Hormone replacement reactions

Posted by kerstenk @kerstenk, May 28 6:29am

I am 41 years post total hysterectomy including ovaries and have tried 14 types of HRT all resulting in these terrible adrenaline surge type reactions that stop after i stop taking the medicine. Without HRT i feel awful. Any thoughts?

@kerstenk,- Good morning and welcome to Mayo Clinic Connect. Oh, I know just how you are feeling. When I finally stopped I felt awful too. I didn't feel womanly, my skin changed, everything changed it seemed. But after a while, maybe a year my "new self" felt pretty good. Since you are so sensitive to HRT medications my suggestion is to get off of them. Every time you go back on one and then off you are giving your brain and body confusing messages. Perhaps even a time-out would be good. What does your dr. say?

I think that your body is trying to tell you to leave it alone and let it settle down. What do you think?

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Hi merry, thank you for sharing and responding. Honestly, my pcp and obgyn are stumped. I feel lousy off of HRT, but agree that the going on and off is way worse. I am seeing a Mayo health professional soon, but this may be a real option. Thank you for sharing that it can feel ok in time to be off. For now, i am on a timeout. It sounds like you had sensitivity too? I am trying to figure out if that’s it or my docs think there is an endocrine process at play they can’t figure out.

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@kerstenk

Hi merry, thank you for sharing and responding. Honestly, my pcp and obgyn are stumped. I feel lousy off of HRT, but agree that the going on and off is way worse. I am seeing a Mayo health professional soon, but this may be a real option. Thank you for sharing that it can feel ok in time to be off. For now, i am on a timeout. It sounds like you had sensitivity too? I am trying to figure out if that’s it or my docs think there is an endocrine process at play they can’t figure out.

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@kerstenk– Good morning. No, I wasn't sensitive to HRT my doctors wanted me off of it. Also, I have lung cancer and my surgeon doesn't want me on any hormones.

I'm glad that you are on a time-out. Let me know, will you, how you make out with the Mayo Doctor?

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I was born with a certain medical condition, which causes my body to not produce any sex hormones. I am taking outside hormones for many years already (estrogen, progesterone and testosterone) , and I feel great as long as I take them. Because of a surgery, I recently had to reduce the amount of estrogen to less than a half of my normal level, and I felt pretty bad. To reduce the risk of any blood clotting and other negative side effects from estrogen, I inject it once a week. This was prescribed to me by the endocrinology department of the Mayo in Rochester. They do a quarterly test of my blood levels to make sure my hormones stay in a healthy range.
Many surgeons are very often not up on the latest knowledge concerning hormones.
I strongly recommend to work with the endocrinologists of the Mayo, because they are pretty much leading edge concerning hormones and their reaction with the body.

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@merpreb

@kerstenk– Good morning. No, I wasn't sensitive to HRT my doctors wanted me off of it. Also, I have lung cancer and my surgeon doesn't want me on any hormones.

I'm glad that you are on a time-out. Let me know, will you, how you make out with the Mayo Doctor?

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Thank you. Please take good care of yourself and sending you my thoughts.

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@lindes

I was born with a certain medical condition, which causes my body to not produce any sex hormones. I am taking outside hormones for many years already (estrogen, progesterone and testosterone) , and I feel great as long as I take them. Because of a surgery, I recently had to reduce the amount of estrogen to less than a half of my normal level, and I felt pretty bad. To reduce the risk of any blood clotting and other negative side effects from estrogen, I inject it once a week. This was prescribed to me by the endocrinology department of the Mayo in Rochester. They do a quarterly test of my blood levels to make sure my hormones stay in a healthy range.
Many surgeons are very often not up on the latest knowledge concerning hormones.
I strongly recommend to work with the endocrinologists of the Mayo, because they are pretty much leading edge concerning hormones and their reaction with the body.

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Thank you so much for sharing your story-this is so hopeful. I couldn’t get into endocrinology without an endrocrin diagnosis, but i will try again. I am so glad that you found something that worked for you and i hope i do, too! I started feeling like no one could help.

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I had a hysterectomy at 36 due to severe bleeding from fibroid tumors, but they didn't remove my ovaries. When I was 48 I began to experience vaginal dryness, and my gynecologist prescribed HRT. The results were immediate and I felt great. I continued over the years and kept up with the data and there are no indications of any problems. I fired two gynecologists who insisted I stop taking them. I now have one who gives me the facts but allows me to make my own decisions. Yes, there is a chance of blood clots, but I'm willing to take that chance to live a full live. No one lives forever. I'm now on 0.45 mg of Premarin and continue to feel wonderful. I still work full time, have an active sex live, and I'm now 81. Why are women not demanding a substitute for estrogen or for something that PREVENTS menopause? Thank goodness for the Mayo Clinic website – my insurance is now refusing to cover Premarin and the Mayo Clinic recommended a online pharmacy in Canada where the price is half what it was even with my insurance. I do realize that there are indications that HRT is not for every woman due to underlying health conditions, but surely we can demand that scientists pay more attention to women's health throughout their lives, not just during the child bearing years.

