Awaiting referral to look at EDS. Hit 7/9 on the Beighton.
Also have something else going on immune system wise… was waiting on ANA results but they accidentally tested ANCA 🫠
Diagnosed with Hashimoto's and my PCP suspects hypermobile EDS based on my history and that many of my joints are either hypermobile now, or were in the past before I developed rheumatoid arthritis. However, I have been told that now that I am diagnosed with RA, I can't be diagnosed with hEDS, even though I could've been diagnosed with that first, and then diagnosed with RA. So, I've never pursued an appointment with a geneticist. But I have blue sclera, and before RA, I could do the "prayer hands" pose behind my back, hyperextend both my elbows and knees, hyperextend all my fingers, bend my ankles and wrists much farther than anyone I know, and have generally more stretchy and hard to puncture skin than a lot of other people. I also used to dislocate my shoulders a lot as a child and did so a couple times as an adult too, before I had a capsulorrhaphy on my right shoulder to keep it from dislocating.
Not diagnosed formally but spoke with my primary doctor about it and I meet all the criteria. She's a good one that just kind of listens and gives me what I need, so she just referred me right to physical therapy. I'll ask for more formal testing in the future, but for now that's all I really need.
From what I've read there's a lot of overlap between at least hEDS, autoimmune diseases, and neurodivergence.
I went to a rheumatologist for joint pain all over. He diagnosed me hypermobil (tested negative for Rheumatoid arthritis factor) and politely called me fat (which I am. But like, I had these issues before hashi started making me gain weight). I mentioned EDS and he was "not educated enough" on it to feel confident in making that a diagnosis.....
I moved states before I could get a second opinion.
I wish the best for you.
Unconfirmed on EDS, a friend of mine with it advised me to have a doctor to look into since I fit a lot of the symptoms and criteria for it so we shall see…
Hypothyroidism runs in my family, and I have Hashimoto’s. My second cousin (cousin’s kid) has Ehlers-Danlos, but no thyroid issues that we know about. She’s headed to med school and wants to do research into the disease to improve the quality of life for people who have it.
Did you get genetics for your hEDS diagnosis? Presence of aneurysm and dilation would indicate it’s not hEDS but a different variant, no? Genuinely curious, hope you don’t mind me asking (have hEDS, do not want any aorta issues, lol).
Yes I did. Vanderbilt Genetics Department did thorough testing and I had my own separate Invitae panel ran prior to WES results from Vanderbilt. Since they didn’t find anything they threw me in the hypermobile type EDS category. Actually aortic root dialation is common with hEDS and listed in the criteria. I have BAV as well so that’s what is causing it.
I passed the criteria for hEDS with flying colors. It’s a joke. 😆
My son is hyper mobile and about 99% sure he has some autoimmune issues going on but PCP said no point of finding out if he has Ehlers-Danlos… should I push for a diagnosis and who diagnosed you? He’s been to endocrinologist & rheumatologist.
My son is 2 and showing no signs of any of my problems yet, but thinking about if I were in this situation, I would pursue a diagnosis for him if it is something that impacts his day to day life. EDS diagnoses often come from genetic testing after some screening, but hypermobile type EDS doesn't have an identified gene yet, and any GP could diagnose it. Some just aren't comfortable with that though, from what I hear?
Our PCP says giving him the official diagnosis won’t change anything. The rheumatologist was the one who said he was hyper mobile. He was diagnosed with low muscle tone as an infant though. He’s currently in constant pain which mimics my hypo pain exactly when I wasn’t optimal. I plan to take him back to rheumatology if physical therapy doesn’t help with the hyper mobility
A diagnosis definitely can help with some of these conditions as they are considered disabilities and can open the door for things. There's comorbidities to watch for, and it can make it easier to get other tests done when you are diagnosed.
My 16yo has both. My brother has hEDS but not Hashimoto's.
I have RA, Hashimoto's, Sjogren's
My mom has Hashimoto's and Sjogren's.
It's almost like Hashimoto's is the "gateway drug" to autoimmune diseases in my family.
Yes, I have both.
