• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

30% of PWME may have thyroid issues

Marco

Grrrrrrr!
Messages
2,386
Location
Near Cognac, France
Someone kindly recommended a video presentation by Lucinda Bateman from last years IACFSME conference where she summarised her hypothesis of ME (ME's) based on emerging research integrating findings on :

autoimmunity;
the brain;
and the autonomic nervous system.

It's worth watching (Ihr 15min inc Q&A) in full.


However at 16.00 min in she refers to data I think she presented as a poster that claimed that 30% of her patients have, as I heard it, hyperthyroidism and that while some of that may be due to inappropriate medication, that wouldn't be enough to explain these high rates. Later in the presentation she refers to hypothyroidism so I'm not sure which she meant but regardless high rates or thyroid problems have been discussed here but without much data to go on.

Anyone know where the data came from and it this was published?
 

voner

Senior Member
Messages
592
Someone kindly recommended a video presentation by Lucinda Bateman from last years IACFSME conference where she summarised her hypothesis of ME (ME's) based on emerging research integrating findings on :

autoimmunity;
the brain;
and the autonomic nervous system.

It's worth watching (Ihr 15min inc Q&A) in full.

However at 16.00 min in she refers to data I think she presented as a poster that claimed that 30% of her patients have, as I heard it, hyperthyroidism and that while some of that may be due to inappropriate medication, that wouldn't be enough to explain these high rates. Later in the presentation she refers to hypothyroidism so I'm not sure which she meant but regardless high rates or thyroid problems have been discussed here but without much data to go on.

Anyone know where the data came from and it this was published?

marco,

Cort Johnson Has A blog on this video and he heard it like I did - hypothyroidism....

http://www.cortjohnson.org/blog/201...ng-chronic-fatigue-syndrome-dr-bateman-talks/

I have no idea where her data is coming from, but I suspect it's from her patient group. hopefully somebody else will have better information than this, perhaps someone who attended?
 

Marco

Grrrrrrr!
Messages
2,386
Location
Near Cognac, France
Last edited:

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
Thanks @Marco. She really described my illness, including hypothyroid. How inspiring to listen to someone who's taking a big-picture view. :love:

I wonder how she addresses mitochondria.
 
Last edited:

wastwater

Senior Member
Messages
1,271
Location
uk
Dr hyde mentioned hypothyroidism a lot,the type without antibodies.I think its a side effect of the ME process.
 

Snookum96

Senior Member
Messages
290
Location
Ontario, Canada
Yes, Dr. Hyde sent me for a thyroid ultrasound despite normal tosh, t4 etc, etc. Mine is borderline enlarged so we have to repeat.

The way he explained it to me is that if one part of the thyroid is under active and one part is overactive blood work can come out normal. He also said not to take thyroid medication from Drs who aren't knowledgable about my other conditions.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
I went down the whole hypothyroid rabbit hole a few years back. My TSH has been very slowly rising and the T4 dropping over the course of my illness so that they are now only just in range. Dr Myhill suggested thyroxin which did nothing and then made me FEEL hyperthyroid despite bloods hardly moving, so we gave up.

Then a couple of years later I looked into it more, started hanging out on thyroid forums and saw myself in them so went to see Dr Skinner in the UK who believed ALL M.E was undiagnosed subclinical Hypothyroidism. Had a few really great months on Armour thyroid before crashing so hard I have never got to back to baseline from there three years later. So gave up again. Looked into adrenals - yes mine weren't good and DHEA so low it could only just be measured. Supplementation was a disaster so once again I have given up, despite having so many of the symptoms.

Now I have a Lyme dx with other assorted co infections and I believe KDM feels the thyroid suffers but will begin to recover once the patient is being treated. Unfortunately I now have MCAS which makes most treatments tricky to say the least.
 

wastwater

Senior Member
Messages
1,271
Location
uk
In oslers web it mentions sky high levels of interleukin 2 (IL-2) this has a bad impact on the thyroid.
Does anyone know are interferon gamma and IL-2 the same thing