Community Conversation => Transitioning => Hormone replacement therapy => Topic started by: Danielle11746 on April 28, 2015, 11:27:15 PM Return to Full Version

Title: Stopping hrt after 20 years?
Post by: Danielle11746 on April 28, 2015, 11:27:15 PM
I am debating on stopping hrt. 

I have been on hrt for the past 20 years since the age of 18.  In the early years I took high doses of hrt, Premarin, combined with Spiro, and a shot once a week.  I got castrated about 10 years ago, and switched to taking a smaller dose of Premarin a day, combined with a random shot roughly every 2 months. 

The past year I have just felt like crap.  I gained some weight, became depressed, my skin looks like ->-bleeped-<-, and I am tired all the time.  I went to an endo and I had a borderline thyroid level.  He started me on a low dose of thyroid medication.  I took it for 2 months, I gained even more weight and my hair started thinning.  I have always been very vein and when my hair started thinning I stopped the thyroid medication, combined with the horrid things I read about thyroid replacement. 

Months later I still feel like crap and have been reading that hrt can affect the function of your thyroid.  I am passable and have no testosterone, would it hurt if I stopped hrt, what is it actually doing for me at this point?


Moderated due to Dosages, against TOS 8 8. The discussion of hormone replacement therapy(HRT) and it's medications are permitted, with the following limitations: C. The discussion of recommended or actual dosages is strongly discouraged to prevent information obtained on this site from being used to self medicate. Thanks Katrina xx
Title: Re: Stopping hrt after 20 years?
Post by: Ms Grace on April 29, 2015, 12:11:45 AM
You would need to discuss with an endo or doctor - but if you don't have any sex hormone (either estrogen or testosterone) you run a much higher risk of developing osteoporosis (which is why it's more prevalent in post menopausal women).
Title: Re: Stopping hrt after 20 years?
Post by: Randi on April 29, 2015, 12:23:50 AM
I think a little testosterone would help out a great deal.  Everyone needs at least some testosterone and you probably have close to zero.
Title: Re: Stopping hrt after 20 years?
Post by: Danielle11746 on April 29, 2015, 02:07:53 AM
I thought about a little testosterone but it scares me.  I have zero sex drive, along with weight, energy and increased mood it seems like an easy fix.  It still scares me, it's something I fought to rid myself of from an early age.  Also the possibility of losing my looks, becoming not passable and a beard.   
Title: Re: Stopping hrt after 20 years?
Post by: katrinaw on April 29, 2015, 03:51:17 AM
Yeah, that's a tough one, kinda scary looking at T favourably after years of getting it out of us. :laugh:
But T in certain low levels is good... they say

L Katy  :-*
Title: Re: Stopping hrt after 20 years?
Post by: Cindy on April 29, 2015, 04:03:36 AM
Normal adult female T levels are 15-70 ng/L. If you are lower than that, lack of libido, depression and physical effects (facial hair growth, loss of head hair etc) can occur. See your endo.

Males BTW 300-1500 ng/L
Title: Re: Stopping hrt after 20 years?
Post by: girlygirl002 on April 29, 2015, 04:08:17 AM
I'm very scared about let the testosterone do bad things in my body.. I'd rather to live my whole life taking my HRT carefully and with low dosis than living with a little testosterone in my blood..

Maybe I can look a little crazy.. but I can't live with any masculine hormones inside me..
Title: Re: Stopping hrt after 20 years?
Post by: SonadoraXVX on April 29, 2015, 04:22:28 AM
Sorry to hear that Danielle  :(, best advice would be what Ms. Grace said, seek a competent  Endo, who specializes specializes in trans patients, and see what the doc says. I would imagine, a little hrt won't hurt you. The thyroid thing, that is a tough one, reason I stick to what my doc says, even if its in the lower spectrum of hrt, even though I hate the poopoo of his decision. Again, sorry for your situation Danielle :(
Title: Re: Stopping hrt after 20 years?
Post by: CollieLass on April 29, 2015, 04:31:37 AM
I had a 2 year 'cold turkey' pause in HRT enforced on me (by losing my G.P to retirement and not being able to locate another whom would support me); and that, after 30+ years of continuous and monitored Oestrogen.
I discovered that to be a horribly damaging experience; both physically and emotionally, and took a terrible toll on my health and well-being.
It`s taken many months of care by my supportive, new G.P and endocrinologist to put right the resultant negative effects.

