Self medicating in the UK

[Windy]

After a great deal of consideration (and severe problems with the NHS that have last nearly a year and STILL no first consultation!), I've decided to self medicate. Yes, I will keep my doctors informed, but by now I need to do something.

I have considered using Diane 35 (Cyproterone Acetate/Ethinyl Estradiol) and Progynova (Estradiol Valerate). What sort of dose would I need to see good effects? Has anyone else used these products?

Thanks so much!

[Andie Elisabeth]

AFAIK it's not allowed to consult dosage on this forum.

[Windy]

Ah...my apologies then. Is there somewhere I might go to find out the answer to my question?

[Aprilrain]

Windy, I would strongly advise against using Diane 35, it contains ethinyl estradiol and that stuff is bad ju ju. Plain old 17B-estradiol will do the trick and has fewer side effects Also Diane 35 contains a very low dose of Cyproterone requiring you to take much more than what it is designed for (birth control). I took Cyproterone for quite some time and it is wickedly effective.

PM me if you'd like to know what dose I took.

[StaceyJane]

Diane 35 is a birth control pill, it doesn't have enough estrogen to have enough of an effect from TS's.

[Kelly DeWinter]

Windy,

I'm going to say this once because many people do more HARM to themselves self medicating, then taking the time to finding a helpful medical practicioner. DON"T ! Now that i've given my opionion, have you considered emailing some other medical professional or starting a consult with a gender therapist ? Taking advice on meds online is like asking a your neighbor's kid how to perform brain surgery, because they discected a frog once. Please don't do this.

[JohnH]

If you must, go to TsDoItYourselfHormones on Yahoo.com. You have to join the group.

John

[Raquel June]

Progynova might work for you. The pills are too hard to take sublingually, so if you want to do that you should try a different EV pill. If you tell your doctors what you're doing they will probably be helpful enough to test your liver, which would be your biggest health concern. Diane 35 is 35mcg of EE, so it might not be as cost effective as one of the 50mcg EE brands. The best thing would be a fairly low dose of EV, though, until you get your clotting factors checked.

[Serana]

I'd agree with Raquel on this, I mainly stuck to Progynova when I wasn't taking Estrofem because I didn't see that much of a difference between the two. From teh place I used, Progynova was just more cost effective :D
I'd say that Progynova is a good one to go for, but the main reason I stuck to Estrofem for the most part was because of the ability to 'ghetto it' (cheers Raquel) and take them sublingually, and heavens yes it was much easier than taking Progynova in that method. The capsules really are just too hard and sitting for 25+ minutes with that under your tongue leave a small lasting taste.

Also, do keep a heavy eye on your liver. I was (stupidly) taking a rather high dosage, and it ended up with me having a Gamma GT reading for my liver of 85, so do be careful with taking too much, as it can be.. well, bad. Getting your clotting facotrs is also very important, I agree there, because it can be quite risky to be taking any type of oestrogen.

If you want to ask a few questions, feel free to send a PM my way. :)

[Maryanne_sa]

I does take some time to get an appointment in the UK, but if this route is difficult for you, you might consider Transhealth. It is a private Gender Clinic in the UK. I don't have experience of it, as fortunately I am on the NHS route.

It might be worth looking into. Here is the link.

http://www.transhealth.co.uk/

[Shelly Preston]

I have to say self medicating is never a good idea.

I am curious as to what you mean by keeping doctors informed.
Telling a doctor what your taking is only part of the information they need.
You will probably have to go backwards to go forwards if / when the nhs gets to help you. It is more than likely you would have to stop taking everything before they will treat you. Some wont even consider treating anyone who is self medicating.


*NOTE* Dosage advice should only be given by qualified medical personel

[Raquel June]

... It is more than likely you would have to stop taking everything before they will treat you. Some wont even consider treating anyone who is self medicating.

I am curious as to where you got that information.

Most doctors -- that is, most graduates from any medical school in the world, including nurses -- take some form of the Hippocratic Oath, or the Nightingale Pledge, or something along the lines of, "I will devote myself to the welfare of those committed to my care."

When a doctor knows someone is self-medicating, it is negligent for them to refuse care and send them off to continue to self-medicate.

