Susan's Place Transgender Resources

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

Quote from: SageFox on December 30, 2012, 01:25:19 AM
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.

There is a slight but significant risk in developing clotting disorders while on HRT, this is age related as well as hormone related and occurs in all woman who go onto HRT for either menopausal treatment or for gender dysmorphia.  There is also a slight but significant increase in liver damage and this also has to be monitored, as well as osteoporosis, which again should be monitored.

While people may have differences in opinion about their medical care I believe it is rare for medics to withhold best treatment it is unethical. I would never deny best treatment, and indeed we often find work a rounds so we can give treatment to people that they would not be able to afford but that would be better for them

Thanks for sharing. Sorry to hear about your going through this but hopefully someone will read this and think again about self-medicating. Hope you get better soon.

Sent from my Windows 8 device using Board Express

Quote from: SageFox on December 30, 2012, 01:25:19 AM

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 know the answer to that as yet, I have a battery of appointments coming up. Got a lab appointment on the 2nd for a blood draw and another an hour later to look at the results and make any changes in the amount of rat poison (Warfarin) I have to take based on how fast or slowly the blood clots. That should go on bimonthly for some time leaving me with a permanent black and blue on my arm as if I'm a heroin junky. Then I see my primary provider on the 10th and have a mystery appointment at the endocrinologist, so I'll know more by then. Most of the medical types I've seen so far think that HRT will be off the table for me from here on.

Quote from: SageFox on December 30, 2012, 01:25:19 AM
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.

Well to be honest that was my very own attitude and that thinking right there is what got me in the jam I'm in right now. So I highly recommend rethinking that mindset. We have the option of going with the learned directions of the specialists or doing a high speed face plant into a brick wall trying to fast track our transition on our own.

So sorry this has happened shantel .
I hope you recover fully from this. I was really worried about clots myself so switched to patches.

While I'd like to think that most doctors have their patients best interests at heart, I seem to have run into enough of the bad ones to give me a bit of bias.  My blood clot was preventable but a doctor ignored my complaints and refused to give me a reasonable examination.  It took a swollen arm and emergency treatment to prove his incompetence unfortunately. 

The second bad doctor was responsible for my daughter having to go through extensive hip surgery at the age of 10 - because he refused to listen to his patient and me and withheld proper medical tests (not even an x-ray) until she was nearly crippled - and then only the specialist made the proper effort to diagnose and treat.

I fully intend to take the proper medical route with my HRT.  Shantel, lessons like yours and others are enough to convince me to have patience and work with the specialists.  But nowadays I treat doctors like lawyers and mechanics, you have to be discriminating to find the honest ones you can trust.

And thanks for the info Cindy - my question on the science was sincere.

Best of luck on the tests and the future of your transition Shantel.

Thank you shantel for sharing a very personal medical situation/emergency and letting us know your thoughts. I was contemplating on taking anti androgens against my doctor's advice, but now of what happened to you, I will just listen to my medical doctors. In terms of what Sagefox said, I went through that dilemma a few years ago, when I got misdiagnosed for a lymphatic cancer and was just given ointments for skin lesions by medical doctors, until a physician assistant did a biopsy and found I had a rare lymph cancer(ie.lymphomatiod papulosis, 1 in 1,000,000 have it, I checked reputable medical websites). Yes medical doctors cover the behind by giving the safest therapies for medical conditions and to prevent medical malpratice and medical group law suits, but by and large medical doctors are good people who do want to help sick and dying. You have to be a smart advocate for your own healthcare and know when a medical doctor has the best interest for you and when he does not. My opinion on hrt after seeing what happened to shantel, I would research more, which I'm going too, I'm 44 years old and present the medical evidence to my endocrinologist, if I find contrary medical research then what she is giving, the medical doctor maybe conservative, in which case shantel may need to find another qualified medical doctor(s), who can give her a second opinion,and after a period of time,  and doing your own medical research, you can get a fair sense on what is legitimate and what is not. In the case of Sagefox and her child, I feel that is a different situation, since you know if your child is sick, regardless of what the doctor says, and you hunt down another doctor to tell you what is wrong with your child(ie.medical saving procedures).  Shantel, it seems like the docs want to apply medical saving procedures and research has to be done and evaluated, by Shantel, no one else.

