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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

Caren reports adverse symptoms to Dr.'s for advice to patients and their doctors. She does not dispense her own personal medical advice.

I'm you're having trouble with the Wiley Protocol. If you choose to stop taking it, I hope you find something that works better for you.

And the comment that our doctors are inexperienced and trying to use Suzanne Sommers name above is nonsense. You're calling the hundreds of doctors who have come to us inexperienced inexperienced I'm sure you know all of them personally. And I'm happy to see questions and criticisms of our work, but flat out, disingenuous lying and name calling about the doctors we work with in frankly unacceptable. Pushing misinformation to forward your agenda is totally out of line. You should be ashamed of yourself.

We are enrolling doctors and patients for a study of the University of Texas on the safety and efficacy of BHRT. Does anyone else doing BHRT that you know of do that? They don't. If you or doctor are interested in being part of that, please contact us at the Wiley Protocol so we can forward it to the appropriate people running the study.

Jake Raden
General Manager, Wiley Systems

April 24, 2011 - 10:27pm
EmpowHER Guest
Anonymous (reply to Anonymous)

Dear Jake, son of TS Wiley,
I have talked to the real estate agent, Caren, personally on the phone and she freely gave me medical advice without consulting any medical professional. Should I be ashamed of myself for telling the truth?
Most of the doctors or practitioners your uncredentialed mother "trains" have stopped using the Wiley Protocol because of patient complaints, yet their names remain on your website as false advertising. Should I be ashamed for revealing that? Do you want me to phone these doctors, one by one and have a documented expose?
The University of Texas study has been "in the works" for so many years we have lost track.
Does it occur to you that ethically you should have done a study BEFORE thousands of women started taking the massive hormone protocol? That would be the ethical thing to do. Should I be ashamed of pointing out you conduct a study before prescribing?

TS Wiley has been the subject of so many exposes, so many patient complaints, so many lawsuits, so many media discreditings, so many fallings out with pharmacists, that you must have your hands full trying to address the deluge. This is all documented public information so don't try to "shame" me for citing the public record.

YOU should be ashamed of conducting a massive cover-up of a dangereous medical protocol.

April 25, 2011 - 5:33am
(reply to Anonymous)

I don't know why this blog is attracting such virulent comments from people. It really makes me wonder who is funding these "anonymous" comments.

I've been on Wiley for two years. My osteopenia is no longer progressing towards osteoporosis and is even reversing. I have lab reports to prove it. As well, my knees which hurt all the time with osteoarthritis hardly hurt at all now. I can even run! My experience with Wiley is all positive. But I was a healthy post-menopausal woman apart from what I already mentioned. I think some of the writers have mental problems and/or other physical problems and are blaming everything on Wiley. I believe this is the absolute best BHRT protocol out there, and they continually try to improve, as far as I can tell. Ladies, don't let fear deprive you of the many benefits of this method of healing. Try it with an open mind. If it doesn't work for you, maybe you need another form of healing. But don't assume it's bad for everybody if it is not right for you.

April 25, 2011 - 8:40am
EmpowHER Guest
Anonymous

Caren is a California real estate agent with no medical training. Did she mention how many people just like you have called her, anxious, at the end of their ropes?
If you stop estrogen suddenly, you'll get a really bad estrogen withdrawal headache. That's the reason to wean estrogen.
Progesterone overdose is real the culprit here. Just stopping progesterone might make you feel 50% better in 48 hours.
Did you find the online group of Wiley victims?
http://health.groups.yahoo.com/group/rhythmicliving/
They might have additional suggestions. Just hold on til you get the progesterone out of your body.

April 24, 2011 - 9:39pm

Hi,

I took my last dose today....I will not rub in these creams anymore. I was not on it that long, less than 2 months, started on 3/11/11. one doctor told me estrogen needs to be weaned off, but Caren told me to stop as I have not been on it long. she told me to wean off would bring me back to peri-menopause and they don't believe in weaning off. I don't know who to believe or listen to, adding to my anxiety of this whole nightmare.
I had my gallbladder out years ago, what I am worried about is the bp and pounding skipping heart. my medication always kept my b/p in check but now readings all day threw the roof and I am scared. add in tension headaches from all the stress this is causing me, and my head feels like its going to explode.
my husband told me to just stop. I would stop cold turkey but don't want to suffer anymore bad side effects. I have no idea what would happen if I just stop. today I rubbed in 10 lines of progesterone and 4 lines of estrogen or was it 3. I don't remember. I wish someone would tell me what I should do who really knows. I don't have any support here at home and if I needed to go to the ER, nobody would take me as I don't drive. I know if I go to the ER, as a woman, they would tell me its all in my head or an anxiety attack. I hate that.
if there is anyone here who can tell me what I should definitvely do, I would do it. right now, I am done with this madness. I had such high hopes when the WP people told me this would help me feel better, little did I know it would make me so sick. of course they are blaming me and my body on how I feel, not the creams of course.

Thanks and take care.....

April 24, 2011 - 8:50pm
EmpowHER Guest
Anonymous

I was on it a few months. It was awful. The Wiley people kept saying keep on it. Meanwhile, hair fell out, weight gain, stomach bulged. Whiskers sprung during the progesterone phase.
Everybody I know could just stop the progesterone cold.