Even the Standards of Care mention this. This line has been included even in the earliest versions I've seen, and it's still in the new SoC released last month:

http://www.wpath.org/publications_standards.cfm

"... In selected circumstances, it can be acceptable practice to provide hormones to patients who have not fulfilled these criteria. Examples include facilitating the provision of monitored therapy using hormones of known quality as an alternative to illicit or unsupervised hormone use or to patients who have already established themselves in their affirmed gender and who have a history of prior hormone use."

Page 34-35
The Standards of Care
7TH VERSION
World Professional Association for Transgender Health


It's kinda sad how self-righteous people are about self-medicating. People are going to self-medicate. They're going to get estrogen from New Zealand or India. They're going to do it because can afford $3/mo for estrogen even if they can't afford $100/week for a therapist. And maybe it's irresponsible, and maybe it could kill them. But maybe it could save their life. Because many of us know how much better HRT can make you feel mentally.

I'm not telling anyone to do anything, but it's naive and irresponsible to pretend people will listen if you say, "Just don't do it," and send them off to learn about it on some Yahoo Group full of maniacs injecting themselves. And it's an outright lie to say trans people are dropping like flies from blood clots or liver failure because of it. Those statistics simply don't exist. More of us die from complications of surgery. Many more of us die from suicide.

(I'm talking to everybody -- not trying to be harsh on Shelly)

[Shelly Preston]

Hi Raquel

I am not talking about refusing all treatment
Some will want a baseline standard so they can properly judge the effect the hormones are having on your body.
If you are self medicating the basline will have moved.

I would hate someone to self medicate and cause themselves more problems depending on their medical history.

I am sure in the vast majority of cases if will only be a temporary situation until they get the baseline,
and yes I do know people this has happened too before they could progess further down the path the were destined to take.

[Aprilrain]

Hi Raquel

I am not talking about refusing all treatment
Some will want a baseline standard so they can properly judge the effect the hormones are having on your body.
If you are self medicating the basline will have moved.

I would hate someone to self medicate and cause themselves more problems depending on their medical history.

I am sure in the vast majority of cases if will only be a temporary situation until they get the baseline,
and yes I do know people this has happened too before they could progess further down the path the were destined to take.

My experience is that my Endo did blood tests on me when I first saw him. At that point I'd been on hormones 6 months and my T was already suppressed which is the goal of anti androgens (which are not hormones BTW). Since my T was already in the range for a female what would have been the point in taking me off meds? just to let my T come back so he could see what it used to be like only to take it away again? That doesn't even make sense. I'll never know what my natural T levels where but that hardly matters at this point, what matters now is that my T and E are with in the acceptable range for a female, which is well established.

[Kelly DeWinter]

I am curious as to where you got that information.

Most doctors -- that is, most graduates from any medical school in the world, including nurses -- take some form of the Hippocratic Oath, or the Nightingale Pledge, or something along the lines of, "I will devote myself to the welfare of those committed to my care."

When a doctor knows someone is self-medicating, it is negligent for them to refuse care and send them off to continue to self-medicate.

Even the Standards of Care mention this. This line has been included even in the earliest versions I've seen, and it's still in the new SoC released last month:

http://www.wpath.org/publications_standards.cfm



It's kinda sad how self-righteous people are about self-medicating. People are going to self-medicate. They're going to get estrogen from New Zealand or India. They're going to do it because can afford $3/mo for estrogen even if they can't afford $100/week for a therapist. And maybe it's irresponsible, and maybe it could kill them. But maybe it could save their life. Because many of us know how much better HRT can make you feel mentally.

I'm not telling anyone to do anything, but it's naive and irresponsible to pretend people will listen if you say, "Just don't do it," and send them off to learn about it on some Yahoo Group full of maniacs injecting themselves. And it's an outright lie to say trans people are dropping like flies from blood clots or liver failure because of it. Those statistics simply don't exist. More of us die from complications of surgery. Many more of us die from suicide.

