I am a ftm and I have an importent question regarding hrt.

About an year ago it was discovered that in our family runs a heridetery disease called Factor V Leiden that causes an increased susceptibility for thrombosis. I wouldn't be allowed to use the normal contraceptive pill, for example.

I'm not on hrt yet and it will take some more time anyway until I have this option, but I'm now really afraid I might not be able to use it.
In the list about relative medical contraindications on wikipedia has amonst other things 'bleeding disorders (for injected testosterone)'--does that mean I will be okay as long I don't inject it? Why does this make such a huge difference?

I know that I should probably just talk to a doctor, but that would be difficult right now and I need clarity.
It would be great if somebody could help me with this.

Wow, you are the first FTM I have met with that particular clotting disorder. You are right the testosterone effects factor V in additions to others. That does not mean you can not take it for sure. ONLY an endo should advise on this not even a GP is appropriate. You may need to take medication to help you clot properly, be assessed more often or just avoid injuries as you would now. You may be able to get away with topical DHT or testosterone instead of injection which would not be a good choice. I say DHT because the useful dose is much lower and is more targetted without the risk of conversion that increase clotting problems. Talk to your endocrinologist about this but do not assume it is impossible.

->-bleeped-<-boy

Well, you would think being ftm is difficult enough on its own...

But I'm glad you confirmed my interpretation of the wikipedia article.  It was a real blow as I learned about this and that it could make T impossible for me.

Strangely enough my childhood dentist and his children had this and thats why it caught my eye. I am lucky that none of my many medical problems kept me away from T though a few doctors said it was a bad idea. I ignored them and it turns out that T actually has helped my heart problems and done nothing bad to the other problems. Well except the bloody acne but nothing will save me there. Do you have an endo or hemotologist you can see. Not to speak to anyone elses experience but I would die before I ever give up my T.

->-bleeped-<-boy

Do you actually have Factor V Leiden deficiency?  It's not clear from your post that you do.  Simply because it runs in your family doesn't mean you have it.  You really should go to a doctor, because the injectable T may not even be contraindicated for you in such a case. 
Now, this isn't medical advice, because I don't know enough about testosterone HRT as I'm in the opposite boat, but testosterone doesn't usually increase one's risk of thrombosis.  It does increase your risk for polycythemia, which is basically having too many red blood cells.  Additionally, the bleeding disorder you're worried about is actually in the opposite direction from the Factor V Leiden deficiency-- testosterone can actually cause increased risk of hemorrhage, especially when coupled with anticoagulants.  In other words, testosterone can cause one's blood to not clot as well. 

Factor V Leiden is a hyper-coaguability disorder, meaning that your blood will clot more readily.  Because estrogen tends to increase risk of venous thrombosis, this is why you shouldn't take an estrogen based contraceptive.  It would compound the risk of a blood clot that you may already have. 

I hope this helps you out.  And you really should talk to a doctor. 

Quote from: Jessica L. on April 08, 2008, 10:02:56 PM
Do you actually have Factor V Leiden deficiency?  It's not clear from your post that you do.  Simply because it runs in your family doesn't mean you have it.  You really should go to a doctor, because the injectable T may not even be contraindicated for you in such a case. 

Factor V Leiden is a hyper-coaguability disorder, meaning that your blood will clot more readily.  Because estrogen tends to increase risk of venous thrombosis, this is why you shouldn't take an estrogen based contraceptive.  It would compound the risk of a blood clot that you may already have. 

I hope this helps you out.  And you really should talk to a doctor. 

I asked my mum, I definitely have it--we all got tested about one and a half year ago when it was discovered that it runs in our family.
Before I can get anything, I have to go to a doctor anyway, but I'm thankful for your information. It would probably only be an issue if I were mtf, hm? 
I'm glad you made things clear because when I first learned about it I was so upset that I didn't realized testosterone would actually do the opposite of what I feared (and it surely didn't help that all the scientific medical articles I came across were in English which is not my mother tongue...)

There are anti-clotting agents (werfarin, not sure of the name :-), that
allow to use E and HRT even with this problem.

Not sure if its applicable to those who need T, but I don't see why not.
Talk to your endo about it.

Quote from: Elincubus on April 20, 2008, 03:01:42 PM

I asked my mum, I definitely have it--we all got tested about one and a half year ago when it was discovered that it runs in our family.
Before I can get anything, I have to go to a doctor anyway, but I'm thankful for your information. It would probably only be an issue if I were mtf, hm? 
I'm glad you made things clear because when I first learned about it I was so upset that I didn't realized testosterone would actually do the opposite of what I feared (and it surely didn't help that all the scientific medical articles I came across were in English which is not my mother tongue...)

