We all get excited bout the prospect of transitioning and how our bodies will change under the influence of estrogen and progesterone. Here at Susan's it is forbidden to discuss hormone regimen's and specifics and we are encouraged to seek proper counseling and medical advice rather than attempting to self medicate. So for the sake of everyone here I will be transparent as possible so that none of you make the same stupid mistakes I have which may kill me.

I had been under medical supervision for years and took the recommended doses but became disillusioned at my development. I departed from using good sense and began my own program. I ignored current wisdom about how dangerous Ethinyl Estrodiol is in terms of unwanted clotting and most especially for an older person, as it is never prescribed. I had been using a certain brand known as Lynoral with rather stellar feminizing effects, although after having consumed some 400 doses over time I was beginning to get nervous as I realized that my knee replacement surgery and my age were definitely working against me and the possibility of developing a clot was only a matter of time. So I recently bought Some Progynova which is considered much safer and was about to switch to that when I awoke one morning with a pain in my inner thigh and my leg was swollen twice the size of the other one. I knew that we don't have elephantiasis on this continent so I went to the ER right away. My blood pressure which was normally 123/77 had rocketed to 210/109 and following blood draws and lab results I was given a Doppler ultrasound and it was discovered that I had a huge deep vein clot just below my crotch that extended all the way to my ankle. I spent the entire day in the ER and now have to quit HRT for good and give myself a shot in the stomach for two weeks and take a Warfarin (rat poison) pill each day possibly for the rest of my life. I'll have to wear those awful compression knee high stockings (ugh) and hope that my treatment will dissolve this clot so that it won't break off and go into my heart, lungs and brain and kill me. That's what I get for being willfully stupid. Anyway, I care a lot for you all and thought I'd let you know that Auntie Shan isn't the brightest bulb on the tree and felt that I would share this with you all so that you don't make the same mistake as I just may have killed myself before my time.

Thanks for the words of wisdom and concern, now let's get you healthy! Hugs, Devlyn

Get well soon and best wishes from another support stocking wearer!

This is why you do not DIY HRT.

Now I'm happy that I was still comfy in bed the one time DIY popped into my head, that gave me plenty of time to talk myself out of it before getting up!

I hope you feel better soon!

*hugs*

I don't know what to say..."get better!" almost sounds like a cliche...

*hugs*

Groin-to-ankle clot didn't happen overnight...did you have any symptoms, odd feelings etc before? How often did you exercise, check your BP, etc?

*hugs*

Thank you!

You can bet I'm going to be doing this properly and in the safest manner possibly1

Please get better soon Auntie Shan

Wow, well I hope you don't have to keep taking Warfarin, so what happens now? You won't be able to take hrt ever again?

Can we get a round of applause? To Auntie Shan, for being so brave and honest on the telephone! And for caring enough to warn people away from dangerous behaviours. Hugs, Devlyn

Hugs Shan.

*hugs!* Thank you for your bravery in sharing with us. Stay strong.

I have always been extremely fit, spent an hour and a half at the gym working out five days per week and eventually tapered it to three days per week and did 200 abs crunches and 100 lats crunches a day to maintain visible abs and lats, always ate a healthy  lean diet, never had more than two shots of any alcohol in a 24 hour period, quit smoking back in 76. I dare say that I have been more fit than probably most of you here. I maintained a normal average teenager blood pressure of 123/77 and heart rate at 66. My mother was the youngest to die in our family at 89, I just wished her 102 year old sister happy B-day this month, their dad (my grandpa) was 100 when passed away. My dad and his brother were both in their mid-nineties so there is no evidence in the gene pool that would indicate I'd have any problem like this. So other than a knee surgery three years ago there is nothing attributable to this other then my strong willed do-it-yourself hormone regimen and that's why I'm warning everyone because if I got smooshed doing it on my own then what will be the outcome for you? I don't know what's coming up next, other than constant blood draws to monitor how quickly my blood clots so as to regulate my Warfarin dosage. This translates to continual purple tracks in my arms as if I'm some kind of heroin junkie. Eventually another Doppler ultra-scan to see if the clotting is dissolving any. I can't have any drinks or eat leafy veggies anymore as it doesn't work with Warfarin. I won't be on HRT any longer as it will only contribute to the clotting. There's yet another wrinkle to the day spent in ER and all the labs they ran, it turns out that my white count is huge, so there may be something extra to deal with. I have another appointment with the endocrinologist coming up so we'll see! I'm not afraid to die, I've been on borrowed time since Vietnam where I took a couple of bullets and Monsanto's wonderful defoliant Agent Orange practically destroyed my endocrine system long ago, but it's really sad to be so healthy and kill ones self by being stupid. I'm not fond of sharing all this, but am doing it as kind of a moral obligation to the rest of you for your sakes, so hopefully I don't get any snarky remarks for being willing to flay my own guts out in front of everyone here.

