Deep Vein Thrombosis.

Everyone on HRT has heard about, and maybe worried about it.
This morning I was certain I was having a heart attack. Living in the boonies, I was not going to wait for an ambulance, and drove myself to the hospital. I got there running on about 10% consciousness.
The doctors decided it wasn't my heart, but knew it was serious. A cat scan later, it was determined I have multiple blood clots in my lungs, having come loose from in my calves.
HRT is pretty darn safe, and the risk of blood clots goes down considerably each year. After 4 years on estrogen, the odds just got the better of me.
I will be on blood thinners all my life, and not 'right' for a long time. Serious stuff.
As my girlfriend said 'You can reduce a risk, but you can't get rid of one'.
At least I'm still this side of the lawn. :)

That's so scary! Thank goodness you were able to make it to the hospital without passing out.

I have a Right Bundle Branch Block (RBBB) in my heart, so that may be a slight risk factor for me for Deep Vein Thrombosis. Paula, do you have any risk factors for DVT?

Thanks Mirya. I'm under care of an endo, and a GP. No risk except starting HRT at 53. The odds are very low after four years, but they are still 'odds'.

I am sorry you went through this Paula but glad you had your head about you. Everything is a risk, but it still sucks if the odds get you.

OMG Paula.....that's terrifying! Thank god you're alright. Keep us in the loop so we all know you're okay. Did you get any kind of warning that may help others in the same sitch?
Anyway, get better soon and praise be the powers of whatever that you're still with us. So scary! Christ,.......... this isn't an easy path.

I am glad too Paula. I hope you get to feeling better soon and put a little distance in this in any case. Take care.

That's scary, Paula. It's a good thing you took immediate action to get help. I think some people would rather die than possibly embarrass themselves.

:) Lallie

Glad to hear that you are still with us!

It may be a pain to be on blood thinners, but at least you get to spend more time with your girlfriend than if you hadn't taken them.

Thanks for the update, take good care of yourself.

oh wow, so glad to hear you've survived. Thank you for the salutary warning. I have some veins going varicose on my left leg, now wondering if they need attention with priority. I hope you have a full recovery and that you can migrate off thinners sometime.

Wow Paula, glad you are "on this side of the lawn" (must remember that one).
:love: :hugs:

Wow. Glad you're OK. DVT is one of those things I'm intellectually aware of (endo mentions it every time I see her) but as I never experienced one nor knew anyone who had, never took to heart, so to speak. I kind of put them in the same category as getting hit by a meteor. They seem a little more real now.

Hi Paula, How do you take your E? Shot, patch or pill?

I'm not too sure if the delivery method is a factor Lisa. It is the oestrogen itself that is the primary factor here. A natal female on HRT has the increased risk (slightly) of developing DVT against her counterparts who do not take HRT.

DVT risks are increased due to a number of factors and as Paula has indicated, HRT is pretty safe, you only need to look at the number of natal females use HRT

Thanks for al the best wishes and comments.
I take estrogen by patch, and had no known risk factors.
Now the interesting part. The ER said he had treated 100's of pulmonary embolisms. I was the first transwoman. He said estrogen may have been a factor, but they are very common in the cis population.
So...did the estrogen cause this, or was I just one of many?

Quote:

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Originally Posted by pamela7

oh wow, so glad to hear you've survived. Thank you for the salutary warning. I have some veins going varicose on my left leg, now wondering if they need attention with priority. I hope you have a full recovery and that you can migrate off thinners sometime.

---

I have pretty severe superficial varicose veins in my left leg, and the vein specialist I consulted with last year said that the superficials seldom develop or lead to DVT.

They're just ugly, although firm hose really help.

so very glad you're ok after that scare. take care of yourself!

Glad to hear you woke up on the right side of the grass. Thoughts and prayers for a speedy recovery. Please keep us updated.

Paula, I'm glad to hear that you are recovering, I'll remember you in my prayers.

Hugs, Bria

Paula, can you continue HRT? I hope so.

:) Lallie

Update-
I'm feeling a little better today, and the awful pain in my chest is finally gone. I'm still winded by the slightest exertion, and always tired. Started meds yesterday- $500 for four weeks worth. A shock, but still a small price to pay considering the admitting M.D. called this a potentially fatal condition.
The ER dr. and I had a good talk about estrogen, and DVT. He did not recommend stopping the estrogen. I'm going to give my endo a call, because I trust him with my life, and we'll see what he has to say.
Thanks y'all for the kind words.

Paula, happy for you that you had the wisdom to go to the ER before it was too late, and you're doing ok now. I've seen what happens when someone didn't take DVT seriously. Best wishes on your recovery.