My two cents, and my opinion maybe way off, in which case I apologize and again, thank you shantel for your advice and will heed it, until other medical research proves otherwise(ie.if it exists). (((((Huggs Shantel)))) :(

Sorry to hear about this, hope your doing well.

Let this be a lesson to self medicators and people thinking they are smarter than the doctor. Faster results are not worth crippling or killing yourself for.

Everything you have said is true, only you are describing it in the worst possible light.  I have direct experience with everything you are describing, and I want to make your heart lighter concerning all of this.   It isn't as bad as it seems.

I was 30 years old when I was on hormones and developed a small blood clot in my lower ankle area.  Because I was extremely healthy and quite thin, the ER didn't worry about it and told me to take baby aspirin.  Within a few days, the clot was gone and reappeared right behind my knee.  I could only notice it because it was a little more red than the other knee and would have a little pressure when I fully extended my leg.  I told my regular doctor who had me temporarily stop hormones and monitor it.  Because I was otherwise healthy and had not had surgery recently, it wasn't clear what caused it, so she ran a battery of blood work. 

Within about three days I had the ever so slightest pain in my chest when I breathed in deeply.  I went to bed as normal, thinking, if it hurts tomorrow (it was more of an annoyance really), I will call my doctor.  The annoyance was still present in the morning so I left a message for my doctor and went to work.  She called me about an hour later with a very grave tone.  She said, "You have to get to the ER now!  You're tests came in; you have an extremely rare blood disorder, Protein S Deficiency, that causes you to clot excessively.  You are experiencing a pulmonary embolism."  It certainly didn't FEEL like I was dying - just a little pain in my chest.

Well I was in the hospital for a week after being admitted with "multiple pulmonary emboli, numbering around 13".  It was touch and go the first two nights as the doctors treated me with thinners and waited to see if I'd make it.  They told me that had I not been in such good health or had I been overweight I would have probably died.

Now for the bad stuff:

After I got out of the hospital they told me I'd need to take warfarin the rest of my life, I'd have to stop taking hormones, and I could no longer continue my near-vegetarian diet.  I was pretty crushed and for two years had no hormones, ballooned up nearly 50 lbs due to my new diet of cheeseburgers and other crap.  I was so miserable - my body dysmorphia was worst than ever and my dysphoria, which had been effectively controlled on estrogen, was raging out of control.  Additionally, I developed osteopenia due to a lack of hormones in my body (I already had an orchi so I had no estrogen or testosterone during this time) and have to take Fosamax the rest of my life (and trust me, the side of effects of this are much, much worst than anything with warfarin).

Now for the good stuff:

I get my blood checked between 1 - 4 weeks intervals and have for 2 years.  I've never had track marks (except when I left the hospital t he first week) and none of the bruising has been permanent (and my doctors LOVE to go to the same spot on my arm).  You might be sensitive to permanent bruising, but I've never seen anything of the sort on me.

I have been on warfarin for about 2 years and have had no negative side effects from the drug itself.  It is a highly effective blood thinner, but in too great of quantity can cause internal bleeding.  It was used to kill rats by giving them enough to cause extreme internal bleeding.  It shouldn't be news to you or anyone else that using something to excess can kill you.  So it is a bit melodramatic to continuously call it rat poison and will only make you feel worst about it.  You will be fine, just don't overdose on it.

I got sick of how I looked and told my doctor I'd be going back to full on vegetarian last month - leafy greens like spinach, salads, everything.  She consented and we worked together to find me the right dose of warfarin and to monitor my blood.  The rule for Warfarin is, "Dose to your diet, don't diet to your dose."  Now immediately after getting out of the hospital and when you still have a shrinking DVT it makes sense to be excessively careful - but that is only temporary.  If you end up on warfarin permanently, you can incorporate veggies back into your diet working with your doctor.

I read about how some post-menopausal women have to take warfarin but still take HRT.  I figured there was hope, that taking warfarin and having a clotting disorder did not mean HRT was absolutely out.  I approached my doctor about this earlier this month.  She explained that there is significant risk in continuing HRT with my current blood disorder, but if I understood the risks, she would work with me as well as a hematologist to allow me to begin estrogen again.  I haven't started it yet, but I will by the end of January.  Getting back on estrogen should help my bones as well making it so that I no longer have to take Fosamax.

