Hidradenitis Suppurativa Support Group

Hidradenitis suppurativa (hi-drad-uh-NIE-tis sup-yoo-ruh-TIE-vuh) is rare, long-term skin condition that features small, painful lumps under the skin. The disease manifests as clusters of chronic abscesses or boils, sometimes as large as baseballs, that are extremely painful to the touch and may persist for years with occasional to frequent periods of inflammation,...

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/ Hidradenitis Suppurativa Support Group

Hormone Levels

JoshM
JoshM

I finally had a Doctor that listened to my idea that something was a miss with my hormones. It turns out my estrodial level is wierdly high. The Doctor is thinking I have something called Klinefilters. That is were I have an extra x chromosome. I have been looking at med journals, articles and such online that relate to HS and hormones. It seems like testerone might be the cause of what starts the problem before our bodies start our inflammation response. Has any one, male or female, used androgen blockers? Was there any inprovement? If a male has tried them was it worth it? I've done my own research on the side effects so i know it will definitly be interesting. 

wforwumbo
wforwumbo
Hi
Had a very long talk with my derm about hormones. She explained HS is a genetic disease and any fluctuation in hormones can set it off (among other things) this is why weight loss, stress reduction, light exercise, healthy eating etc is extremely helpful for symptoms as it levels out hormones

I would not be surprised if there was an underlying hormone problem for HS patients :)
JoshM
JoshM
I'm questioning the genetic disease assumption doctors make. Because there is zero family history of this condition in my family except me unless it was miss diagnosed which is a good probability. It toke seeing a different doctor then my primary to figure out it was HS. I get ones that stay in the sub dermal layer that sometimes never make a drainage point. I'm looking into other doctors other then derm. Derm docs have been only helpful by creating a debt that ill never be able to pay off. Look into laser hair removal. Its a pain to get covered by insurance because its cosmetic and a preventive measure for HS. It wont cure existing ones but for me it has decreased the number of new spots that form in half.
Hydra89
Hydra89
No don't do any of that and laser hair removal would make it worse. You need those sweat glands to remove the toxins from your body. I did it naturally yes I tried the paleo diet but through 2 years of more research and testing on my self I found a better and more efficient way to deal with hs
timeforacure
timeforacure
Hydra89,
What better way? I’ve been dealing with this since I was a teenager, off and on. I’m currently 56. Have some remissions but it always comes back. Any suggestions would be greatly appreciated.
Mommy1104
Mommy1104
I agree with you. I found that as well in my research. But try some natural things first. I declined sprinolactoline? And humira they will cause infertility and are not safe for woman who want to get pregnant later. There was a site that listed all the good birth control for anti androgens and also the ones not to get I have a screenshot in my phone I can pull up. I too just a sleep of hormones blood tests. Waiting on the results to see which hormones are off track. Adrenal thyroid and pipituary? Glands need to function right as well and it all has a hormones connection to HS. Too high testosterone is a cause as well from what I found
JoshM
JoshM
I found out i have klinefilters which is where i have extra x chromosomes. It is rare if your parents where young when they had a child. I can get Humaira really cheap but i dont trust it since it is used for what seems like everything and will most likely end up causing more harm then what the makers have found already.