Uh, oh. I ignored the warning...

[AshleyP]

I took a lot of meds for BP, CHF and arrhythmia before ever starting HT. I take a lot of pills twice/day. I generally get my prescriptions filled at a 90 day quantity. When I get 'em refilled, usually come in really big bottles so I keep a "working" supply in smaller bottles that don't clutter the nightstand so much.

There's always discussions on this board of the "mental" effects of HT. I fall into the category of "not much of an effect." So the other day, when I finished my working supply of estradiol, I thought I'm just gonna stop taking it for a while to see what happens. fwiw, I'm on my second day of abstinence, and feel no difference.

Today, I refilled the working supply from the long term stash and noticed a warning on the label:

"IT IS VERY IMPORTANT THAT YOU TAKE OR USE THIS EXACTLY AS DIRECTED. DO NOT SKIP DOSES OR DISCONTINUE UNLESS DIRECTED BY YOUR DOCTOR."

"Geez, that's pretty strong, but probably just a generic warning," I thought. As I considered how long to continue my abstinence, that warning bugged me a little, so I looked at the labels of all the other meds that I take, and NONE of them had that same warning. That includes two meds that I had to be under 24 hour supervision just to begin.

Some questions come to mind. Does the label on your prescription include the same warning? For those that have "abstained" for a period, what did you experience? For any pharmacists among us, how does that warning label come to be? For anyone that was on HT or knows others that just stopped, even for a while, your thoughts please.

Frankly, I'm sitting on the fence considering whether to continue HT. I'm gonna talk to my pharmacist, therapist and doctor about these issues, but I'd really value y'alls input.

--AshleyP

[Dena]

Interesting. I checked my bottle of estradiol and that was one of three warnings on the bottle. Estradiol should be taken on a regular schedule to be effective however having been off estrogen, the first issue is hot flashes which are only hard on your bed sheets. Possibly the label is on the bottle because estradiol is primally used by women to prevent calcium loss from their bones and we just got the generic warning.

[AshleyP]

...the first issue is hot flashes which are only hard on your bed sheets. Possibly the label is on the bottle because estradiol is primally used by women to prevent calcium loss from their bones and we just got the generic warning.

That's enlightening. I didn't think of "night sweats" as hot flashes. I've experienced that. And it seems my wife said something about that the other day. I'll have to ask...

Good input and thx,
--AshleyP

[JB_Girl]

Ashley,
My Estradiol does not have that warning and, as it affects blood clotting, I was taken off mine for a month before both vaginaplasty and labiaplasty.  Fortunately for me I did not experience symptoms of menopause (hot flashes) either time.   What will obviously cease is continued feminization and as that is my primary purpose for taking hormones I am pretty faithful with my regimen.  If I may be so bold as to inquire why you choose to discontinue HRT?  These drugs made me feel whole for the first time in my life.  It would require a pretty significant reason of health for me to stop altogether and even though my doctor has decreased my dosage post op, I value the effects on my skin and, indeed, my attitude to willingly sacrifice them.

Peace,
Julie

[Devlyn]

I think you need to get right back on it. This is your source of hormones now. The human body doesn't turn your hormones off and on, and neither should you in my opinion. Please be careful, this is your health at stake. 

Hugs, Devlyn

[SadieBlake]

I went off my hrt at about the 7 month point to see how I might feel about cycling HRT and the possibility of spending part of my time as a functioning male (able to ejaculate, hold erections better etc). I'd let my endocrinologist know of that possibility and while she was dubious she didn't raise any red flags. I also discussed at length with my psychiatrist, again no red flags.

Result was my libido went even lower and a bunch of habits of mind that I hadn't even noticed receding on HRT came back with a vengeance. That really anchored my decision to both stay on HRT and begin my commitment to GCS (this was a couple months before my consultation with Satterwhite, scheduled months earlier).

So I did see differences and was glad I did it.

[Denise]

It's this a possibility?? It could also be a warning for women using it for contraception.

Sent from my LG-H910 using Tapatalk

[KayXo]

I took a lot of meds for BP, CHF and arrhythmia before ever starting HT. I take a lot of pills twice/day. I generally get my prescriptions filled at a 90 day quantity. When I get 'em refilled, usually come in really big bottles so I keep a "working" supply in smaller bottles that don't clutter the nightstand so much.

There's always discussions on this board of the "mental" effects of HT. I fall into the category of "not much of an effect." So the other day, when I finished my working supply of estradiol, I thought I'm just gonna stop taking it for a while to see what happens. fwiw, I'm on my second day of abstinence, and feel no difference.

Do the meds you take, by any chance, interact with the estradiol, as in affect CYP enzymes, like CYP3A4 or CYP1A2? This could perhaps be the reason your E is not doing much or you need more considering your metabolism or constitution (height/weight)? Have you ever taken E non-orally, maybe more effective that way? Is your T sufficiently suppressed?

I think it would be worthwhile to discuss these issues with your doctor AND let them know if you decide to stop.

