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....
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...
Sent from my SM-G870W using Tapatalk
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...
Sent from my SM-G870W using Tapatalk
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!
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.
Sent from my SM-G870W using Tapatalk
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
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 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.
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
good luck
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.
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.
Sent from my SM-G870W using Tapatalk
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?
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.
Sent from my SM-G870W using Tapatalk
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
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.
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?
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.
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....
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)
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 :/
Quote from: KarinMcD on April 13, 2016, 03:39:38 PM
From: http://transascity.org/deep-vein-thrombosis-and-hormone-use/
The increased risk in clotting in transwomen is due to non bio-identical estrogens sometimes combined with progestogens that further increase risk. Bio-identical estradiol is much safer and the risk appears to be negligible when taken non-orally.
Clotting does not appear to be an issue in transmen. Also, this most recent study:
Mayo Clinic Proceedings
Volume 90, Issue 8, August 2015, Pages 1038–1045"To examine the risk of venous thromboembolism (VTE) associated with exposure to testosterone therapy in middle-aged and older men."
"We conducted a case-control study of 30,572 men 40 years and older who were enrolled in one of the nation's largest commercial insurance programs between January 1, 2007, and December 31, 2012. Cases were defined as men who had a primary diagnosis of VTE and received an anticoagulant drug in the 60 days after their diagnoses."
"None of the specific routes of administration examined were associated with an increased risk of VTE (topical [aOR, 0.80; 95% CI, 0.61-10.41], transdermal [aOR, 0.91; 95% CI, 0.38-2.16], and intramuscular [aOR, 1.15; 95% CI, 0.80-1.64])."
"Having filled a prescription for testosterone therapy was not associated with an increased risk of VTE in commercially insured middle-aged and older men."
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.
The FDA warns that testosterone products increase risks of blood clots in cis men. I haven't seen anything about their effects in trans men.
Sent from my SM-G870W using Tapatalk
Quote from: King Phoenix on April 13, 2016, 03:21:18 PM
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....
Those are very inappropriate questions.
Sent from my SM-G870W using Tapatalk
Quote from: King Phoenix on April 13, 2016, 03:21:18 PM
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....
I would drop immediatly that endo and find another one. He is a jerk.
Quote from: arice on April 13, 2016, 09:02:09 PM
The FDA warns that testosterone products increase risks of blood clots in cis men.
Based on what studies, I would be curious to find out.
I'm gonna work on finding references from the major LGBT clinics like Max was saying so I can reveal my endo's misconceptions about DVT. Once I do that and have my hematologist's approval, I don't think anything can stop me from getting on T at that point! But I think my dad is actually aware that I want to transition. He asked me a couple of nights ago if that would make me happy when I told him that a nice house, car and a job would not ultimately make me feel happy and that I know what would. I guess the point I am trying to make is I am still concerned about his possible reaction to all of this since I do live in his house.
Quote from: Lucie on April 14, 2016, 07:21:28 AM
I would drop immediatly that endo and find another one. He is a jerk.
*Sigh* I wish it were
that easy Lucie. I really, really do. It took me since last December to finally see this endo just a few days ago.....
Good luck with the doctors and your dad!
Sent from my SM-G870W using Tapatalk
Quote from: King Phoenix on April 15, 2016, 03:14:14 AM
*Sigh* I wish it were that easy Lucie. I really, really do. It took me since last December to finally see this endo just a few days ago.....
I assume that there is no other endo near where you live.
I am in the same case as you, there are no trans aware endo in my area. Finally I've found a skillful one but she is 500 kms (311 miles) far away from my home.
Anyway, I wish you good luck for your HRT and also with your father.
J Clin Endocrinol Metab. 2003 Dec;88(12):5723-9.
"Testosterone administration to female-to-male transsexuals had an antithrombotic effect."
Quote from: KayXo on April 15, 2016, 10:29:36 AM
J Clin Endocrinol Metab. 2003 Dec;88(12):5723-9.
"Testosterone administration to female-to-male transsexuals had an antithrombotic effect."
Hey hey, look at that :)
Quote from: FTMax on April 15, 2016, 12:49:03 PM
Hey hey, look at that :)
Quote from: KayXo on April 15, 2016, 10:29:36 AM
J Clin Endocrinol Metab. 2003 Dec;88(12):5723-9.
"Testosterone administration to female-to-male transsexuals had an antithrombotic effect."
Oh wow! This is exactly what I need! Thanks for this information! I'm going to print this out right now after I type this, bookmark it on my laptop and show it to my endo. He totally has this mixed up. From what I read out of the link it states the very opposite of what the endo said in regards to the DVTs. That study says "Testosterone administration to female-to-male transsexuals had an
antithrombotic effect."