But the estrogen needed to be weaned... cut in half and then less and less over a few months until you're taking what the average BHRT taker takes. Then when you feel better maybe your doctor will start you back on a small amount of progesterone.

But if your feeling awful you should go to the emergency room. You can also report the adverse event online to the FDA:
http://www.fda.gov/Safety/MedWatch/HowToReport/default.htm

Good luck and please let us know how you did. A lot of women have ended up in the emergency room, some wound up getting hysterectomies or having their gall bladders out. Cut your losses. Quit before you get worse.

April 24, 2011 - 8:23pm

I have been using the WP for about 7 weeks and I have had nothing but problems. My b/p has soared and had to increase my medication. heart palpitations, anxiety, depression, tension headaches, an enormous amount of weight loss, hair loss with flaking scalp and brittleness, extreme crashing fatigue, leg pains, cold flashes, always feeling cold, no appetitie, nausea, vomiting, stomach pains and with constant gnawing and a whole host of other side effects. I was told to increase the estrogen which I did and it just made matters worse. I was told to take it 4 times a day instead of 2 dividing my doses in quarters, did that, that didn't help matters. have talked to the WP people on numerous occasions and they told me to see Dr. Ridley in Texas which is not financially feasible. I have seen 2 WP doctors who are not that learned with the protocol as they are still learning, and both batches of my creams (the progesterone) were like glue, and I could hardly rub it in without it flaking off. I complained to the pharmacist and he told me that I was the only one complaining about this problem. hey, I know what elmer's glue is like and the progesterone's consistency is just that. I thought this was the answer for me, as I am 55 and in post menopause with lots of anxiety but in the 7+ weeks I have been on this protocol, I think it has just made matters worse. I feel terrible. I have seen an endo which she told me that my testosterone was high and DHEAS too and was consistent with PCOS but how can a menopausal woman with no history of menstrual problems and 3 full term pregnancies have or develop PCOS now?
My thyroid tests always come back normal but I never trust those tests, most people's do come back "normal" I was told to have a full panel thyroid test with reverse included. I know my cortiosl levels are through the roof as my heart is always pounding fast with palpitations and a b/p that has hit well over 170/107 this whole week. I had to resort to taking Prevacid now for my terrible stomach troubles. I was going to stop but too scared to just do it cold turkey, or can you? I have never bled, never had a scant of blood yet. my breasts are NOT sore and just have a bit of cramping. I want to stop this madness...how do I? can I? will I suffer any repercussions at this point? even to have saliva tests, you can't be on hormones to get true readings, but was told I just can't stop for a day or 2 to spit. I have had Non Hodgkins's Lymphoma 2 yrs ago and was concerned about the possibility of blood clots but was cleared by my oncologist as he said the risk was minimal of recurrence as I did have a clot when I developed a tumor in my groin from the cancer. I had to resort to taking valium just to calm my nerves but don't want to get addicted to them. anti depressants do not agree with me and every one of them I have tried have given me terrible side effects. What is going on with me? no one has the answers for me and I feel so lost. I have been told to stop, not to stop, we don't know what is going on with you, you are a complicated case...we can't help you. do this or that, but no definitive answers or help. mostly I am scared....I thought the WP was the answer but it turned out to be a nightmare for me and didn't help at all. now i want to stop and see another gyno who doesn't prescribe the WP but might know what can help me as he has helped my friend and she feels great after only 3 days on whatever hormones he gave her. Can I just stop this protocol without any repercussions? I wasn't going to take any today, but at 3 pm this afternoon I gave in and rubbed them into my legs. Can any help me or advise me? I don't think the WP is for me and I don't think I trust this whole messy and controversial program. I am hearing lots of horror stories. Please advise before I go off my mind totally. Thanks so much.....

April 24, 2011 - 12:37pm
EmpowHER Guest
Anonymous (reply to wicked17)

We've heard these stories before. The pharmacist told me I was the only one to complain and then I found that others had also complained.
It sounds like the high blood pressure complication from the Wiley Protocol would make your doctor take you off the creams immediately. Most of the doctors the Wileys recruit are inexperienced and are experimenting on you by using Suzanne Somers' name.
Can you just wean yourself off it? That's what those of us did who were damaged several years ago by the protocol. The longer you stay on it, the harder it is on your organs.
The compound pharmacy in St. Louis that carries Wiley hormones is being boycotted by a large group of women's health activists.
I'm sorry you have to suffer like this.
If I knew it wasn't tested, I never would have gone on it either.

April 24, 2011 - 3:10pm
(reply to Anonymous)

Hi anonymous

can you just stop? being I have only been on it since March 11th. I was told weaning would be worse than stopping, coming from someone at Wiley. did you wean or just stop? what are the repercussions if you just stop? I am so sick and think I should go to the ER as my blood pressure is so high, my head is exploding and my heart beat is skipping terribly. my head is pounding with every beat of my heart. this is scary and I am afraid.
what should I do? how long were you on it before you stopped. can I ask what your symptoms and side effects were? Thanks so much

April 24, 2011 - 5:55pm

Well, I know ONE thing, I've tested it on ME, and it worked and is working. That's good enough for me.

February 16, 2011 - 9:59pm
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