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Finally, Finally, Finally Saw My Endo Today!

Started by Tristyn, April 11, 2016, 03:16:15 PM

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Tristyn

I finally, finally, finally saw my endo today for the very first time. As I waited anxiously for the doctor to enter my room, negative thoughts began to wreak havoc within me about things like my health conditions keeping me from receiving treatment. And lay and behold, one of them is quite troubling to my endo; my history of DVTs or blood clots. Hormones can increase the risk for blood clots. Even though he honestly thinks it unlikely for me to even be on hormones, he wants a second opinion from my hematologist who is all for my transitioning from female to male.

Once I have more blood tests done and see my hemo, it's a possibility I may start HRT depending on what my hemo says and what the blood test results yield. I am hoping for the best, yet preparing for the worst. One really good thing is that my endo thinks I am a great candidate for surgery at least to do a mastectomy and hysterectomy or IUD placement to stop periods. Thank God I know I can do that for certain, especially if I cannot do hormones. I'm trying to be positive....
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arice

Quote from: King Phoenix on April 11, 2016, 03:16:15 PM
I finally, finally, finally saw my endo today for the very first time. As I waited anxiously for the doctor to enter my room, negative thoughts began to wreak havoc within me about things like my health conditions keeping me from receiving treatment. And lay and behold, one of them is quite troubling to my endo; my history of DVTs or blood clots. Hormones can increase the risk for blood clots. Even though he honestly thinks it unlikely for me to even be on hormones, he wants a second opinion from my hematologist who is all for my transitioning from female to male.

Once I have more blood tests done and see my hemo, it's a possibility I may start HRT depending on what my hemo says and what the blood test results yield. I am hoping for the best, yet preparing for the worst. One really good thing is that my endo thinks I am a great candidate for surgery at least to do a mastectomy and hysterectomy or IUD placement to stop periods. Thank God I know I can do that for certain, especially if I cannot do hormones. I'm trying to be positive....
Good luck!
I am curious to hear what they tell you. I had a pulmonary embolism 4 years ago while pregnant and was told by my internist at that time that I needed to avoid all hormone treatments (including birth control and supplements) and to avoid all "unnecessary" surgeries... I haven't asked about top surgery (what I desperately want) or T (less essential for me) because I think getting turned down would depress me more than not knowing...

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Tristyn

Quote from: arice on April 11, 2016, 03:27:14 PM
Good luck!
I am curious to hear what they tell you. I had a pulmonary embolism 4 years ago while pregnant and was told by my internist at that time that I needed to avoid all hormone treatments (including birth control and supplements) and to avoid all "unnecessary" surgeries... I haven't asked about top surgery (what I desperately want) or T (less essential for me) because I think getting turned down would depress me more than not knowing...

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Thank you, Arice.

Yeah, my endo told me to look out for those things also. I do think about taking birth control pills because I really don't ever want to get pregnant and I want the periods to cease. Funny thing is I take supplements and don't have any problems with those. I hope that if you and I cannot do hormones we can at least get surgery. Yes, I had a pulmonary embolism also.

My DVT became just that. Not saying that I am glad for your suffering, but I am glad I am not alone in having serious health conditions that can prevent us from HRT. I'm sorry you have to deal with this also. I was worried from the start that this would be an issue. Arice, we gotta be strong and just tolerate whatever news we get about whether or not we can do HRT. We are transgender! We are strong!
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arice

I also admit to being glad I'm not alone. I long ago came to the conclusion that I am who I am no matter what sex my body is. I am generally ok with being a "guy who happens to be female"... but I do wish my outer form better matched my inner self and that I was seen and treated as a guy. My dysphoria is primarily social although I have wanted top surgery since my breasts grew.

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Jacqueline

Great to see some possible positive stuff for you.

Good luck. Many of us are thinking, hoping and/or praying for good news.