I thought the things he said was kinda off because even my hemo seemed all for my transitioning with hormones as well as surgery when I came out to him. He even attempted to connect me with one of his older patients who also happens to be a transman. Issue now is that my next appointment with my endo isn't until June 6th. :( I see my hemo on May 9th after he returns from vacation. I am going to call my endo at least once a week for cancelations so I might be able to get in earlier. It worked last time, so maybe it can work this time too! You know what they say, "the squeaky wheel gets the grease!" ;D
Please, please, please feel free to share any more information you may find in regards to testosterone administration and DVT for female-to-male transsexuals. Anyone can PM me that info or email it to phoenixking089@Gmail.com if you want to. Thanks so very much for that, KayXo! :D
J Lab Clin Med. 1993 Oct;122(4):412-20
"Testosterone correlated positively with the major stimulator of fibrinolysis, tissue plasminogen activator activity (r = 0.30; p = 0.02) and correlated inversely with two independent coronary heart disease risk factors, plasminogen activator inhibitor activity, the major fibrinolysis inhibitor (r = -0.33; p = 0.01), and fibrinogen (r = -0.39; p = 0.004)"
Fibrinolysis is a process that prevents blood clots from growing and becoming problematic (from wikipedia).
Just keep in mind that the majority of information you'll see about testosterone replacement therapy is for cisgender men who have low T, which would not be applicable in your situation. Just gather as much relevant to FTM information as you can, and have a good talk about it with your hematologist first. You may not even need to present the endo with all the info if your hematologist can head off the argument.
Quote from: FTMax on April 16, 2016, 09:58:59 AM
Just keep in mind that the majority of information you'll see about testosterone replacement therapy is for cisgender men who have low T, which would not be applicable in your situation.
Why wouldn't it? It should be equally relevant just like the findings in ciswomen on HRT are relevant to transwomen.
Fertil Steril. 2010 Mar 1;93(4):1267-72.
"Activated protein C resistance was detected in 18/251 patients (7.2%), and protein C deficiency was detected in one patient (0.4%). None of the patients developed VTE under cross-sex hormone therapy during a mean of 64.2 +/- 38.0 months. There was no difference in the incidence of thrombophilia comparing MtF and FtM transsexuals (8.0% [13/162] vs. 5.6% [5/89], respectively)."
"Cross-sex hormone therapy is feasible in MtF as well as in FtM patients with aPC resistance."
"In summary, our data indicate that cross-sex hormone therapy in FtM and MtF transsexuals with thrombophilia is safe."
Endocr Pract. 2013 Jul-Aug;19(4):644-50.
None of the 50 transmen developed DVT.
Transl Res. 2011 Oct;158(4):225-34.
6 men taking testosterone developed thrombotic complications. BUT...
"Of these 6 men, 5 were found to have previously undiagnosed factor V Leiden heterozygosity, 1 of whom had ancillary MTHFR C677T homozygosity, and 2 with ancillary MTHFR C677T-A1298C compound heterozygosity. One man had high factor VIII (195%), factor XI (179%), and homocysteine (29.3 umol/L)." So, they were all predisposed.
"Thrombotic events after starting testosterone therapy are associated with familial thrombophilia."
I don't care much for the authors' speculation as the amount of E aromatized from T is so low as to have negligible effect on coagulation, especially if you consider other studies where high doses of bio-identical E taken parenterally were given to men with prostate cancer with no significant impact on coagulation or studies in transsexual or cis- women with thrombophilia where transdermal E was prescribed and surely resulted in higher levels of E with no increase in thrombotic events.
I speculate that had they not been on testosterone, these events would have occurred anyways.
Clin Appl Thromb Hemost. 2014 Jan;20(1):22-30.
"We describe thrombosis, deep venous thrombosis (DVT) pulmonary embolism (PE; n = 9) and hip-knee osteonecrosis (n = 5) that developed after testosterone therapy (median 11 months) in 14 previously healthy patients (13 men and 1 woman; 13 Caucasian and 1 African American), with no antecedent thrombosis and previously undiagnosed thrombophilia-hypofibrinolysis. Of the 14 patients, 3 were found to be factor V Leiden heterozygotes, 3 had high factor VIII, 3 had plasminogen activator inhibitor 1 4G4G homozygosity, 2 had high factor XI, 2 had high homocysteine, 1 had low antithrombin III, 1 had the lupus anticoagulant, 1 had high anticardiolipin antibody Immunoglobulin G, and 1 had no clotting abnormalities."
"The DVT-PE and osteonecrosis after starting testosterone are associated with previously undiagnosed thrombophilia-hypofibrinolysis."
