Hello all. I am posting this in this forum because when I did a search of posts , this was where most of the posts regarding Hidradenitis Suppurativa seemed to come up.
I have spoken to several of you via email about the hormonal connection of HS and PCOS and related disorders and I told you there was new theories about the why's and how's of how it works. Well, in the HS community we have one hormonal guru that has helped her daughter who suffers from HS treat her condition. I just wanted to pass along some info she has posted elsewhere in the hopes that someone might be interested in it.
Just as a side note, there is also a lot of talk in the HS community lately about radiation treatment and its effectiveness on HS. It is promising so far. Once I get a chance to weed through the info, I would be happy to post more for those who are interested.
Anywho, here is the post about hormones and HS and all that jazz. I may add more later....
>>>>>To all HIDE members. You wanted someone to research this so I did, (or I researched the articles, there is a difference) this took a lot of time so please
read the whole post even if there are some areas that you do not understand, there is also important info at the end. Thanks Brenda
This may me a link for someI JUST FOUND THIS AND IT BACKS UP WHAT I HAVE BEEN DOING AND MAY BE OF SOME HELP TO YOU..I have always
thought this was an androgen (hormone) related disorder go to color=#0000fftarget=new>
http://www.ivf-et.com (may have to type this URL in, or keep trying, sometimes it is difficult to access) then scroll down to Polycystic Ovarian Disease and read, then scroll down to Hair and Skin and this
has been updated, it did not have HS here before. I have read the Drs. bio and sounds like he has the background to uncover this (Very bright guy by the sounds of it with both an MD and Ph.D. and has been associated
with some of the finest hospitals in the world, Yale, Hopkins, & Edinburgh to mention a few). I do not know him and have not spoken to him, but from all of my reading he has stated this fairly simply, for a condition that is very complicated. I do not endorse using him; I am sending you to this site to read the information only. There are I'm sure other Drs. in your own area that you can go to.but he is the only one that I have found that has HS on his site. Reproductive medicine is a new area that includes endocrine,
gynecology, urology & reproductive biology. If you do look for these specialists in your area, make sure that their practice is not restricted to infertility only. (Unless of course that is an area you are also interested
in) I do not know the cost and I am unfamiliar with anyone's individual health plans and many I know do not have insurance. This just back ups my own theory.
I wrote this a number of weeks ago and kept updating it as I was going, to present this to this discussion board at some point ... I have other articles that I have gathered and cross referenced but the above site states
things much more simply and the endocrine area and androgens are very complex. Since I had very few responses back to the tests that I had asked about, I realize that not many people have gone in this direction. I believe that HS is an androgen-related disorder. I have been reading about HS since my daughter was diagnosed 5 years ago. I don't think that there is a
medical article that I have not read. (And some 10 times) I am merely giving you my opinion of all of the studies that I have read. We have managed to keep our daughter in control and pain free for 2 1/2 years. The downside is, it was not totally easy in the beginning but I also had access to the German web site that showed pictures of severe HS and that is what motivated
me. If my daughter had been diagnosed with Diabetes, I certainly would have followed the diet and the regime of drawing blood and injecting insulin. So that is the background and the short story ... I also do not know if this will help everyone, or if anyone is interested, or for those that have suffered with this for many years if this is an option, all I can tell you is that she had 23 lesions, some were lanced and we had 1 I & D with wick, and her case was really smoldering. She now only has a few old scars in her groin area.
I believe that this is probably transferred via genetics,too many people have a history of androgen problems in their family. I also believe that HS is related to Polycystic Ovarian Disease (PCOS), and Male Pattern Baldness. Women with PCOS have an androgen disorder, when I researched PCOS 4 years ago it said there was an acne relationship, now there are many on the
site with HS. The Drs. that deal with PCOS may be of help to some of you. Some you may recognize yourself in the profile, but also note you do not have to have all of the symptoms to have PCOS. My daughter's only symptom was being a little heavy around the middle; I just had a gut feeling that she was insulin resistant even though her measured insulin levels were normal.
My belief is the wrong Drs. may be looking after HS, no offence but unless someone has been getting good results many are just treating the skin and not any underlying problem. I believe that surgery is only effective when there is no other solution, and unfortunately for some, HS can get so out of control that is the case.
We did the zone diet (others are recommended on the PCOS site but this is what worked for us) (note weight is a very sensitive issue in this group, people with PCOS have great difficulty losing weight and it is not
their fault) (if you fall into this category, the upside is it may have more to do with hormones and you can lose some of the guilt) I believe that part of
the problem with HS is being insulin resistant.see the web sites, it will explain more.(one other note is that people who are not over weight can have insulin resistance). Increased insulin in your system will then generate a response thereby increasing your testosterone.
I believe there may be also an abnormal end organ response to the testosterone at the terminal hair follicle site. Also, I have very poor will power when it comes to vices and me, when it was my daughter, I was on a mission. Most would not know she has this major disease and I know many of you hide it well, but she is actually pain free, knows that she is not like others, but socially etc. she does not suffer. We did the anti androgens and the BC pills (used one that the progesterone part in it was an anti androgen and estrogen component will raise SHBG) and now have her blood in our target range. (Our target range is to have very little free testosterone, low side or below normal)
For the men, you obviously do not have PCOS, but I do believe the underlying problem is androgen based, (works the same in men) also while I realize that you would not want to take BC pills, there are drugs such as Finasteride (blocks 5 alpha-reductase) have been used for men with Male Pattern Baldness.also an androgen related disorder. (Only one letter with reference to Finasteride and HS, a 56 yr. old man with HS for 10 yrs. and a 55 yr. old post menopausal insulin-dependant diabetic women that had HS since she was a teen, both short trials, but appeared to have significant
improvement) or anti androgens such as Aldactone and there are others. Metformin may also be an option; it enhances the body's sensitivity to insulin.
