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A question which is regularly put to asm is "I want to go off HRT. How should I do it, and what should I expect?" Below are some of the answers which have been given. They illustrate well that where hormones are involved, whether endogenous (your own) or exogenous (added), YMMV (Your mileage may vary) Anecdote A more theoretical discussion "How to" according to Susan Love MD asm posts after WHI study results I felt pretty good on the HRT, but not entirely 'myself', and I had a monthly group of 'low' days at the end of each progesterone 2 weeks, in other words in the first four or 5 days of oestrogen. I told the doctor I wanted to taper, and she said 'You don't need to, just stop if you want to. But why do you want to? I have women staying on HRT for 15 years.' Um, yes, quite. I said it seemed wiser to taper a major drug and try and simulate the gradualness of a natural menopause. So what I've done is cut it in half, moving on to the 1:10 formulation of Femoston, which cut my oestrogen in two automatically, staying on that for three months. The main symptom was a crashing headache for the first three days and slight sense of dizziness; it didn't last. I felt much better on this half dose, but I thought I would go ahead. So I started cutting the pills in two physically with a knife, and stayed on that dose for three months. Lastly, for two months I cut the pills in 4, but that is physically extremely hard to do accurately, so I ended up more or less just taking a few crumbs of each pill for the last 4 weeks. My only symptoms through this last bit of the process was a little lower back pain when running ( which I do.) I do not know if this is related to osteoporosis. I have now taken nothing
for two and a half weeks. There seem to be no symptoms at all, though
I felt a bit anxious about finally having nothing to take at night ( that's
when I took the pills.) I am making an effort to eat well, and taking
Osteocare calcium/magnesium tablets. I should also say that while
giving up I have taken to, and love, a weekly Pilates/yoga-inspired class.
Perhaps symptoms will still hit me, but I suspect with such a gentle regime
of giving up they won't. I hope this is helpful. I'll post
again if symptoms suddenly return.
Patti's experience (Sept 2001) I stopped completely last Tuesday, and a few hot flushes later, which I've been having on the HRT anyway, I was fine until Friday. Then I started a very light bleed which is stopping and starting. It's annoying more than anything. In myself I *feel* a lot better. As if I've emerged from cotton wool after a long time.Coffee is setting off the hot flushes, mostly. I seem to have more energy. I have not gone mad, which was one of my fears. Interestingly some of the aches and pains I was experiencing seem to have receded but I'll hold back on saying that is true for a while longer. After all this is only a week.Any way so far so good. Oct 16: Having now been off HRT for 6 weeks, I can't believe it's that long, reading R's post reminded me of all of that bloating. I had sore breasts every two weeks for five years and when I first started taking it they were sore all the time. My stomach is not bloated any more either. The other side effect for me were/was (not sure gramatically) the massive mood swings. Up high on the unopposed estrogen and then down to the depths and descending all the time I was taking the progestin. I am now experiencing lots of hot flushes too and like you the disturbed sleep pattern is bothering me. My partner is only too aware of the change because I have gone from being a very cold person to a very hot person. The word clammy is now banned. He said it twice and I was really offended. I'm definitely buying a fan. I have not had a period since the spotting ended. I've been wary of posting this in case merely saying it out loud brought on a new flood. The majority of flushes come when I drink hot tea or coffee, so I'm substituting cold milk some of the time but the coffee...well I have to drink it. Soy has come and gone, it seemed to make the flushes worse. I agree, I would not like to go back on the HRT. My problem was I had been on it so long that I was scared to come off it. All that PR had got to me and in my subconcious I believed that I would wrinkle up and my spine would immediately crumble. This has not happened. One other thing and I am
still not 100% about this but I was getting regular urinary infections
and now I am not, coincidentally with the cessation of HRT. Hang
on in there, everyone seems to think the flushes go away after a while.
Meanwhile my mate is quite taken with the idea of rigging me up a remote
controlled fan system for the nights. Hmmm, we'll see.
