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Have you had experience with the Wiley Protocol?

By March 3, 2009 - 11:15am
 
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Has anyone had experience using the Wiley Protocol of hormone replacement therapy?

It is a method where bioidentical hormones are prescribed and are given transdermally -- through the skin -- in a patent-pending cream. A primary

difference between this protocol and some others is that the hormonal levels rise and fall, similar to the way a woman's normal cycle did when she was still menstruating.

There is some controversy on the web about T.S. Wiley's qualifications for developing a medical protocol, since she is not a doctor herself, she studied anthropology (though she co-authored the book "Sex, Lies, and Menopause" with Julie Taguchi, M.D.)

Some women claim wonderful results; others claim very troubling side effects. Does anyone out there have personal experiences to share?

Add a Comment317 Comments

EmpowHER Guest
Anonymous

So I learned that the Boulder, CO osteopath who hawked the WP to hundreds of women (and used it herself) now has breast cancer.

May 22, 2012 - 6:55am
(reply to Anonymous)

We have an oncologist who treats breast cancer patients with the Wiley Protocol. We have NEVER suggested the Wiley Protocol prevents or treats breast cancer to the general public, but to suggest it causes it is completely without merit, or evidence. It is given to breast cancer patients today because over 10 years we see no increased recurrence or aggression in breast cancer in patients given the Wiley Protocol, and they can actually live their lives on chemo. It's a beautiful thing, and the study is being made ready for publication as we speak. If we didn't have detractors or people trying to put us down, it would mean we weren't doing anything important.

Are you an oncologist? Perhaps you would like to speak to one about breast cancer and the Wiley Protocol. We take these concerns (or in this case accusations) very, very seriously.

Jake Raden
Wiley Systems

May 22, 2012 - 10:32am

I didn't see where Jake blamed it on the patient, Anonymous person. His response was respectful and informative. It seems to me that your response is defensive and angry, though I appreciated the link and read the document posted there. I'm not so concerned about bioethical standards set by the government with regard to companies producing natural alternative health products which pharmacies can't patent and thus profit from. The short report from your link above was from a study at a university which gets funding from pharmaceutical companies (http://www.research.uky.edu/ospa/info/clinical_info.html). The study states "A content analysis of relevant documents was conducted, followed by telephone interviews with investigators and former participants to verify facts." After this extensive investigation (I say that facetiously) the stated conclusion is there are clinical ethics breaches from The Wiley Protocol. Hello? Did anyone bother to interview current Wiley Protocol users? Nope. Here's MY experience:

I've been on the Wiley Protocol for almost 3 years now after going through menopause and it changed my life for the better. I feel healthier, sexier and happier than I have EVER been in my life. When I was young I had horrible PMS and endometriosis. I don't have any of those issues with my cycle now. It is truly amazing and wonderful for me. I'm so thankful to have found this remarkable protocol and plan to use it for as long as I possibly can. Here is a link that can verify who I am and that my testimony is true (notice the date): http://www.youtube.com/watch?v=rKYYhCYM-aw

May 15, 2012 - 10:51am

To stop the Wiley Protocol, you simply stop it. There are no more complicated instructions than that. If you'll be moving to a lower dose static regimen, work with your doctor perhaps to move into that regimen.

For there record, there is no science or data, peer-reviewed or published, which points to any action of the body to "store progesterone in thigh tissue". If this was a real thing, we would change the Wiley Protocol to address it. But it's not. Your body excretes exogenously applied sex steroid hormones in under 72 hours. In progesterone specifically, it even states pretty clearly, even on Wikipedia, that the half-life is 55 hours at the top-end, which is just over 2 days. See for yourself, look at the "pharmocokinetic" box: http://en.wikipedia.org/wiki/Progesterone

Without the high progesterone of the Wiley Protocol, you run a serious risk of not halting tissue growth from the estrogen which raises the specter of a lot of things going wrong in your body, from osteo-related issues to cancer. That's why we put the progesterone in there: it's not to make your life miserable, it's because it's the bio-mimetic thing to do. You need both hormones. Some physicians familiar with WP may reduce the progesterone dose slightly (-1 or -2 lines) at their discretion. I encourage any of you struggling with the luteal phase to speak with your doctor about that.

Saliva testing is mostly useful for cortisol testing. There are no established, accurate reference ranges in saliva for female sex steroid hormones and therefore we do not recommend it.

We do wish you all of the best whether you're on the WP, another BHRT regimen, or whatever your personal health choices are.

I do wish some of you would try not to badmouth a system that works for thousands of women over 10 years just because your experience wasn't perfect, or even was particularly frustrating. Were doing our best to do our part to make forward progress in the area of female health. If hormones were easy and worked predictably in everyone, they would be Over the Counter (OTC) like aspirin. But they're not and they don't. Please bear in mind, the 10,000 or so very happy patients on WP don't generally post on the internet about how happy they are, except very occasionally. If you want your experience to mean something on the Wiley Protocol for women everywhere, be it positive or negative, please send any adverse reactions with pertinent details to [email protected] This way we can be aware of what happened, look for trends, and try to continue to improve everyday.

I try to leave this thread for patients to talk, but occasionally I feel it's warranted to step in and try to address what to us are misconceptions.