As for coming off HRT-support 'willingly'?.....The expression: ".....From my cold dead hand" comes to mind!  ;)
Title: Re: Stopping hrt after 20 years?
Post by: kelly_aus on April 29, 2015, 06:29:06 AM
Quote from: girlygirl002 on April 29, 2015, 04:08:17 AM
I'm very scared about let the testosterone do bad things in my body.. I'd rather to live my whole life taking my HRT carefully and with low dosis than living with a little testosterone in my blood..

Maybe I can look a little crazy.. but I can't live with any masculine hormones inside me..

Even cis women have a small amount of T in their systems, it's quite normal.. In fact having a T level that is too low or zero can have negative effects.
Title: Re: Stopping hrt after 20 years?
Post by: girlygirl002 on April 29, 2015, 06:39:15 AM
Quote from: kelly_aus on April 29, 2015, 06:29:06 AM
Even cis women have a small amount of T in their systems, it's quite normal.. In fact having a T level that is too low or zero can have negative effects.

This is true Kelly, even cis women have a little amount of testosterone.. but in my own case.. a little testosterone can ruin my body.. ( hair growth..acne and other things..) because I'm very sensitive with this terrorific hormone  :-\
Title: Re: Stopping hrt after 20 years?
Post by: Ian68 on April 29, 2015, 07:22:10 AM
Quote from: Cindy on April 29, 2015, 04:03:36 AM
Normal adult female T levels are 15-70 ng/L. If you are lower than that, lack of libido, depression and physical effects (facial hair growth, loss of head hair etc) can occur. See your endo.

Males BTW 300-1500 ng/L

Bingo.  Genetic females need testosterone, too, everyone does.  Below the higher levels on the female end, you will not start growing a beard or anything like that (and even that depends on other factors).  It sounds like you're in an equivalent of early menopause, and you very likely do need some testosterone supplemementation.  Definitely talk with your endocrinologist.

Regarding HRT, you should not, should not go off of it unless directed to by (multiple) doctors.  If you have had an orchiectomy, your body does not produce sex hormones on its own, and they are needed to regulate many critical systems in the body, including metabolism, thyroid, etc. 

Take care.
Title: Re: Stopping hrt after 20 years?
Post by: Charlotte2 on April 29, 2015, 07:40:58 AM
I had kinda the same experience as you. I transitioned in the late 90s and sort of went through a mid-life crisis recently: worries about passing, aging etc. So just a thought: maybe the depression is the root cause here?

Alternative you could try to come off HRT but the risk is you'll get weak bones (Osteoporosis). I've met people (trans) who've come off HRT in their 40s and ended up with that very quickly. The risk seems to be higher than for cis-women.

Either way you really need an endo who's had lots of experience with working with trans women.

Title: Re: Stopping hrt after 20 years?
Post by: Danielle11746 on April 29, 2015, 09:52:01 AM
Thank you all for your responses.  Has anyone taken testosterone replacement, if so what was your experience?  I am planning on booking and apt with an endo, either to try a higher dose of thyroid medication or a very very very low dose of testosterone.
Title: Re: Stopping hrt after 20 years?
Post by: KayXo on April 29, 2015, 10:09:42 AM
I'm surprised you are taking Premarin as there are equally effective and safer (due to horse estrogens in Premarin that strongly affect coagulation) alternatives like bio-identical estradiol that can be taken orally, topically, intramuscularly, etc. Before introducing testosterone, I would personally explore whether the amount of estrogen is effective enough for you and if perhaps adding bio-identical progesterone could help. Testosterone would be my last resort due to masculinizing effects.

Progesterone, in some women, improves libido, energy levels, has a calming effect, makes skin/hair softer and nails stronger. While estradiol can have a complementary anti-depressant effect, gives energy, increases skin moisture, etc. They also usually keep breasts firm, skin supple, and slow down the ageing process. Estrogen usually keeps weight stable whereas progesterone can increase it. They can also aid in maintaining body curves.

