Susan's Place Transgender Resources

I am struggling to find good, evidence based, health care advice for maintaining my female body and mind as I reach 56 years old and 26 years post op..  I am hoping this thread will be a place to discuss HRT and other post surgery health issues.  Please don't discuss exact dosages, but out of the need for this data, I hope the admins will allow some discussions of HRT for the long haul.

To begin, I opened up to my MD about being MtF trans and talked about having some sort of HRT along lines of a post menopausal woman's need to do the same.  I had a full blood work-up and saw my estrodial was 5, my t was 2.5 and my progesterone was .20.  I had been feeling a hardening of my body and mind over the past 20 years or so that I was off any HRT and recently discovered information that suggested post op MtF were in danger of osteoporosis if they go off their estrogen after surgery.

My Dr. wants to get BMD and is dragging his feet prescribing any hormone replacement at all.  He is understandably out of his depth and it seems the area has lost it's trans friendly medical community so he has little to draw on for expertise.

My initial question would be whether you post op women getting up there in age are taking estradiol or ? and are you using progesterone at all with that? 

I am also wondering what other post op regimes did you follow?  How did they help?  Did any of you go off E completely post op?  Any complications?  There are many more ? as well I am sure.

My goal here is to focus on post op health and especially HRT and to amass some information that may be able to help in the future.

Any non-op info is also welcome but may be confusing, perhaps another thread would be a better way to keep things clear between post op or non-op.

I'm actually shocked that anyone would recommend you go off E completely after surgery (though it WAS a long time ago, I guess). These days the awareness of osteoporosis and other unpleasant effects of menopause is much higher, and the recommendation is for even cis women to consider some form of HRT for some time. Cis women put into surgical menopause too young - which is in effect what happens with us as well - are very strongly told to consider HRT at least until they hit menopausal age and possibly beyond. In other words, most GPs would at least bring up the idea of some estrogen for you even if you did *not* mention the trans aspect.

My doctor suggested I stay on my original pre-op dose and see what happened, since that dose was already within the range of what's prescribed at menopause to cis women. It seems to be working well (I'm almost 2 years post-op) so we're leaving it alone for now. I'm still debating whether I'd like to taper off and experience "real" menopause when I'm an appropriate age, but I have a couple decades left to think about it. My endo also says basically what I did above, that post-op and most importantly once the primary phase of "puberty"/feminization is over, my needs are more or less the same as those of a cis woman my age who'd had a full hysterectomy.

I may be younger than you are, but I'm around the age you were when you had GRS, so my current doctors' thinking on the subject might still be enlightening.

(I don't personally believe progesterone has any benefit that outweighs the risks, but I'm not interested in arguing with people about it - that's my own choice for my body.)

Good stuff, Jenna!  I agree - we did things a bit different back then.  For example, dialation was 24x7 and after a year, no more was needed... not!  I'm restarting dilatation and it still sucks just like it did back then.

I'm the one who went off E, my docs all left town and I smoked at the time so felt the newly released stats on breast cancer on a estrogen (HRT or Birth Control) were scary.  I also couldn't really afford it.  Now I am kicking myself but who knew?

I wasn't sure about progesterone, part of me wonders if I can gain any breast fullness from it, as well as nipple development, but it also has higher risk.

Anyway, thanks!

another question... how about anti-androgens?  I never had them initially, and I've read they can continue to decrease male attributes even after surgery.  I'm strongly muscled in some regards, and would love to drop some of the bulky muscle mass if that would work.

Which ones if so?

Wow, I can't imagine giving up dilation, either! I'm only supposed to do it for 15 minutes once a week for the rest of my life, but they VERY strongly tell us not to quit, now.

The most recent studies on menopausal HRT (I have access to medical databases and some training interpreting the results, if that matters) suggest that the biggest risk without progesterone included is uterine cancer, which obviously is not a problem for us or for post-hysterectomy cis women. Progesterone  is added to mitigate that risk, and that - specifically, non-bio-identical progesterone - is what raises the breast cancer risk.  the studies on HRT which had the scary results were all using E plus artificial progestins. I honestly have no idea whether progesterone would help breast development in someone who's so long post-op in any case... Anyway, the current recommendation is simply that someone (cis or trans) who is over 40 or a smoker should consider one of the safer and easier on the liver methods of HRT - patch, sublingual pills, implants, or injection. I'm on a patch, personally; Vivelle Dot, which is really tiny and designed to be changed twice a week.

I also didn't take AAs before surgery, and now my endo strongly recommends against it, since our T levels are roughly comparable to those of cis women and everyone needs *some* T in their bodies for certain functions like energy and libido.

More Gems, thanks!

It is a grab bag of conflicting info on the web, even the abstracts of the medical papers I can see are full of low confidence recommendations.  We need more information!

Has anyone had osteoporosis issues post op?  I'm not sure what my BMD test will show, since it is my first, but some time ago I had an x-ray and the specialist said my bones looked good then, but he was comparing to normal female bone mass which is generally lower, so my bones may just look better because they started out bigger. 

I also take calcium daily, which I hope helps down the road.

Dont where your from but in the uk we go back on a half dose after then blood test done at 3mths to check and adjustments made.

julie

Thanks Julie!  That is something I've read about, too. 


Has anyone done HRT at pre-op levels after SRS?  What did you notice, if anything?

(Well, like I said, I'm on my original pre-op dose. In fact, my dose has never changed from the first day I started HRT. But as I'm unusual in being very responsive to E and needing only a very very low dose and no AAs, I may not be what you have in mind.)