Yes.  You shouldn't really have any problems since you won't be needing to go on estrogen.  Unless of course you wind up needing birth control pills.  I think you said something about contraceptive pills in your original post. 
Of course, nothing I'm posting is actually intended to be medical advice.  Since you'll be needing to see a doctor anyway, I'm sure they'll be taking your Factor V deficiency into account when prescribing anything. 
And of course, I'm glad to help. 

Quote from: Keira on April 20, 2008, 03:12:03 PM

There are anti-clotting agents (werfarin, not sure of the name :-), that
allow to use E and HRT even with this problem.

Not sure if its applicable to those who need T, but I don't see why not.
Talk to your endo about it.

Most FTMs shouldn't need anything like warfarin because testosterone is a natural anti-clotting agent.  This is why injectable testosterone is contraindicated for people predisposed to hemorrhage. 
MTFs may need anti-clotting agents because estrogen acts opposite testosterone; it helps blood clot more easily. 
Of course, people should always talk to their doctors.  There may be other issues that need to be taken into account that we're not addressing here. 

I have Factor V Leiden and am seeking T. My PCP is consulting with my hemotologist as well as an experienced endo.
When I hear back, I'll post here for others what the deal is.
PCP suspects I'll have to go on a blood thinner such as warfarin since I have had a pulmonary embolism (this was while I was on a high does of estrogen for sharkweek trouble).

Quote from: MacG on September 11, 2014, 01:47:39 PM
I have Factor V Leiden and am seeking T. My PCP is consulting with my hemotologist as well as an experienced endo.
When I hear back, I'll post here for others what the deal is.
PCP suspects I'll have to go on a blood thinner such as warfarin since I have had a pulmonary embolism (this was while I was on a high does of estrogen for sharkweek trouble).

Birth control pills? Premarin? Ethinyl Estradiol?

Are you asking what estrogen I was on? I don't remember. Just that it was a super high dose of one of the birth controls. High doses of estrogen increases the risk for a blood clot.

Birth control pills contain an estrogen (ethinyl estradiol) that affects clotting to a far greater degree than the estrogen transwomen typically take, bio-identical estrogen. Also these pills often contain progestins which also affect clotting in contrast to what is usually taken by transwomen, bio-identical progesterone. Apples and oranges. To state that high dose estrogen increases such risks without distinguishing between the different forms of estrogen is incorrect, in my opinion. Studies have shown, for instance, that ethinyl estradiol affects clotting 500-2000 x stronger than bio-identical estradiol. Pretty huge difference!

Surprising that they let you take birth control pills given you have Factor V Leiden. Did they even know or test you?

Sorry, I was told it was the high does of estrogen, and that wasn't made clear to me it was a specific type. Nobody knew I had factor v Leiden before being prescribed BC. They found out with testing while I was in the hospital being treated for the PE.
Since then, much of my family has been tested and had discovered several of us have it.

Update...

Background: I have factor v leiden, a common blood disorder that can raise the risk for blood clots. And I've had one pulmonary embolism at a time when I was on a high dose of estrogen (and was also about 100lbs overweight).

My hemotologist said there may be some risk of being on T with factor v leiden. He said there's not enough data, but that if there were a huge risk, we would be hearing more stories anecdotally.
He also suggested I take baby aspirin daily. I can't take NSAIDS, so I'm going to check into alternatives and ask him about that. I do not need to start a blood thinner such as warfarin.

In the end, my hemo said it was up to me whether taking testosterone was worth the unkown, but likely very small added risk.
My endo just wanted to consult with the hemo regarding factor v leiden. She otherwise wanted me to lower my slightly out of range cholesterol numbers.

I will be stating T after I'm healed from top surgery, so probably in March. (yes!!!)

I just came across this thread, which caught my eye-- I am sitting here waiting for my PCR test for Factor V Leiden to come back before I can start estradiol. My father has it, but I haven't been tested. My endo would prefer to put me on pills, but if I have the Factor, then she'll go with patches instead. I'm really, really hoping to come back negative......

hey
I'm mtf from brussels and i got the factor V leiden heterozygote, im 33.
Im glad to find this toppic, long time i was searching some trans people with leiden.

I started eastradiol in pills 5 months ago, the doc give it to me with some aspirine . Now i take eastradiol plus the aspirine each day.
I saw lots of docs, no one knows nothing about trans and leiden so im like a cobaye for them

Im scared cause i really wanna gender change, and maybe surergy
what happend if i have thrombosis after genital surergy?
do i have to stop the hormones?

Is anyone here having leiden and taking high dose of eastradiol for years?




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