As a final word, I understand you are upset - so was I, and many of the things the doctors tell you can be very scary and intimidating.  They are trying to look out for you so you can continue to live a long and healthy life based on the standards they have for all patients.  However not all rules are fixed, but I don't recommend self-treating either.  Work with your medical professionals to find a solution that works best for your life.

Quote from: Just Kate on December 31, 2012, 10:41:43 AM

As a final word, I understand you are upset - so was I, and many of the things the doctors tell you can be very scary and intimidating.  They are trying to look out for you so you can continue to live a long and healthy life based on the standards they have for all patients.  However not all rules are fixed, but I don't recommend self-treating either.  Work with your medical professionals to find a solution that works best for your life.

Kate, thanks for you're invaluable input and reassurance, you are a real sweetheart! This is the reason Susan's Place exists, so that we can share things for the sake of others and be transparent with one another about things we couldn't discuss anywhere else. I am most encouraged by your comments, thank you for taking the time and happy new year! XX

I was on warfarin after my stroke.  I was on it for a year, but eventually I was taken off it.

Quote from: Shantel on December 31, 2012, 10:58:41 AM
Kate, thanks for you're invaluable input and reassurance, you are a real sweetheart! This is the reason Susan's Place exists, so that we can share things for the sake of others and be transparent with one another about things we couldn't discuss anywhere else. I am most encouraged by your comments, thank you for taking the time and happy new year! XX

I wish you the best too, and a healthy and happy new year. 

Thanks for sharing these details, Shan! Keeping you in my thoughts for a full recovery and also for ability to remain on HRT.

hugs,

Z

Quote from: Zythyra on December 31, 2012, 06:30:35 PM
Thanks for sharing these details, Shan! Keeping you in my thoughts for a full recovery and also for ability to remain on HRT.

hugs,

Z

Thanks so much Zythyra and all you other sweet buddy girls! My leg is already feeling better and the swelling is subsiding a bit each day. Happy New Year everybody! Love my buds here!

Hey Shantel,

I hope things turn out well for you and I am giving you a reputation point for having the thought & courage to bring "a face" to this extremely important issue!

Hope & Prayers heading your way!

Quote from: SageFox on December 30, 2012, 01:25:19 AM
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.

Warfain is the generic name for Coumadin.  Because Shantel developed a DVT on HRT she may not be allowed to have that form of medication again.  She will likely need some sort of hormone eventually, or risk osteoporosis.

I have had massive amounts of blood thinners prior to my heart procedures.  Don't like it.

Shantel,

Sorry to hear about what happened to you.  I know of someone who had a severe DVT a few years ago, and is still on Warfarin, but fortunately, they have been able to reduce the dose over time, and he's been gradually able to have the occasional drink here and there.  Unfortunately for him, he's got a rare genetic marker for it, and his relatives have had history of stroke, so there's no way he'll ever be off an anti-coagulent.

Your haematologist is going to have to become your best friend so to speak - I sincerely hope that over time, things will get sorted.  As others have said, with your history now, HRT is going to be difficult, but there's a definite possibility of informed consent later on.

*hugs*

Thanks again everyone! The hematologist said that my medical and family history indicates that this may just be a one time event. I'm being optimistic but feel like a pin cushion right now. Got my water rowing machine, a belated Christmas present to ourselves, and had a couple of ten minute brisk rows yesterday and got a nasty leg cramp. I don't want to get out of shape by just sitting around.

Got an update:
     I had multiple appointments at the VA hospital today, more labs, hematology department says I can quit self administering the shots in the tummy now and that my medication levels are right on target. Later at my healthcare provider we had a long chat, she says my BP is back in the perfect range and my weight is perfect and that I will be off the Warfarin in six months. She went on to say that the endocrinologist will no doubt put me on a low maintenance dosage of estrogen after that six month period. I have labs and an appointment at endocrinology on the second Friday of February, I'll know more then. Meanwhile, it's reassuring to know that there is life after death, and that I may get a second chance. I took the liberty to complement my provider on her terrific looking hair style and tint, after all isn't that what we girls notice on other women? She gave me a nice warm hug before I left, she's such a sweet lady!

Shantel

I just noticed this thread. Wow. I am so sorry you have gone through that! I am very happy that you are improving and I am sure you will continue to improve.

Thank you for sharing your story.

