Hello.  I am about 3 years into taking Spironolactone for my Hep C (not treatable).  I just recently found a Dr. that would prescribe me Estradiol.  It made a huge difference in my daily life, like emerging from a fog.  I have been looking for help locally with getting help in the hormone dept, and also getting my chromosomes checked out.   I should add that the Dr. who got me the Estradiol prescript. doesn't know much about hormones, but he is a human being and agreed when I showed him the research on it.

I was supposed to get to see a Dr. who works with transgender, and waited 2 1/2 months just to get the paper stuff filled out.  The person who interviewed me talked 90 miles an hour, and was all confused about the whole issue.  3 days before I was to see the Trans. Dr., he left a couple of messages saying that the Trans. Dr. was unfamiliar with treating Hep C, and that I should go to S.F. clinic, which is an all day drive for me.  Too far for me, and not why I came there.  The reason he gave in the 2nd message was that it was all complicated, so I am rejected.

I'm at a loss as to what to do.  I tried several times leaving messages (he doesn't answer his phone and won't return calls).  I know I need help, but I can't find anyone who will help me that is even familiar with hormones.  I've asked every Dr. in the area, not one of them knows the first thing about it.  This is very strange to me, how they got through Medical School and don't know anything about hormones.  Most just stare at me like they're going to call a Priest and have me exorcised.

HELP!!!  What do I do now?

Get in contact with the local LGBT center and ask them about transgender treatment. They will know of the doctors in the area that can help you.

Second item of interest. My sister who was in her mid 50's at the time was treated for Hep C and cured. She had been in several programs before and she couldn't handle the treatment but they came out with a new one that worked for her. She had carried the virus from her 20's. I am unsure why you can't be treated but if it has been a few years from the time you last checked into it, it might be time for another look.

Is there a program in your area that will let you talk with a doctor through a video chat? The doctor that manages my HRT is about 6 hours away from me, but I can meet him through the Ontario Teleheath Network. Basically, I go to my local hospital, they put me in a room with a video uplink, and he connects. Even if there's no such program where you are, maybe you could find a doctor willing to meet over Skype?

OK, I'm speaking here as a person who knows a fair bit about hep C but I am not a medical person. I don't understand why you would be taking spiro for hep C, it'll reduce your androgens, blood pressure and water retention but I'm pretty sure it was zero effect on hep C.

Hep C is a virus that, over time, will damage your liver and its ability to do its many very important life sustaining tasks. Over time that damage generally progresses through increasingly more severe stages of cirrhosis. If you have a high fat diet and/or high alcohol intake the rate of damage will be exacerbated. While cirrhosis is bad the liver can recover if the damage is stopped and not too advanced.

The really good news is that there is now a cure for most genotypes so of hep C, they are direct acting anti viral tablets that are fast acting with treatments of only 12 weeks in most standard cases and with very minimal side effects and 90+% cure rate (not like Peg Interferon & ribavirin injections, the old treatment that took many months, made you very sick and has a patchy success rate). The very bad news though is that these new medicines are extremely expensive in the U.S. and many other countries. (In Australia the government foots nearly all the bill, India and some other countries have developed cheaper generic brands).

So yes, there is a cure, a very effective cure, but big pharma's greed is keeping it out of the reach of many who so desperately need it to avoid illness, cirrhosis and potentially liver cancer.

I would suggest you listen to your doc and get to a hospital liver clinic or similar ASAP for a check up of your liver and viral load and talk to them about your condition and options for treatment. I believe some people in many countries including the U.S. have set up Dallas Buyer style Clubs for hep C medication so the hospital might be able to point you in that direction.

You really need to get your liver sorted out before you get into HRT since many hormones will place a stress on your liver, and if it is already struggling with the hep C then taking HRT could cause you serious health problems.

Quote from: Ms Grace on April 09, 2016, 11:43:33 PM
OK, I'm speaking here as a person who knows a fair bit about hep C but I am not a medical person. I don't understand why you would be taking spiro for hep C, it'll reduce your androgens, blood pressure and water retention but I'm pretty sure it was zero effect on hep C.

Hep C is a virus that, over time, will damage your liver and its ability to do its many very important life sustaining tasks. Over time that damage generally progresses through increasingly more severe stages of cirrhosis. If you have a high fat diet and/or high alcohol intake the rate of damage will be exacerbated. While cirrhosis is bad the liver can recover if the damage is stopped and not too advanced.

The really good news is that there is now a cure for most genotypes so of hep C, they are direct acting anti viral tablets that are fast acting with treatments of only 12 weeks in most standard cases and with very minimal side effects and 90+% cure rate (not like Peg Interferon & ribavirin injections, the old treatment that took many months, made you very sick and has a patchy success rate). The very bad news though is that these new medicines are extremely expensive in the U.S. and many other countries. (In Australia the government foots nearly all the bill, India and some other countries have developed cheaper generic brands).

So yes, there is a cure, a very effective cure, but big pharma's greed is keeping it out of the reach of many who so desperately need it to avoid illness, cirrhosis and potentially liver cancer.

