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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

I'm a 63 year old woman and I've been on the Wiley protocol for 4 years. My bone density is the same as it was 5 years ago - I haven't lost any bone. I sleep pretty well. No hot flashes. My brain had gotten so fuzzy I was forgetting simple words constantly - that straightened out right away and I'm close to normal. I was getting troubling visual migraines and they have almost completely stopped. My libido was never very high and still isn't. I've put on a few pounds but maybe that's because I'm 63. I'm fairly active and eat a decent diet and always have. My skin looks and feels very good.
I'm in Santa Fe, nm and have been seeing a doctor there and getting the hormones fromThe Medecine Shoppe in Santa Barbara CA. They do a decent, but not perfect job.
Going back to having periods obviously is a pain in the ass but an annoyance I'm willing to have for health. Staying on the protocol is difficult since missing even one dose will throw my period off. It needs to be an awful lot easier to use before it'll ever get wide acceptance.
I'm happy to hear from other women. I'm troubled by all the controversy. But more troubled that the regular health care system seems to have disregarded the needs of millions of women. When I first heard about horse-piss hormones like premarin and how testosterone is closer to our hormones than Premarin, I swore I'd never take that. Which turned out to be the right choice. But that really leaves women in the lurch.

April 18, 2012 - 6:42am
EmpowHER Guest
Anonymous

I have had a nightmare-ish experience not only with The Wiley Protocol, but with the osteopath that prescribed it here in Boulder, Colorado. Find a responsible doc who will order the bloodwork you need and do a custom protocol for you. There is no such thing as 'one size fits all' hormones.

January 17, 2012 - 3:11pm
EmpowHER Guest
Anonymous

I am now seeing Dr. Diana Schwarzbein in Santa Barbara. She has helped me get completely off the Wiley Protocol and is helping me get my body healthy and balanced.
I am using a compounded vaginal P suppository, 5mg., in a olive oil base 2x a day from day 18-28. I am also cycling (3) Vivelle-Dot patches 2x a week and taking a .125 compounded estradiol troche 2x a day. Since the Wiley Protocol is so progesterone dominant I have a lot of progesterone stored in the fat tissues in my inner thighs. This
seems to be expelled "whenever" and can block the estradiol. This process is slow, scary, and frustrating, but we are making progress. I thank God for her everyday!
Progesterone creams get stored in fat tissues and can stay there until they decide to dislodge. Therefore, you can't regulate your progesterone use effectively and by the time you test the level, it could be totally different in your body by the time you get the results. It seems the vaginal P suppository doesn't get stored in your body and doesn't pass through your organs. I am still taking a very low dose because of P intolerance and the extra P that is being released "whenever" that is blocking my estradiol.
I still don't feel great, but I feel like I am getting better and I feel safe and very taken cared of by my new doctor.
P blocks estrogen. Therefore, you have to have enough estradiol to build a lining and only enough P to slough off the lining to have a menstrual period, but not enough to starve your body of the estrogen it needs while taking it. It's a fine balance. Dr. Schwarzbein teaches that you only replace what you have lost. You can get valuable
information by visiting her website or phoning her office. She has a series of DVDs that explain all her teaching on hormone replacement. It's brilliant and worth investigating. She also has written 3 books that are also brilliant. I wish I had known her when I first needed something.
If you haven't been on the WP protocol you are
blessed. Getting balanced will probably be a lot easier and safer.

January 11, 2012 - 5:42pm
EmpowHER Guest
Anonymous (reply to Anonymous)

How long did it take you to recover fully, and what were your symptoms?

August 8, 2016 - 1:26pm

I have been on the Wiley protocol for one month, having switched from linear bio-idential DHEA and progesterone. Within a week of starting I felt so much better - improved sleep, reduction in arthritis, improved energy and mood. However despite the claims by many, I have gained 3kg, having not previously battled with weight issues. I have tried increasing gym time and reducing calories, which would (in a past life) had me drop the weight within a week. Not so, it is dropping very slowly, gram by gram, with very hard work. Still, in the context of the many benefits, I will continue with it for a while.

My background is medical research. My doctor gave me the book "sex lies and menopause" and I found it ignorant and deeply offensive. I do not have a high regard for Wiley's stated "rationale" which is oftentimes based on the justification that other HRT efforts are "untested". Wiley proposes her method will be better - and this method is untested. The reason I chose to try this approach is not based on Wiley's opinion, but my own understanding of medicine, arthritis and how my body functioned pre-menopause and peri-menopause. I am aware it is a risk, but balance this against the long term problems of progressive arthritis.

January 11, 2012 - 4:52pm

Just as a reminder I'm Deborah Vanderstadt and I'm the one behind http://wileywatch.org.

