Finally, Finally, Finally Saw My Endo Today!

[KayXo]

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."

[arice]

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.

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[arice]

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.   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.

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[Lucie]

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.

[KayXo]

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.

[Tristyn]

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.

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.....

[arice]

Good luck with the doctors and your dad!

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[Lucie]

*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.

[KayXo]

J Clin Endocrinol Metab. 2003 Dec;88(12):5723-9.

"Testosterone administration to female-to-male transsexuals had an antithrombotic effect."

[FTMax]

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

[Tristyn]

Hey hey, look at that

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!"

[Tristyn]

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!

[Lucie]

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).

[FTMax]

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.

[KayXo]

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.

[KayXo]

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...

[Lucie]

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...

[Tristyn]

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!

[Lucie]

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 ?

[Arch]

Phoenix, you are so damned close! Gather your evidence and hang in there.