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Thursday, October 4, 2012

Do It Yourself Hormones: Is this a good idea?

I had a nice discussion with a lovely woman from Florida who came to my workshop at Southern Comfort two weeks ago. She had been on do it yourself hormones for awhile, stopped taking them and went back on them, but after she heard my comments, she changed her mind and was going to look into getting prescriptions and medical monitoring of her hormones.

I am someone who is not an advocate of doing it yourself, also sometimes known as D-I-Y. But I am also someone who has tried do it yourself, albeit a long time ago and it was only for about 3 or 4 months. I hope that this article will help people to reconsider the D-I-Y route and seek medical supervision.

My personal adventure with D-I-Y does not contain a horror story and I am not going to paint dire pictures of certain doom, illness or death, but there are potentially serious health complication that the D-I-Y person should be aware of and at least take some reasonable steps to minimize the potential for harm that exists with D-I-Y.

I have said before and I will say again, hormones are not playthings. Misuse of hormones can lead to heart, kidney and liver damage. They have the potential to raise blood pressure and cause heart attacks and strokes or fatal embolisms. Some people are not candidates for HRT because of other pre existing serious heart problems.

One of the most serious problems is that the pharmacies that one can obtain these hormones from do not require prescriptions. There is no guarantee that the drug you have purchased was manufactured with adequate standards to insure that the two milligram estradiol tablet actually contains 2 mg of estrogen. It may contain 2.5 mg or it might not even contain 1 full mg if estradiol. You just don't know what you are really getting. When you get a perscription filled, you are buying hormones that have been manufactured under rigorous standards and can feel safe that you are actually getting what you expect to be getting.

Many people who do it themselves ignore the need for regular blood testing every 6 months. This is important for many reasons. One reason is this is how physicians determine that your organs are not being negatively impacted by what you are taking. It confirms that you are getting proper amounts of hormones so that you can get the most benefit from taking them. You just might not be getting the serum levels of hormones up to where they should be in order to be most effective! It allows you to be aware of your cholesterol levels which can affect your heart and arteries and your liver. Adjustments can be made with other drugs, you don't necessarily have to cut back or eliminate HRT with this information if things aren't in balance.

One of the many reasons people don't go to their personal physician is because they continue to experience guilt and shame over experiencing gender dysphoria. That is something that occurs frequently and needs to be addressed, I've been there. I had literally had an old country doctor who was getting near retirement. My own guilt and shame at the time prevented me from going to him and telling him about myself. My solution was to ask my gynecologist to refer me to a female doctor as I'm not keen on having men seeing my body. So now I have a female primary care doctor who I can go to and talk to without feeling ashamed of myself. Whatever you have to do to get rid of the guilt and shame to have a health care provider you trust, please do it. You deserve nothing less than quality health care!

Another thing to consider is that you may be paying way over what you should for those black market hormones. Did you know that a prescription for 90 days of the maximum therapeutic dose of estradiol is $36.00 (U.S.) at Walmart, Kmart, Kroger or Martins for example of stores in my area? That's $12 dollars a month! That's dirt cheap. Most insurance companies' co pays would be higher than that. So isn't it worth dealing with your fears to find a competent practitioner you can trust? Then you know you are getting what you are supposed to be getting. How much is Spironolactone? $18.00 for 90 days at the recommended highest dose. Some of us take progesterone and there is some debate whether it is at all helpful or not in breast development. Generic progesterone is also inexpensive. My gynecologist prefers Prometrium because it is bioidentical to women's natural progesterone. It is expensive though. The maximum dose runs me a bit over $100.00 a month. In 6 more months I'll make a decision whether this is benefitting me or not in terms of breast development. If after 18 months on it and the results aren't that much, I'll likely discontinue it.

"Sherri, you don't get it, do you? I live in BFE (that is a remote place in Egypt). There is no doctor where I live who I can trust to go to or is willing  to prescribe HRT. I know this for a fact because I have called around."

Ok fair enough, not all health care professionals are as enlightened as I am or as enlightened as the ones who take care of me. I'll grant you that.

At least, go get your blood work done every six months, Please, please, PLEASE! get your liver and kidney functions tested and cholesterol too, even if you choose not to tell the doctor you are doing it on your own. We have a term for that. It's called HARM REDUCTION.

Speaking of harm reduction, being a member of WPATH, we strongly advocate harm reduction. What does that mean? It means that anyone who comes to see me on DIY hormones goes to the head of the class. I issue a letter of referral and give my patient the names of two, soon to be three doctors in my area who are willing to prescribe HRT for trans people. I give this letter on the second visit.  Harm reduction is the overriding principle and it is a principle supported by the WPATH standards of care. I want my patients to be safe!

Please consider these thoughts when you decide whether you decide to go see a doctor or do it yourself. You only get one shot at HRT and it has to be done right so that all we have to endure pays off on our journey to be who we truly are! What good is it, if one ruins her health on the journey?


  1. I have been on legitimate hormone therapy for over a year and a half. But prior to that I was getting hormones, spirolactone, and something like avodart from a Thai pharmacy. According to my current endo, I was taking dangerously high estrogen doses. I did this for nine months.

    The result for me was a visit to the well of deep suicidal depression, my family hiding the keys to the gun locker, and a trip to the emergency room. The good of it is that I threw all that junk away and started therapy and then HRT under proper supervision. I am one person who barely survived self-HRT.

