Going off HRT AMA?
May 9, 2012 6:59 PM   Subscribe

A while ago, I quit taking HRT without consulting my endocrinologist or any other medical practitioner. How big of an idiot am I? How do I fess up to my doc?

Around two years ago (when I was 25), I was diagnosed with Premature Ovarian Failure (aka Premature Menopause). I had been symptomatic for a few years before this, but (due to some anxieties I have regarding doctors) I didn't get up the balls to get looked at until then.
After getting the preliminary diagnosis, I was referred to an endocrinologist who specializes in this sort of thing. She's apparently a Really Big Deal in her field, but my GP pulled some strings and got me in to see her in a matter of weeks (as opposed to months). She very quickly confirmed the diagnosis, and suggested (strongly) that I begin a course of HRT that I would, presumably, be on until I reached a "natural" menopausal age. I was not pleased about this, and really didn't like the idea of messing with my hormones for 40 years, but was in shock because of the (really rather crushing) POF diagnosis, and couldn't really articulate my concerns at the time. So I just went along with her recommendation. After describing a few options, we settled upon 2MG estradiol (Estrace) and 100MG Progesterone (Prometrium) to begin with. She wanted to see me again in three months in order to determine whether we needed to play with dosage, brands, etc. and to do a follow up.
I never bothered to re-book (due to a whole litany of ridiculous excuses), and after three months, when I finally remembered that I was supposed to be going in for a follow up, I called the office and was told her next available appointment was 7 months away. For reals. Being the dolt that I am, I just got flustered and said I couldn't commit that far in advance and hung up. (Yes, I'm incompetent. I know).
Some time after this, I went on a multi-day hike during which I forgot to pack my meds. When I got back from the hike, I never bothered to start taking them again.
This was almost a year ago.
I am now starting to freak out because I'm moving to the states soon (I'm in Canada now) and will no longer have the luxury to horribly take for granted our health care system....I'm thinking I should maybe go back on the meds, and should maybe see this doc again......but I'm totally embarassed by my admitedly irrational behaviour to the point where I'd rather avoid the situation alltogether. Part of my "decision" (though it was mostly subconscious) to stop taking the HRT was due to an eating disorder that has resurfaced in the past year. I was convinced (rightly or wrongly, I have no idea....my perception of these things is more than a little effed up) that the pills were making me fat. I know that this is the ED talking, but I am still very, very not happy about the possibility of taking them again, and would like to avoid doing so if at all possible.
- If I go ahead with my head-in-the-sand avoidance routine, am I putting myself in super grave danger or just "not-so-healthy-but-won't-really-kill-you" territory?
- If it's the former, and I reallyreallyreally need to get back on the meds, how do I broach the subject with my doc in a way that isn't entirely humiliating? Is it totally awful to fib a little and just go to a new doc and pretend I've never had a diagnosis before?

I know YANMD, but please help me figure out if I'm totally loony or not, and how to deal (or not!) with the consequences of my probably-very-silly actions.
posted by anonymous to Health & Fitness (21 answers total) 2 users marked this as a favorite
You might want to deal with some of these issues in therapy at the same time as, or in advance of, seeing your doctor. Make the appointment with the endocrinologist now, because you know you won't be going in to see her tomorrow, and then explore your issues with the therapist.

BTW, doctors are super non-judgy about noncompliance, in my experience, particularly in sensitive areas like reproductive heatlh. They're just, well, extremely used to it. I went through this one four year stretch of ignoring extreme bleeding, and I can't express how totally non judgmental they all were when I finally fessed up and asked for help. It made me wish I'd bitten that bullet MUCH sooner.

(You should always be honest with your doctors about your past history, what meds you've taken, what your objections have been/are likely to be, etc. It doesn't pay to be quiet about these things.)
posted by SMPA at 7:07 PM on May 9, 2012 [3 favorites]

Please don't lie to your doctor. If you do, they can't help you. Your doctor's job is to help you. Please see her and discuss your concerns. If the pills are giving you unwanted side effects, like weight gain, that's what the follow-up is for.

And if your ED is interfering with your health--which not taking your prescribed medication is--then perhaps you need to seek treatment for that. Your doctor can probably help you take some steps in that direction.

That said, this is surely not a disaster. IANAD, but I am pretty sure that the main point of hormone replacement is to manage some health risks associated with menopause, like osteoporosis and increased risks of certain reproductive cancers, and stave off the discomforts of menopause (including the mental and behavioral symptoms of wonky hormones). But in the grand scheme of things, a year or two isn't likely to make much of a dent in your long-term health.