Oh, Aunty Shan. 

I hope your recovery is a safe and speedy one.

Quote from: Shantel on December 29, 2012, 04:03:10 PM
I have always been extremely fit, spent an hour and a half at the gym working out five days per week and eventually tapered it to three days per week and did 200 abs crunches and 100 lats crunches a day to maintain visible abs and lats, always ate a healthy  lean diet, never had more than two shots of any alcohol in a 24 hour period, quit smoking back in 76. I dare say that I have been more fit than probably most of you here. I maintained a normal average teenager blood pressure of 123/77 and heart rate at 66.

Wow thank you for sharing this! I have read over the years from others who talk about adding other hormone chemicals in the cocktail, and I have over time given it some thought, I mean in term of discussing with my endo. The thing that makes me stop is that to be really honest I feel really good on the dosage that I am on right now. I take my shot of estrogen once a week and for whatever reason makes me feel like a normal person. I stopped worrying a long time ago about physical characteristics. They just don't matter in the long run. How I feel is more important so I stay exactly where I am. I give my endo his complimentary 2 tubes of blood once a year and then he proclaims me fit as a fiddle. I remember years ago my endo told me that if I were to suffer a DVT no other endo would ever touch me again or work on me. and told me basically the same thing that HRT would be over forever.

I've heard a few stories about DVT in our community and heard of one person who died from a clot. I've even heard some really bad advice given out to those who have suffered from a clot. My heart goes out to you. I hope that your clot disssolves and that your life returns back to normal soon!

Thanks so much for all the loving thoughts and kind comments. I will be working my new recovery program and won't comment on this one anymore as there's nothing more I can add to it. Love you all my buds, be good to yourselves and do it the right way.
Hugs ~ Shan ~

So sorry to hear this and THANKS for sharing. I started progesterone (asked my doc and she said we can try it) a month ago and stopped 2 weeks ago because of the insomnia. I had a horrible time trying to simply sleep. I also have read this drug increases chance of blood clots and stoke. I'm 53 with not wonderful cholesterol numbers, I think I'm done experimenting with meds. I am on transdermal estriol and spiro, I feel "normal" taking these and have had pretty decent results after 1 year. I think after reading your post, I'm just gonna keep it simple and stick with these two and not push things.

Again sorry this happened and you will be in my prayers.

Dear Shantel, I'm so sorry to hear this but thank you for sharing. I am aware of the blood clot dangers and DVT in particular.

I do hope that you make a rapid recovery and that your medics can help both in your clotting disorder but also keep your transition under way.

My Love and Best Wishes to you

Cindy

I do hope you are through the worst of it and that things don't go further downhill from here.

Definitely a good warning for all of us who might be tempted: do it right or not at all; your life may depend on it.

Shantel, I had a clot in my shoulder years ago from an anatomical issue (thoracic outlet syndrome).  They dissolved it in the hospital and while I was on cumadin(sp?) and a few other things for a couple of weeks, my blood was normal and I never had to take the stuff again - and I never got wafarin.  While I understand how the medication could change your blood chemistry in the short term, I find it confusing that it would or could affect clotting factors in the long term.

Is being banned from HRT and getting lifetime wafarin a standard knee-jerk reaction to a DVT or is there valid medical science behind it?

I don't trust doctors in general and I too often find they take the "safest" routes not because it's best for the patient, but because it's safest for insurance and avoiding malpractice suits.

Keeping you in my thoughts and hoping for you to recover soon

Hugs