| Alt.Support.Thyroid | |
by Mary J. Shomon Next page > AST: Can It Change Your Life? > Page 1, 2, 3, 4
It may be a person who has just gotten a call from the doctor's office saying: "You're hypothyroid, so we've called in a prescription." Or a Graves' disease patient struggling to come to decisions regarding radioactive iodine, and deal with thyroid eye disease. Or a woman who suspects she has a thyroid condition, but can't get a doctor to take her seriously. Whatever starts the journey and launches the search for information, if a person with a suspected or diagnosed thyroid condition is looking for help in the Usenet newsgroup environment, he or she will find alt.support.thyroid (a.s.t.), the newsgroup dedicated to thyroid information and support.
In my case, I was newly diagnosed with hypothyroidism, it was the fall of 1996, and I had just gotten online access using AOL earlier that summer. One of the first resources I found online was a.s.t., and I jumped in with a fervor, meeting other thyroid patients -- the first I'd ever met in my life -- discovering that my symptoms were not isolated, hearing other people's experiences with being hypothyroid, and generally feeling the immense relief that comes from realizing I wasn't alone. It was my participation in a.s.t., from 1996 to 1997 that inspired me to start this patient-oriented thyroid web site with what was then the Mining Co., and now is About.com, and inspired me to also write a book for those who did not have access to the Internet, and who therefore truly are alone in their struggle for information and understanding. The back and forth with other thyroid patients that I entered into on a.s.t. reading the fear in the posts of the newly diagnosed, hearing the frustrations of those who struggled to even get diagnosed -- all this started me on my path to ultimately end up as a thyroid patient advocate. So a.s.t. has played a very important part in my life.
Newsgroups are as different as the thousands of topics they cover, and sometimes have the reputation of being fairly chaotic. But the a.s.t. group has always been a warm, supportive, and informed group.
It's my pleasure to have had the opportunity to, in January of 2001, interview several active and dedicated members of A.S.T to find out more about a.s.t., what it's all about, and even some historical background about how it got started almost five years ago.
First, let's meet the international group of a.s.t. members who generously agreed to share their thoughts, stories, and time here at the About Thyroid site, and who regularly do the same at a.s.t. ...
Mag and Robert Tait
Mag, from the U.S., "was diagnosed with Graves almost 6 years ago." Her husband Robert was one of the founders of a.s.t. back in 1995.
Elaine Poleshuck
Elaine, from the U.S., tells us: "I'm 45 years old. I was diagnosed hypothyroid 11 years ago, but first went to the doctor with hypothyroid symptoms 15 years ago. At that time I was told that I couldn't have a thyroid problem because I was nursing a baby. I was told that I was tired and depressed and should see a psychiatrist. Looking back I realize that I had been having symptoms since my late teens. Five years after a negative antibody test I came up positive for them and thus am Hashimoto's hypothyroid."
John Riggs
John, from the U.S., shares his history. "I have absolutely no idea how long I have had a thyroid problem. My wife is a medical technologist and SHE is the one that found it. My doctor didn't believe it and ran his own tests and confirmed even higher numbers that seemed to increase each time he ran a test. We ran a test for Anti-TPO antibodies and I had a nice small count of 1,052.4 to confirm a positive diagnosis of Hashimoto's thyroiditis. That was in the last half of 1998."
Lois Sommerfield
Lois, from Canada, says that "my first hypo symptoms (hair loss, fatigue) started when I was about 12, and they got worse in my mid-thirties, but I wasn't diagnosed until I was 38, by a naturopathic doctor. He asked for a copy of the lab results that I got via my GP, and he thought my TSH of 4.2 was a little high. Even so, he still didn't think I was hypothyroid, but he got me started in that direction. I'm now 41."
Sara Avery
Sara, from the U.S., will be 30 in April. "From a look at my history of symptoms I think I've had endocrine problems since early childhood, although they've only been diagnosed within the past 2 years. At the present moment, my knowledge of my condition is that it is an overall suppression of my endocrine system of undetermined origin medical origin. I believe the origin to be childhood emotional stresses."
Lucy Chapman
Lucy, from the United Kingdom, "was diagnosed with Hypothyroidism in May 1998, when I was 37 years old (I am now 41)."
Now, let's hear, in their own words, more about a.s.t.
Mary Shomon: What is the History of A.S.T.?
Robert Tait shared this background on how a.s.t. began...
"When my wife came down with Graves back in '95, I put an enormous effort into finding resources on the web that could help my her (and myself) choose how to deal with this illness. This was at the very beginning of the growth of the web, and resources were few and far between. All of the thyroid links that were found were linked through my home page: http://ic.net/~rt/thyroid1.htm.
At this point, it has only historical value, but back then it was a lifeline, and represented many hours of searching.
By running a UNIX utility that sifted through every article header in every newsgroup available on the news server (it took several hours to run) a very long list was generated, but when dogs, horses and cats were
filtered out, the list became quite small. It was through one of those postings that I came across Mary Brenen. She had posted to one of the general medical support groups. Mary was in the early throes of the
Graves', as was my wife. Her support was great, we passed information back and forth, and helped cheer each other up. It was her idea to start the newsgroup, she just did not know how to go about it. (Duh -
Why didn't I think of that! That was right up my alley as the Information Technology manager with the Internet resources of U of M at my disposal) Thus alt.support.thyroid was born. The newsgroup was created 22 Jan 1996 15:42:43 GMT. For historical accuracy, the newsgroup was created by one of my staff at my request.
