After almost a year on HRT (Estrogen Teva generic, Spiro - recently stopped, Progesterone - recently started) I have been advised by my cardiologist that there is some significant, but unknown, risk associated with my transition protocol.

So, I have decided to stop HRT and trying to figure out where to go from here.

I am wondering whether I should just STOP the estrogen, taper off, or what? I have asked my doctor, but have not received a reply.

Does anyone have any recent experiences to share?

Worst case you'd just have to taper it down, so why not do that?

I am not a doctor so you really need to have a more detail conversation with you endo and your cardiologist about this. I would suspect if there is a problem with the medication, it would be clotting with the estrogen or the Spiro causing circulation issues. There might be ways to deal with these issues without taking you off HRT but without understanding the problem, all I can provide is guess work. This is one time you will have to know as much as the doctors to make the correct decision so keep asking questions until they run out of answers. When a doctor says "unknown risk", that's not enough for anybody to make a decision with.

Hi Melissa,

  I am in agreement with Dena. "there is some significant, but unknown, risk associated with my transition protocol." Tells you virtually nothing. You doctor may have just read the circular on your HRT meds and decided it was too risky. Such a vague statement as you posted does not indicate much knowledge behind his assessment.
  I would press for details and if he isn't forthcoming with them I'd find another doctor. A good doctor is willing to explain things in details to his patient in order to make sure his patient understands the reasons for his decision. A good doctors doesn't just say "No, because I said so"

  My 2 cents only mind you

Hugs,
   Laurie

This is a bit different, but perhaps interesting.

I actually had a specialist in a non trans related area tell me I should stop estrogen as it was increasing my risk with a serious problem I had. Women have significantly more problems with this than men so I've no doubt it was true. I was doing diy at the time so I didn't stop; I had more difficulty with being trans and wasn't in critical danger just yet. A couple of years later I saw my trans specialist endo and increased my estrogen instead, and that enabled me to make some changes that fixed the other problem.

Quote from: MelissaRC on August 03, 2017, 02:20:51 PMI have been advised by my cardiologist that there is some significant, but unknown, risk associated with my transition protocol.

I would not accept an answer that vague about something as important as my HRT (or my cardiac health, for that matter).  I would want to know what is the "unknown" part.  Is it just the probability of the significant problem occurring that is unknown, or does your doctor not know what the consequences are?  Have they explained to you what the consequences are that they are concerned about?

I would be all over them for answers or best guesses.  And if they are advising you to stop HRT, they should be advising you on how to go about doing that.

To follow on from my last post with something that is relevant. Being trans and not treating properly was extremely stressful and that was making a potentially serious medical issue I had much worse. Stress is very bad for you, and you might find the risk of stopping HRT is greater that that of staying on it. Your cardiologist probably has no idea about that. My specialist didn't.

Quote from: Laurie on August 03, 2017, 05:59:17 PM
Hi Melissa,

  I am in agreement with Dena. "there is some significant, but unknown, risk associated with my transition protocol." Tells you virtually nothing. You doctor may have just read the circular on your HRT meds and decided it was too risky. Such a vague statement as you posted does not indicate much knowledge behind his assessment.

I was trying to summarize a long discussion with my Dr.s and did  not do it very well. The doctor was not "being vague" per se, there is just NO DATA for my case.

-- Estrogen poses some health risks.
-- Higher dosages of estrogen poses higher levels of health risk
-- Older individuals are more likely to have problems than younger.
-- pre-existing cardiac issues will add to the level of risk posed by estrogen
-- grafts from a 20-year old bypass might cause additional problems
-- most trans people are younger and younger people do not tend to have cardiac problems

So, there is no statistically valid sample to draw from.

It is all guesswork at this point.

If i were really gender dysphoric, and not completing transition, would ruin my life {see: Through the Door of Life, Joy Ladin}, then I would probably continue, despite the risks.

But, I am not that badly off. i could stop now, and kinda "fake it" without more body changes, I think.
Why add the risk???

Testesterone has health risks as well. Did he say you risks were specific to your issues or just in general?

Yeah i agree - would totally not accept that answer and get a much more detailed opinion and list of concerns. They have to be able to spell it out for you to make such a change. I'd also be inclined to get a 2nd opinion beyond that.

Quote from: MelissaRC on August 03, 2017, 02:20:51 PM
After almost a year on HRT (Estrogen Teva generic, Spiro - recently stopped, Progesterone - recently started) I have been advised by my cardiologist that there is some significant, but unknown, risk associated with my transition protocol.

So, I have decided to stop HRT and trying to figure out where to go from here.

I am wondering whether I should just STOP the estrogen, taper off, or what? I have asked my doctor, but have not received a reply.

Does anyone have any recent experiences to share?

If you've been on medically supervised HRT, it should never have reached the point where a cardiologist is telling you there is significant risk with the protocol. The fact that it has gotten that far shows that someone on the team of healthcare providers hasn't been doing their job. 

Try this out for size. As a moderator, I see a huge amount of dosage information that I have to edit out of other peoples post. My current HRT is a quarter the highest dosage I have seen a doctor prescribe. On this so call low dosage, my body is developing well beyond what happened under my previous treatment. My levels after 24 hours are in the menopause range. Could things happen faster, sure but a high dosage isn't required to transition if you are willing to wait it out.

Now as for younger people transitioning, most of the people transitioning on this site are older. Possibly because the younger aren't willing to live within the somewhat restrictive environment that we maintain. At the moment, I only know of one member who has had problems with HRT and that was because of other medical conditions. The remain of the members may not be on a full transition dosage but they are safely transitioning.

If you are willing to undergo a conservative transition, you might be able to reach an agreement with your doctors that will result in minimal risk to you.

That are several good points above to ponder:

-- I have been on full medical supervision for about 6 months, and DIY for about 4 months before. If I were in San Francisco, for example, I would have a broad range of medical expertise to choose from. Here in southern CA, Orange County, the choices are more limited; and not so great. NO, not moving to SF ... unaffordable ...

-- I am "tapering off" and spending the first week at X-33% instead of X previously. Then, going to X-66% for another week, then theoretically to X-100%

-- What if I just stayed at X-66% for a while ... The cardiologist would say ... unknown ... but it has to be safer>>??

Tempting.