POTS with Hidradenitis Suppurativa

[invisiblyme]

I have had POTS for many years and also Hidradenitis Suppurativa for about 12 years.  I am just wondering if anyone else that has any form of Dysautonomia has HS also.  Both are so frustrating(to say the least).  I can't help but to think that they have to be related in some way.  Both my POTS and HS are believed to be genetic.  Any help or comments would be GREATLY appreciated.

[RyverLaMer]

I have hypermobile Elhers Danslos Syndrome, POTS, and Hidradenitis Suppurativa. I also have Celiac Disease and currently under investigation for Crohn's. I am also autistic with ADHD and panic attacks. Neurodivergence, Autoimmune disease, skin issues and Elhers Danslos run in my extended family, even my own children have inherited some of my health issues and all of them have been diagnosed as autistic, 2 also with hEDS, one with POTS. I been discovering many connections with connective tissue disorders, disorders of the autonomic nervous system, and Hidradenitis Suppurativa.

Here are some articles I just read in parallel to one another, that stimulated deeper thought into the matter:  
(Feel free to reach out if you have questions or I can assist you on your research journey: river (dot) lamer (at) Gmail (dot) com

HS and Elhers Danslos Syndrome
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10236182/

Sweating and toxins:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8998800/

The role of apocrine glands:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1281456/#:~:text=The%20secretions%20of%20sebaceous%20and,sweat%20drops%20from%20the%20skin.

Heavy Metal Toxins in Autistic People
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9820494/

Approach to treatment of HS in people with I/DD
https://vivo.weill.cornell.edu/display/pubid36745196

Low Socioeconomic Status and Prevalence of Hidradenitis Suppurativa
https://jamanetwork.com/journals/jamadermatology/fullarticle/2688584

[southernlights]

I have the same diseases as you. I have Hashimoto's and also POTS. Started having the skin disease in late teens every now and then with period, but now in menopause it is flaring up again. It is very frustrating that there is few ways to control it.

[LivingInHope]

Yes, those with Grave's have a hyperactive thyroid.  Are they monitoring you regularly for your thyroid condition?  Have you ever tried witch hazel astringent?

I am a fellow P.O.T.S. sufferer- diagnosed nearly 8 years ago.  I was told about the hereditary factor by the dr. who diagnosed me and I later learned I have a second cousin who also has it.

[invisiblyme]

I have had my TSH and T4 checked.  I was told that I actually have  an underactive thyroid and was put on synthroid.  I don't know much about Grave's disease but I believe that it is the opposite of underactive thyroid?

[LivingInHope]

I don't have that disturbing skin condition (have P.O.T.S., IC, migraines, IBS, IST), but I looked up hidradenitis suppurativa and saw on Mayo Clinic's website that sometimes it is associated with Grave's disease and Crohn's... have you had free T 3 and T 4 tests about your thyroid function ever?  It can cause a rapid heart rate when a person has Grave's disease (hyperthyroidism), though I don't believe it's limited to the upright position.