(I'm talking to everybody -- not trying to be harsh on Shelly)


Just because people are going to do something that is not safe, does'nt make it right to encourage them. There is the moral issue as well, to do the right thing because it's the right thing to do. Being on these kind of meds require medical monitoring. Will the same people advocating self medication be there if she requires hospitilzation later on, or suffers any other issues ?

[Bree-asaurus]

Just because people are going to do something that is not safe, does'nt make it right to encourage them. There is the moral issue as well, to do the right thing because it's the right thing to do. Being on these kind of meds require medical monitoring. Will the same people advocating self medication be there if she requires hospitilzation later on, or suffers any other issues ?

I'm all for doctor supervision and always recommend it before self medication, but HRT isn't rocket science... especially when you're young and healthy. She already said she was keeping her doctors informed. How many people do you know that have required hospitalization from HRT? And since when have all doctors prescribing HRT for transsexuals been super-informed when transgender HRT itself isn't very well researched?

There are pretty common dosages for HRT... and you can even get bloodwork done yourself without a doctor's prescription if you find the right place. And if she's keeping her doctor's informed, she can still have them monitor her levels and recognize potential issues.

[Kelly DeWinter]

no, self medication is not rocket science, ask any alcoholic or drug user what you can do with 'self help' pharmacology. ( i can here the postings to follow already) The OP has two thereads on the same topic, she states she is impatient and not willing to wait for medical cosultation, which she can get in time. After reading her other posts, I hope this doesent become another sad statistic that others follow, self med, self cosmetic silicone (industrial) injections. There are many threads on this site of sucessful transitions within the UK NHS, even those whu have had to wait for apointments, then there are the 'other' threads from those who have self medicated, then post a few posts about their medical problems, then you don't hear from them again. And sorry, as far as keeping her doctors informed, thats laughable, If she won't even wait to see a doctor, how can you keep one informed ? I really appologize for bing a bit snarky, but it just tears at the heart to hear of anyone going down the self medication route, no matter what the medication of choice is.

[Babeba]

Diane 35 is a birth control pill, it doesn't have enough estrogen to have enough of an effect from TS's.

Diane 35 is too low a dose of estrogen to be an effective birth control pill. It's acne medication, and a drug they give to teens whose bodies need a little help adjusting to menstruating on a schedule. (Just so we're clear! :))

I don't know any self medicating TS who have been hospitalized from medical complications to hormones, but I know several young and otherwise healthy GGs who have had emergency room visits because of hormone treatments for birth control. The worst was a girl I worked with when I was 16 and she was 19 or 20, she had a stroke from taking the pill.

[Bree-asaurus]

then there are the 'other' threads from those who have self medicated, then post a few posts about their medical problems, then you don't hear from them again.

Examples? I certainly haven't seen any of those threads. I mean seriously... I went to a doctor to start HRT and I still basically self medicate. I am more informed regarding transgender HRT than he is. Oh the horror! What should I do? Move to another city to find a doctor more informed about transsexual HRT than I?


And sorry, as far as keeping her doctors informed, thats laughable, If she won't even wait to see a doctor, how can you keep one informed ?

Seeing a doctor is one thing... finding a doctor that will prescribe HRT is another. Maybe she can't find a willing prescriber in her town or city??? I'm sure her family doctor is fully capable of ordering bloodwork.

[Melissa Jill]

And sorry, as far as keeping her doctors informed, thats laughable, If she won't even wait to see a doctor, how can you keep one informed ?

You can get an appointment with a GP within a matter of days, getting a prescription could easily take the OP a year at least. I was referred to CHX in February, had my first appointment a few weeks ago but I sincerely doubt I will be getting a prescription this year.

[Kelly DeWinter]

You can get an appointment with a GP within a matter of days, getting a prescription could easily take the OP a year at least. I was referred to CHX in February, had my first appointment a few weeks ago but I sincerely doubt I will be getting a prescription this year.

Now thats something I did not understand. You are saying that you can get an appointment to see a doctor, but then you have to wait for a perscription ? Whats the reason behind this ? In the united states you see a dr, AND they write perscriptions at the same time. are all visits to the doctor the same way in the UK ?