Regarding it being difficult, it is harder than taking a multivitamin, that's true. But until someone invents something that doesn't exist allowing us to slowly give hormones over time in a way that is variable and not static, the creams are the best we can do. They're far better than any other option available today for delivering the hormones with the least unintended consequences. If you're worried about carcinogenic metabolites, eating hormones as pills and trochees is the best way to generate those. Your liver and digestive system do lots of interesting things to hormones that you eat. The whole point of trans-dermal is to avoid first pass in the gut.

I see a lot of issues here that would be remedied by all of you, the patients, having better and more complete information. If you're a Wiley Protocol patient, I really want to urge you to find us on Facebook, sign up for our consumer newsletter, and/or follow T.S. Wiley's new radio show. The more informed you are, the more likely you'll find what works for you, whether it's the Wiley Protocol, or something else. Even if you're not on Wiley Protocol, we address a large range of women's health issues in all of those places, we don't just talk about WP. See for yourself.

Jake Raden
General Manager, Wiley Systems

May 14, 2012 - 10:31am
EmpowHER Guest
Anonymous (reply to jakeWP)

Of course. Blame it on the patient. That has consistently been the WP response to those who experience outrageous side effects. I "stopped" the WP and experienced two weeks of severe body aches and pain, kidney swelling (confirmed by an ultrasound in the ER), horrific migraines, brain fog and hyper-emotionality. My new, hormone-literate doc explained that he has worked with many women coming off the WP who all experience similar debilitating side effects. Health professionals I have spoken with re: WP all agree that the dosing levels are off-the-charts, and little is known about these levels of hormone, even in the form of BHRT. See http://www.ncbi.nlm.nih.gov/pubmed/18551081 for more information. Buyer beware.

May 14, 2012 - 12:18pm
EmpowHER Guest
Anonymous

I have used Wiley Protocol for 6 month and i wanted to withdraw from first month but my doctor made me to believe it will take time to see results at least 3 to 6 month,unfortunately Wiley Protocol messed up all my hormones and i finally stopped it.Side effects are low blood sugar,depression,anxiety attacks,trembling and many many other things.I will advice to everyone to stay away from Wiley Protocol before you will get the same side effects like me.Simply Wiley Protocol dosage is extremely high for human body.

May 12, 2012 - 7:15am
EmpowHER Guest
Anonymous (reply to Anonymous)

It may help to try the DIM supplement mentioned above.

May 12, 2012 - 11:25am
EmpowHER Guest
Anonymous

I've been on the Wiley Protocol for nearly 2 years and would like to come off. I've gained about 20 pounds and I'm very frustrated. I'm a 44 year old cancer survivor and I'm in "chemo induced menopause." I've tried consulting with the team at Wiley but I just haven't gotten good advice. They want me to talk with my prescribing doc, but she isn't able to give me the help I need. On the positive side, I feel good. My skin and effects from menopause are good -- but I know the weight gain is from the hormones. I'm a marathon runner and tennis player and I have a tremendous amound of belly fat I can't shake. It is my instinct to get off the protocol but I"m nervous about how to do it carefully.
I would be appreciative if someone would recommend a good doc out there I can consult with. Thanks so much!

May 6, 2012 - 11:10am
(reply to Anonymous)

You may want to look into things like sleep hygiene, and possibly having an adrenal and thyroid work-up if you're having weight loss trouble. Taking the Wiley Protocol is not a prescription for weight gain, though the hormones do affect metabolism in a number of ways.

I'm sorry no one has been able to give you more specific advice from our team. The fact is, your doctor has to give you specific medical advice. We are not staffed with doctors who can give you that sort of advice over the phone at this point. Have you asked your physician to contact us so we can discuss the issue with them?

It sounds like there are aspects of the therapy you are happy with, so it would be nice to see you able to continue with your current symptoms addressed.

If not, there is no reason you cannot just stop the medication. You will feel the lack of hormones almost immediately however, and though it varies for every person, you will very quickly experience all of the symptoms which were addressed by the therapy in the first place. You may not be familiar with having those symptoms anymore if the therapy has helped to alleviate them. Despite what some would have you believe, BHRT is transient; it's effects come and go quickly. It's why maintenance and compliance to a prescription is so important in all BHRT regimens. If you don't put the hormones on from the outside, you won't have them on the inside. Please do not make any medical decisions without consulting your physician first.

Jake Raden
General Manager, Wiley Systems

May 14, 2012 - 2:18pm
EmpowHER Guest
Anonymous (reply to Anonymous)

I feel for you. I had a hellish time getting off this stuff, and had zero support from the Boulder, CO osteopath that put me on it. My weight gain was 35 lbs. I finally found a family practice doc with experience weaning women off the Wiley protocol. I found this doc through a Medicine Shoppe compounding pharmacy. My new doc only uses saliva testing to measure hormones as it is far more accurate than bloodwork. Also, I added the DIM supplement (Bioresponse brand) to help clean up the carcinogenic metabolites from the massive estrogen dosing utilized by the Wiley protocol. I now use static doses of BHRT creams and have been working with my doc to get the dosing right. I also use some Chinese herb formulas from a company called Health Concerns: Three Immortals, Nine Flavor Tea and Coptis Purge Fire. If you contact the company, they should be able to put you in touch with a practitioner in your area. These formulas, added to the static BHRT cream and the DIM supplement, have been a huge assist.

May 6, 2012 - 12:51pm
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