That sounds like really good news Shantel.  I can't imagine how hard it must have been going through that.   Best of luck with how things turn out!

Thanks Annah and Jen for the nice comments. Being the village HRT crash dummy wasn't fun, but glad I could share the awful experience of what not to do. I knew up front that I was pushing the envelope and taking a huge chance. Looks like I'm going to survive because I am quite fit, don't smoke, drink or chew or go with girls that do which worked in my favor. I have six months on this Warfarin and ongoing labs until I'm in the clear. Thanks again!

Praying for a speedy recovery for you. And you are too bright & always offer great words of wisdom...we ALL make bad judgement calls at some point.  I'm glad they caught the clot in time....really hoping you'll be okay.

Quote from: spring0721 on January 10, 2013, 07:20:32 PM
Praying for a speedy recovery for you. And you are too bright & always offer great words of wisdom...we ALL make bad judgement calls at some point.  I'm glad they caught the clot in time....really hoping you'll be okay.

Thanks sweetie!

Just saw this thread and my heart sank :( so sorry to hear about what you're going through but thank you for posting it as a warning to the rest of us. It sounds like you've had good news with the latest update tho? Wishing you a speedy recovery!

 That is really a sad story I just learned. Of course, get better by all means, Auntie Shan. We need your company here.

I understand that DIY HRT is dangerous, but I 'd like to tell you guys, that in our country no endocrinologists know how to treat TS people - they just don't have this course in the medical colleges here. I myself started transition on my own, 8 months later I thought it is better to find a doctor. Our LGBT recommended me a friendly endo - a nice woman who even was on the TS conference in Vienna. She then confessed to me that fact that they need to go, say to Holland to learn about HRT. What she does now is just checking with me what medicine I will be taking and checks my blood and other tests. All knowledge about HRT I had to gain from the net.

Shan,
Just found this thread.  I'm so sorry to hear you've been going through this.  Glad there's a brighter outlook than at the start!
Hugs!

Shan you are very brave to share this information with us and i thank you.
I hope you will heal quickly. My prayers are with you.

Quote from: Albina on January 11, 2013, 10:02:44 AM
That is really a sad story I just learned. Of course, get better by all means, Auntie Shan. We need your company here.

I understand that DIY HRT is dangerous, but I 'd like to tell you guys, that in our country (Kyrgyzstan) no endocrinologists know how to treat TS people - they just don't have this course in the medical colleges here. I myself started transition on my own, 8 months later I thought it is better to find a doctor. Our LGBT recommended me a friendly endo - a nice woman who even was on the TS conference in Vienna. She then confessed to me that fact that they need to go, say to Holland to learn about HRT. What she does now is just checking with me what medicine I will be taking and checks my blood and other tests. All knowledge about HRT I had to gain from the net.

A lot of the endo treatment for MtF is very similar to that for menopausal woman, with exception for androgen blockers. From a health point of view it is quite similar in risk - including blood problems and breast cancer. It may be worth while mentioning that.  to her

Someone told me they wanted to take hormones just to be a little girly(but not because he is),  I told him are you insane enough to risk your life?

Now I have this thread as ammunition to show just how dangerous things can be for us.  The kind of risks we all take.

Quote from: Rita on January 14, 2013, 12:09:31 PM
Someone told me they wanted to take hormones just to be a little girly(but not because he is),  I told him are you insane enough to risk your life?

Now I have this thread as ammunition to show just how dangerous things can be for us.  The kind of risks we all take.

Good for you Rita, I shared this in hopes of saving others from making the same willful errors I did. Take it slow and easy, obey the rules. We hear that patience is a virtue and that speed kills!

One of my friends has a friend who just ordered hormones through the mail. I have been using your story Shan to try and get this kid to not follow through with self medication. I don't know if it is sinking in as he is young and dumb. I would like to thank you again for posting your story. Hopefully I will be able to use it to save this kid.

@Shantel

Speedy recovery and don't beat yourself up about it: we all make mistakes.

Thanks for sharing: very informative and helpful.