[DawnOday]

Welcome to my world. I take 16 medications a day. Estradiol and Finasteride are just two of them.  Luckily I am also on blood thinners so clotting is less of an issue. The only thing wrong with that is if I look at my arms funny they start bleeding. If I happen to bump my body anywhere I get a bruise or I bleed like a stuck pig.

[AshleyP]

If I may be so bold as to inquire why you choose to discontinue HRT?  These drugs made me feel whole for the first time in my life.  It would require a pretty significant reason of health for me to stop altogether and even though my doctor has decreased my dosage post op, I value the effects on my skin and, indeed, my attitude to willingly sacrifice them.

Sure. Because of the medical history outlined, I never expected to be able to begin a HRT regimen. Due to CHF, I had been taking spiro for a number of years and even though I had normal male T ranges, I felt different after starting to take it. A few years later, I decided to retire. I spent more time researching the TG condition and began to wonder if HRT might be an option. I remember reading about a person's travails with a required RLE experience, and decided that I could do that with minimal disruption. So I did for a couple of years before getting approval to begin HRT.

Being an older transitioner, I didn't have very high expectations for physical changes but, based on input from others, expected the "mental" aspect to be to be more impactful, and it hasn't been. Not by a long shot.

Thanks for the input,
--AshleyP

[Dena]

Being an older transitioner, I didn't have very high expectations for physical changes but, based on input from others, expected the "mental" aspect to be to be more impactful, and it hasn't been. Not by a long shot.

That raises the question, what are your testosterone and estradiol levels. If your sprio dosage is for other conditions, it might not be enough to be an effective blocker. Often the doctors have to tweak the dosages depending on the test results to reach the desired levels because there isn't a one size fits all solution.

[AshleyP]

Thanks, y'all for the input. I thought the content of that warning label was enough to make a point of it.

Devin - That certainly is a concern. I may have been on HT long enough that T production could be permanently suppressed, I don't know.

Do the meds you take, by any chance, interact with the estradiol, as in affect CYP enzymes, like CYP3A4 or CYP1A2? This could perhaps be the reason your E is not doing much or you need more considering your metabolism or constitution (height/weight)? Have you ever taken E non-orally, maybe more effective that way? Is your T sufficiently suppressed?

Kay - I really don't have much of an understanding of CYP enzymes yet. In fact, first I'd heard of it. I'll look into it and ask my doctor. I've only ever taken E orally (though sometimes sublingually), and the only thing that I have to go on is lab results that show both T and E to be in the "desired" range.

Dawn - I call it "springing a leak." It's more than annoying.

All the best,
--AshleyP

[AshleyP]

That raises the question, what are your testosterone and estradiol levels. If your sprio dosage is for other conditions, it might not be enough to be an effective blocker. Often the doctors have to tweak the dosages depending on the test results to reach the desired levels because there isn't a one size fits all solution.

I only have the first three month test to go by, and we discussed those back in the early part of the year. I was concerned because I was unfamiliar with the different tests. My clinic specifies a total serum estradiol test and the results came back at 926 pg/mL and the total testosterone was 27 ng/dL. At the time, y'all pointed out that estrogen test was not the same as the more commonly discussed estradiol tests. The doctor's comment was that it was "high" but didn't change any dosages. When I started HT, my spiro dosage was doubled.

Coincidentally, I just went for my next check up just before this "period of abstinence" and haven't gotten the full lab results yet. I did have an estradiol test this time (I looked up the code number from the Quest web site) that I specifically asked for. I got one of the lab technicians to tell me what that result was, 103 pg/mL.

Frankly, I sorta cheated in that I made sure the tests was run late in the administration cycle. I intended for it to be a full 24 hours after the last dose, but circumstances caused it to be more like 29 hours after the last dose (taken sublingually, this time).

Again, as always, thanks for the feedback,
--AshleyP

[Dena]

Lets see, 27 ng/dl testosterone and 103 pg/ml estradiol, it's a girl! Those numbers are golden and you should be feeling the full effects of feminine HRT. If I were to compare my numbers with yours, my testosterone would be a little higher and my estrogen would be half what yours is.  A secondary note is you can go to the Quest web site and set up an account. With the account, if you are fast, you can pull a full set of test results before your doctor sees them. Often mine are complete in the evening after the doctors office closes so I get them pretty quick.

[KayXo]

Kay - I really don't have much of an understanding of CYP enzymes yet. In fact, first I'd heard of it. I'll look into it and ask my doctor. I've only ever taken E orally (though sometimes sublingually), and the only thing that I have to go on is lab results that show both T and E to be in the "desired" range.

"Desired" range means nothing. It's an arbitrary range set by endocrinologists who forgot to take into account that we are not ciswomen, that our history is very different (puberty, in-utero hormonal environment, etc.) and that every individual is UNIQUE. Besides, ciswomen's range varies widely, from as little as 20 pg/ml to up to 700+ and lab results are a number that is measured at a random time, nothing more so that at time Y, you can be in the "desired" range and at time X, you may NOT be. In transwomen, there has never been a level shown to produce optimal results, ever.

In recent studies, they even admit:

European Journal of Endocrinology (2008) 159 197–202

"There are no evidence-based recommendations for optimal hormonal treatment regimens for transsexuals, but there are a number of expert opinions in the literature (1–4)."