When starting the news group, I considered requesting a more formal newsgroup (anyone can make an "alt" group any time) like med.sci.thyroid or some such. To create a more formal group, a moderator is expected and the creation of the group would have to go through a vetting process. The early idea was to start the "alt" group and then create the "med.sci" group later, if there was a reasonable amount of traffic. I put a lot of effort in to the group for several months, and realized that I did not want to become a full time moderator. Since then, several moderated forums have sprung up.
Oddly, my ISP did not carry the newsgroup - I had to request they add it to their list. Some ISPs do not routinely add "alt" groups.
The interest in the group was amazing. I advertised the site on a few medical groups, and people came. Voices from the ether crying out in pain and puzzlement. I stayed pretty active on the newsgroup for almost
two years. I lost a lot of respect for physicians over that period, there a lot of horror stories out there. Too often I would sit in front of my terminal shedding tears over people who had been misdiagnosed,
misinformed, and mistreated, and were just plain miserable.
In the meantime, Mary Brenen started an alt.support.thyroid web (http://www.geocities.com/Athens/3626/) site.
After the first year a wonderful thing happened. Many of the people that joined the group were getting well. Many people recover from graves in 6 months to a year, and those that were getting better were sticking
around to help those that were just diagnosed. The group had critical mass and was self perpetuating.
I have not been involved in the group in any substantial way for four years. It's in the hands of people that know the disease.
So, technically the group was started in Michigan, that is where the origin request for the formation of the newsgroup was issued, but it really started in Virginia, and quickly had a global following.
When I checked the AST Web site in late 2000, the counter showed 8,699,096 hits. If one percent of one percent of those hits resulted in someone getting better care, a better understanding of their condition,
or some consolation, then we have done quite well. 'We is Mary Brenen, and all the other people that contribute to the newsgroup, but I allow myself to wallow in the of success of those efforts.
Mary Shomon: How did you personally "find" or end up at Alt.support.thyroid?
It seems that most people ended up at the a.s.t. newsgroup by roundabout means -- except John, who "made a fast inquiry on the net and arrived at a.s.t. ..TADA!"
In Lucy's case, she found a.s.t. when she was searching through the newsgroups, trying to learn what newsgroups were all about, in October 1998.
For Sara, a.s.t. was recommended to her by an online friend from a lowcarb diet listserv. Says Sara, "Lowcarb email lists were my entry point into online health information/research."
Lois felt that finding a.s.t. was really somewhat of an accident. "I got a computer with a modem in the fall of '98, and I was trying to find my way around online. In Outlook Express, I saw something called 'Newsgroups,' so I followed all the steps. When I had to choose subjects to search for newsgroups, I thought about my naturopath's concern regarding my TSH of 4.2, so I entered 'thyroid,' and the rest, as they say, is history."
Elaine first found a.s.t. awhile ago by searching for "thyroid" in newsgroups. At the time, she decided it was too overwhelming and she didn't follow it. But in 1998, Elaine was diagnosed with type II diabetes, which she says "turned out to be related to being hyperthyroid at the time - I haven't had a problem with blood sugar since adjusting my dose. I participated in the diabetes news group to get as much information as I could. It was here that I 'met' BL, who was also a participant on a.s.t. Some of the discussions dealt with Polycystic Ovary Syndrome (PCOS), and at some point she mentioned T3. She recommended I look into a.s.t.
And, in Mag's case, she was lucky enough to have a husband who basically helped create her a support group! Says Mag, "When I was diagnosed with Graves almost 6 years ago, Internet resources were much harder to find. As a result, my husband, who was well versed in computers, and a woman with Graves from Virginia who had 'bumped' into each other in their search for info, began the a.s.t."
Mary Shomon: What makes you choose to get your thyroid support at a newsgroup, rather than a bulletin board, or forum, or via a listserv?
In Lois' case, she arrived and never left! Says Lois, " I didn't exactly choose a newsgroup; I simply landed in this one, and I get so much from it that I haven't wanted or needed to go to any other group for my information and support."
Some members offered practical reasons. Says John, "I prefer the Internet newsgroup. It is quick, easy, and more like mailing a letter to a friend than any other format I have encountered. I also don't have to deal with unsightly ads ( I always block spammers)."
According to Elaine, "The format of the newsgroup is easier for me to follow along. With the settings on my news reader I download and view only unread messages, so the threads are easy to follow. I find it harder to follow threads on bulletin boards, they seem scattered. "
Others like the diversity and technical information they find at a.s.t. Says Sara, "Although I have spent quite a bit of time at the about.com thyroid forums and the Wilson's Syndrome forum now on e-groups, when I am pressed for time the newsgroup continues to be where I return. It is simply the most diverse and well-informed group of "thyroid people" on the net. At this point it's also the only place I can ask technical questions and have a hope of having them answered well."
Warmth and support seem to be key ingredients. According to Lucy: "a.s.t. newsgroup members offered me so much support when I first posted my questions - I was not made to feel foolish because I didn't really understand all the ins and outs of my condition. Advice was offered to me in layman's terms, so I found it easy to understand the info."
And Mag, who was there from the beginning, enjoys the freedom, along with the support and camaraderie that has grown up with the newsgroup format. "While there is no formal leadership or rules, it somehow is wonderfully self moderated. People are free to bring up whatever "out there" ideas they have, and they are discussed without anyone getting belittled, yet with accurate or more scientifically based information being inserted into the discussion just to keep things on an even keel. I do participate in one bulletin board off and on, because there are just more people on it with eye disease needing some support, but find the "rules" too rigid for a good give and take."