Love,
Andrea

FYI - Rather than have to go through the whole sordid story over again with a new thread, I'll just do an update; I had read a previous post somewhere about the question of personality changes caused by HRT. Inasmuch as I'm now off female hormones for at least six months and possibly longer I'm already noticing that my Type-B laid back personality is beginning to dissipate and I'm unconsciously reverting back to my old Type-A chloric prickly personality. It's never nice to yell at people and say "What are you looking at a--hole?" when you suspect they have clocked you and are making snide remarks. Your prayers to your Higher Power or pet rock on my behalf will be most appreciated!  :icon_peace:

I would like to point out the it was Ethinyl Estradiol (Premarin), that was the drug in this case.

As she mentioned the "current wisdom" is that this is bad.  The Women's Healh Initiative Study  http://www.nhlbi.nih.gov/whi/ (http://www.nhlbi.nih.gov/whi/)  was discontinued due to problems with Premarin.

Many doctors still prescribe Premarin, but it's something to avoid.  Pure estradiol is cheap and much safer.

Much the same thing occurs with Progestins, pure micronized progesterone is better and safer.
Premarin and Provera are patented drugs and they are promoted to doctors by their makers.

Estradiol and Progesterone are natural substances.  They can't be patented and any licensed drug manufacturer can produce them.  Cheaper, more natural and safer.

More info on DVT hazards here: http://www.nhlbi.nih.gov/whi/update_dvt1997.pdf (http://www.nhlbi.nih.gov/whi/update_dvt1997.pdf)

Randi

Quote from: Shantel on December 29, 2012, 12:42:40 PM
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.

Quote from: Randi on January 23, 2013, 02:57:05 PM
I would like to point out the it was Ethinyl Estradiol (Premarin), that was the drug in this case.

Randi

FYI - Ethinyl Estradiol (ethyne, sodium and sodium amide) and Premarin (pregnant mare urine) are two different substances entirely.

Provera is not a estrogen analogue, it is medoxyprogesterone acetate and from Shantel's original post I don't think she mentioned she was on it. Apologies to all if that is untrue.

In Shantel's cases with her medical history, taking Provera, or probably any progesterone,  in combination with estrogen of any sort would be a negative indication.

Shantel was wisely pointing out the dangers of self medicating on estrogen; the dangers of combination therapy without strict medical supervision, especially for us 'mature' ladies make those risks an awful lot higher.

Quote from: Cindy James on January 23, 2013, 05:38:10 PM
Provera is not a estrogen analogue, it is medoxyprogesterone acetate and from Shantel's original post I don't think she mentioned she was on it. Apologies to all if that is untrue.

In Shantel's cases with her medical history, taking Provera, or probably any progesterone,  in combination with estrogen of any sort would be a negative indication.

Shantel was wisely pointing out the dangers of self medicating on estrogen; the dangers of combination therapy without strict medical supervision, especially for us 'mature' ladies make those risks an awful lot higher.

I had been using EE for quite some time, a week before the clot appeared I had begun to cycle Provera into the mix. I actually believe that the clot was present before I made my decision to self medicate as a result of a knee replacement surgery a few years back, the EE and Provera simply exacerbated the problem exponentially and took something that had been relatively small in my lower leg and made it huge. It's analogous to how a log gets stuck in a river and over time debris builds up against it until an island has been created. That's fine for rivers but not so good in one's arteries and can lead to an untimely death.

Might not mean much but I'm still crossing my fingers for you and I'm glad you've recovered some already; it must be a scary thing to go through!

Quote from: Numinum on January 25, 2013, 07:52:00 AM
Might not mean much but I'm still crossing my fingers for you and I'm glad you've recovered some already; it must be a scary thing to go through!

Thanks, I appreciate everyone's thoughts and comments. I put it out here so more people can learn about what happens when you play "Dumb & Dumber" with hormones.

 Shantel, First let me say that I am praying that you fully recover from this.

And second thank you for having the courage to post what you are going through.
I hope that if someone is thinking of self medicating, that they read this first.

Hugs
Bethany

Quote from: Bethany Dawn on January 25, 2013, 08:08:41 AM
Shantel, First let me say that I am praying that you fully recover from this.

And second thank you for having the courage to post what you are going through.
I hope that if someone is thinking of self medicating, that they read this first.

Hugs
Bethany

Me too hon! I don't like flaying my guts out in front of everyone, but knowing how driven and willful some of us can be it's kind of a moral obligation so others can be forewarned.