With warmth,

Joanna
1st Therapy: February 2015
First Endo visit & HRT StartJanuary 29, 2016
Jacqueline from Joanna July 18, 2017
Full Time June 1, 2018





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KyleEdric

So glad you had some good news! The hormone area is dodgy, but if he says you're good for mastectomy that's pretty great :)
"I know your soul is not tainted, even though you've been told so."~Ghost 'Cirice'

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Christinetobe

I am anxiously awaiting my first appointment with my endo on may 3rd.  I am praying things go the way i want.  My biggest issue is my age of 45.  It is nice to see someone remaining positive.  I am sending you thoughts and virtual hugs that the hematologist will give the ok.  Good luck and you are never alone with any of this.
As Brett Michaels said Every Night Has its Dawn :)
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SofiN

Good luck Phoenix! I'm glad you are finally on the road to good things, you deserve it after all you went through.

Hopefully you will get the green light, I'll cross my fingers and toes for you :D
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stephaniec

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KayXo

Quote from: arice on April 11, 2016, 03:27:14 PM
I had a pulmonary embolism 4 years ago while pregnant

How far into pregnancy were you? Did this happen at the moment of childbirth or just after? Were you genetically predisposed, have a certain medical condition or had previous injuries making you more susceptible? Did you happen to also have gestational diabetes, suffer from hypertension? How old were you, if not too indiscreet (otherwise, skip)?

Just curious. Thanks. :)

Quote from: King Phoenix on April 11, 2016, 03:43:56 PM
Yes, I had a pulmonary embolism also.

Were you also pregnant at the time? Or taking birth control pills?

QuoteI am glad I am not alone in having serious health conditions that can prevent us from HRT.

I thought testosterone did not raise risks. Could it depend on route of administration and form of testosterone? Doesn't mean estrogen can potentially affect coagulation that T necessarily does.
I am not a medical doctor, nor a scientist - opinions expressed by me on the subject of HRT are merely based on my own review of some of the scientific literature over the last decade or so, on anecdotal evidence from women in various discussion forums that I have come across, and my personal experience

On HRT since early 2004
Post-op since late 2005
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arice

Quote from: KayXo on April 12, 2016, 11:54:30 AM
How far into pregnancy were you? Did this happen at the moment of childbirth or just after? Were you genetically predisposed, have a certain medical condition or had previous injuries making you more susceptible? Did you happen to also have gestational diabetes, suffer from hypertension? How old were you, if not too indiscreet (otherwise, skip)?

Just curious. Thanks. :)
I was 30 weeks pregnant. I was not predisposed to clots nor did I have any other pregnancy complications. I was 33 and it was my second pregnancy and the first was free of complications. Being pregnant was truly the only thing I ever liked about having a female body... and I did it well until the moment my body tried to kill me.

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KayXo

Quote from: arice on April 12, 2016, 11:58:53 AM
I was 30 weeks pregnant. I was not predisposed to clots

Thanks for quick reply :). Much appreciated.

Did you get checked for Factor V Leiden, prothrombin gene mutation or antiphospholipid syndrome? Or hemoglobinopathy? Did you smoke? Take birth control pills before and if so, how long before pregnancy?
I am not a medical doctor, nor a scientist - opinions expressed by me on the subject of HRT are merely based on my own review of some of the scientific literature over the last decade or so, on anecdotal evidence from women in various discussion forums that I have come across, and my personal experience

On HRT since early 2004
Post-op since late 2005
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arice

Quote from: KayXo on April 12, 2016, 12:02:23 PM
Thanks for quick reply :). Much appreciated.

Did you get checked for Factor V Leiden, prothrombin gene mutation or antiphospholipid syndrome? Or hemoglobinopathy? Did you smoke? Take birth control pills before and if so, how long before pregnancy?
I was checked for all of the disorders. I have never smoked and took depo for 7 years but had stopped 4 years prior to the clot.

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Jacqueline

We seem to be moving away from the good news that King Phoenix contributed. Would you like this split off on a separate thread or continue this on PM?

Just a reminder that TOS 15 includes:

Quote15. Items under discussion shall be confined to the subject matter at hand.

Once again, King Phoenix congrats.

Joanna
1st Therapy: February 2015
First Endo visit & HRT StartJanuary 29, 2016
Jacqueline from Joanna July 18, 2017
Full Time June 1, 2018





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Tristyn

Thanks for the replies and support everyone. I really do appreciate them.


Quote from: KayXo
Were you also pregnant at the time? Or taking birth control pills?

