March 25, 2007 3:36 PM BST
Hi Ivy,
Personally, I don’t think there is any harm in you asking, and I believe there is great benefit in sharing one’s knowledge and experiences with other TS’s. To my knowledge, my doctor prescribes one TS patient with female hormones – me. He doesn’t have much to compare with, but I do, so I don’t subscribe to the opinion that your doctor is the be all and end all of your hormone regime. Frankly, there is no “formula” for a good hormone regime, and so it’s something that should be discussed openly, rather than dictated. Anyway…
Estrofem 6mg: yes this is your estrogen, 17-Beta estradiol, ie bio-identical to human estrogen. It’s probably the safest option with the least side-effects. 17-B estradiol in gel or injectable form is even safer due to these methods of administration avoiding the “first-pass effect”, but if you take the pills sublingually this may help a bit. However, Estrofem is a good choice, and 6mg is a sensible dosage in my opinion.
Finasteride 5mg: Not specifically a testo blocker, it’s main effect is to block conversion of testo to dihydrotestosterone (DHT) at cellular level in the hair follicles themselves. This should help to prevent male pattern baldness. It may reduce testo but probably by a negligible amount. Interestingly, studies have shown that doses as low as .02mg have almost the same effect as 5mg. If you’re paying a lot for these, you will get just as much benefit by chopping them up into several pieces, and taking a tiny piece each day.
Spironolactone 200mg: This is basically your testo blocker, though that’s not what the drug was originally designed to do. It will partially suppress production of testo and partially block it at the receptors. 100mg per day may be plenty, depending on your age and testo levels to begin with. A reasonable dose of estrogen alone will substantially reduce testo, so the Spiro may be unnecessary after a few months. The most important thing about Spiro is that it will cause the body to retain potassium, which is potentially dangerous. You must cut out foods which are high in potassium, very important. Excess potassium leads to hyperkalemia which can be fatal. Google “potassium rich foods” or something and absolutely avoid all of these. (I’ve told you all this in another thread haven’t I!)
Medroxyprogesterone (Provera) : 10 mg daily for 10 days of the month: I’ve heard only bad things about Provera. A list of reported side-effects as long as your arm, including depression and mood swings, and potentially much more dangerous side-effects. Studies which state that progestogens are “dangerous” were probably based on medroxyprogesterone, but not all progestogens are the same…
All of them are synthetic except one – micronised progesterone (Prometrium, Microgest, Utrogestan), which, like 17-Beta estradiol, is classed as bio-identical. I personally would recommend this, but there are probably others which are preferable to Provera, though not bio-identical. Sadly it’s more expensive, which is almost certainly why more risky options such as Provera are prescribed, at least in this country.
10 days a month: Some say cycle it, some say don’t. I do. See how you feel. There are arguments for and against. I don’t know which carries more weight.
“Should I start taking the Proscar for a month to drop my testo levels before starting the Estrofem?”
No, as I’ve said above it won’t drop your testo levels by much, if at all.
Same question for Spiro then: No, in my opinion. The body needs hormones to function properly, reducing one without replacing it with another is not good for you. I don’t think it will help with feminisation either short or long term. Having a lack of hormones can only cause you problems. The (“all-knowing”) doctors at the main gender clinic in Holland insist that their patients take anti-androgens for several months before being allowed to start on estrogen. This may be some sort of psychological test to see how they react to losing their virility, I say it’s stupid and unnecessary and does not consider the patients’ health or best interests. Don’t treat doctors like they are some sort of Gurus. Their opinions and prescriptions vary hugely, who’s to say which are right and which are wrong? They don’t know everything about TS hormone treatment, they are basically experimenting. Learn as much as you can for yourself and listen to your body. It will tell you more than any doctor.
“At about the 3 month mark (which is the extent of my first prescription) what changes should I expect realistically? Have any of you reached a tanner 2 or 3 within three to 6 months?”
3 – 6 months? Good heavens, you have to be more patient than that! Well, you may be lucky and be a healthy tanner 3 within 6 months, but really no-one can tell you what to expect. Don’t expect too much. Full development can take 7 – 10 years, I’m nearly 2 ½ years in now and still growing (some say you won’t grow any more after 2 years, not true). I’d say I’m tanner 3, heading towards 4, but quite small. I’m a slow developer, but then I am over 40. If you’re over 30 then don’t expect to become a D-cup, but everyone is different, give it time and you will find out. It’s a long, slow process, so slow you’ll hardly notice the growth, taking pictures for comparison every few months might help to reassure you.
After 3 months you might start to notice softer skin, a hard lump directly under the nipple, some soreness or tenderness in the breasts, and maybe some increase in breast tissue. All these should be more apparent after 6 months or so though. I hope you’ll let us know how it goes.
xx
March 26, 2007 5:50 AM BST
Spironolactone is also a mild diuretic, it increases urine volume and water soluble substances are excreted at increased levels. One of the reasons for taking meds under supervision of a doctor is to have laboratory tests to ensure your body has the correct levels of various substances. Potassium, for example, can create deadly responses at high and low levels...and you are not likely to notice anything before your heart rhythm goes haywire. Fortunately, spironolactone is a potassium-sparing diuretic and does not promote potassium excretion. The point is that, when you interfere with the body's normal processes you can set of a chain reaction of imbalances. This is one reason why it's a good idea to take medication under a doctor's supervision. Hormones are like the catalysts of biochemical reactions in the body. A little can have large effects. If you insist on taking meds without medical supervision, be aware that there are risks. Don't let something like a myocardial infarction from arrhythmia or a coronary thrombosis make you an unsuitable candidate for SRS or other "elective" surgeries.