I had an appointment with the VA endocrinologist this morning and we had a long talk about everything that had happened. I had been under his care several years ago but had de-transitioned for two years and fell through the endocrinology department's cracks thus I had picked up where I had left off and restarted my transition on my own by self medicating and then came the awful clot.

I had completed his lab order earlier in the week, so based on that information and after coordinating with my provider and the anticoagulation unit that is monitoring my clotting factor he is of a mind to start me on either a patch or injectable estradiol instead of oral medication as it doesn't run entirely through the liver where the clotting process begins. I'm feeling better about the whole fiasco now, I just don't want to turn back into a man ever again.  :laugh:

That's good news, Shantel.

Quote from: crazy at the coast on February 08, 2013, 12:45:17 PM
That's good news, Shantel.

Thanks you sweet soon to be over the hill chickster!  :D
You'll be able to join the special "Over The Hill gang" being formed by Jamie D and Shantel.

Quote from: Shantel on February 08, 2013, 12:50:46 PM
You'll be able to join the special "Over The Hill gang" being formed by Jamie D and Shantel.

Glad to hear your good news, Shantel!

Am I young enough to join this auspicious group yet?  ;)

Z

Shan, that's wonderful news!  I'm so happy for you :)

It's great to hear that you have had some good news after what must have been a terrible ordeal.

Best wishes

Jayne

Quote from: Zythyra on February 08, 2013, 01:57:59 PM
Glad to hear your good news, Shantel!

Am I young enough to join this auspicious group yet?  ;)

Z

You're a bona fide member already Zythyra!

Thanks everybody, I'm thrilled!

Glad (and rather relieved) to hear your appointment went well Shantel  :)

Hugs





Grammar Correction

Good news, Shan.. :) Glad to hear it's working out for you.

I'm happy to hear the good news.  Congratulations!

Great news Shan

Hugs

Quote from: Randi on January 23, 2013, 02:57:05 PM
I would like to point out the it was Ethinyl Estradiol (Premarin)

Ehm, Ethinyl Estradiol/Lynoral and Premarin are very different from eachother.

EE is chemical, Premarin is derived from PREgnant MAre urRINe.

EE/Lynoral has been banned since 3 years in Holland because of the  dangerous side effects in ciswomen and MTF.

Now it's Diane35 (Dianetta in the UK), containing EE and AA that's causing problems in ciswomen who use it to cure/prevent acne and hirsutism.
Gonna be banned in EU too soon.

Thanks girlfriendo's,
                No-one is more pleased and excited than I am. I do appreciate your thoughts and great enthusiasm the sharing of concerns, hugs and tears for all the stuff that each of us put ourselves through or have to endure from others. Thought most of us will never meet in this life, this is in some ways closer than a family and as I read your posts each day I am drawn to each one of you all who are unique and very special in my estimation.

Quote from: Shantel on February 08, 2013, 05:36:52 PM
Thanks girlfriendo's,
                No-one is more pleased and excited than I am. I do appreciate your thoughts and great enthusiasm the sharing of concerns, hugs and tears for all the stuff that each of us put ourselves through or have to endure from others. Thought most of us will never meet in this life, this is in some ways closer than a family and as I read your posts each day I am drawn to each one of you all who are unique and very special in my estimation.

I'm excited for you, but I feel conflicted, because I still live the hell you play every day.  My clotting does not permit me to take hormones at all.  There was some hope I might be able to go back on them, but that is fading fast.  I hope your thread helps other to decide not to self medicate, but sometimes our clotting problems happen through no fault of our own.

Maybe I'm just feeling bitter.  I know I'll never be able to have the hormones that once did so much for me and have to figure out how to deal with this curse without them.

Quote from: Zythyra on February 08, 2013, 01:57:59 PM
Glad to hear your good news, Shantel!

Am I young enough to join this auspicious group yet?  ;)

Z

Charter member!

Quote from: Just Kate on February 11, 2013, 12:36:17 AM
I'm excited for you, but I feel conflicted, because I still live the hell you play every day.  My clotting does not permit me to take hormones at all.  There was some hope I might be able to go back on them, but that is fading fast.  I hope your thread helps other to decide not to self medicate, but sometimes our clotting problems happen through no fault of our own.

Maybe I'm just feeling bitter.  I know I'll never be able to have the hormones that once did so much for me and have to figure out how to deal with this curse without them.