I do not and have never lived in Port Townsend much less anywhere else in the state of Washington. Whatever motivates T.S. Wiley's husband, Neil Raden, to dress up complete fabrication as if it were indisputable fact, it is certainly not respect for the truth.

Unlike the Wileys I have no financial interest in this matter. Absolutely zero. And I mean that in the broadest interpretation possible. I have no interest in compounding pharmacies (the latest insinuation it would seem) all the way up to Big Pharma (just look back through the history of this thread for those accusations).

I could undoubtedly make some money putting ads on my site but that's something I would never do. My revenue from this endeavor over the last six and a half years I can report to the penny: $0.00. I don't even ask for donations.

I assure anyone reading this, with complete confidence, that those who have a stake in the Wiley Protocol will *never* produce a single shred of valid evidence to the contrary. Because no such shred exists.

But I've said this before. Time and again. And I'm sure this too won't put an end to the accusations and insinuations. They have a product to sell and detractors to smear.

January 3, 2012 - 4:35am

SusieT,

Thanks for the nice words, and I we're really very happy to hear you're feeling so well. I would like to encourage you to speak to our oncologist Julie Taguchi, since you've gone through a hysterectomy. She has hundreds of WP patients who are also cancer patients. There's no one else in the world with as much experience with cancer and the WP (and hormones in general) as Julie Taguchi. Message me privately and I will send you the info to get in touch with her if you choose to do so. Sounds like some of the doctors you're working with don't really know much about what we do. IF you want, we can help them get to a WP seminar to get trained, if they're interested.

Best Regards,

Jake Raden
General Manager
Wiley Systems, Inc.

December 20, 2011 - 1:36pm

I always felt there were businesses out there who are attacking Wiley in order to promote their own processes. They say the same things and use the same phrases on different blogs. Thanks for helping me to understand a bit better.

Meanwhile, as a 67 year old woman who's been on Wiley for 2.5 years I feel amazingly well and my lab tests and blood pressure are also normal, apparently unusual for a person of my age. I was trending towards osteoporosis until I started Wiley. Now, much to my internist's surprise I am trending towards normal bone density. As well the osteoarthritis in my knees is much improved such that I can do the equivalent of deep knee bends with far far less discomfort. In March of 2011 I had a hysterectomy for endometrial cancer of type serous. The cancer was encapsulated and deemed to be stage IA, so I needed no further treatment. My oncologist is horrified that I use female hormones. (I refused to let them take my ovaries). She sees me every 3 months for the first two years and they check my blood for cancer indicators. I keep getting the feeling she is sure the indicators will show up. But I know with my whole being that this process is working for me and working well. So I am betting my very life on Wiley in a manner of speaking.

My internist has a patient who had uterine cancer and was treated. She asked him for help to get bioidentical hormones. He asked me where I get mine because he sees how well I am doing. I am not a health nut. I eat an average diet and don't get as much exercise as I should. I take great care to exactly follow the Wiley protocol.

I feel tremendous gratitude to Susie Wiley and her entire team for doing what is right for women in the face of tremendous opposition from the entrenched medical community. People like me who benefit so much from the protocol will be the examples encouraging others to demand to be treated, and this healing method will soon overcome the opposition. I predict a big surge within five years.

December 20, 2011 - 11:30am
EmpowHER Guest
Anonymous

Of course you can't see the records of adverse events, that's proprietary information. It's also held in confidence because of HIPAA. What you will see, when it's published it as an observational study, is why there are adverse events. Here are the main reasons:

- Compliance: People are too casual about following the protocol.
- Doctor "invention": Many doctords think they have a better idea but still call it Wiley
- Counterfeits: Pharmacies, like Don's in Port Townsend, WA (home of Deb vander Stadt, Wiley Watch and Rhythmic Living) who have been producing something they call the Wiley Protocol for 7 years, and we have no idea what he's doing. He refuses to follow the methods, materials, purity and testing that the certified Wiley Protocol pharmacies do?
- Supplements: Many supplements interfere with the protocol

This is why we investigate adverse events. Not to prove that the Wiley Protocol is perfect, but rather, to improve it and continue to educate the pharmacists, doctors and patients what can derail it.

I should point out that our detractors at Wiley Watch and Rhythmic Living have patently refused our offers to have these women "damaged" by Wiley seen by Dr Taguchi at our expense, or at least to have their doctors discuss their cases with her. 100% have refused.

Neil Raden
(husband of T.S. Wiley)

December 19, 2011 - 4:16pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Really? When I asked for help, you guys completely blew me off. It was like talking to a wall. I have never seen such a well-staged scam in my life.

May 6, 2012 - 12:56pm
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