Thread 40746736

I recently got diagnosed with diffuse systemic scleroderma. With lung involvement already so I maybe have 5-10years left. The best part of it? My symptoms all started after HRT... and there is a potential link.

Now my rheum and endo have told me to stop taking estradiol because it increases negative outcomes in patients with SSc. So not only did I fucking kill myself I also will have to go off HRT and become an absolute manmoder (or more likely, detransitioner).

Needless to say I'm distraught about this diagnosis.

Anyone here get bad side effects?

>>40746736 (OP)
There are none.
Stop with the transphobia.
Buy your pills.
t. Big pharma

>>40746736 (OP)
Did you have a family history of that disease or similar diseases.

>>40746736 (OP)
If this is a condition more common in women, then taking female hormones can make you more prone to it. https://www.news-medical.net/news/20220228/Study-shows-the-impact-of-gender-affirming-hormone-therapy-on-epigenetic-signature-of-genes.aspx

If you're required to not take hormones for medical reasons you can maybe look into drag queen methods of passing if that fulfills you any. Though I would be skeptical of the doctors' assessment because they tend to have what's called "trans broken arm syndrome" where doctors blame literally anything on your hormones. So I would get multiple opinions before totally ruling out hormonal transition for the rest of your life just based on what two docs said. And maybe look into the biology of it yourself if you're smart enough to figure out if it's really reasonable.

>>40746832
Trannies are literally guinea pigs for big pharma. They are the long term subjects.

>>40746820
none and my family tree is very well known. there is a history of cancers but never anything auto-immune.

>>40746832
I have wondered if maybe I was pre-disposed to it previously, and HRT only kicked it off. Eitherway massive bummer I still am struggling to cope with my death likely being so soon. All over tits. Maybe a lifetime supply of counter could help with me mentally though, certainly.

Thank you.

>>40746950
Certainly feels that way

>>40747168
Well, you will die in man's pursuit of knowledge, in his noble quest to free gender dysphorics from their suffering. I suppose that's not a terrible thing to die for?

>>40747208
i mean I guess lmao. I should go on and off HRT and see if it affects my SCL-70 levels and symptoms. post it online. Maybe it could help someone in the future.

>>40746736 (OP)
>There are no current data on the influence male-to-female sex transition may have in the development of SSc.
It's not because HRT, but rather, because you gave yourself woman hormones, therefore now you have woman diseases. If you didn't get on HRT, you could've probably gotten a male dominant disease instead
It's not because of the HRT, stop fear mongering

>>40746736 (OP)
possibly related but I did develop an autoimmune disorder about 4 years after starting HRT, not the one you have though

>>40746950
Anyone taking a drug for an off-label use is arguably a guinea pig.
Regardless, given our ever increasing life expectancies, we are pretty well off guinea pigs.
>>40747168
>I have wondered if maybe I was pre-disposed to it previously, and HRT only kicked it off.
Testosterone and estrogen both increase the risk of a whole bunch of different medical conditions.
Listen to these anons >>40746832
>>40747239

>>40747227
You should see if there is any way for someone in academia to use you for data

>>40747302
As far as I can tell, there is a lot with HRT we just don't know. Transitioning hasn't really been an option for long enough to have a lot of knowledge of what it does to you if you do it for your entire life.

>>40747390
i've only done it for a year and a half consistently (5years off/on) so i'm the unluckiest bitch

>>40747330
that's a good idea!

an accepted loss or trade off.

>>40747390
>As far as I can tell, there is a lot with HRT we just don't know. Transitioning hasn't really been an option for long enough to have a lot of knowledge of what it does to you if you do it for your entire life.

Just a century of data, we need more time, we just can't be sure, maybe after 300 years we can let people transition aged 70

>>40746736 (OP)
what did you take specifically?

>>40746736 (OP)
i wonder if i have this, my family has a bit of a history with connective tissue disorder stuff, but it's mostly just my sister having hEDS

>>40749544
I started on estradiol 2mg dissolving sublingual pills, then did 0.0025 patches for a while. For the past 2 years of on and off I've done injections, .15ml every 2 weeks. No beta-blockers or progesterone.