I have been miserable taking Premarin 1.25. I felt bloated, tired, "not all there", and depressed. So I decided to quit taking it. Now I am having headaches, nervousness, and night sweats. Has anyone gone off HRT succesfully out there? I'm scared and don't know what to do. Any tips on how to feel better?I am in a situation very similar to yours, but I think I have made the transition successfully. Here's my story: For the last two years I had been taking estrogen (1.25 mg) and of progestin (2.5 mg.) but having horrible side effects -- mainly depression, acne, weight gain and bloating. By last September I looked and felt so rotten, I went to my doctor in desperation and said, "I can't take this any more!" He suggested that the side effects were probably from the progestin. He said some people are just very sensitive to it and can't take it. He told me that I should continue the estrogen but go off progestin for a 3-month trial period and see how I felt. Well, after stopping the progestin, I felt better right away. So much better, I thought, "Why not chuck the whole thing and go hormone free?" So I did - thus avoiding the double dose of progestin which would have been necessary after the 3 months.. I don't know why you started taking HRT, but I assume you might have started taking it for the same reasons I did, for relief of menopausal symptoms plus prevention of heart disease and osteoporosis. Perhaps you decided to stop for the same reasons I did: I was fed up with HRT's side effects and willing to put up with some temporary discomfort to get off it. I would rather prevent heart disease and osteoporosis naturally, through diet and lifestyle, and thanks to this NG, I believe it's possible and I have finally gotten the courage to try. But back to the topic. I did not go "cold turkey" as you did, but instead withdrew from estrogen gradually. I would take it every other day for the first week, then every third day the following week, then every fourth day, and so on. It took nearly three months to withdraw completely. There were some withdrawal symptoms during that time (mostly insomnia and mild hot flashes) but after four months, these symptoms are now almost completely gone. What I did was take a nutrition and lifestyle approach. First I added soy products to my diet. Soy contains phytoestrogens (plant estrogens), which have been getting some good press lately. They are supposed to have the same health benefits as exogenous estrogen without the cancer risk. Some women on this NG have experienced hot flashes after using soy products, but I have not had that experience. I use soy milk and eat tofu regularly. The other thing I do is to take a vitamin I found at the health food store. It is formulated for women in menopause. There are lots of menopause vitamins on the market, but I picked this particular one (Rainbow Light Complete Menopause System) because along with the vitamins it contains vitex, dong quai, black cohosh, ginger, ginseng, valerian and some others I'm not familiar with. From reading this NG, I had learned the herbs I mentioned are supposed to be especially helpful in relieving menopausal symptoms like the ones you've been having. (This is not a commercial for that brand, by the way. I know there are a lot of other good products out there.) One product I tried and then had to STOP taking was Siberian ginseng. I was going through some awful spells of insomnia. I'd be tossing and turning and I could feel my heart pounding in my chest. I thought I was just stressed out. But then I read somewhere that ginseng can cause nervousness. (I'd been taking the ginseng at bedtime!) So I stopped taking it altogether, and the heart-pounding insomnia went away. The vitamin I mentioned above has "red ginseng" as one of its ingredients, so I make sure not to take it at night. By the way, since you mentioned that you are experiencing nervousness, you might want to take a look at your caffeine consumption. Everyone knows that coffee and tea contain caffeine, but so do things like chocolate, Anacin, Mountain Dew, Coke and Pepsi. I have been really sensitive to caffeine since I've been in menopause. Two or three cups of coffee, and I am climbing the walls! The most important thing I do to feel better is get some exercise several times a week. It's hard, because I am not athletic at all and never have been. I'd much rather read a book or watch TV. But I have found that with 30 minutes of brisk walking three or four times a week, and some light arm weights, my energy level is better, I feel less depressed and I am helping to prevent heart disease and osteoporosis at the same time. Maybe some of these suggestions will be helpful to you. I hope so. Whatever you do, don't be afraid. I did it, and you can, too! Just hang in there and be good to yourself, and I'm sure you'll be fine. Good luck! 49 year old woman in San
Francisco
The symptoms you are experiencing are common for estrogen withdrawal. They are the same as those experienced by many perimenopausal women only will be exaggerated by the fact that you were taking artificial estrogen and then stopped it. The symptoms will continue until your body stabilizes its natural hormones again, which could take a long time or a short time depending on your age and how much hormone your ovaries might still have been producing before the HRT. You don't need to be scared coming off the pills. These are expected symptoms and being scared can make these symptoms even harder on you. You might want to get a good basic book on menopause symptoms like Dr. Love's Hormone Book to help you understand what is happening. She lists and explains lots of alternatives to hormone therapy in her book. Fiona Why is that when contemplating stopping HRT, one needs to consider tapering off?Partly it is the difference between women who have had a hysterectomy and therefore aren't making their own estrogen. They definitely need to taper off so as not to abruptly jolt their bodies. I haven't had a hysterectomy. I've taken HRT three times. The first two times (and probably spurts during those two times) I just stopped when I felt like it, too. Sometimes I didn't have the money to get a new presciption. Sometimes I was forgetting to take them so often that I just didn't feel it was worth it. No side effects. No problems. The last time I took HRT I stopped abruptly as usual. The difference, I believe was that I had also been taking a low grade antibiotic for three months for a phantom urinary tract infection. I got a horrible rash from candida albicans. I later read that abruptly stopping this particular combination of medications can cause this. Another factor that I wonder about, in hindsight (old 20/20 :-) is that my third grade son was in France with his class and I had gotten notice from his teacher that he was the only child who hadn't any letters. I felt calm about him being there, and I was sending him a fax every week on a pre-arranged day, but I just wonder if that news didn't also have some effect on my system getting so out of whack. So, it's just my opinion,
but I think there's too much drama surrounding going off HRT when you're
having a natural menopause. I say, just quit. If you get some
side effects, go back to a lower dose and taper off.