Lancet Diabetes Endocrinol. 2017 Apr;5(4):291-300.

"The precise concentration of oestradiol that results in adequate feminisation with the lowest risk of complications is not known.28"

Ann Endocrinol (Paris). 2016 Feb;77(1):14-21.

"There is currently no international recommendation for the optimal choice of the drugs, dosages and routes of administration."

We just don't know. But, we persist in aiming for a "desired" range as if we knew. 

As regards to T levels, you need to also realize that spironolactone not only reduces T levels but ALSO BLOCKS T. So, blood test results are misleading because they don't tell you how much of what is measured is blocked by spiro.

If we were more rational, I think, it would make more sense to actually try and find the dose that is optimal for the INDIVIDUAL, starting with a low dose and then adjust according to how they are feeling and what kind of results they are seeing (i.e. breast growth, fat distribution, etc.)

Lets see, 27 ng/dl testosterone and 103 pg/ml estradiol, it's a girl! Those numbers are golden and you should be feeling the full effects of feminine HRT.

I respectfully disagree. Some women may not respond effectively to these levels (or even respond to 'worse' levels), it depends. At double that level, measured 15 hours after my last dose, I had no breast growth, no nothing. My levels needed to be triple that for breasts to finally begin growing. Everyone is different, sensitivity varies and tests do not measure sensitivity, AFAIK.

Also, I bet she would have quite different levels at 1, 2, 4, 8 and 24 hours post dose. So, really, that number is one of many almost infinite numbers during a 29 hour range. Not very accurate, if you ask me.

[AshleyP]

Lets see, 27 ng/dl testosterone and 103 pg/ml estradiol, it's a girl! Those numbers are golden and you should be feeling the full effects of feminine HRT. If I were to compare my numbers with yours, my testosterone would be a little higher and my estrogen would be half what yours is. 

That's cute, thx. I tried to time the draw so that I'd know what the low end range of the estradiol would be. I think the level measured above is certainly significant especially since it's the low end of the range. I would imagine that it's most always higher than that when I'm taking the meds on schedule. I saw a relevant post of yours in another topic that I'm gonna try to find and respond to it. I've been meaning to add my 2¢ there but just haven't gotten around to it yet.

A secondary note is you can go to the Quest web site and set up an account. With the account, if you are fast, you can pull a full set of test results before your doctor sees them. Often mine are complete in the evening after the doctors office closes so I get them pretty quick.

I'm still trying to get that set up.   I've been working at it for a while and still haven't gotten it to work. I'm as keenly interested in getting it for the PT tests that I do every six weeks or so as for the HT lab results.

All the best,
--AshleyP

[Dena]

I'm still trying to get that set up.   I've been working at it for a while and still haven't gotten it to work. I'm as keenly interested in getting it for the PT tests that I do every six weeks or so as for the HT lab results.

Shouldn't be that difficult. Just go to quest and sign up.

[AshleyP]

"Desired" range means nothing. It's an arbitrary range set by endocrinologists who forgot to take into account that we are not ciswomen, that our history is very different (puberty, in-utero hormonal environment, etc.) and that every individual is UNIQUE.

Kay - I know how you feel about this    That's why I put it in quotes as it was intended to be a tongue-in-cheek comment. lol  And, I totally agree with you.

As regards to T levels, you need to also realize that spironolactone not only reduces T levels but ALSO BLOCKS T. So, blood test results are misleading because they don't tell you how much of what is measured is blocked by spiro.

I'd emphasize this point. In fact, I think at least in my case, it blocked T far more effectively than it suppressed T production. In fact, before one T test, I tripled my dosage of spiro for a couple of weeks and the impact on the total T level was negligible. After the years of spiro, I'd developed what I described at the time as breast buds the size of slightly smashed boiled eggs, so something was going on.

I'm wondering now, in hindsight, whether that long term blocking of T combined with two years RLE might have served to reduce or even nearly eliminate the anxiety that others report as being relieved. Food for thought.

As always, thanks for the feedback.

--AshleyP

[KayXo]

I also wonder if sometimes Spironolactone could be doing more harm than good as it's been shown to interfere with estrogen by also binding to estrogen and competitively inhibiting estrogen from binding. Similar to tamoxifen. They gave estrogen to rats and then estrogen + spiro and found that the latter combination reduced estrogen action relative to the former.

[AshleyP]

I went off my hrt at about the 7 month point to see how I might feel about cycling HRT and the possibility of spending part of my time as a functioning male (able to ejaculate, hold erections better etc). I'd let my endocrinologist know of that possibility and while she was dubious she didn't raise any red flags. I also discussed at length with my psychiatrist, again no red flags.

Result was my libido went even lower and a bunch of habits of mind that I hadn't even noticed receding on HRT came back with a vengeance. That really anchored my decision to both stay on HRT and begin my commitment to GCS (this was a couple months before my consultation with Satterwhite, scheduled months earlier).

So I did see differences and was glad I did it.

Sadie, how long after stopping HT did it take before you began to notice the impact?

--AshleyP