I would suggest you listen to your doc and get to a hospital liver clinic or similar ASAP for a check up of your liver and viral load and talk to them about your condition and options for treatment. I believe some people in many countries including the U.S. have set up Dallas Buyer style Clubs for hep C medication so the hospital might be able to point you in that direction.

You really need to get your liver sorted out before you get into HRT since many hormones will place a stress on your liver, and if it is already struggling with the hep C then taking HRT could cause you serious health problems.

Please go back and read my post.  You're young and you feel invulnerable.  I'm almost 64 and I have 3 months to 2 years left.   
Yes, you know about Hep C, but you don't know how badly it can mess you up inside.  I'm too far gone, dear, they did not catch me in time.  What does that mean? It means no liver transplant, no Harvoni or Sovaldi to stop the Hep C, and no cure for the cancer it caused in my liver.  It's a question now of how to spend what time I have left.

Now, with that and the little girl inside me that never got the chance to grow up, I need help. 
Have a heart. 

http://www.ncbi.nlm.nih.gov/pubmed/15565616

Hepatology. 2004 Dec;40(6):1426-33.
Progression of liver fibrosis in women infected with hepatitis C: long-term benefit of estrogen exposure.

Female sex is a protective factor for the progression of fibrosis in patients with chronic hepatitis C virus (HCV) infection. Experimental data suggest that estrogens may have an antifibrotic effect. The objective of this study was to evaluate the influence of past pregnancies, oral contraceptives, menopause, and hormone replacement therapy (HRT) on liver fibrosis progression in HCV-infected women.

In conclusion, menopause appears to be associated with accelerated liver fibrosis progression in HCV-infected women, an effect that may be prevented by HRT.


This is all at your own risk.

One possibility would be to show this to docs and ask for HRT.
Its possible they want some kind of waiver.


I`d do a few phone calls talking at renowned liver clincs to a specialist.
If they confirm this I would go ahead.


*hugs*

Quote from: EmmaMcAllister on April 09, 2016, 11:07:30 PM
Is there a program in your area that will let you talk with a doctor through a video chat? The doctor that manages my HRT is about 6 hours away from me, but I can meet him through the Ontario Teleheath Network. Basically, I go to my local hospital, they put me in a room with a video uplink, and he connects. Even if there's no such program where you are, maybe you could find a doctor willing to meet over Skype?

Well, that's an idea.  At least I could talk to someone about it.  I have a Tele Med already for end  of life issues, and she's great but she doesn't know much about Transgender.  Sometimes I get so despondent that I want to take my pain meds and finish the job, but I promised her I wouldn't do that.  I never knew I could cry that hard for so long.

Quote from: Laura_7 on April 10, 2016, 12:30:00 PM
http://www.ncbi.nlm.nih.gov/pubmed/15565616

Hepatology. 2004 Dec;40(6):1426-33.
Progression of liver fibrosis in women infected with hepatitis C: long-term benefit of estrogen exposure.

Female sex is a protective factor for the progression of fibrosis in patients with chronic hepatitis C virus (HCV) infection. Experimental data suggest that estrogens may have an antifibrotic effect. The objective of this study was to evaluate the influence of past pregnancies, oral contraceptives, menopause, and hormone replacement therapy (HRT) on liver fibrosis progression in HCV-infected women.

In conclusion, menopause appears to be associated with accelerated liver fibrosis progression in HCV-infected women, an effect that may be prevented by HRT.


This is all at your own risk.

One possibility would be to show this to docs and ask for HRT.
Its possible they want some kind of waiver.

I`d do a few phone calls talking at renowned liver clincs to a few specialists.
If they confirm this I would go ahead.


*hugs*

I have read something similar, but it was fro men and prostate cancer, but it was treated with estrogen.  I do feel a lot better since I started it 2 months ago.  It's like a cup of coffee in the morning.  But I don't know what exactly I am.  I have male parts in a female frame and never developed muscles like men normally do.  I got girly arms for life.
Thanks for digging that up.  Really, that's so good of you.  Thanks you, dear.
"hugs back"

They talk specifically of estrogen.
This is something you can show a doc and talk through with them.

Many transgender people experience some kind of relief with estrogen.
There are studies showing there are differences in brains of women and men so a mismatch before birth is possible, and many transgender people kind of feel a predisposition for estrogen.
They say they have a preference for it, and like it.

It might be a good idea to spread the dose a bit throughout the day, to avoid mood swings.
Some people take bioidentical estrogen sublingually, its more effective and avoids blood clots, and does not need to go through the liver with intake.

Another possibility is patches, they make for steady levels. It may be not as effective, and a few of them may be needed.
Half weekly estradot/vivelle dot have a good reputation... for sticking well and being small...

Another clean form of intake is weekly injections or implants.

Talk it all through with a doc.