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@jumbley39

I had a hysterectomy at 36 due to severe bleeding from fibroid tumors, but they didn't remove my ovaries. When I was 48 I began to experience vaginal dryness, and my gynecologist prescribed HRT. The results were immediate and I felt great. I continued over the years and kept up with the data and there are no indications of any problems. I fired two gynecologists who insisted I stop taking them. I now have one who gives me the facts but allows me to make my own decisions. Yes, there is a chance of blood clots, but I'm willing to take that chance to live a full live. No one lives forever. I'm now on 0.45 mg of Premarin and continue to feel wonderful. I still work full time, have an active sex live, and I'm now 81. Why are women not demanding a substitute for estrogen or for something that PREVENTS menopause? Thank goodness for the Mayo Clinic website – my insurance is now refusing to cover Premarin and the Mayo Clinic recommended a online pharmacy in Canada where the price is half what it was even with my insurance. I do realize that there are indications that HRT is not for every woman due to underlying health conditions, but surely we can demand that scientists pay more attention to women's health throughout their lives, not just during the child bearing years.

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Because of my condition, I have no menopause, and my uterus could not develop. But otherwise, I have to deal with almost any of the conditions any older woman has to deal with. Outside of the docs at the Mayo, I work with a local ob/gyn, and he is also very progressive. In addition to my estrogen I inject, he prescribed estrogen cream that I introduce into my vagina.
I discussed my situation with him, and I rather have a 0.1% risk increase for DVT, but live a normal and active life otherwise; or have a dried out vaginal mucous membrane with fissures all over it, and lots of pain and discomfort, but a tiny better chance not to get DVT.
I am amazed how little many gynecologists know about hormones and their interaction with our bodies, and how little they stayed informed about new medical knowledge.

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@jumbley39

I had a hysterectomy at 36 due to severe bleeding from fibroid tumors, but they didn't remove my ovaries. When I was 48 I began to experience vaginal dryness, and my gynecologist prescribed HRT. The results were immediate and I felt great. I continued over the years and kept up with the data and there are no indications of any problems. I fired two gynecologists who insisted I stop taking them. I now have one who gives me the facts but allows me to make my own decisions. Yes, there is a chance of blood clots, but I'm willing to take that chance to live a full live. No one lives forever. I'm now on 0.45 mg of Premarin and continue to feel wonderful. I still work full time, have an active sex live, and I'm now 81. Why are women not demanding a substitute for estrogen or for something that PREVENTS menopause? Thank goodness for the Mayo Clinic website – my insurance is now refusing to cover Premarin and the Mayo Clinic recommended a online pharmacy in Canada where the price is half what it was even with my insurance. I do realize that there are indications that HRT is not for every woman due to underlying health conditions, but surely we can demand that scientists pay more attention to women's health throughout their lives, not just during the child bearing years.

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I could not agree with you more! We have to continue to advocate for ourselves for better and cheaper options!

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@lindes

Because of my condition, I have no menopause, and my uterus could not develop. But otherwise, I have to deal with almost any of the conditions any older woman has to deal with. Outside of the docs at the Mayo, I work with a local ob/gyn, and he is also very progressive. In addition to my estrogen I inject, he prescribed estrogen cream that I introduce into my vagina.
I discussed my situation with him, and I rather have a 0.1% risk increase for DVT, but live a normal and active life otherwise; or have a dried out vaginal mucous membrane with fissures all over it, and lots of pain and discomfort, but a tiny better chance not to get DVT.
I am amazed how little many gynecologists know about hormones and their interaction with our bodies, and how little they stayed informed about new medical knowledge.

Jump to this post

Agreed, i work with a progressive doc that is all about quality of life and my choice. If only i could tolerate it. I feel great for a few days and then the reactions start. Hoping Mayo can help!

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Total hysterectomy at age 34. Was on Premarin for years. I stopped all hormones in 2000. I developed a lot of health issues when I stopped. 20 years later, at the age of 75, my doctor started me on bio identical bi-est and testosterone topical cream. I have it compounded with no added ingredients or chemicals. This is only way I can tolerate hormones

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I had a double mastectomy 1 yr ago. One tumor estrogen fed. My gynecologist has me on bio identical hormones that are plant derived. I have the pellets injected every 4 months. The testerone helps with the side effects tremendously & helps me feel so much better as a woman. My oncologist is on board as well. If we stop all hormones our bodies get old quickly …what kind of life is that. Check into the bio-identicals.

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