You're going to be fine. Go to the doctor.
posted by elizeh at 7:15 PM on May 9, 2012

Being hormonally out of whack can make your brain lie to you. Getting on the right dose of meds may really help you with your anxiety and ED. I say this as a woman on HRT who is crazy when off it. Tell your doc - you're not the first and won't be the last noncompliant patient she has seen.
posted by PorcineWithMe at 7:26 PM on May 9, 2012 [1 favorite]

Women do this all the time, for a lot of reasons (including financial). I think you're far better off just copping to it: Hey, so, I was on HRT and I quit, these were my reasons, can we talk about it? ALSO, I'm about to move to the States and...well...you know how that is w/r/t health care, so can we talk about it in that context?

There are pros and cons and it's likely your doctor is aware of them. It's fine to engage them in a discussion about it.
posted by Lyn Never at 7:30 PM on May 9, 2012

I do medical transcription, so am in a position to know that there is a name for this in the medical field -- "medication noncompliance" -- and it is a Very Common Thing. People quit taking their meds all the time for a variety of reasons -- sometimes no reason at all -- so yeah -- as SMPA says, doctors are pretty used to this. Certainly with regard to HRT, one would HOPE that most docs would have somewhat heightened sensitivities to everything that is involved; it's a tricky issue for a number of reasons. So I would say go back to the doctor you saw, say what you said above -- some embarrassment is OK, but Deep Shame is totally not necessary -- and then, if she is shitty about it for some reason, go on to another doctor. If I were you and going to a new doc, I would NOT omit the previous diagnosis, as it will give the new doc somewhere to start besides Square One, hopefully saving you some time and money. Again, I would just say what you said and then say that I wanted to "revisit" the issue.

(Ha ha, this is ironic: I am currently in the position of never having followed up on an endoscopy and now considering Never Going Back rather than just saying that I failed to follow up. I need to take my own advice.)
posted by littlecatfeet at 7:50 PM on May 9, 2012 [1 favorite]

Every doctor has had plenty of patients discontinue meds against their advice. Talk with your doc; they will not be shocked or angry. Also, it sounds like you need more help for your ED. Best of luck to you.
posted by Sidhedevil at 7:51 PM on May 9, 2012 [1 favorite]

To me, you do not sound incompetent, like a dolt, ridiculous, or irrational. You sound like someone who, as you said, has anxieties about doctors. Your description of the situation sounds par for the course for something a person is anxious about. I should know!

If it's the former, and I reallyreallyreally need to get back on the meds, how do I broach the subject with my doc in a way that isn't entirely humiliating?

Maybe accept that your anxiety is there and come up with effective workaround until you can get your anxiety effectively treated (if you want to).

Here are some that I can think of:

-Fax the doctor a letter telling them the entire situation prior to your visit. That might not be as scary as doing it in person.

-Roleplay with a trusted friend or family member about having this conversation with the doctor. Your friend can play the doctor and give you all the replies that you fear. If you hear and reply to those replies often enough, they might start seeming a lot less scary.

-Bring someone with you to your visit for moral support. This person can either be a calm supportive presence for you, or they can actually interact with the doctor, tell the doctor things that they need to know if you find yourself unable to say it, etc. It's not ideal to rely on this forever but I think it is okay as a short term emergency measure.

Most doctors are not going to be mean to you about this. In case you are worried about the few that might be, I have been yelled at by a doctor before and been told a choice I was making was "idiotic." I lived to tell the tale. It wasn't that bad. They told me off, I accepted it, and we went on with our lives. They still treated me. If that happens to you, the worst result, the very worst, will be that you walk out the door of their office and drive away. Which is the exact same result as if they are nice to you about it.
posted by cairdeas at 8:17 PM on May 9, 2012

Doctors' training includes an extremely healthy dose of dealing with noncompliant patients. I am religious about taking my medications and I can tell my doctors don't even believe me when I tell them that. At one point (as a teenager) I did lie to a doctor and said I completed a course of something that had been making me puke and the doctor said, I quote, "Suuure."

They will not be in the least bit surprised. They will be concerned and will try to help you find a course of treatment you will actually stick to. Tell the truth...and do it before you move :)
posted by town of cats at 8:33 PM on May 9, 2012

I'm not a doctor, but I can say that one side effect of early menopause without estrogen is atrophy of your girly parts, which could lead to un-fun complications during sexy time with your sweetie. However, if you're opposed to systemic estrogen and your doc agrees you don't need it, you can fight off the atrophy with little estrogen pills that are more directly applied (inserted!) right where they're needed. There's also a cream suppository but the pills are a lot more pleasant. My doc says there's probably some systemic absorption but it's a lot less than swallowing a normal pill.