*hugs*

Quote from: Late bloomer on April 10, 2016, 12:19:18 PM
Please go back and read my post.  You're young and you feel invulnerable.  I'm almost 64 and I have 3 months to 2 years left.   
Yes, you know about Hep C, but you don't know how badly it can mess you up inside.  I'm too far gone, dear, they did not catch me in time.  What does that mean? It means no liver transplant, no Harvoni or Sovaldi to stop the Hep C, and no cure for the cancer it caused in my liver.  It's a question now of how to spend what time I have left.

Now, with that and the little girl inside me that never got the chance to grow up, I need help. 
Have a heart.

Well I'm very sorry to hear that but in my defence your original post made no mention that your hep C had advanced to the final stages of liver cancer. Also, I'm 50, so not that young!!

Like I said, I'm not a medical person and I don't wish to give you false hope where there may be none, but the new meds can clear up the infection even in its most advanced stages and liver transplants, providing a suitable donor can be found, can literally be life saving. I know someone who had Stage 4 cirrhosis who cleared the virus after 24 weeks on harvoni and then went on to have a successful liver transplant in his late 50s and is now, only three months later doing well. But that was under the Australian medical system where a lot of costs are paid by the government. Anyway those issues are up to your health care team and, unfortunately, your financial situation.

To answer your question, how to live the last few years of your life, I suggest go for it. If you have liver cancer or even advanced cirrhosis you are unlikely to be prescribed oral or injected estrogen (regardless of it being bio identical or not) as it will stress your damaged liver too much. And while estrogen is great for a number of things and certainly helps the process of transition, it's not essential. There are, I suspect, many trans women who are not on estrogen for health reasons who are still living their life as fully transitioned women.

Quote from: Ms Grace on April 10, 2016, 03:36:22 PM
Well I'm very sorry to hear that but in my defence your original post made no mention that your hep C had advanced to the final stages of liver cancer. Also, I'm 50, so not that young!!

Like I said, I'm not a medical person and I don't wish to give you false hope where there may be none, but the new meds can clear up the infection even in its most advanced stages and liver transplants, providing a suitable donor can be found, can literally be life saving. I know someone who had Stage 4 cirrhosis who cleared the virus after 24 weeks on harvoni and then went on to have a successful liver transplant in his late 50s and is now, only three months later doing well. But that was under the Australian medical system where a lot of costs are paid by the government. Anyway those issues are up to your health care team and, unfortunately, your financial situation.

To answer your question, how to live the last few years of your life, I suggest go for it. If you have liver cancer or even advanced cirrhosis you are unlikely to be prescribed oral or injected estrogen (regardless of it being bio identical or not) as it will stress your damaged liver too much. And while estrogen is great for a number of things and certainly helps the process of transition, it's not essential. There are, I suspect, many trans women who are not on estrogen for health reasons who are still living their life as fully transitioned women.

I did say that it was (not treatable).  My bad for not being specific.
For the gory details, I had radioactive stuff injected into a vein they mapped to my Liver, and it was supposed to stay there.  It found it's way all up my right side to the top of my head, then drove my bilirubin through the roof.  The Liver, when it is damaged to End Stage Liver Disease, puts it's output wherever it can find a path.  Unfortunately, it made me so ill that it was 2 whole months before the levels went down.  And it didn't do anything to the cancer (carcinomas).  Then they tried Chemo drug, and it did the same thing to me, sick for months and nothing for the cancer.
The Spironolactone keeps the pitting edema and abdominal swelling down, the Furosemide keeps me urinating properly to expel the toxins.  Potassium to keep my levels from falling into danger zone.  Lactulose to keep the Ammonia from building up and putting me into a coma, of which I had to be hospitalized (comatose for 3 days).  Oxycodone for nausea breakthrough pain and Morphine Sulfate for background pain.  The Estradiol I take sublingually to keep it from passing through the Liver.  Yes, that's a lot of medications, but the alternative is to swell up until I croak, and that wouldn't take very long.
Eventually, the compensating drugs will lose their effectiveness, and that will be the end. 
Harvoni won't work for me, having Genotype 3A HCV.
Sovaldi plus Ribavarin will work, but neither Medicare or Medi-Cal will cover it because of my carcinomas (cancer).  24 weeks x 7 days/week equals 168 pills.  At $1,000 per pill , that's $168,000 for the treatment.  Being on Social Security Disability and my wife's Social Security won't even start to cover that cost.
That's my life, what is left of it.  I just don't know how many days I have left, but they are numbered.
I'm ok with that. 
What I'm not ok with is getting rejected by a Transgender clinic.  I didn't see it coming, and it hurts.

A post was removed.

I will not have unqualified medical opinion posted.

Good news and bad news.
First the Good news:
  I finally was able to get through to someone in Administration.  They promised to get the interviewer to call me and explain.  As it turns out, he hadn't paid enough attention to what I had written on the forms.  The mistake was him mistaking not wanting SRS for being not Transgender, so they had put me in the wrong slot where the Dr. was full up and couldn't take any more patients.  I got reassigned back to the Transgender Clinic.  What a relief!!!!

The Bad news: I have to start all over and wait another 2 1/2 months to begin.  If someone cancels out, I can start earlier, but am told not to hold my breath.