Jenna, that is good information, one size does not fit all, so in the future girls will know to ask about moving dosages up, down or stay the same.  My doc didn't change my premarin dosage either, but he was a bit inept, I think.   I had pharmacists yell at me for taking too much and refusing to fill my Rx without talking to my doctor.  Literally yell! :)  At least it was because he worried about my health as a woman.  If He'd known I was trans, he may have exploded!

My E (patch) is the same script as always been pre-op. I had a very low T number so nothing on that part was effected post.

Everyone is there own. I do take calcium supplements. My doctor is more worried about my bad good cholesterol level. That is another thing effected by killing our T levels.

True after GCS needs now a health protocol.  There are more and more coming out and getting there life's back with GCS.

Isabell

At 66 years old and 15 months post, I am still on my pre-op dose of E which was half of what my surgeon recommends as the max for her patients.  Likewise my Spiro dose is the same, but mine was prescribed primarily for its "on label" use as a diuretic for hypertension and not Anti-T.  My Endo says as long as I stay in a certain range of blood count, and no liver issues (which I earned but did not get from alcohol abuse) come up, she sees no reason to chop it off and let me be fully natural.  I will fight for that E though!!  I do get bone density check ups on a two year basis (at least for the next two years) and will get mammograms as well.  (one last year did put our nerves on edge, but turned out to be benign tissue.)  I have a gynecologist who I can use if necessary and who cleared up a vaginal yeast infection for me when I was 3 weeks post.  For me, dilation is "recommended" to be 24/7*1 for the next 25 years or more if I live that long, which I darn well might since my post op health is better than my pre op and pre HRT ever was. 

Quote from: Vicky on May 11, 2014, 07:31:47 PM
At 66 years old and 15 months post, I am still on my pre-op dose of E which was half of what my surgeon recommends as the max for her patients.  Likewise my Spiro dose is the same, but mine was prescribed primarily for its "on label" use as a diuretic for hypertension and not Anti-T.  My Endo says as long as I stay in a certain range of blood count, and no liver issues (which I earned but did not get from alcohol abuse) come up, she sees no reason to chop it off and let me be fully natural.  I will fight for that E though!!  I do get bone density check ups on a two year basis (at least for the next two years) and will get mammograms as well.  (one last year did put our nerves on edge, but turned out to be benign tissue.)  I have a gynecologist who I can use if necessary and who cleared up a vaginal yeast infection for me when I was 3 weeks post.  For me, dilation is "recommended" to be 24/7*1 for the next 25 years or more if I live that long, which I darn well might since my post op health is better than my pre op and pre HRT ever was.

So that is once per day for life?  I would be better with that than having the stent in around the clock for a year. 

As far as E and AA, that seems like a good approach, if it ain't broke... I am still trying to get a sense of what my GP is going to recommend.  I went in for blood levels, it came back low low low, and he didn't prescribe anything (yet) or ask me to come back in.  I have a call in today, we'll see if he calls me myself or if he has is assistant do it (who doesn't know I'm trans).  I can only imagine how that call will go.

Wow, so you actually did wear the dilator CONSTANTLY? Yikes! I don't know of any current surgeon that does that.

I'd prefer my once a week forever to a year like that, too. :)

Quote from: Jenna Marie on May 12, 2014, 10:31:01 AM
Wow, so you actually did wear the dilator CONSTANTLY? Yikes! I don't know of any current surgeon that does that.

I'd prefer my once a week forever to a year like that, too. :)

yes, all day and night.  It did work but that is about all I can say about it :)  (Dilator = large syringe casing)   Primitive times.

here is a link to a good study at http://press.endocrine.org/doi/ref/10.1210/jc.2009-0345 there is full access and a .pdf if anyone needs to dl it.

Good heavens. I mean, I had a condom filled with gauze in 24/7 for the first few days... I can barely imagine living like that for a year.

(My dilators : http://www.soulsourceenterprises.com/html/products_grs.html )

Quote from: Jenna Marie on May 12, 2014, 12:04:16 PM
Good heavens. I mean, I had a condom filled with gauze in 24/7 for the first few days... I can barely imagine living like that for a year.

(My dilators : http://www.soulsourceenterprises.com/html/products_grs.html )

yeah those dilators look good - hard to wear under a skirt, but then you girls don't need to do that 24/7 ;)

Nope! 15 minutes of lying down holding it in place, and I'm done for the week. :)

This article looks interesting and is at least within the past 3 years in terms of currency.  http://www.ncbi.nlm.nih.gov/pubmed/22906135

I can't see the full text, if anyone can, please share what it says!  This sort of information needs to be out there for everyone, especially when their MDs are not abreast of the issues aging TS people face.

At 47 years old and 10 years post-op, here's how it's been for me. I have tweaked my HRT regimen myself over the years and have been on the same routine now for about 6 years. I get routine blood work done and the results always come back good. I take 3 different estrogens: Estrofem (Oestradiol), Premarin (Oestrogen), and Progynova (Estradiol Valerate). I take spironolactone daily, along with one of the other three pills, rotating them day-to-day. I find this regimen works very nicely because it provides the main estrogen components found in natal females and it is a very low dose regimen which is better for the liver and body in general. I take my pills at night, before bed, which works best for me. I found that I felt odd when I took them in the morning. When I first started HRT I was getting liquid injections in my butt. Those made me feel great about 1/2 hr later!

I stopped dilating for a few years, then started up again. Which makes me think of a question I had, which I'll post in a separate post. But suffice to say, things didn't change much in there, and dilating is about the same as it was previously.

Edited for dosages.