And remember, you're paying the doc to provide a service. She is not your boss or mother. Think of her as your contracted employee, if that helps.
posted by ceiba at 8:37 PM on May 9, 2012 [2 favorites]

one thing i haven't seen in this thread is: do you want to have kids? is it even possible? how does taking hormones affect this?

other than that: are the medium to long term outcomes different if you take it vs. not taking it? i don't know because i'm not an expert in the field, but i only bring it up b/c you didn't mention it. if there are irreversible effects of not taking it then that should be taken into account too.
posted by cupcake1337 at 9:29 PM on May 9, 2012

anonymous posted">> I was not pleased about this, and really didn't like the idea of messing with my hormones for 40 years, but was in shock because of the (really rather crushing) POF diagnosis, and couldn't really articulate my concerns at the time.

This isn't nothing, it's a legit concern that a doctor should address. It sounds like this is something that you're using as a weapon against yourself, to blame yourself for not being obedient. There is absolutely nothing wrong with agreeing at the time to a course of treatment but having second thoughts. You have to live in this mind and body every day.

You would be wise to defer to doctors regarding their expertise and authority regarding medicine, sure, but you're not In Trouble if you don't accept their course of treatment. Go to a doc and be straightforward and unashamed.
posted by desuetude at 10:24 PM on May 9, 2012 [1 favorite]

I agree with everyone above who mentioned noncompliance is not the biggest, baddest deal and your doctor should be fine to have a conversation with about it. I also get the feeling you aren't satisfied with the information you've been given about consequences of taking or not taking the meds are. Ask questions until you are!

Medication is never a 'have to' thing.
eg, if you don't take Medication X, you are likely to/definitely will experience A, B, C. If you do, the effects are D, E, F. You get to choose between A- C or D- F. Even when 'A' equals 'you will instantly die' you don't have to take medication, it is a choice you make after being provided all the relevant information. If you have specific concerns about some aspects (like weight) ask extra questions so you can be satisfied with the decision you make.
posted by Trivia Newton John at 10:49 PM on May 9, 2012

IANA physician, this is not medical advice. The main concerns addressed by HRT management for premature ovarian failure are heart disease risk, osteoporosis risk and management of symptoms related reduced ovarian hormone production (the same symptoms many women experience during natural menopause - flushing, night sweats, mood problems and irritability, aches and pains, sexual changes, or sleep problems).
If you aren't bothered by symptoms, then the main reason for HRT is to protect your cardiovascular system and your bones. Both of those are long-term management issues. (So is your eating disorder.) Talk to your doc honestly - if you don't feel like your doctor is your ally in managing your health, you need to find another doctor. (We do have them in the US. They're just staggeringly expensive if you don't have gonzo insurance. But there used to be rules whereby the provincial health care plan reimbursed at least some costs of Canadians living abroad. It's worth looking into that, with all the free time you're going to have once you stop beating yourself up about how you're managing your health. You are going to stop doing that, right?)
posted by gingerest at 11:18 PM on May 9, 2012 [1 favorite]

If you can possibly face a version of this, I would suggest that you ring the receptionist again and say (if it makes you want to cry, that's ok, just write it down and read it out):

"I really need some help. I came to see Dr X two years ago when I was diagnosed with YYY. I was, and still am devastatedby this, and so I stopped taking my meds. I am really scared, and I would really like to see Dr X again. Is there any way I could get an appointment sooner, I really need some help."

If the answer is no, then you ask "could you possibly ask her who else she would recommend", and say thank you.

It may not work, but I think you are being incredibly hard on yourself, and asking for help is a powerful thing.
posted by Augenblick at 11:23 PM on May 9, 2012 [6 favorites]

Hi. You don't talk of symptoms, and you do (still) express reluctance to comply with advice. Was your diagnosis Secondary-POF (ie, secondary to ED and excessive exercise)?

It is always preferable to treat the cause than to medicate the symptoms.

You ask: Is it totally awful to fib a little and just go to a new doc and pretend I've never had a diagnosis before?

I doubt it's wise to feign ignorance or fib to doctors, they've seen it all; but there is wisdom in seeking 2nd opinions when you are as unconvinced as you appear to be that treatment is a necessity.

Going to a new general practitioner, with your history honestly in hand, isn't a bad idea. You'll be referred to another endocrinologist, and maybe you'll feel better about accepting advice the 2nd time around. Disclose fully.

Do raise your aversion to weight gain with a general practitioner. It may influence her suggested treatment(s) and referrals. (After 12 months I don't think it's appropriate to return to the endocrinologist without a renewed referral. It may be deemed appropriate in Canada.)

Good luck.
posted by de at 5:02 AM on May 10, 2012

Hi Sweetie,

Your diagnosis is a lot to take in. You were probably in a bit of shock from the whole thing, not to mention the fact that menopause, no matter when it happens, will really kick your ass.