-N

Paula, you did well with the quick reaction to your symptoms. For those who asked, superficial varicosities have no increased risk for clots. However, even in non-estrogen taking population, deep vein varicosities do increase the incidence. The proper diagnosis is deep vein thrombosis or DVT. Paula, you may benefit from a venous scan using some radiological or ultrasound procedure before continuing on with estrogen regardless of the route it is taken. Beat a path to your endocrinologist door.

Laura MD

Glad you made it and are doing better. I remember one time telling my wife to drive me to the emergency room and then telling her to stop at the fire house so I could go in the ambulance. I figured if I got worse, they had the equipment to help me.

On another occasion, my fingers stopped working right so I had my wife drive me to the emergency clinic. They determined that I had a TIA (mini stroke) and called an ambulance to drive me six blocks to the hospital. They wouldn't let my wife drive me. I take an aspirin a day now.

Take care of yourself and see whatever doctors and take whatever tests you need. We only get one go around so make it count.

Glad to hear you're doing better. Hang tough Girl!

Hugs,
Leah

Update- talked to my endo today. He said the chances of DVT after four years on HRT are infinitesimal. Same as a cis person.
He said my embolisms were extensive, and threatening.
He recommended halting estrogen completely, a thought that did not sit well with me. Then we agreed on 3 months without, then half dosage, and aspirin therapy.
It was not a pleasant conversation, as aside from feminization, it was estrogen that kept me off the ledge. It's a long time later, we'll see how I fare without it.
Either way, it was not a choice I ever wanted to make.

So sorry to hear that Paula. I wish you the best going forwrd. A friend of mine on hormones had a stroke caused by her continual lack of sleep and her hormones. She is off them, which was a great blo3w to her emotionally. However, she is still moving forward and recently had he BA surgery. Keep strong and live long. Life really is worth it all.

That's heartbreaking Paula. I've got nothing to say that just wouldn't sound glib. My heart is with you. Lisa

Paula, I hope and pray that things go well for you in the future.

Paula, I am so sorry. I hope this plan works out so that you return to some level. Being this many years into HRT, I would suspect a lower level would still be beneficial mentally.

Any changes that were going to happen have happened, so the E was mostly for my peace of mind. One week without E and I'm not noticing anything yet, but maybe it slowly drains out. We'll see. Thanks

So your Dr. actually thinks that your incidence and your Estrogen protocol are unrelated? You look very trim in the pictures I've seen of you. I assume you don't smoke and I suspect you exercise or are at least pretty active. This really seems to be out in left field. Have you checked to see what your family history look like for something like this? Very mysterious. I would think after all the time you've been on the E, your body will most probably masculinize pretty darn slowly.... if at all since if I remember right, you're post SRS. I mean, my cis gendered S.O. is in her 60s and the menopause ship has long sailed. There's nothing in any way masculine about her and she uses no HRT and her e levels are probably in the basement. So I would imagine you'll be okay, but what do I know. I just want to say how bummed I am that this should have happened to you.:sad: Especially given your circumstance. You seem strong and smart...I think those are excellent qualities for overcoming adversity. Good luck, Paula. I really am hoping the very best for you.

Sometimes we need to do things that are unpalletable (sp) for the greater good. You may want to consider another route, which are not allowed for discussion here, :D , which some cis females take in place of HRT when going through the 'pause.

Whatever will turn out to be the best option for you, I believe you are strong enough to pull through.

:hugs:

Lisa- not by any means. He's amazed that I had the problems I did after this long on HRT. He wanted me to quit completely, and forever. Not quite sure how you read in the rest.

If you're talking about the SRS...it may have been assumption or mis-remembering or mere conflation for some reason or another. I apologize. Sure hope you dont have to quit 4ever...good luck Sue.

Paula I hope your DVT problem gets resolved. Have not read much on DVT. Looks like most studies have been more recent and older age groups.

I was on HRT for 10 years 7 post SRS, from age 25-35. I never really felt any of the emotional/calming effects people talk about either way. When I quit, didn't feel much or any reversal of effects.

I am looking to get full blood tests, and a consult with an Endocrinologist soon. At age 66, I have plenty of other things to keep checking.

wow , as others have said , glad your ok ! I had chest pains 4 years ago ( 2 years on hormones at that time ) , myself , fortunately it turned out not to be an embolism in my case . But yea , just as you so smartly did, if any of us experience any thing best thing is to not hesitate !

Take good care of yourself, Paula--we need you here.

:) Lallie

Well....I didn't want to necro this thread, but your PM box is full. How are you feeling Paula? Are you healing and dealing with all the BS? I just wanted to touch base and make sure your getting better, physically and spiritually. Take care, Hon. Thinking about you.