I thought testosterone did not raise risks. Could it depend on route of administration and form of testosterone? Doesn't mean estrogen can potentially affect coagulation that T necessarily does.

Oh goodness, no. I've never been pregnant before. More power to Arice and every other transman out there who has nursed a child but I am scared to death of myself going through that. I don't hate kids and I think child birth is so beautiful in women who like that sort of thing. But it's just not for me. That's why I think about birth control. I'm super scared of getting pregnant.

Also. I think testosterone does have risks. I never heard of T not having any risks. But you do bring up a valid point. Maybe it depends on how the T is administered. I wish I would have said more, but I was so flabbergasted by the doc's response, half disappointed and half excited, that I did not think to ask such a question. You sound really scientific. :D Do you work in the medical field? I recognize some of the terms you used because I am studying to become a medical office administrator.
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KayXo

I'm quite familiar with hormone replacement therapy but I do not work in the medical field, no. I just read many studies so have somewhat picked up the jargon over the years.

Estrogen, especially oral and those non bio-identical forms have especially been associated with a significant risk of DVT and PE. But, there is a reason estradiol triggers clotting. After a woman (or a mammal) gives birth, there is hemorrhage (afterbirth bleeding), so that naturally, the woman would eat the placenta which contains an abundant amount of estrogen. This estrogen when swallowed/taken orally will trigger clotting factors and lead to a hypercoagulable state, whereby hemorrhage will be countered. I see no evolutionary reason for T affecting coagulation.

Did you get an embolism after taking birth control pills?

I am not a medical doctor, nor a scientist - opinions expressed by me on the subject of HRT are merely based on my own review of some of the scientific literature over the last decade or so, on anecdotal evidence from women in various discussion forums that I have come across, and my personal experience

On HRT since early 2004
Post-op since late 2005
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FTMax

Congrats on the appointment! Consider talking to your hematologist and seeing what his opinion is in advance of your next appointment if you can. I just know if it were me, I'd like to know what I'm walking into potentially.

It's good that he thinks you're a good candidate for surgery though! Have you spoken to your therapist about writing those referrals?

The risk with T is an increased red blood cell count and a suppression of blood clotting. That's the reason most guys are asked to stop hormones during surgeries - it creates an increased bleeding risk. Like Kayxo mentioned, DVT and clots are usually associated with estrogen use. The endo may have had his information backwards.
T: 12/5/2014 | Top: 4/21/2015 | Hysto: 2/6/2016 | Meta: 3/21/2017

I don't come here anymore, so if you need to get in touch send an email: maxdoeswork AT protonmail.com
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Tristyn

Quote from: FTMax on April 13, 2016, 10:36:34 AM
Congrats on the appointment! Consider talking to your hematologist and seeing what his opinion is in advance of your next appointment if you can. I just know if it were me, I'd like to know what I'm walking into potentially.

It's good that he thinks you're a good candidate for surgery though! Have you spoken to your therapist about writing those referrals?

The risk with T is an increased red blood cell count and a suppression of blood clotting. That's the reason most guys are asked to stop hormones during surgeries - it creates an increased bleeding risk. Like Kayxo mentioned, DVT and clots are usually associated with estrogen use. The endo may have had his information backwards.

S'up Max. Yeah I'm totally stoked about this. I've waited for this to come for so long. Yeah, I am scheduled to see my hemo on May 9th. Unfortunately he is on vacation and that will be his earliest availability. I won't be able to see the endo again until June 6th. Yeah, I know. What a huge bummer. I am going to call once a week to check for cancellations so I can get in earlier, if possible.

Good idea, Max, about asking my therapist for surgery referrals. I did not think I would ever get this far and never bothered to ask him yet. I have an appointment with my therapist this Friday, so I will definitely ask him then.

So, let me see if I am understanding you correctly. T does not cause DVT but estrogen does? I'm way confused. The way the endo made it look, he said T and estrogen can cause DVTs. How can I prove to him that he was mistaken and that T really does not have such a risk? I wish I would have known that before my appointment. I would have said something. Glad I know now! And also, the only time T is risky would be during surgery because of excessive increase in red blood cell count (hemoglobin, I think) and lack of blood clotting? Yeah, I think my endo is all mixed up. ;D  Regardless, I'm am so, so, so excited!

