All in the Mind - hypermobility, ADHD, Tourette's

[helvella]

This morning, I listened to the latest All in the mind - and it was interesting.

I was particularly struck by the associations made between mind and body - the seemingly very physical hypermobility syndrome and other issues which might be consider more on the mental health side.

We have had many posts which referred to hypermobility/Ehlers-Danlos, and ADHD in particular.

Hence, I wrote an email to Dr Jessica Eccles asking if there is any thyroid connection.

This is her (automatic) reply - which so helpfully points out numerous links.

Hello

If your email relates to queries regarding hypermobility experiences as a patient or carer I really value hearing about your experiences. I have been rather inundated with emails since the BBC radio 4 show on All in the Mind ( bbc.co.uk/programmes/m000q8z7, 18 mins in) and I am afraid I simply cannot reply to all.

I have listed below some invaluable resources and information below. I do not have a private practice and am unable to provide specific medical advice outside my clinical practice in NHS (Autism, ADHD and TS in Sussex, UK). The Ehlers Danlos Society have a list of health professionals who are interested in hypermobility internationally ( ehlers-danlos.com/healthcar....

Although this site may change host at some point in the future the following is an excellent resource for sharing with your health care professionals ( rcgp.org.uk/clinical-and-re...

If you are interested in a broader overview of the way hypermobility affects the many systems of the body, I really recommend Claire Smith’s excellent book designed for patients and carers. ehlers-danlos.com/understan...

I prepared a lay article about my initial brain imaging research for patient support organisation hmsa hypermobility.org/ and this can be found bsms.ac.uk/_pdf/research/jo...

I would also recommend the support organisations ehlers-danlos.org/ and if in sussex sussexeds.com/

You may find some of my youtube videos of interest youtube.com/results?search_...

I have been interviewed on some podcasts

uk-podcasts.co.uk/podcast/b...

youtube.com/watch?v=2EolOcT...(Not working as expected?)

And for a longer, more scientific overview of hypermobility and anxiety vimeo.com/346710898

The anxiety trial and the brain imaging trial are now closed for recruitment however if you would like to be kept informed about future studies or receive research updates please email my PA Rosie Mulgrue [e-mail]

You can also follow me on @BendyBrain or researchgate for research updates

I have two articles which came out recently about biological mechanisms in hypermobility and chronic pain and fatigue

Opinion piece:

pubmed.ncbi.nlm.nih.gov/334...

Data paper on overlap between hypermobility, fibromyalgia and ME/CFS

pubmed.ncbi.nlm.nih.gov/334...

We also published a paper recently reviewing the current state of the art on the overlap between hypermobility and mental health issues

wjgnet.com/2220-3206/full/v...

We looked at the relationship between hypermobility and dysautonomia in mental health patients

onlinelibrary.wiley.com/doi...

Best wishes and thanks

Dr Jessica Eccles

[helvella Administrator]

My word! Despite obviously being busy, she has responded already. The significant bit being:

There are tantalising suggestions about autoimmunity in general (most common reason for thyroid problems) and hypermobility but absolutely nothing concrete.

[Aunds in reply to helvella]

I have EDS as do my two daughter and two granddaughters, as did my mother and grandmother - although they were undiagnosed. I and my two adult daughter also have central hypothyroidism, I am part of three research projects funded by the EDS society looking at links with autoimmune conditions and exploring the higher prevalence of Autism in the EDS community. I think I’m the next few years there will be interesting results emerging that will tell us what we (who have all the different conditions) already know that genetically they are linked. Thanks Helvella for sharing this.

[helvella Administrator in reply to Aunds]

Thanks for letting us know.

[bookish in reply to Aunds]

So many interesting connections. Some links to COMT enzyme SNPs, whether slow or fast, for fibro and autism and ADHD (as well as affecting catechol oestrogens and all that goes with that)

ADHD pubmed.ncbi.nlm.nih.gov/156...

Autism treatautism.ca/2017/09/20/b...

and pubmed.ncbi.nlm.nih.gov/315...

Fibro pubmed.ncbi.nlm.nih.gov/225...

and then mast cell involvement with EDS and Sjogren's and Small Fibre Neuropathy and dysautonomia,

but thyroid hormone (T1AM?) possibly having some element of control over both histamine and noradrenaline

chronicfatiguediagnosis.com...

[Sparklingsunshine in reply to helvella]

Hi

I have EDS, Fibro and hypothyroid. I've won the lottery😀

[turquoisea7 in reply to Sparklingsunshine]

Me too. I've only just started to wonder if my hypermobility has anything to do with my Hashi's. I pretty much ignored the diagnosis of JHS 15 years ago as GP wasn't interested following rheumatologist's report, so I just got on with life and kept struggling; seems a lot has changed in that time.

I do believe that in my case Dr Lowe was right, my diagnosed fibromyalgia 5 years ago was undiagnosed/borderline hypothyroid as my TSH was on the top end 20 years ago and nobody mentioned it.

Interesting link with autism/autistic features. I have never followed that up but my husband and several friends believe I am autistic.

[Tythrop]

I'm going to listen to it straight away, I have been hyperthyroidal but now hypo with anti tpo antibody .I've recently been advised to have an ADHD assessment and started reading into the subject ...wow

[Hidden in reply to Tythrop]

Have you always had ADHD symptoms from childhood?

I felt I was developing ADHD (which isn't possible according to the science) hyperfixations we're my biggest symptom... it all disappeared once I started on NDT.

[Tythrop in reply to Hidden]

Thankyou for taking an interest; I take Armour ndt and have short term memory problems,naming problems and "having too many screens open at the same time" problems . ....Anyway , at the risk of being an anorak, but incase anyone is interested I will go on to say this :- I was taking 1 grain of Armour per day then increased it to 1.25 but recently upp'd it to 1.5 ,; but then I then began to feel madder/ more anxious than ever so I stopped it all for a day or two incase I was going hyper , . But I did test before going upto 1.5 and the readings showed low in-range TSH , lowish inrange T4 and slightly above half way in range T3. I found that a bit odd because surely tsh should have dropped- off ,but I think my TSH is downregulated (stuck) following a really really overactive episode of hyper/ Graves about 22 years ago postpartum , and now 20 odd years later I'm Hashimoto hypo ( I have anti tpo antibodies) . If anyone out there in Thyroidland have any thoughts I would welcome them .

[thyr01d]

Thank you so much Helvella for following this up and getting these links. I listened and was very interested since I am very mobile as are many of my family and one of my daughters has had 3 years of being give a whole variety of diagnoses including hypermobility but with professional opinions contradicting each other! (Who ever heard of that 😀😀). It seems to make sense of my pain and fatigue even now thyroid results are ok which is cheering. To the GPs I am sadly what they call a 'heartsink patient'! Would love to hear if others are heartsinks too!

[helvella Administrator in reply to thyr01d]

I was very impressed that Dr Jessica had prepared a thoughtful, helpful auto-reply. In my experience, it was way ahead of pretty much anyone I have ever emailed after a broadcast.