[Melissa Jill]

Now thats something I did not understand. You are saying that you can get an appointment to see a doctor, but then you have to wait for a perscription ? Whats the reason behind this ? In the united states you see a dr, AND they write perscriptions at the same time. are all visits to the doctor the same way in the UK ?

I literally have no idea why it is the way it is.

[Rianna Humble]

Now thats something I did not understand. You are saying that you can get an appointment to see a doctor, but then you have to wait for a perscription ? Whats the reason behind this ? In the united states you see a dr, AND they write perscriptions at the same time. are all visits to the doctor the same way in the UK ?

The NHS route to obtain HRT for gender dysphoria is very different to what I read from members over the water.

Over here, the general practitioners do not decide on the levels of your HRT if you are transitioning. There are a limited number of Gender Identity Clinics with specialist doctors who are also qualified in endocrinology. You never get the prescription on your first visit to a GIC - they want a second opinion to confirm the opinion of your assigned specialist. There is generally a wait of several weeks to a few months between first and second opinion. Hopefully on the second visit, the doctor will tell you that he will write to your GP "straight away" giving them the required dosages for whichever hormones they should prescribe. Unfortunately, in NHS-speak "straight away" does not have the same meaning as in English and there is normally about a 7 week wait for this letter. Only after receipt of the letter by your GP can the hormones be prescribed.

I agree that the wait for the first appointment seems intolerably long (in my case it was 48 weeks from referral because the incoming government had outlawed the clinic's previous target of 18 weeks). The temptation to go DIY can be strong, but I still don't encourage anyone to go this route.

[Raquel June]

Just because people are going to do something that is not safe, does'nt make it right to encourage them. There is the moral issue as well, to do the right thing because it's the right thing to do. Being on these kind of meds require medical monitoring. Will the same people advocating self medication be there if she requires hospitilzation later on, or suffers any other issues ?

There's a difference between encouraging someone to do something and telling them "Just don't do it" -- essentially telling them to F**k Off when you know they're going to go look elsewhere for answers.

Providing heroin users with clean needles is not encouraging them, but it is likely to save their lives. And I hesitate to make the comparison, because people who want estrogen are not in need of rehab.

Many people were brought up being told the horrors of smoking weed. But somehow Michael Phelps is a pot smoker and has won more Olympic medals than anyone in history. So now people know that the horrors of weed were all (well-intentioned) lies.

The horrors of self-medicating are lies, too. People who self-medicate are not dying of blood clots. Yes, people get blood clots. People can get blood clots after surgery. People can get blood clots in their arm after getting an IV. And sometimes people get blood clots from hormones -- often when they're smokers over the age of 40. But who is dying of these clots? Very few people. And evidence of anybody dying from self-medicating is nearly non-existent. The clots that lead to embolisms and death are more likely to be caused by the surgery to get a boob job than by the medication to try to grow them yourselves.

Yeah, bad things can happen. You could damage your liver. But you'll probably know something's wrong when your abdomen is hurting or your legs are hurting or when you're peeing orange or you're pooping white.



After reading her other posts, I hope this doesent become another sad statistic that others follow, self med, self cosmetic silicone (industrial) injections.

Really? You're going to compare self-medicating with hormones to a silicone pumping party?



I really appologize for bing a bit snarky, but it just tears at the heart to hear of anyone going down the self medication route, no matter what the medication of choice is.

And why does it tear at your heart? Do you know someone who's died from it? Or are you just worried because people tell you to worry but you haven't done any research yourself? I encourage you to research it all a little better.



I don't know what the right answer is.

I know taking testosterone is much more dangerous than estrogen. Yet there is a 200,000-member forum with 6 million posts on steroid.com. And these people are not telling each other not to do it. They're mostly telling people the real risks of all the androgens out there. And there are a lot of real risks. And in the end I'm sure they've saved a lot of lives because if that forum didn't exist there would probably be an AnabolicSteroidsDoItYourself Yahoo Group full of bad advice that people would go to instead.

I'm not saying CD.com should be cluttered up with tons of amateur endocrinologists giving advice. So I don't know what people should be saying. But at this point it's already cluttered up with people repeating lies about the horrors of estrogen.

I don't know what the right answer is, but telling people "Just say no" is definitely the wrong approach.