In addition to this, I will say that one thing that kinda pissed me off about the endo was how he asked me very very very personal questions about my sexuality that has very little if anything to do with gender identity and gender expression. He asked about the type of partners I had; male or female. He asked if I ever had a girlfriend or sexual experiences with girls. Very invading questions that are not even related to being trans. I don't like how the medical community has to ask these very simplistic and invasive questions to determine whether we really are what we say and know we are. I think homosexual trans people probably have a much harder time getting on hormones because of this one-minded way of thinking. Just thought I'd throw that out there. He also really upset me when he minimized the power of T, as if not much would come out of using it and trying to talk me out of it because of this supposed risk of DVTs that obviously does not exist. Kinda weird....
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KarynMcD

From: http://transascity.org/deep-vein-thrombosis-and-hormone-use/

QuoteWhat About Transmen?

DVT is an uncommon side effect of hormone treatment in transmen. In the Ott study (see above) transmen were found to develop DVT, but at a rate lower than that of transwomen. In the Leinung study (see above) none of the 50 transmen who were studied developed DVT. In fact, one 2003 study found that testosterone acted as an anti-clotting agent, providing some protection against DVT. (Toorians) One study of cisgender men found that testosterone therapy encouraged blood clots from both patch and intramuscular delivery, although in that study an inherited tendency was thought to be behind the occurrences. (Glueck 2011) In some cases testosterone from HT can also be aromatized (transformed) into estrogens, which can then lead to DVT. (Glueck 2013)
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FTMax

AFAIK, there is no correlation with T use in transmen and DVT. Not in anything that I've read. What I would do is email one of the larger LGBTQ clinics that provide HRT (Whitman Walker, Callen Lorde, Mazzoni, etc.) and see if they could foward you a FTM HRT information sheet to provide to your endo. I don't have mine anymore, but it listed out all the potential risks, effects, benefits, etc. on there. Literally anything that could possibly happen to you was covered, so it would be a good reference sheet for him to have.

T can cause elevated RBC anytime. What most guys do if theirs is high is donate blood. That'll drop it down. But yes to the increased bleeding risk with surgeries, especially long ones. Some surgeons doing top surgery don't care because it's a relatively quick procedure. Same with the hysterectomy. Some do care though, and would want you to stop. I *believe* all the major surgeons doing bottom surgeries in the US want you to stop prior to that, because those are typically much longer procedures. Top surgeries are usually 2-3 hours, where bottom surgery can be 6+ hours without complications during the procedure.

Looking at what KarinMcD just posted, it looks like T may help your case, especially if you're near your ideal body weight or otherwise have low body fat. T is converted to estrogen in fat cells, so if you're relatively fit or getting there, it seems like T would actually be a good thing for you in terms of minimizing DVT risk.

It does sound to me like he's got it backwards, so go get some info from a reputable source and bring it to him at your next appointment. Just say "I remember we had discussed this last time and you said ABC, but all the information I received from other HRT providers says it's really XYZ. Could you clarify for me? I just want to be sure we're all on the same page." If you can have that available before you see your hematologist, that's even better. Get him on the same page and it will be harder for your endo to refute.

My provider also asked about my sexual history. I didn't take any offense to it, and she made a point to mention that that particular line of questioning wasn't any kind of judgment of me or my fitness for hormones, it was just to get a more well rounded view of me as a patient and to help me make the best possible decisions regarding my care. And it really did help at least in my case, because my doctor is a primary care provider for trans people. She's pretty well versed in what is and isn't available and what the pros/cons are to various procedures, and because she knows sexuality-wise what I'm into and not into, she's better able to give advice that's relevant to me. Since yours is just an endo, it makes less sense for him to need to know that, but I'm not really surprised that he asked, especially if he's older. My doctor remarked early on that I was "easy" and likely could've gotten HRT from most providers, because I'm binary and I prefer women. Some providers are still apparently stuck in the dark ages and can't fathom why you'd want to transition if you're gay :/
T: 12/5/2014 | Top: 4/21/2015 | Hysto: 2/6/2016 | Meta: 3/21/2017

I don't come here anymore, so if you need to get in touch send an email: maxdoeswork AT protonmail.com
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