    Had to choose anonymous since I don't have any of the listed accounts!
    Lisa Wilson, Leesburg, VA

  2. This is important and excellent advice for everyone. DON'T TRY THIS ON YOUR OWN!

  3. I don't argue with the premise of your blog but they say timing is everything and today it is reported that 6 people have died and dozens in different US States, are seriously ill, by taking steroids from a reputable US drug company.
    Does anyone know what is in the little blue pills?
    Yet we must put our trust in them because they are our ticket to freedom.
    Now, regular trips for blood pressure, cholesterol etc, checking are or should be mandatory for any transwoman with half-an-ounce of common sense.
    Rachel King

    Some idiot in cyber land is telling me in a red oblong block that my URl contains illegal characters..... whatever that means, so i am yet again anon.

  4. When I transitioned the first psychologist diagnosed me with transvestic fetishism, the second and third called me a crossdresser and all three of them made it very clear that I had to see them weekly at $150-$175 an hour for up to a year before they'd even consider hormones and I had to be full time this entire time. I tried finding a sympathetic endocrinologist and was charged over $700 for a 15 minute appointment in which no tests were conducted. So I began DIY hormones, had I not I wouldn't be here today. My insurance won't cover anything trans-related. I've since gotten a letter for hormones but the only trans-friendly endocrinologist I've found charges 1600 for the first appointment and 600 every 6 months after just for the testing. No thanks, with no insurance I'll stick to DIY and get my testing done at labcorp for $70 and order from Inhouse.

  5. It's really sad that there are some doctors who will exploit people to make money, far and above the ususal and customary fee to see a patient who is transsexual. There are those of us who don't have the financial wherewithall to afford costs like those you cite from your own experience. It may well be worth filing a complaint against that endocrinologist with the Board of Medicine in your state as they take a very dim view of patients being exploited financially. That doctor may bill himeself as trans friendly, but his billing practices suggest otherwise.

    I'm very glad to know that you get your bloodwork done regulary. That's the most important thing you can do to make sure you stay healthy!

  6. I'm from the UK. Although I knew inside that I was transsexual my whole life, I struggled with it, put myself away and I tried to be "normal". It's not an easy thing to come to terms with. When, at 36 years of age, having tried everything to get away from myself and suffering from worsening anxiety and suicidal ideation I finally made peace with myself, the need to transform was overwhelming. I started hair removal. I saw my GP and asked for Gender Reassignment. I came out and changed my gender role through androgenous to female over a few months.

    It took 3 months to see a psychiatrist and, 8 months after seeing my GP, I am still waiting to be seen by a specialist center who would normally prescibe (6-8 months after the first appointment). The waiting time to see them is currently about 1 year. For me, my physical dysphoria was so overwhelming that I struggled to actually live day to day. It was so crippling: I struggled to bathe, to look in the mirror, to work. I had to... make it stop. I had to stop those male hormones which had broken me for the sake of myself and my family. I was... desparate. My GP would never prescribe (I didn't bother to ask, I'd know the answer) and I was stuck... waiting in a queue (I still am!). In order to function on a day to day basis I self-prescribed, having researched thoroughly. I actually work in health but calculated the risk of self destruction against that of liver damage and DVT's - it wasn't hard to see what I had to do. I informed my loved ones and they understood why I had to do it. I took a starting dose of a t-blocker and raised "e" by feel. The sense of relief was immense.

    After 4 months of self-prescribing and a finally having a diagnosis of GID (and a very lovely letter from my psychiatrist) I returned to my GP for blood tests for my own safety which my GP refused to take.

    Curiously I was later referred to my local Endocrinologists who were... absolutely wonderful. To my surprise they took me under their wing - they asked my GP to prescribe. Folowing bloodwork, the internet medication I had taken had surpressed my testosterone to normal female limits, and my oestrogen levels were within acceptable limits for a trans woman. I was lucky, I admit. But what I am trying to say is that, for me, hormone replacement therapy was life saving - I held and transitioned on the job and am making peace with myself at last.

  7. Rebecca, thank you for sharing this story. We here stand on the brink of adopting socialized medicine. This is illustrative of my concerns. I read an article from the British Journal of Psychiatry critical of the NHS because a woman with post partum depression was denied psychotherapy because she was deemed "too ill" to benefit from psychotherapy. This, in spite of every study ever done has found that BOTH psychotherapy AND medications are more effective than either alone. So she was placed at the bottom of an 18 month waiting list for psychotherapy. By the time she came to the top of the list, she was judged to be much worse than previously and required electroconvulsive therapy. OF COURSE, she was judged too ill to benefit from psychotherapy and went back to the bottom of that 18 month waiting list. The sad thing is, while ECT is effective for severe intractable depression, the price is high as it destroys short term memory. it is a treatment of last resort.
    Last year I attended the International Symposium of the World Professional Association of Transgender Health. Naturally the discussion turned to socialized medicine which was still being debated and contested here in the U.S. Several european surgeons touted the fact that gender reassignment surgery was covered under the socialized medicine system. Here's the catch: you have to wait about 5 years to have your surgery. Here in the U.S. more and more insurance plans are paying it. (Not enought though). Here you can have your surgery within 18 months max, ususally sooner, but you have to finance that yourself if your company will not cover it.

    As they say in the OLD SOUTH, You pays yo' money and you makes yo' chices. Neither system is all good or all bad. But be careful what you wish for. There is no "free" health care. You pay one way or the other financially and not all of the costs are monetary. Caveat Emptor.

  8. Sherri, you already know what I think about this. All I will say is that we all have brains, and we should use them.

    But, I do want to point this out. I hear so many people talking about getting appointments with and paying high prices to see an endocrinologist. Blood tests can be ordered and interpreted by your GP. That's about all they do anyway when you go to them. An endocrinologist should only be needed if there is a problem that your GP cannot deal with.