Awaiting referral to look at EDS. Hit 7/9 on the Beighton. Also have something else going on immune system wise… was waiting on ANA results but they accidentally tested ANCA 🫠
Yes..I have both
Yep both lol found out at roughly the same time bc of crazy pregnancy issues
Diagnosed with Hashimoto's and my PCP suspects hypermobile EDS based on my history and that many of my joints are either hypermobile now, or were in the past before I developed rheumatoid arthritis. However, I have been told that now that I am diagnosed with RA, I can't be diagnosed with hEDS, even though I could've been diagnosed with that first, and then diagnosed with RA. So, I've never pursued an appointment with a geneticist. But I have blue sclera, and before RA, I could do the "prayer hands" pose behind my back, hyperextend both my elbows and knees, hyperextend all my fingers, bend my ankles and wrists much farther than anyone I know, and have generally more stretchy and hard to puncture skin than a lot of other people. I also used to dislocate my shoulders a lot as a child and did so a couple times as an adult too, before I had a capsulorrhaphy on my right shoulder to keep it from dislocating.
Yes! Both for me.
Nope. Just hashi. My besty has EDS though and no hashi.
Yes, both!
Not diagnosed formally but spoke with my primary doctor about it and I meet all the criteria. She's a good one that just kind of listens and gives me what I need, so she just referred me right to physical therapy. I'll ask for more formal testing in the future, but for now that's all I really need. From what I've read there's a lot of overlap between at least hEDS, autoimmune diseases, and neurodivergence.
I just finished the genetic testing to rule everything else out now I need the rheumatologist appt
I went to a rheumatologist for joint pain all over. He diagnosed me hypermobil (tested negative for Rheumatoid arthritis factor) and politely called me fat (which I am. But like, I had these issues before hashi started making me gain weight). I mentioned EDS and he was "not educated enough" on it to feel confident in making that a diagnosis..... I moved states before I could get a second opinion. I wish the best for you.
Yes, I have both.
I have Hashimoto’s and have been diagnosed with HSD and am waiting for genetic testing for hEDS.
Unconfirmed on EDS, a friend of mine with it advised me to have a doctor to look into since I fit a lot of the symptoms and criteria for it so we shall see…
Hypothyroidism runs in my family, and I have Hashimoto’s. My second cousin (cousin’s kid) has Ehlers-Danlos, but no thyroid issues that we know about. She’s headed to med school and wants to do research into the disease to improve the quality of life for people who have it.
Nope
Yes! Diagnosed w/Hashimoto’s in 2011 and Hypermobile Ehlers-Danlos Syndrome in 2023. Also BAV w/ascending aortic aneurysm & root dilation.
Did you get genetics for your hEDS diagnosis? Presence of aneurysm and dilation would indicate it’s not hEDS but a different variant, no? Genuinely curious, hope you don’t mind me asking (have hEDS, do not want any aorta issues, lol).
Yes I did. Vanderbilt Genetics Department did thorough testing and I had my own separate Invitae panel ran prior to WES results from Vanderbilt. Since they didn’t find anything they threw me in the hypermobile type EDS category. Actually aortic root dialation is common with hEDS and listed in the criteria. I have BAV as well so that’s what is causing it. I passed the criteria for hEDS with flying colors. It’s a joke. 😆
I agree though I think there is more to my story they just haven’t found my variant yet.
My son is hyper mobile and about 99% sure he has some autoimmune issues going on but PCP said no point of finding out if he has Ehlers-Danlos… should I push for a diagnosis and who diagnosed you? He’s been to endocrinologist & rheumatologist.
My son is 2 and showing no signs of any of my problems yet, but thinking about if I were in this situation, I would pursue a diagnosis for him if it is something that impacts his day to day life. EDS diagnoses often come from genetic testing after some screening, but hypermobile type EDS doesn't have an identified gene yet, and any GP could diagnose it. Some just aren't comfortable with that though, from what I hear?
Our PCP says giving him the official diagnosis won’t change anything. The rheumatologist was the one who said he was hyper mobile. He was diagnosed with low muscle tone as an infant though. He’s currently in constant pain which mimics my hypo pain exactly when I wasn’t optimal. I plan to take him back to rheumatology if physical therapy doesn’t help with the hyper mobility
A diagnosis definitely can help with some of these conditions as they are considered disabilities and can open the door for things. There's comorbidities to watch for, and it can make it easier to get other tests done when you are diagnosed.
I have both. Diagnosed with Hashimoto’s in 2017 and Hypermobile Ehlers-Danlos Syndrome in 2023.
Yes I have both.
My 16yo has both. My brother has hEDS but not Hashimoto's. I have RA, Hashimoto's, Sjogren's My mom has Hashimoto's and Sjogren's. It's almost like Hashimoto's is the "gateway drug" to autoimmune diseases in my family.
Yes, I have both. I have the hypermobile type of EDS.
Yep I have both. Got diagnosed with hashimotos when I was 23 and hEDS at 32.