Again, I speculate that had they not taken T, same events would have unfolded. I could be wrong...
On my side I did not find any study concluding that a high level of testosterone might cause by itself thrombotic adverse events (in either cis or trans men and women). Conversely numerous studies have shown an increased risk of thrombotic events when testosterone is low.
Incidentally, reading articles on this subject made me think that lowering testosterone in trans women without raising their œstrogens at a sufficient level might partly explain why some of them have DVT complications in the course of their HRT (the main causes being prescription of non bio-identical œstrogens and genetic thrombophilia). This is especially the case when doctors prescribe A-A only for some time before letting their patient having œstrogen intake...
While I am really, really grateful for all of these useful sources and all, I will say that I think one reason the endo feels worried about me getting DVT are two factors; one, I had a history of DVT from lupus before I began dialysis 5 to 6 years ago, which has now put lupus in remission and two, the FDA states that testosterone therapy can cause DVTs. But I think they're talking about commercialized testosterone for cis men, not men like me.
Still, it's something that obviously bothers my endo, the gatekeeper to my hormones. I think without dialysis, I am predisposed. Not sure I mentioned all this earlier, and sorry if I didn't. But I still want to take a look at the info when I have time and share the most relevant bits that have to do with transmen with the endo and hopefully my hemo can really persuade him, like Max said. All I can do is hope for the best, and prepare for the worst. I'm not going to sit by idle though. Gonna find as much supporting evidence for T as I can so I know the actual risks that do exist versus the misconceptions. Thanks everyone so, so much for your replies. Love ya'll! :D
Lupus (SLE) is an autoimmune disease.
From wikipedia:
"The cause is believed to be an environmental trigger, which results in a misdirected immune response in people who are genetically susceptible."
"Hormonal mechanisms could explain the increased incidence of SLE in females. The onset of SLE could be attributed to the elevated hydroxylation of estrogen and the abnormally decreased levels of androgens in females. In addition, differences in GnRH signalling have also shown to contribute to the onset of SLE. While females are more likely to relapse than males, the intensity of these relapses is the same for both sexes."
"In addition to hormonal mechanisms, specific genetic influences found on the X chromosome may also contribute to the development of SLE. Studies indicate that the X chromosome can determine the levels of sex hormones. A study has shown an association between Klinefelter's syndrome and SLE. XXY males with SLE have an abnormal X-Y translocation resulting the in the partial triplication of the PAR1 gene region."
Klinefelter's syndrome affects genetic males only, however did you have testing done for possible intersex condition ? That certainly should be taken in account for your HRT (and also for the treatment of the lupus, probably).
"The rate of SLE in the United States increased from 1.0 in 1955 to 7.6 in 1974."
Do you know that a lot of autoimmune diseases and more generally modern chronic diseases have been positively associated with the consumption of sugar and refined carbohydrates ?
Phoenix, you are so damned close! Gather your evidence and hang in there.
Quote from: Arch on April 17, 2016, 04:12:56 AM
Phoenix, you are so damned close! Gather your evidence and hang in there.
This!
Sent from my SM-G870W using Tapatalk
Quote from: King Phoenix on April 16, 2016, 07:58:34 PM
the FDA states that testosterone therapy can cause DVTs.
"The risk of venous blood clots is already included in the labeling of testosterone products as
a possible consequence of polycythemia, an abnormal increase in the number of red blood cells that sometimes occurs with testosterone treatment. Because there have been
postmarket reports of venous blood clots unrelated to polycythemia, FDA is requiring a change to drug labeling of all testosterone products to provide a more general warning regarding venous blood clots and to ensure this risk is described consistently in the labeling of all approved testosterone products."
"A possible consequence" is SPECULATION, not proven.
Reports of blood clots in men who took testosterone does not establish causation. It could well be that these men would have had blood clots anyways, even if they had not taken testosterone. How many of these reports are there anyways? I don't know. Take this warning and take the other studies on transmen and cismen. The doctor's decision should be based on the overall evidence and the benefits vs risks to you of taking testosterone.
Also, if testosterone causes DVT, wouldn't cismen would be at greater risk of developing this throughout their lives? Is this actually the case? Are clots more prevalent in cismen?
This matter should be looked at critically and objectively.
QuoteBut I think they're talking about commercialized testosterone for cis men, not men like me.
The only difference I see is age, because cismen are usually older and thus more prone to DVT.
QuoteThanks everyone so, so much for your replies. Love ya'll! :D
Best of luck. :)
Hey King Phoenix,
Thanks for this thread, I was dealing with similar questions. I haven´t had any blood clotting history as of yet, but have a greater risk (family wise), and like you I got the impression that I was about to be possibly denied TRT because of it... it´s too bad that these things are never easy, it seems to be a constant struggle between patient and healthcare provider to see who´s got what information right...