You could discuss these options with your current doctor and get second opinions from others expert in the field.

Good luck. :)
Title: Re: Stopping hrt after 20 years?
Post by: Danielle11746 on April 29, 2015, 10:43:10 AM
I truly don't want any more curves, as you can see in my profile photo I am pretty curvey.  Although when I started hrt at 18 I was sickly skinny, and years later that changed.  My breasts are very large and have grown a great deal in the last year after gaining a few pounds.  My rear and hips are thick also as I have had them augmented. When I was young I loved the look of Anna Nicole Smith and said "I want my body to look like that", until I woke up one day and I had and have that body.  I fear adding progesterone would add even more curves. 
Title: Re: Stopping hrt after 20 years?
Post by: JLT1 on April 29, 2015, 10:51:23 AM
Hi

Check liver function.  Talk to your doctor about estrogen cream.  It's a different form of estrogen and a different delivery method. Dosage is double normal menopose dose.  Hold there until estrogen stable and adjust accordingly.

After all that,  if still feeling poorly, try thyroid medication or testosterone.

Keep us posted....

Hugs,

Jen
Title: Re: Stopping hrt after 20 years?
Post by: Miharu Barbie on April 29, 2015, 12:16:25 PM
Hi Danielle,

I'm going on 17 years of HRT myself.  Two years ago I had a similar experience of reduced energy and weight gain.  My doctor at that time also told me that I was showing signs of borderline hypothyroidism and suggested thyroid medication.  I had/have no desire what-so-ever to take thyroid medication.  My mom is on it, and her sister is too.  I'm very resistant.  My doctor agreed that medication wasn't critical but warned that if it got any worse, medication would be essential.  I did a little research and figured out what I could do on my own to support the healthy function of my thyroid without the use of medications.  Ever since, my T4 and TSH tests suggest that my thyroid is working perfectly, my energy is good, and my weight, well, cookies and stout are to blame, not my thyroid.

I hesitate to publically get into what it is that I'm doing to support my thyroid as I do not wish to run afoul of any forum rules.  If you want to PM me, I'd be happy to share with you what it is that I do to support healthy thyroid function.  As always, you should check with your doctor before EVER taking advice from the internet.  And it goes without saying, what works for me may very well not work for you.

I hope you get to feeling better.

Peace,
Miharu
Title: Re: Stopping hrt after 20 years?
Post by: Ian68 on April 29, 2015, 02:22:57 PM
Quote from: Danielle11746 on April 29, 2015, 09:52:01 AM
Thank you all for your responses.  Has anyone taken testosterone replacement, if so what was your experience?  I am planning on booking and apt with an endo, either to try a higher dose of thyroid medication or a very very very low dose of testosterone.

You might also try medical forums elsewhere because there are many cisgender women who need testosterone supplements, and you could ask them about their experiences.  You wouldn't even need to disclose that you're transgender because the situation is pretty much identical.  Glad that you're going to the doctor!  Best of luck!
Title: Re: Stopping hrt after 20 years?
Post by: Ian68 on April 29, 2015, 05:16:17 PM
Quote from: kelly_aus on April 29, 2015, 03:26:58 PM
Why is it every time I read something like this on a trans support site I roll my eyes and think BS?

Oh, that's why, Med School.

Kelly, I appreciate where you're coming from; as a scientist, I also run into a fair amount of incorrect assumptions.  However, I don't feel that your comment was constructive at all.

@girlygirl: We all need some amount of testosterone, regardless of sex or gender - no one can simply say "I can't have testosterone in my body."  If having "female range" amounts of testosterone and estrogen in your system results in male pattern hair growth, that could very well be the result of other genetic factors.  For example, my T levels are on the higher but still within normal range for a genetic female.  I have a low voice, lots of body hair, and I grow dark, coarse hair along my chin and neck.  Clearly, this isn't because my T levels are unusually high.  If you're worried about normal levels of T having effects that you don't want, you can deal with them the same ways many cisgender women do (acne medications/ waxing/ etc.), or talk with your doctor about clinical options.  It's not very comprehensive but if you Google "testosterone in women" and click the WebMD link, they do provide some information that's pretty accessible.  Mayo Clinic online also offers some information, and is a reputable source. 