Some women have been able to stop cold turkey with no noticeable problems. Others have had a real problem with the hot flashes, etc coming back with the lowered estrogen levels as they reduced the dose. I hope that you are lucky and can glide through it. Fiona One major reason I began HRT was that there is heart disease and osteoarthritis in my family; but I have gained 40 pounds, and I feel that any possible benefit from HRT is surely negated by what is a major gain and stress on my 5'3" lightish frame. When I first got my provera prescription I was shocked to learn from the data sheet that provera is given to AIDS patients to help them gain weight, and here I was, with a quite healthy appetite. I can't blame it all on provera, but. 1. How does one best quit--all
at once, or by cutting back a little at a time?
Well, that is a good start for my questions. Of course, this group has given me much help in learning about pros and cons, and natural help, but I tend to be rather tentative about hormonal changes... Thanks. Jackie
Hi. I have been posting about my "cold turkey approach" until everyone is maybe tired of it, but here goes again: I was on HRT (1 mg estrace and 2.5 mg provera continuously) for 1 1/2 years, and I gained about 40 pounds and got just miserable and depressed (no doubt in part because I gained weight). I woke up one night and thought, "This isn't living! This isn't helping anything!" I'd been tentative about just stopping HRT--and one poster did say (after I'd stopped already) that it can be risky (particularly on thyroids, I think she said), but I had just thrown away both sets of pills at once, and that was that. For the first month (that's all I have been off) I have had no hot flashes until this week, and they are definitely hot flashes, but definitely (so far) quite mild and bearable (compared to the ones I had 2 years ago before HRT). And they are less frequent, too. I have had no other ill effects (maybe a fleeting headache off and on, easily fixed with aspirin--and maybe that's not a side effect) and I do feel much more like myself again. But that is just my experience, based on only one month. There are others posting here who are also both stopping and tapering off, so you might check the archives.. Good luck, whatever you decide
to do! JackieJ
After about a month now, I have to be honest, that it is not a bed of roses, @>--'-- going off HRT. Right now, I feel so sad and listless; it feels like post-partum depression (no surprise--same cause, I guess:a drop in estrogen, right?) Anyway, my hot flashes are still mild and not too often. And I still am hoping that once I get all this provera out of my system I will begin to feel better...I still am not looking back, but oh how I wish I didn't just want to go to bed and weep...JackieJ :( P.S. My provera-induced water retention is going away!
Day 20 So far, so good. Have had some warm flashes, but can't say they bother me. Feel fine. Day 29 and I HATE MY LIFE!! Assholes next door are making their noise again (and forcing me to deal with it again), but the rest of my life is going pretty well. My son is doing much better in school (a Class A worry). so why do I feel so hopeless?? I'm considering going back on HRT if this *mentalpause* doesn't go away. One month off HRT is not long enough to have it all out of your system. (No matter what your measured levels are--IMO.) It took maybe 3 months for me to even out after I stopped.