I think I´ll be dedicating a post on my blog about this, seems about time the misconceptions about this got set straight. Anyhow...
As I was at risk, I´ve always avoided anticonceptives, but periods are a complete nightmare for me. So far my GP said that there´s no way to stop the periods without increasing my risk for blood clots, so I´m curious to know what they told you about the IUD placement. Could you tell me a little bit about that?
About the comments your endo made... in my opinion when someone asks invasive questions, it is still your right to refuse to answer, if you don´t see how they are relevant for your treatment. Don´t give up private things too easily ;)
Quote from: November Fox on May 08, 2016, 01:31:27 PM
As I was at risk, I´ve always avoided anticonceptives, but periods are a complete nightmare for me. So far my GP said that there´s no way to stop the periods without increasing my risk for blood clots
There is a contraceptive pill that contains bio-identical estradiol. Bio-identical estradiol, at the doses found in these pills, is very unlikely to cause problems, more so if taken sublingually. Please ask your doctor about this. I will PM you the name of the pill.
Hey everyone.
Just thought I'd mention that if everything goes right, I should see my hematologist tomorrow, I have my fingers crossed, hoping and praying that he will give my endo the ok for T. My therapist even really wants me to be on T.
He wants to show the resources I have found to the endo he knows very well, but I can't see that endo because he doesn't take my insurance. :( But if that endo can put in a good word for me and can prove that there is no such risk as blood clots on T whether being predisposed or not, then I should start HRT here very shortly. I am hoping for the best, and preparing for the worst, you guys!
Good luck tomorrow!
Sent from my SM-G870W using Tapatalk
Thanks, arice. :)
good luck , I know how important it is.
Thank you, Stephanie. ^^
Quote from: Lucie on April 17, 2016, 03:51:31 AM
Lupus (SLE) is an autoimmune disease.
From wikipedia:
"The cause is believed to be an environmental trigger, which results in a misdirected immune response in people who are genetically susceptible."
"Hormonal mechanisms could explain the increased incidence of SLE in females. The onset of SLE could be attributed to the elevated hydroxylation of estrogen and the abnormally decreased levels of androgens in females. In addition, differences in GnRH signalling have also shown to contribute to the onset of SLE. While females are more likely to relapse than males, the intensity of these relapses is the same for both sexes."
"In addition to hormonal mechanisms, specific genetic influences found on the X chromosome may also contribute to the development of SLE. Studies indicate that the X chromosome can determine the levels of sex hormones. A study has shown an association between Klinefelter's syndrome and SLE. XXY males with SLE have an abnormal X-Y translocation resulting the in the partial triplication of the PAR1 gene region."
Klinefelter's syndrome affects genetic males only, however did you have testing done for possible intersex condition ? That certainly should be taken in account for your HRT (and also for the treatment of the lupus, probably).
"The rate of SLE in the United States increased from 1.0 in 1955 to 7.6 in 1974."
Do you know that a lot of autoimmune diseases and more generally modern chronic diseases have been positively associated with the consumption of sugar and refined carbohydrates ?
Hi Lucie.
That's a very interesting bit of information there. Though my professors usually frown upon citations from Wikipedia because anyone, and I mean anyone, can manipulate any of the given information there. I wouldn't take what Wikipedia says with a grain of salt.
But I do want to get tested for a possible intersexed condition. It's funny that it talks about low androgen levels in regards to SLE, because mine's are low. I never heard of Klinefelter's syndrome. I will look that up. Perhaps this may be a connection. Sorry for this noobish question, but what does "translocation" and "triplication" mean? What is the PARA1 gene region? O.o
Oh and I am certain my diet growing up had alot to do with it too....the lupus I mean
Quote from: King Phoenix on May 09, 2016, 01:47:33 AM
Sorry for this noobish question, but what does "translocation" and "triplication" mean?
Hello King Phœnix,
From wikipedia: "In genetics, a chromosome translocation is a chromosome abnormality caused by rearrangement of parts between nonhomologous chromosomes."
(https://upload.wikimedia.org/wikipedia/commons/thumb/c/cb/Translocation-4-20.png/220px-Translocation-4-20.png)
As for "triplication", I guess that it applies to the case where two extra copies of a given chromosome segment are present in individual's genome.
QuoteWhat is the PARA1 gene region?
From wikipedia again: "The pseudoautosomal regions, PAR1, PAR2, and PAR3, are homologous sequences of nucleotides on the X and Y chromosomes."
Broadly speaking, PAR regions are parts of X and Y chromosomes which are similar on both chromosomes.
Good luck for starting your HRT.