For medical information, in general, you really want to consult a physician, and not rely upon web resources as many have an agenda behind them.  I know that Mayo Clinic, and to a lesser extent, WebMD consistently provide limited but mostly accurate information. 
Title: Re: Stopping hrt after 20 years?
Post by: Jill F on April 29, 2015, 07:29:05 PM
Let's keep it civil, folks.  This is a support site.  Staff are to be held to an even higher standard.   

5. The posting of messages on the chat or forums which are of a threatening tone; intended solely to communicate sarcasm, contempt, or derision; are intended to belittle or ridicule a person or group; to disgust the viewer; contain obscene or pornographic materials; which are intended to titillate; or which depicts/promotes illegal acts; will not be permitted.
Title: Re: Stopping hrt after 20 years?
Post by: KayXo on April 29, 2015, 08:17:55 PM
Quote from: JLT1 on April 29, 2015, 10:51:23 AM
Talk to your doctor about estrogen cream. 

I read from studies that creams absorb poorly and give very low blood levels.
Title: Re: Stopping hrt after 20 years?
Post by: kelly_aus on April 29, 2015, 08:38:48 PM
Quote from: girlygirl002 on April 29, 2015, 06:39:15 AM
This is true Kelly, even cis women have a little amount of testosterone.. but in my own case.. a little testosterone can ruin my body.. ( hair growth..acne and other things..) because I'm very sensitive with this terrorific hormone  :-\

It's actually not possible to completely suppress T anyway.. Not without removing both testicles and both adrenal glands and bilateral adrenalectomies are almost unheard of.

Hair growth and acne both have causes other than a higher T level, just saying.. T levels that are also too low can be a cause in some people.

Title: Re: Stopping hrt after 20 years?
Post by: Ian68 on April 29, 2015, 09:12:04 PM
Ultimately, you'll be best-served by consulting with your physician, discussing your concerns, and making an informed decision with your healthcare provider.  No one here is truly qualified to advise you in what is best for your health.  That said, you can still take away much of the input received.  Things to ask your doctor about, just from this board, include testosterone supplements, other thyroid medications, and also iron and vitamin D.  If you feel that depression is a big part of it, you might also meet with a counselor, and discuss these feelings. 

Just take care of yourself, and don't try to make rushed decisions. Cheers! :)
Title: Re: Stopping hrt after 20 years?
Post by: JLT1 on April 29, 2015, 10:00:23 PM
Quote from: KayXo on April 29, 2015, 08:17:55 PM
I read from studies that creams absorb poorly and give very low blood levels.

Creams can be quite effective....IF you put it on the correct place and let it dry before you start brushing against it with other body parts or clothing.   Also, not all creams are good in this application.   However,  I also recommend double normal menopose dosage so it should be fine. 

My thoughts were to get away from pills (liver and adsorption issues) and the highly variable levels that injections can have.  Sublingual can work if the pharmacist is competent. ...

Jen
Title: Re: Stopping hrt after 20 years?
Post by: Danielle11746 on April 29, 2015, 11:19:42 PM
Thank you everyone for your feedback.  For me hormones have been the strongest factor in my transformation, even stronger then any surgery I have had.  It takes many years to see the results but they have transformed me.  I pass with flying colors, so what I did worked.  I will be seeking an endo as to what I should be on at this stage in my life, 38 years old with 20 years of hrt. 
Title: Re: Stopping hrt after 20 years?
Post by: KayXo on April 30, 2015, 07:43:52 AM
Quote from: JLT1 on April 29, 2015, 10:00:23 PM
the highly variable levels that injections can have.

I do quite well on injections and so do many girls. :)
Title: Re: Stopping hrt after 20 years?
Post by: JLT1 on April 30, 2015, 01:49:18 PM
[quote au thor =Kay Xo link=topic=187636.msg1669467# msg1669467 date=30397832]
I do quite well on injections and so do many girls. :)
[/quote]

Agreed, they can be extremely effective.   For some, LTL as an example, the levels can change quite drastically between injections.  I use estradiol gel and have good results but isn't for every one.  It would be a change for OP and could help her.  Long term,  probably back to injections of a different form of E.