Other than what I brought on myself I have always been healthy and physically fit with a well developed vascular system according to comments I've received from doctors over the years. The endocrinologist's statement was that oral HRT would be off the table for me in the future as a precaution because of my age and the fact that they have to be absorbed and go through the liver and that's where the onset of the clotting procedure begins in those liver enzymes. He went on to say that estrogen's via a patch being absorbed through the skin bypasses the liver for the most part and either that or an injectable delivery is much safer. This endo is no slouch and is known throughout the world for having discovered a hormone that acts as a trigger that tells people when they have eaten enough, and that the "full button" is missing on some people who become morbidly obese which may be some kind of breakthrough in that field. He is conferring with my personal VA provider and the people at the anticoagulation unit that monitor my blood to give them a heads up on what he's doing with me, so he's very thorough. Perhaps a second opinion in your own situation may be warranted?

Quote from: Shantel on February 08, 2013, 12:33:19 PM
I had an appointment with the VA endocrinologist this morning and we had a long talk about everything that had happened. I had been under his care several years ago but had de-transitioned for two years and fell through the endocrinology department's cracks thus I had picked up where I had left off and restarted my transition on my own by self medicating and then came the awful clot.

I had completed his lab order earlier in the week, so based on that information and after coordinating with my provider and the anticoagulation unit that is monitoring my clotting factor he is of a mind to start me on either a patch or injectable estradiol instead of oral medication as it doesn't run entirely through the liver where the clotting process begins. I'm feeling better about the whole fiasco now, I just don't want to turn back into a man ever again.  :laugh:

Shantel, I was so glad to hear it when your good news came. I've been on patches, switching to IM injections due to adhesive intolerance, since day one to minimize the risks. I'll sleep better knowing you are both safer now in you physical health AND able to continue treatments that enhance your emotional well-being.

Thanks hon, you are always the sweetest!

Quote from: Pleasingly Plump Jamie D on February 11, 2013, 03:36:05 AM
Charter member!

A couple of years ago, I had what I called my speed limit year  ;D

Z

I'm on my third opinion and only one would get closer than a ten foot pole due to my blood disorder.  Maybe one day.  I see the doctor who was actually helpful again next week on this issue, but she hasn't been hopeful.

Best of wishes for some good news Kate! (((hugs)))

Oh crap, had the big F-word event this morning. I've been going to the mailbox each day expectantly awaiting my patches to show up from VA. I called the endo department and they are on hold while all the different department heads figure out if this is going to work against my DVT situation. This is like promising a kid candy, holding it out and then taking it back. Guess I should just start posting on the FtM board because I have these absurd invasive thoughts of my voice dropping, my tits going flat, growing nuts and turning into a giant hairball! Dear Lord please take this sh*t away from me.... :'(

stay strong & hang in there.
The uncertainty is possibly the worst part of transitioning, it's horrible having some faceless pencil pusher who has never seen you in person deciding your future.

I know you are a good person & I believe that if you try to be a good person the karma will reward you.

Best wishes wrapped up in a big virtual hug

Jayne

It seems that after the endocrinologist had agreed to put me back on estrogen via patches what he hadn't told me was that he had to clear it with my medical provider, the pharmacist and the anticoagulation unit that is monitoring my blood thinners while I'm getting rid of this clot. I don't blame him for wanting to cover the bases before just sending them out. I found that everyone concurs and that my meds are in the mail. So my fears of being off HRT for good were unfounded.

Having read all the rants about patches and how they roll off in the shower, yada, yada,yada, I purchased a couple of rolls of clear surgical tape that breathes which I can put over a patch to offset that problem, hopefully I won't get a rash from the adhesives.

Thanks everyone for your swell support and kind comments. I put my situation out there so that some other impulsive type won't have to go through this stuff. If we can't pass on some advice to others based on our own experience and occasional screw-ups then what are we here for? I'm done with this thread, thanks again!

Phew! So relieved that you will be able to patch things up! :D

Got one more month on blood thinners and I will be off the hook on the DVT issue. I consider myself very lucky because I know a few former members here who died as a result of self medicating.

Quote from: Shantel on June 12, 2013, 06:53:55 PM
Got one more month on blood thinners and I will be off the hook on the DVT issue. I consider myself very lucky because I know a few former members here who died as a result of self medicating.

yup. self medicating can be dangerous. even more so if your over 40