Day 30 Feel MUCH better than I did a couple of days ago. Boy, was I DOWN. Decided to go back on HRT (I never had this depression on HRT) if my mood didn't inprove in a couple of days. But now I feel my old self again and will stay off for another month to see how it goes.:-) Day 32 Decided to go back on 1/2 dose of HRT for a month or two to see if the problems (depression, confusion, trouble sleeping, etc.) might go away. I'm sure the *purists* on this ng will see this as a failure - but I have a very demanding month ahead and can't deal with the sleep disturbances, feeling confused and down right now. I'll go off again later (or maybe I'll just stay on it) when I feel the time is right FOR ME. Was off for 32 days. I doubt that I'm a purist. I'd intended my first month off to be a vacation from HRT, but after the first month off, I felt that I wanted to see what it was like all the way off. I felt that I could tell that there were still exogenous hormones in my system. After 3 months off, I felt good enough that I've yet to decide to go back on.I'll go off again later (or maybe I'll just stay on it) when I feel the time is right FOR ME. Was off for 32 days.Everyone's body is different; you know yours best. I will try and keep a log for you as to what is happening. I realize that it will probably take time to get all the drugs out of my system and that everyone is affected differently. I did not take my progestin on day 1 of this month and for the last week I took my estrogen every other day. I have now stopped taking them as well. It is day 3 and I am starting my period. It will be interesting to see what it will be like this month as it was not started by the progestin. I am also curious if my periods will stop and I will become menopausal (I know it takes a year) of if my natural state is still perimenopausal. 05 Jun I can not call this a period so far - just an aggravation. Hardly tell there is anything. (fingers crossed) maybe this will be it. 19 Jun Things are going along quite well. It is now day 18 of quitting my HRT. I was taking Provera days 1 thru 12 and Estrace every day. I had been on HRT for over 4 years. So far no dramatic symptoms. Any symptoms I was having on HRT anyway so nothing has really changed. I was and am still having some night sweats and insomnia. Not sure about the insomnia. I have been out of work since March and part of it could be that I am just not tired enough. Still no period this month. It should have happened 4-5 days ago according to prior months. Just had a very very light pinkish discharge for a few days after quitting. Waiting for the shoe to hit the floor as they say. I am sure that all the drugs are not out of my system yet so things may change. I hope things continue on real well. 27 Jun Day 27 Things are still going along great since I quit. Yesterday I was turned down for a job I really wanted and I didn't break out into tears. I found that amazing. Still no periods (fingers still crossed. Maybe that's why I didn't get the job. Thought I was weird sitting there in the interview with my fingers crossed! LOL) One thing I have really noticed is that my breasts are not sore. Yahoo! And when you wear a bra with a D cup that can be a lot of sore. Don't know the last time I went so long without soreness. Having some hot flashes but they are so small in comparison to what I was suffering pre HRT. It is also very warm here in the summer so it may get worse. Even though I live in the Sierras of California near Yosemite National Park, it often times gets into 100 degree +. It is not humid like other parts of the country though. Still having some insomnia but otherwise I feel much better. July 15
But Still not sorry I quit even with severe hot flashes. Only confirms that symptoms just hide out while on HRT and come back when you quit. I guess that to avoid the symptoms, I would have to stay on the medication for the rest of my life and to me that wasn't the way to live. Thanks for all your support. Nov 29
Since quitting, I have not had a period and my last one was in May, I don't cry at the drop of a hat. I did go through a rough time with hot flashes returning with a vengence but found if I sprayed my face with cold water it really helped. They have finally eased way off and I only have a few a day and most of them are triggered. Still have some insomnia problems but they are better too. Over all my life is much
better. I am not sorry that I started the HRT and would recommend
it to any one who has the severe symptoms I had, but I also recognized
the time when I needed to end it.
Many women have a resumption of menopausal signs when they stop hormones which suggests that hormones may impede the body's transition to the fully menopausal state. The longterm implications of this state of " biochemical limbo" (TM) are also not known. Terri
B, no one knows because the use of hormone drugs has been so badly studied, that no one has ever cared what happened to women when they went off of them. "We" are of interest to the medical industry when we are consumers, but when we are not, there is little concern for both drug with-drawal, and non-drug mediated states of wellness and "normalcy." The story of "menopause" for the past several decades has only been the story of drugs and surgery ....both highly profitable sectors of the health care industry. Premarin, the leading selling drug, has had an 80% profit margin for decades. Yet US taxpayers right now are funding the very first independent study as to its efficacy. Are you getting the picture why there is no little knowledge of drug physioloogy and its impact on women. Even the "authorized" uses on the FDA label have no science behind them. The first ones for menopause 'symptoms" got grandfathered in from claims made by the drug companies themselves, that even today they can not provide any adequate research for (see current Prempro ad). The recent "osteporosis" claim for HRT was not founded it fact, only in an appeal panel "consensus" statement after all seven of the Premarin studis for "osteoporosis" got rejected for completely lacking any proof of benefit. Reading the history of the
marketing of these drugs and the "menopause as disease" sales model for
these drugs is all set out in "The Menopause Industry" by Sandra Coney
.This book takes all of the mystery away about why we are in this present
highly controversial place about all of this. It is an excellent book,
and well-cited to legitimate scientific literature. Not a perfect book,
but an excellent one for background and common sense information about
our bodies, our health and the lack of science about hormone drugs.
