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Estinyl withdrawal (OE and DE ment.)

July 16 2012 at 7:10 PM
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Jen  (no login)

 
Has anyone taken estinyl for a long time and stopped? I have been on it for over a year. I have not ovulated for over 8 months. I need to get off of it. I have often taken 2 pills a day. I think it is the cause of my hair loss. I think it raises my tsh and that may be the issue. The last time I stopped it I slammed into menopause. I stopped cold turkey and did not take provera. I think that was an issue. My fsh has been as high as 80. When I was off of it I had very bad hot flashes so I went back on. I saw Dr T and he wanted to just put me on HRT to straighten me out. I worry that may also make my hair fall out. I have also been constantly sick. I think all of these hormonal things are making me less able to fight infections. I finally feel I am harming myself trying with OE. Back to my original question....I would love to know if anyone else has transitioned off estinyl?

Thanks,

Jen

 
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alima
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Re: Estinyl withdrawal (OE and DE ment.)

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July 16 2012, 8:57 PM 

Hi Jen, I haven't used estinyl for that long. I usually use it for the first phase of the cycle and then when I ovulate, I stop it cold turkey. I do know that when I stop the estinyl, my FSH spikes. I am not sure why this happens because it doesn't happen when I take estrace. I am sorry about the hair loss. I hope Dr. T can help you through all this.

 
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Jen
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Thanks, Alima (DE ment.)

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July 16 2012, 9:22 PM 

I am still a patient of Check but will change to T soon. I even take estinyl while I am on Provera. When I was Ovulating I would go off and take estrace in 2ww. I had a scary hair loss in November and went off all meds but, couldn't take the hot flashes so went back on estynil. I was hoping I would ovulate but, it is not happening. I am not sure if it is just that I am suppressed or no eggs. I just can't continue with the hair loss. This journey has just about destroyed everything..ie job and mental status. I need to fix myself before moving on to DE because I need to be okay. I feel I have taken my body to far. I am getting worried I will not get better. I see the endocrinologist on Wednesday so hopefully that will shed some light on the situation. Thanks again, for responding.

 
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Antonialisa
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I'm also an estinyl junkie (DE mentioned)

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July 16 2012, 10:09 PM 

Jen,

It's great to hear from you. I'm glad to see you are getting ready for plan b. Me, too. I did Dr. Ch.eck protocol for well over 1 year, ovulated every time but No Good Eggs Left is my problem.

So, I have also been on estinyl for well over 1 year. I've actually mainly transitioned to estrace which I always take (2 per day as well!) in the luteal phase and until about day 1. I'm very scared of gettig off it and what may happen. Estrogen replacement has helped many of my menopause symptoms like old-looking skin, but not all (like thinning hair).

I'm not sure you need to get off estinyl before doing a DE cycle. YOu should speak to your DE doctor about it.

I'm preparing to do a DE cycle and mentioned the Ch.eck protocol to the DE physician who was very unconcerned. In my program you go on lupron on day 21 the cycle prior to transfer which essentially shuts down your normal system anyway.

Please keep us posted.

 
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Jen
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Thanks, Antonialisa (DE ment.)

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July 16 2012, 11:16 PM 

It is nice to hear from you. I am glad you have are doing well. Dr. T who I will be seeing next wants me to go off estinyl. He wants me to transition to something else with a lower dose of estrogen. I am concerned any estrogen replacement will make me lose hair. I am also afraid not taking any estrogen will make me lose hair. My tsh was elevated last time I checked when I was on estinyl. When I was off it went down. I get my recent results on Wednesday. I hope that is the real issue. I can't take the hair loss. I have really lost a lot. I also worry it is stress. I lost my job recently and my mother has been ill. I really don't feel that is the cause. TMI- I have lost most of my pubic hair. I just want to figure this out and be better.

 
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Jainee
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Re: Thanks, Antonialisa (DE ment.)

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July 17 2012, 1:40 AM 

Have you checked your thyroid levels. I have also been on estynil for a long time- but I find I can not take it any more- I am on a regular HRT which has stabablized my hormones- except I am dealing with hashi's which I think reeked more havoc on my system then anything else- cuz it still swings. As soon as my e2 goes up the tsh levels go up which then does not let the follie to grow- a vicious cycle.

also, when I went cold turkey off of estrogen I found that I weakened my sphincter ( sorry for the spelling) and got wicked heartburn..........and it took a long time to get back to normal

 
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Jen
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Thanks, Jainee

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July 17 2012, 3:58 PM 

Hi Jainee,
I had my b/w done last week and go to the endocrinologist tomorrow. I asked him to do thyroid and androgens. I know in the past my tsh was high when on estinyl but, it went down after I stopped. I think that has something to do with T4 jumping on estrogen hormone or something like that. The endocrinologist said anytime there is a disruption in metabolism one could get hair loss. The almost total loss of pubic hair also scares me. It has not grown back. So, if I went from a tsh of 1.75 to something higher that could have done it. On top of everything I have had the worst sinus infection ever. I really think all of this is linked.

Does your TSH go up when your own e2 rises or is it the HRT? I am sorry you are dealing with this.

Hopefully, Dr T or Check will be able to balance this out.