Please remember, when your hormones are out of whack, your brain not work so good.

No need to feel ashamed, but you do need to get in to see a doc and get back on track.

You have legitimate concerns with HRT. Personally, I think they're the greatest thing since sliced bread. I, however am nearly 50 and had premature menopause via hysterectomy. I had morphine to get me over the hump. I'm guessing you aren't so lucky.

Talk to your doctor, even a GP, about your concerns. There may be more reasons for you to be on HRT considering your age, compared to a crone like me.

One way to help with interactions with your doctor is to bring someone to advocate for you during your visit. This is recommended for elders, but it can work for you too. Bring a trusted friend to prod you, and to take notes during your visit, this way, if you get flustered, or have issues expressing yourself, you've got an ally. (Your doctor is an ally too, but somethings it's hard to see it that way.)

Also, I get a wonderful hormone cocktail compounded for me, Estradiol, Progesterone and Testosterone. The testosterone helps with fatigue and sex drive.

The whole thing is less than optimal, but you can live a wonderful life with your diagnosis. Getting the meds right is part of it.

As for weight gain, yeah, that's a thing. I've made my peace with it, but you should see a therapist to help you wrap your head around the fact that lacking hormones, adding hormones and your endocrine system in general may be causing issues with your weight. I'm not saying there's a lot you can do about it, but you need to accept that because you have a health issue, certain things are out of your control.
posted by Ruthless Bunny at 6:28 AM on May 10, 2012 [1 favorite]

You mentioned not wanting to be on HRT for the next 40 years. I think that is very valid, particularly since you are still so young, but sometimes that's just the way it goes.

Interacting with the healthcare community is often scary, too often we tell you things you don't want to hear while not really giving you the proper space in which to process and ask questions. And what others have said is true, noncompliance is SO common. It won't surprise your doctor. But to be an informed healthcare consumer, you got to interact with your doctor openly and honestly. Figure out what the ramifications really are for not taking your meds and THEN decide whether to continue.

Because here's the deal, we only get this one body, and the better you care for it now, the less you'll have to deal with us (the healthcare community) later. Imagine yourself at 35 or 42 or 57 and whether you would look back at your now self with your future health in your hands and what you would say to yourself. That goes for your ED as well.

Good luck!
posted by ilikecookies at 7:44 AM on May 10, 2012

Part of your doctors job is to help you understand why you need the drugs. Also to discuss alternatives. And doctors deal with patients going off meds all the time. So don't worry about her opinion of you. You've been dealing with a lot and you need to see her again. That's all.
Best of luck in dealing with this.
posted by SLC Mom at 7:47 AM on May 10, 2012

I just want to second what Augenblick says above, with an added "And I am moving to the US soon and really want to make sure I am healthy when I go." Fear of the American health system is going to resonate with anyone in the Canadian medical system and may buy you some additional sympathy.
posted by looli at 9:22 AM on May 10, 2012 [1 favorite]

I was diagnosed with POF at approximately the same age you were, and went to the big name respected person here in the US (as part of the NIH study). I too had reservations about HRT and its affects on me long-term.

Last year, I tried a break from the HRT. I told my doctor after the fact, including that I was going back on it pronto, because the symptoms of my POF (burning hot flashes, brain fogginess, insomnia) were really truly still there (I guess I wanted to test). She was fine with it, and even a little amused. No scolding, or any of that.

Bottom line: HRT for women with POF is NOT the same as HRT for post-menopausal women. In our case, we are replacing the hormones that should be there, that our bodies are selfishly withholding. In the case of normally-aged menopausal women on HRT, they are extending the number of years their bodies are exposed to said hormones. So for people in our situation, the benefits *likely* outweigh the risks (I know this is true for me -- my cholesterol dropped 90 points after going on HRT, for example. Also, I actually lost weight, not gained.)

You may wish to look at these links to set your mind at ease. Also, feel free to memail me:

posted by pixiecrinkle at 9:45 AM on May 10, 2012 [1 favorite]

I'm been on long term HRT for 3 years now (trans woman). I can sympathise with really rather not having to take the tablets for the next 40 years, some days I very much resent them.

If I go ahead with my head-in-the-sand avoidance routine, am I putting myself in super grave danger or just "not-so-healthy-but-won't-really-kill-you" territory?

Basically what gingerest said. Most of the increased risks are in the first few years of taking them, or at least that was my understanding.

You do have the option of patches instead of tablets. It took a little while to work out the right dose for me working with my endocrinologist, so just like everyone else said be honest with them.

The weight gain is an issue, but now I'm on a dose that works for me, the brain fog etc has gone and I can work on eating better and exercising more, with the weight slowly coming off
posted by Z303 at 10:00 AM on May 10, 2012

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