A recent e-mail that I sent a group member and it may summarize the above for those that want details to our theory. We think that HS is a result or clinical condition of an abnormal response to elevated androgens--can come from 2 sources ovary (gonad, women) or a problem with the adrenal cortex. In men the testes (gonad) or from the adrenal cortex. These are the two ways that elevate androgens. Testosterone is a steroid that is fat soluable, gets bound to the protein SHBG then when it gets circulated at the skin
level or any other end organ level, there is a protein that comes off to the free form. The unbound testosterone (free of the protein) that is the active
ingredient. Skin and hair follicles have androgen receptors that are stimulated by the "free testosterone".
In HS we believe that there is an end organ receptor, which has an abnormal response. The goals of our therapy with our daughter have been to decrease the levels of the free testosterone as low as possible and/or to block the androgen receptor. Anti androgen pills such as Aldactone/Zinc etc. blocks the receptor. The BC pill raises the SHBG so that the total testosterone is lowered and therefore the free T is lowered. Finasteride, which we have not tried, is an enzyme blocker, which blocks conversion of testosterone to dihydrotestosterone. The tests that I would recommend are total serum testosterone, serum free testosterone, SHBG, DHEA sulfate, serum dihydrotestosterone, FSH, and LH. Also, after discussion with your Dr. I would add some of the tests from the web site.
We also have many in the group that are anti pills or cannot take BC pills, others may have side effects for you ... I am just giving you the info and then
if you are interested you can discuss this with your Dr. I am also not saying this is a cure, but may be a way to control this disease for some..we have a wide range of stages in this group.
These are some e-mail sites that you may want to visit a href=http://www.thorne.com/townsend/mar/wns_update.html
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http://www.thorne.com/townsend/mar/wns_update.html (I'm not sure if you can get into this site, it does block me out at times, again you may have to type in.)
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http://www.pcosupport.org read the PCOS info, then go to
discussion boards on left, will get you to next page, hit PCOS a general discussion, that will get you to obygnet, then type in hidradenitis and read, then boils, then groin, then cysts. Many people here have HS and don't know
it!! Then you can go back to the professional medical directory and see if there is some one in your area that can help you or look at who is on their medical advisory board and see if someone is in your area. There are some listed for New York and Houston.
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http://www.mc.vanderbilt.edu/peds/pi...c/polcysov.htm Look at Paragraph 4.
Lastly, many Drs. still do not know much about this disease, I believe they are frustrated too by the cyclical nature of the disease and without medical
references and no recent posted literature they keep doing the same thing. (And of course it's still not working) There are published articles but they all vary in their opinions. (There have been some studies measuring androgens, and their thought was that many with HS, fell in normal range, my position is I think people with HS have a much smaller range of normal and it is important to decrease the circulating free testosterone, that is what affects the skin) (Or if it is the end organ response, your tests may be normal) There also have been studies that support the androgen theory).
I had to take the opinions and sort through it like a puzzle to come up with my own conclusions, but I had a gut feeling that HS was a symptom of something else. I believed it was androgen based, after reading some literature from Britain. Until there is an actual cure found and the people that do the research agree, all of these will just remain as published articles. It takes a cure, that's what it takes (cures), to change the textbooks (that's where the Drs. learn from). Also, the Drs. don't read all the journals that are out there, I believe they simply don't have the time and many are written for different specialties and they don't all have access to the same information.
Also, in every aspect of your medical care until more is published it may always be a continual battle for some of you with some Drs. You need to be able to challenge them with concrete data, which should bring results (that's what Alan did, and I have done).
We used anti androgens, BC pills, zinc, diet & exercise to control this. To many of you , notice that you said your HS was triggered by the BC pill,
there are many types of "the pill", and they have androgens, this could have caused you to have an increase in your testosterone, thus triggering this for the first time. I also saw a person post that her first bout with HS was when she was in menopause and they added a testosterone supplement to her estrogen/progesterone replacement therapy. Some women are placed on Estratest for menopause. Some say that Estratest has too much testosterone for women and tends to cause acne and unwanted facial hair, if this is true then the increased testosterone may be the trigger for HS.
There has been much discussion on this board about HS being an apocrine sweat gland disease, and that is what it was once called, but the most recent literature says it is more probable to be a problem with the terminal hair follicle. AND Zinc, which I know that many people on this board have used with success, has anti androgen properties.may be the reason for the success. You may want to do a general search of PCOS, I also found 1670
other sites, and you may also want to look at male pattern baldness.
I do not endorse any site or any Dr.but this may help some, once again if any appointments are made from any site, make sure that fertility is not their only area of expertise or you will be sappointed.
Lastly, for all of you that believes you have noticed a pattern with your hormones and your periods, I urge you to look into this. Those are my thoughts for today, I hope some of you find some help with some of
the info that I have supplied, but as I said above, some of you may be interested and others not. Be well and pain free. Please take this info in the spirit that it is given, if someone, somewhere is helped then my mission is this area is accomplished. This was supposed to be a short note, but it was not possible ... more later ....<<<<<<
Karen
Hidradenitis Suppurativa and androgens etc. 