[Raquel June]

Diane 35 is too low a dose of estrogen to be an effective birth control pill. It's acne medication, and a drug they give to teens whose bodies need a little help adjusting to menstruating on a schedule. (Just so we're clear! :))

The primary use of Diane 35 is as birth control. It is the same dose of EE as most birth control (and higher than some like Yaz).

But birth control pills need a progestagen, too. Diane 35 uses a very low dose a Cypro because Cypro has progestagen-like effects. Since Cypro is also an anti-androgen, Diane 35 helps prevent acne. But it's still effective as birth control.

For some reason it's controversial in Canada. They must consider Cypro to be more dangerous than the progestagens that are used in other pills.

[Kelly DeWinter]

There's a difference between encouraging someone to do something and telling them "Just don't do it" -- essentially telling them to F**k Off when you know they're going to go look elsewhere for answers.

Providing heroin users with clean needles is not encouraging them, but it is likely to save their lives. And I hesitate to make the comparison, because people who want estrogen are not in need of rehab.

Many people were brought up being told the horrors of smoking weed. But somehow Michael Phelps is a pot smoker and has won more Olympic medals than anyone in history. So now people know that the horrors of weed were all (well-intentioned) lies.

The horrors of self-medicating are lies, too. People who self-medicate are not dying of blood clots. Yes, people get blood clots. People can get blood clots after surgery. People can get blood clots in their arm after getting an IV. And sometimes people get blood clots from hormones -- often when they're smokers over the age of 40. But who is dying of these clots? Very few people. And evidence of anybody dying from self-medicating is nearly non-existent. The clots that lead to embolisms and death are more likely to be caused by the surgery to get a boob job than by the medication to try to grow them yourselves.

Yeah, bad things can happen. You could damage your liver. But you'll probably know something's wrong when your abdomen is hurting or your legs are hurting or when you're peeing orange or you're pooping white.




Really? You're going to compare self-medicating with hormones to a silicone pumping party?




And why does it tear at your heart? Do you know someone who's died from it? Or are you just worried because people tell you to worry but you haven't done any research yourself? I encourage you to research it all a little better.



I don't know what the right answer is.

I know taking testosterone is much more dangerous than estrogen. Yet there is a 200,000-member forum with 6 million posts on steroid.com. And these people are not telling each other not to do it. They're mostly telling people the real risks of all the androgens out there. And there are a lot of real risks. And in the end I'm sure they've saved a lot of lives because if that forum didn't exist there would probably be an AnabolicSteroidsDoItYourself Yahoo Group full of bad advice that people would go to instead.

I'm not saying CD.com should be cluttered up with tons of amateur endocrinologists giving advice. So I don't know what people should be saying. But at this point it's already cluttered up with people repeating lies about the horrors of estrogen.

I don't know what the right answer is, but telling people "Just say no" is definitely the wrong approach.



Sure, blood clots and cancer are perfectly acceptable with doing your own medication regimes. Not to mention the anxiety and depression and mood swings that occur. We don't live in the dark ages where doctors make draconian decisions and pass out leaches and as far as "I'm not saying CD.com should be cluttered up with tons of amateur endocrinologists giving advice", thats exactly what is happening in this thread and every thread that broaches the same subject. The OP can get exactly what she wants from a medical proffesional with a bit of patiences, unless there is a medical reason why she should not. As usual this thread is degenerating into those who push self medication and those who caustion seeking professional help.

[arbon]

People can be responsible for their bodies and making choices about their healthcare.

If she is going to self medicate then it is good that she is asking and trying to learn as much as she can.

[Nigella]

Lets make this clear.

This forum does not under any circumstances promote self medication. That does not mean that individuals do not have the right to do as they wish with their bodies. The majority of the membership who are taking hormones have done it through seeking professional advice. They know what they are talking about as they have had, presumably, a good talking to regarding both the benefits and pitfalls of taking Hormone Thereapy medication.

The web is a wonderful place, full of information, however, how many of us can really pick the wheat from the chaff. Any member who asks about self medication can expect to be told don't do it, it is spoken from years of experience. I am pleased that the vocal majority are those who have sought medical advice.