>>40750648
An ANA test will show if you have antibodies, along with any symptoms leads to a diagnosis. It's rare though, 3 in 100k if I remember correctly.

>>40747705
Maybe I'm not trans enough, I'd have not transitioned had I known I would get this. Hormonal transition, at least.

>>40746736 (OP)
>picrek
>a tranny on female hormones develops a predominantly female condition
wow, what a shocker

>>40752689
I see what y'all are saying now, yes.

>>40752599
what are your symptoms anon?

i'm curious if eunuchmoding is an option in a case like this. having no sex hormones at all can cause problems of its own but nothing as bad as this.
>>40747239
>It's not because HRT, but rather, because you gave yourself woman hormones
that's what HRT is
like yes, the only way this happens is because OP had a latent predisposition that didn't matter until she was on E, but taking HRT was absolutely part of the causal structure here.
>If you didn't get on HRT, you could've probably gotten a male dominant disease instead
that's not how it works
at a population level feminizing HRT reduces the risk of male diseases like prostate cancer, but the world isn't "balanced" such that everyone who gets a female-associated disease would have gotten a male-associated disease if they were male. OP probably would have been fine-ish if not for the HRT, because autoimmune diseases are generally worse in women.
>>40752599
>Maybe I'm not trans enough, I'd have not transitioned had I known I would get this. Hormonal transition, at least.
no, i think that's the right call and doesn't make you "not trans enough"
death is bad and avoiding it is good

>>40752750
I have skin hardening on my hands, which is like a classical symptom. I also have really bad GERD, shortness of breath, elevated heart rate, muscle and joint soreness all over, extreme fatigue, and my skin feels like its sunburned 24/7. It sucks because I used to be so fit and healthy, now everything hurts :(

>>40753187
is the skin hardening really easy to notice?? the skin on my heels is harder than the rest of my foot
i also had a bit of GERD until i stopped eating wheat, my dad is a celiac and i think im just sensitive to it
i dont really have the rest

>>40746736 (OP)
>1 in 50000-100000 incidence in america
holy shit nona you did get fucking unlucky

>>40747390
there are plenty of people who lived entire lives after transitioning, picrel. amabs and afabs are actually the same species, hormones don't really detect you have the wrong chromosomes and then fuck up your body or anything

>>40753263
Its a very specific type of skin hardening on your hands. Around the MCJ joint. Heels are typically thick. Its so rare I doubt you have it, but if youre really worried just get an ANA multiplex test at your primary care physician. But really I wouldnt worry too much over it.

>>40746736 (OP)
sounds scary

maybe theres some other form of e you could take thats safer with all that

>>40746950
i dont care

all of my health problems came before hrt; and i believe my bowel disease started partly *because* i couldnt get hrt and transition and all the years of stress that caused me; which greatly affects the intestines

my fractures are because of obamacare denying me expensive specialty meds like Humira in the first year of my disease which wasted time and allowed me to worsen rapidly; necessitating more expensive hospitalizations and more harmful and mascing courses of fucking presnisone to stop me bleeding to death; but it was too late i just kept getting worse and in 3y i had been given so much steroids it gave me osteoporosis and fucked my skin up and i fractured my spine randomly at home changing my bed sheets because my lazy abusive mother refused to help me after i asked for 2 weeks

"le big pharma" could have saved me if i hadnt been so poor or obamacare hadnt made me wait a year to get any modern effective medication; i had to fail weaksauce 40yr old drugs first (with more side effects and no chance of success with how severe i was)

but you know- one size fits all right?

fuck every factor that took my life from me

transition and hrt have given it back 10fold; i may never skate again or ride a bike or do anything but the absolute lightest of chore; and i may be in severe pain and need opioids the rest of my life (and probably xanax too); but im happier than ive ever been; i finally started living instead of rotting under my abusive mother in poverty; im married to my soulmate and well cared for and i never would have survived my moms death as a disabled transgirl who cant work and had no family or friends if i had not been able to transition finally when i did

but thanks to me being trans and feminine enough; i was saved by people who showed me im worth something; and they helped me reach my wife; and my dreams of love

>>40746736 (OP)
nobody tells cis women with autoimmune diseases to get ovariectomies or start taking testosterone, your doctor is a quack
take progesterone to suppress immunity back again