional B12 deficiency and PA is the same. That is not scientifically defensible although common practice.

My current self treatment is as follows:

.50 mg SC Hydroxocobalamin. Three times a day.

5 mg SL methylcobalamin/adenosylcobalamin 66%/33% three times a day and as needed.

Pyridoxal-5-Phosphate 25 mg liquid in water twice a day.

Simple Solutions' in lieu of a B-complex once a day.(Which includes .35 mg of methylcobalamin and 20 mg of Pyridoxal-5-Phosphate)

Just started a trial of 2 g of Betine twice a day 8 days ago with positive results so far.

[WiscGuy]

I was diagnosed with ADHD at age 64. Similar to your comment, subsequent to that diagnosis was a turbulent time as I began learning what the effects of ADHD actually are, and how those ADHD effects explained so much of the negative aspects in my life. In addition, unknown to me, at that time I was experiencing increasingly significant neuropsychiatric symptoms of B12 deficiency, including irritability and increased anxiety. So when I was finally diagnosed with B12 deficiency, and started learning what the symptoms of B12 deficiency actually are, I needed to go through a whole new round of understanding who I actually am, beneath the symptoms of B12 deficiency, and given the combined effects of ADHD and B12 deficiency (I feel that many symptoms of ADHD are exacerbated by B12 deficiency symptoms).

As I have attempted to find out what is known about B12 deficiency, I have discovered various correlations with other of my diagnoses, including many connections with ADHD. Many of these lines of research are in their infancy, but are illuminating none-the-less. For example, here is a more recent study (abstract) that looks at connections between B12 deficiency or insufficiency with both ADHD and autism (ADHD and autism are quite commonly connected in research studies).

tandfonline.com/doi/abs/10....

[Cherylclaire Forum Support]

Thanks very much, VellBlue - this really interests me.

I was given a functional B12 deficiency diagnosis back in 2016 by a clever GP who then (despite objections from colleagues) ensured frequent B12 injections were administered for as long as they were helping me improve - and only passed me on to secondary care six months later, when even this no longer helped.

I got to meet haematologists, gastroenterologists, a neurologist (who actually suggested B2), a dietician, an ENT consultant, an oral medicine consultant, a rheumatologist, a saliva gland consultant and a team of Adult Inherited Metabolic Diseases consultants - who were lovely; apologetic about not being able to find a reason in my DNA for raised MMA.

My greatest disappointment by that stage was that I could not find any genetic link for my sister's children, who all have autism. A reason for their problems - if not an answer to them. I felt so certain that something would become evident.

A family with autism prevalent, but also Grave's disease, psoriasis, vitiligo and other autoimmune conditions present. ADHD and B12 deficiency too.

Will certainly be reading this link thoroughly. Your post has provoked some interesting responses.

[B12life]

we have ASD in our family.

Amazing article. Thanks!!!!!!

It has encouraged me to be more religious about taking my othe b vitamines as well!!!!!!!

[VellBlue in reply to B12life]

Yes, I think I need to look at that also...maybe the functional B12 deficiency is caused by other deficiencies!

[VellBlue in reply to VellBlue]

What really amazes me is all 600 ASD samples had functional B12 deficiency. Maybe doctors need to realise this is more common than they think!

[Dilly_blue]

I have always wondered whether the link between B12 deficiency and autism is the gene CLIC4. It has been identified as a candidate gene for autism (you can Google this, it is a fairly well-established link).

And also, within separate research on functional B12 deficiency (called something like the proteome of functional cobalamin deficiency, sorry I can’t remember the exact title, but a Google of the above phrase will find it), it identifies the effects of raised MMA and homocysteine levels at a molecular level. Apparently high MMA / homocysteine levels have a cascade effect on the expression of hundreds of other genes (expression is sort of like how well the genes operate). Out of these hundreds of affected genes, the research identifies about 5 other genes that are affected most by the raised metabolites, one of which is CLIC4, the expression of which is downregulated (ie similar to the operating volume of the gene being turned down), by raised metabolites. Ps - I am not a medical professional or scientist, just an interested layperson!