Thanks,

Jen


 
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Jainee
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Re: Thanks, Jainee

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July 17 2012, 5:20 PM 

Hi Jen
last month- my natural e2 started rising- and that is when I noticed the tsh also rising. But I think that when I took estinyl which is stronger then my reg estrogen the tsh also went up so I don't think it matters where the estrogen is coming from- ( I could also be wrong- not a doc) the tsh needs adjustments when your estrogen levels change........it is all connected

 
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Toni
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Grad Lurker (children ment. & m/c ment.)

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July 18 2012, 1:26 AM 

Hi
I had to chime in! I have Hashimotos and before I got diagnosed I had hair loss and frequent sinus infections which are both symptoms of Hashis!! I had go have surgery my sinus's were SO bad!! Since I went on meds and post surgery I feel so much better!! Also Hashish causes hot flashes and early menopause too. I struggled with high FSH and m/c but had 2 children before I got diagnosed with Hashis. Hope this helps!! FWIW I have no more periods and no more hot flashes since last year and I feel SO much better!! I am not on any hormones just Synthroid for my thyroid!!

 
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smrc
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i'm so sorry for what you're going through

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July 17 2012, 12:22 AM 

I was also a patient of Dr. C.heck's and had some not so great experiences on estinyl, although in retrospect I wish I had given it more time. A breaking point for me was a cycle where I stopped cold turkey after not having my estrogen rise and getting very bad headaches - that cycle my FSH spiked to 93! It was a scary day and Dr. C.heck put it down to an anovulatory cycle and left it at that. I never went back on it. My understanding is that your hair loss would either be from 1. big estrogen fluctuations or 2. low estrogen levels. Have you done any monitoring of your e2 levels at all? Have you had a callback with Dr. C.heck about this or, better yet, gone in for an office appt? What have they told you? One suggestion is that if you do plan to go off, that you consider taking it every other day for a while to see how your body reacts. Just a thought. Hope the issue is fixed soon. SMRC

 
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Jen
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Hi SMRC

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July 17 2012, 4:10 PM 

Was your fsh of 93 on cd2? I think being on estinyl non-stop would make my estrogen level high.My natural e2 never rises anymore. My cd e2 is usually 15 and never rises. I do have a call in with him for the 24th and I have an appt on the 30th. I have only taken it every other day for the past few days. I did b/w today so, I imagine they will tell me to start provera. I am on like cd 25. I am going to ask if I can stop the estinyl for the luteal phase. After doing a search on this board I have seen messages that say he will give patients bcp. I am not sure if he believes to much estinyl suppresses women. I will probably go with Dr T's recommendations. He suggested bcp's but, then changed to another hrt. I feel like I have screwed up my body so much. I am very sorry I did this to myself.

Thanks,

Jen

 
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Jen
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Now what to do

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July 17 2012, 4:27 PM 

I just got cooper b/w results. My e2 went up to 13. That believe it or not is up from last week. My fsh is 17. That is not to high for me. I also did not take estinyl for the past 2 days. They want me to take 2 estinyl a night. That was what they wanted me to be on the past few weeks as well. My fsh is lower than last week. My choice is take estinyl 2x or less for a week or start provera. I think I will go one more week. I am on some antibiotics that are really strong. I wonder if there is a connection there? I recently had a cat scan of my sinuses and they were so filled. The ent was like, you are sick. I have thoughts that maybe my pituitary was being affected since it is behind the sinuses.

 
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DeeinNYC
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Thinking of you

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July 17 2012, 5:30 PM 

Jen,

I have no experience with estinyl but wanted to say that I hope things get better for you soon. I can't believe that you are still struggling with the hair loss issue. I hope you find answers soon.

 
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Jen
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Thanks so much, Dee(DE ment.)

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July 17 2012, 5:50 PM 

I hope you are doing well. This journey has been so awful. I am going to email Dr. T tomorrow. He is going away for a month. I think I may wait a week to see if anything is happening and go on provera if I need to. I feel Dr. T is more involved and will make me feel safe. It is so confusing. If you want to get together please, feel free to email me.

 
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DeeinNYC
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Re: Thanks so much, Dee(DE ment.)

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July 17 2012, 10:41 PM 

Jen,

Some of us are thinking of getting together soon. I will KUP for sure.

 
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di_nyc
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Re: Thanks so much, Dee(DE ment.)

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July 18 2012, 3:12 PM 

Please keep me posted too, I would love to see you!

Jen, I hope you feel better soon, & thanks for the heads-up about Dr. T going on vacation.

 
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DeeinNYC
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Re: Thanks so much, Dee(DE ment.)

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July 18 2012, 5:31 PM 

Di- you were one of the people I was speaking of!! A little birdy told me that you might be interested. Will send out an email soon.

 
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Jen
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nyc get together

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July 19 2012, 2:16 AM 

I hope we can meet up soon. Thanks, for your kind words.

 
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BabyDance
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Me too Jen..

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July 17 2012, 8:44 PM 

I believe Dr. T really has your best interest and will guide you the right way, and I'm very tough on these doctors. Keep in contact with him, email if you need to, and try to listen to what he says. He's just the most honest out there. I'm so sorry you are going through this, and thinking of you. xo BD

 
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Jen
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That means alot BD

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July 17 2012, 10:04 PM 

I know you are right BD. I had hoped I could see him before his vacation but, emailing him is the best I can do right now. I am getting so scared at this point. I need a dr that is looking out for me and my health. I have just been so sick recently so, I am scared.

 
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