Our Wiley Protocol Story

We began as a group of women interested in the ideas about hormone replacement and science in Sex, Lies and Menopause (William Morrow 2003). 

To many intelligent women (and doctors) it looked good.  Half the book is references.  An oncologist and a scientist have their names on the book.  After 9 chapters about the benefits of hormones and the dangers of going without hormones, Chapter 10, Satisfaction, goes into detail about how to go about getting rhythmic hormone replacement to restore ‘levels of youth’ seen in a twenty year old (those with low rates of heart disease, cancer, diabetes, stroke).    The actual dosing regime is listed in the appendix.  The pharmacy T.S. Wiley worked with at the time is listed as well.  


At the bottom of page 209 T.S. Wiley writes, 


“Many women all over the country, with and without cancer, have volunteered to use this protocol of treatment.  The concentrations of hormones in the cream and the doses have been arrived at by trial and error in human subjects over the last seven years.”  


The reference note for the trials is *265.  If you go to that reference you will be referred to the acknowledgments where T.S. Wiley thanks a few of her girlfriends.  


Maybe this is all just a morality tale about the need for checking references?  Anyway, we didn’t know a medical publisher would be so brazen as to publish a completely undocumented hormone protocol in the appendix.  


We used the hormone protocol outlined in the appendix of the book. We believed it was documented, that there had at least been a private study.  See the bottom of page 209.  The science in the book lent the dosing schedule credibility.  


Various doctors wrote prescriptions.  Some pharmacists said it was toxic, but we thought they were just being overly conservative.  This was cutting edge.  We thought Wiley and Taguchi were using the protocol at Samsun in Santa Barbara for cancer patients.  There were pockets of the country where a few practitioners were filling their practices with loads of new patients by prescribing the controversial protocol.   One told of “busloads of women coming up from Portland”.  


But, the dosing schedule in the book wasn’t really working so easily.  Some had a good ride for a while and others struggled immediately.    Women gathered in support groups.  


It was confusing.  For many, the estrogen part of the cycle was the first time they felt good, GREAT!, ever.  But the progesterone two weeks were hell.  Not everyone had that result, but the good and bad were confusing enough that we wanted to figure out how to make it work rather than just walking way.  And there was the threat that doing anything else would promote cancer (later Dr. Formby said there is no research to support the claim that estrogen is a carcinogen).   


We gathered on a yahoo discussion group which started slowly in October 2004 and now has a membership of 364 (as of Oct/07)  members and growing. Some members of our group had been using the protocol since September 2003 (anyone from back then definitely stopped by April 2005).  [ New members who heard of the protocol from Suzanne Somers started showing up (sick) a few months after Somers’ last book came out (fall 2006) in which she promoted the undocumented protocol.]  


Back in 2004 we contacted TS Wiley.   Many of our practitioners told us to as the protocol was so complicated and she was ‘the expert’.   We learned as much as we possibly could about her protocol so we would understand the terms. We wanted to know what women were doing, to have the reportedly great results. We took it seriously. 


We developed a Frequently Asked Questions (a FAQ) section on the website based on public lectures, interviews, and support meetings we attended and videotaped. We did the first stage of documentation for the Wiley Protocol and published on our website. We stayed in contact with the author, who calls herself a scientist. We tried to make sense of it. We ran into lots of serious problems and were given many different explanations. Many of us were using less and less progesterone because we just couldn’t take it, but we were told it was dangerous to lower it or we were setting ourselves up for cancer. We can document this.


T.S. Wiley diverted us from talking to the credentialed scientist, Dr. Bent Formby, who gathered the scientific references for the book and attended Wiley Protocol support meetings sitting by Wiley’s side. Dr. Taguchi supported the dosing schedule in the book including the belief that it was dangerous to use less than the progesterone listed.  


But something just wasn’t right. We lost trust in T.S. Wiley.   Our sense was that she displayed no genuine curiosity about the mounting list of side effects. They were being explained way with odd reasons (a shift in the earth’s crust causing a Tsunami which would affect receptor values in January of ’05, bad product, goofed up receptors, you aren’t getting to sleep early enough, etc.).  That was the clue. Scientists should be curious. Where was the curious mind?


On May 16, 2005 we found and made contact with Dr. Formby to discuss our problems with the Wiley Protocol*.  He was shocked that so many women were trying to to the protocol and that any doctors had actually written prescriptions for it.   We learned that he did not support the dosing schedule in the appendix which is the basis of the Wiley Protocol*; a protocol which has a registered pharmacy, but no documentation to demonstrate that it has passed a preliminary review.  He said, “she just tested it on herself and a couple of girlfriends”.   He supports the assessment that we have had too much progesterone and too many hormones overall.






Summer 2005 ——————-


Preliminary Review of the Wiley Protocol* Begins


Since the announcement of Dr. Formby’s interview on May 20, 2005, the members of Rhythmic Living have started uploading first person stories and desperately trying to find a way back to health. Many women are too ill and depressed to finish writing at this time, but we will continue to upload stories.


Dr. Formby has been preparing literature excerpts for us about progesterone. We have been ill, struggling, and embattled. We are deeply grateful to Dr. Formby for his focus on reality, science, and his efforts to find an ethical method of communication with us – he cites the literature.


T.S. Wiley and her agents blame us for our own troubles. They claim it couldn’t be the ultra high doses of an undocumented protocol – it is only our inexplicable unwillingness to use enough progesterone. 


See www.wileywatch.org for the start of further scrutiny.


Why is it so hard to say that a controversial ultra high dose hormone protocol doesn’t work?


Our goal is to recover and turn RhythmicLiving toward further understanding of BHRT and overall health, but right now – we are suffering.  No one knows how long it will take to detox such high doses of progesterone.  


Many of us have found new doctors to work with or returned to old doctors or have doctors who are very shocked that the protocol was not documented. We need to communicate online to discover what happens when our endocrine systems have had the equivalent of a nuclear blast.


We want to warn other women and doctors that there is no full disclosure with the Wiley Protocol.


Moderators of Rhythmic Living

Summer 2005