This is basic endocrinology. When hormones are added from outside they will have effects in the organs which produce those hormones endogenously. For example, if someone who is euthyroid [has normal thyroid levels] takes thyroid hormone, they will soon *need* the thyroid hormone because the pituitary will send signals to the the thyroid to slow its own production to prevent hyperthyroidism. That much has been researched as has the adrenal/cortisone connection. But no one really *KNOWS* what happens to the peri/post menopausal ovary when exogenous hormones are added. They may be permanently impaired, as can happen with both the thyroid and the adrenals. The impairment may be temporary, or there may be none at all. One may be the case with perimenopause and another with post menopause. All of these are possible and there is no reason to choose one over the other without basic research to find out what is happening at the endocrine level when women are given exogenous hormones. That research has not been done. It is desperately needed. We know for example that women who take hormones in the immediate post menopausal period and then stop, have the same bone density as women who have never taken hormones within two years of stopping the drugs no matter how long they have taken the drugs. Whether their bone density actually continues to decline faster than women who have never taken hormones has never been investigated. Terri Terri said no one knows. Does anybody have another opinion? I can't find anything on PubMed.The purpose of HRT is to remove the unpleasant symptoms of the change in hormone levels by replacing the missing hormones artificially. There are two important factors here. 1. The symptoms due to the *change* of state from pre-to post-menopause, and which will later disappear. 2. The symptoms due to the new *state* of being post-menopausal. These won't disappear. If you can sucessfully replace some of the reduced hormones artificially, then you should be able to postpone some of each set of symptoms. By careful choice of which you replace, and perhaps by careful tapering regimes, you may be able to spread the period of change in such a way that the body can adapt more easily to the change. If so, you will be able to avoid some of the unpleasant symptoms of the change. However, you run the risk that any external replacement regime of hormones generated in complex cycles controlled by feedback loops in the body is too crude to do the job perfectly, and the imperfections in timing, dose, route of administration, and nature of the subsitute, may be damaging. Secondly, you are postponing a difficult adjustment of the body's hormone and metabolic control systems to a later age, when the older body may be less well equipped to handle the change. In other words, it may be like postponing your pregnancy --the more years you wait, the more likely it is to go wrong. In summary, if HRT is all that it is supposed to be, and your body is ageless, then coming off HRT will simply be like crossing the menopause bridge as usual, but being able to control the speed so it's less bumpy. However, since HRT is an imperfect tool doing a poorly understood job in an aging body, as with many drugs, you simply have to collect the best expert opinion you can, and make a bet based on your estimate of the probabilities and risks. What about staying on HRT forever? Well, it isn't forever, you're getting older, and you're going to take it until you die. The interesting question is whether HRT "forever" is like putting an expensive synthetic oil into a clapped out old motorcar, i.e., it will make it run better and last longer, or whether it is like putting a supercharger into a clapped out old motorcar, i.e., it'll go better until something important breaks prematurely. Some doctors believe in the "improved oil" theory of HRT, some the "supercharger" theory. It may also be the case that some women respond in one way, and some in the other. How fortunate you are to be living in an age when medical science has advanced to the point of allowing you to take so many different gambles on how to approach the end of your life :-) In short, Terri is right, nobody knows for sure. I hope I've been able to clarify some of the details of what it is that nobody knows :-) Chris Malcolm
Look, here's the deal: HRT isn't like heart medication or insulin; going off it isn't going to kill you. At worst, you'll get some resurgence of "menopause symptoms" -hot flashes, that sort of thing. We can't tell you how bad they'll be -or even if you'll get them -because we don't know. This is truly one of those situations where "your mileage may vary." As people here have been trying to explain, we can't answer your question about physiological after-effects, because the research just hasn't been done. Yeah, you'd think it would be an obvious enough question that *someone* would have looked into it, but they haven't. Nonetheless, thousands of women each year go off HRT, with or without their doctors' blessing, and live to tell about it. Maybe some of those in this newsgroup who've quit can tell you about their experiences. You might also want to check
http://www.susanlovemd.com/community/questions/q000329.htm
- one of Dr. Love's "Question of the Week" just happens to speak directly
to your question..
--Pat Kight
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| General - risks, definition | Which OHT? | Deciding on it | "Natural" hormones | Long term considerations |