Jen
Title: Re: Stopping hrt after 20 years?
Post by: Danielle11746 on April 30, 2015, 02:58:43 PM
I feel injections are truly the best for feminization.  They are the strongest.  When I started hrt I did a very high dose once a week, so high it was dangerous.  At 18 years old in 1994 resources were slim.  I heard word of mouth about a pharmacist located in the Bronx who sold hormones to "the girls" over the counter with no perscription.  I went to this pharmacy once a month in the early years.

Many years later I find injections to be too strong and not good for simple upkeep.  When I do it makes me nauseous and the following day I tend to feel like crap


Mod edit:
DIY is dangerous and against TOS 8 B
Quote8. The discussion of hormone replacement therapy(HRT) and it's medications are permitted, with the following limitations:

    A. You may not advocate for or against a specific medication or combinations of medication for personal gain. This is strictly prohibited.
    B. You may not discuss the means to acquire HRT medications without a prescription. The discussion of self medication without a doctors supervision is prohibited.
    C. The discussion of recommended or actual dosages is strongly discouraged to prevent information obtained on this site from being used to self medicate.
Title: Re: Stopping hrt after 20 years?
Post by: KayXo on April 30, 2015, 05:31:32 PM
Quote from: Danielle11746 on April 30, 2015, 02:58:43 PM
I feel injections are truly the best for feminization.  They are the strongest.  When I started hrt I did a very high dose once a week, so high it was dangerous.

Why do you deem it was dangerous? Dangerous how? Based on what? Actual science, studies that verified/confirmed this or just speculation? Your own blood tests or physical symptoms? Did you take estradiol valerate? Did injections contain a progestogen?

Just a curious enquirer... ;)

Title: Re: Stopping hrt after 20 years?
Post by: Danielle11746 on April 30, 2015, 09:21:08 PM
Kay,

It was the amount I was taking in the injections, along with a very high dose of Premarin daily.  I was taking too much, but it worked.
Title: Re: Stopping hrt after 20 years?
Post by: KayXo on May 01, 2015, 09:27:05 AM
Has there been any verified (studies) association between high dose injectable bio-identical estradiol (if that is what you were taking) and health risks? As far as I know, pregnant women can experience levels as high as 75,000 pg/ml that extremely high doses would still not be able to yield and pregnant women are not dying left and right, their DVT risk stands at 0.05-0.2%.

Premarin is another story because it is not native to the body, is taken orally and has been shown to significantly raise DVT risk, especially at higher doses.
Title: Re: Stopping hrt after 20 years?
Post by: Randi on May 01, 2015, 11:09:37 AM
I think the Women's Health Study, which alleged that HRT was dangerous, would have had very different results if they had used bio-identical estradiol and micronized progesterone.  Premarin (CEE) is not estradiol and MPA is not progesterone.  This study was a setback for people who need HRT.  In essence, I agree with Kay, but also with Mary Poppins who said: "enough is as good as a feast".

--
The intervention phase was a double-blind, placebo-controlled, randomized trial of conjugated equine estrogens (CEE) x.xxx mg daily plus medroxyprogesterone acetate (MPA) x.x mg daily, in 16 608 women aged 50 through 79 years, recruited by 40 centers from 1993 to 1998. The postintervention phase commenced July 8, 2002, and included 15 730 women.
__

Quote from: KayXo on May 01, 2015, 09:27:05 AM
Has there been any verified (studies) association between high dose injectable bio-identical estradiol (if that is what you were taking) and health risks? As far as I know, pregnant women can experience levels as high as 75,000 pg/ml that extremely high doses would still not be able to yield and pregnant women are not dying left and right, their DVT risk stands at 0.05-0.2%.

Premarin is another story because it is not native to the body, is taken orally and has been shown to significantly raise DVT risk, especially at higher doses.
Title: Re: Stopping hrt after 20 years?
Post by: Wynternight on May 01, 2015, 04:14:25 PM
Hmm. My T level was 12 as of last month's bloodwork. Maybe I should consider cutting my spiro dose down some.