So in conclusion, the majority of the membership would always advise, SEEK PROFESSIONAL ONE ON ONE ADVICE. However, that is only advice, it is up to the individual to choose the path they think is right for them, but it is unlikely to be supported by many if that choice is to self medicate.

[Raquel June]

Sure, blood clots and cancer are perfectly acceptable with doing your own medication regimes. Not to mention the anxiety and depression and mood swings that occur. We don't live in the dark ages where doctors make draconian decisions and pass out leaches and as far as "I'm not saying CD.com should be cluttered up with tons of amateur endocrinologists giving advice", thats exactly what is happening in this thread and every thread that broaches the same subject. The OP can get exactly what she wants from a medical proffesional with a bit of patiences, unless there is a medical reason why she should not. As usual this thread is degenerating into those who push self medication and those who caustion seeking professional help.

The Dark Ages? Nicely put.

Do you know why it's called the Dark Ages? Because it was the Intellectual Dark Ages. Kinda like the opposite of the Age of Enlightenment.

Do you know that birth control increases your chance of a stroke by 30%? Would you like to explain the risks to women and allow them to make an informed decision, or perhaps you'd like to outlaw birth control and tell people just not to have sex?

Did anybody say you shouldn't talk to your doctor? Did anybody say you shouldn't take every precaution you can? Who's trying to take us back to the Dark Ages? Just you?

Do you actually want to talk about the risks?

Cancer? Yes, estrogen raises your chances of breast cancer. Testosterone raises your chance of prostate cancer. If both are low, it raises your chances of osteoporosis. So which type of cancer would you prefer?

Blood clots? Have you read any studies concerning blood clots?

Anxiety and depression? I know many people who attempted suicide multiple times before they started HRT. I've gone crazy and ended up in the hospital a couple times. Isn't half the point of HRT to get over anxiety and depression? You're making HRT sound like a pretty horrible thing.

I've taken stuff that made me depressed. I was prescribed Lexapro and it made me feel horrible. My doctor said the headaches and the ringing in my ears would probably go away after a few weeks. They didn't. So I stopped taking it.

It looks like people are being fairly objective in this thread. Why are you so offended?

You really need to focus on your argument, because at this point you're pretty much bashing estrogen entirely. Yeah, there are risks with estrogen, but have you noticed that trans people tend to want to accept those risks? So shouldn't we let people be as informed as we can?

Of course we should all go see the doctor. I recently got health insurance after not having it for 10 years, and I think it's awesome to be able to go to the doctor without waiting for hours in the emergency room or saving up the money to get a clinic to give me a liver panel!

I'd even like to take it a step further and say that just finding a random doctor to take you really isn't good enough. You should find the best one you can. I've known people who went to doctors who have seen tons of trans patients, but still the doctor gave then an absurdly high dose of Premarin. And I've known many people who were given a dose of EV so low that it had no hope of doing anything for them. We should all go find brilliant doctors who are willing to work with us and find the best treatment. Unfortunately a lot of people really can't get to a doctor who is experienced with trans issues. And some can't get to a doctor at all.

[Kelly DeWinter]

OK "you win" , In fairness to the OP I'd rather not see this go down the road of being hijacked into one person hammering on another because they have an opinion. No one is 'offended' or is 'bashing estrogen' or saying HRT is horrible. If you have read my posts you'll see I am very supportive of anyone who decides to transition and would wish that they do so in the safest manner possible. Please keep this from being personal. My opinion is and allways will be, that when it comes to medical treatments that one should allways go to a medical professional rather then self-medication. When you see people posting on a website "I take this product in this quantity" it makes me shudder. Why would people do such a thing without being qualifed to take a personal history, to find out what their current levels are, or to find out if they are on any other medications that may conflict with what they want to do. So lets leave it at that, OK and let the OP have her thread back. In the end the OP will choose to do what ever she will do, and she will either be safe and do OK or she will not.

[Aprilrain]

why is it always the people not on hormones who cry the loudest about their dangers?

[Kelly DeWinter]

why is it always the people not on hormones who cry the loudest about their dangers?


Wow, that's just mean .... and inaccurate.