March 26, 2007 5:50 PM BST
I think it’s also important to remember how medical approaches can vary depending on where you are. Some of the points raised here, whilst being good advice, are not always appropriate to one’s situation.
I’m not disagreeing with anyone, but here are some examples based on my own experience.
Robyn says if your doctor doesn’t explain these drugs fully then it’s time to get a new doctor. An NHS GP doesn’t have time to explain these drugs fully; mine hasn’t gone into detail about the effects/side effects and potential dangers of the drugs I am prescribed and neither have the gender clinic. Indeed the gender clinic recommended I have anti-androgen injections of Zoladex (like all their other patients), without telling me how it worked or the associated risks. Having researched it I wasn’t keen, and anyway my blood tests showed a very low level of testosterone – why take risks using something I don’t need? As soon as I mentioned the word “Zoladex” to my GP he wasn’t keen on prescribing it (without any prompts from me), and he also agreed that it seemed unnecessary given my testo levels. The gender clinic don’t seem to take into account whether you need something or not, whether it is the right dose for you or not, they just have an “off the shelf” approach. Nor do they do any “preliminary medical workups to rule out any possible contradictions to taking hormones”, or anything of the sort in fact. Frankly, their policy of giving everyone the same regime is lousy.
Even if I wanted to change my doctor, how am I going to find one in rural Cumbria who knows more about hormone treatment for TS’s? It’s just pot luck, there aren’t any specialists around here. If you’re rich maybe you could find a private endo, I’m not, and I would no doubt have to travel for and wide to find one. My GP seems like a nice guy, and wants to help, that’s good enough for me, but I do believe you have to take some responsibility yourself, not just take what you’re given without researching it for yourself.
Brina recommends having blood tests done semi-annually, my gender clinic doesn’t, once a year seems to be enough for them, and they don’t seem to take much notice of the results anyway.
I do think it’s important, as I’ve said before, to have liver function checked, prolactin levels and so on. Watching estradiol levels is not necessarily a bad thing, I just don’t think they are the only basis for your dosage. Two people could have the same serum levels for several years, one might get good development, one might not, genetics play a part, but hormone regimes should be bespoke. What is right for one might not be right for another.
TS hormone treatment is not an exact science, which is why we should be promoting debate on the subject, and sharing our experiences rather closing the door on anyone who asks questions by saying “Only your doctor knows best…”
He doesn’t, but you should of course get all the medical assistance you possibly can.
I can pretty much guarantee that all of us here will be on different drugs and different dosages; which of our doctors knows best I wonder?!
A final note on orchies, (Brina’s had one so she recommends it). If I had to put money on one approach, I’d choose an orchie over anti-androgen treatment. Anti-androgens as a very general rule carry more risks and complications that estrogen therapy (if bio-identical). But an orchie is yet another surgery, always a risk, and a couple of years without either AA’s or an orchie (before having SRS) probably wouldn’t be of much detriment to anyone’s long-term feminisation. More importantly, my chosen surgeon absolutely recommends NOT having an orchie, and will refuse to work on some patients who have had it done a certain way. I know it’s not a problem for other surgeons, but one must be aware of this before making such a decision. In my case, my testo levels are very low, I’m not on a high dose of estrogen, and I will be having SRS this year. I don’t feel I need either AA’s or an orchie.
Your mileage may vary.
March 27, 2007 2:34 AM BST
I have been in nursing for35+ yrs. As a nurse and a patient I have learned that doctors are fallible. The best ones know it. The Physician's Desk Reference for prescription medications is inches thick and in small print. It contains thousands of Rx medications and variants. No doctor can possibly know it all. For this reason doctors tend to stick to a small group of medications that they know well. Medicine is a very complex field. Nobody can know it all. Doctor's make mistakes. So do nurses. I make sure that I know my own medications in detail. I carry a list of my medications in my wallet and have one in my home where my roommates can find it. I also carry my primary physicians name, address and phone number. They will check your wallet/purse when you are admitted to a hospital in an incapacitated state. I don't just take new medications without checking for myself. As has been mentioned, doctors, realistically, do not have time to cover all the problems with medications and the handouts from pharmacies cover only the most prominent and dangerous issues. Know your own medications. Make informed decisions on your own medical care. I have "fired" doctors for giving me incorrect informations. One was a professor at a prominent Los Angeles medical school. I have fired doctors for negligence. One owns a major Los Angeles extended medical practice that probably treats, at least, tens of thousands of patients. One of the doctors I trusted most, despite the fact that he missed a medical mismanagement of my case that predated him, handed me the PDR when I asked him a question. "I don't know, look it up for me." He was young and inexperienced but, by now, is probably an excellent, experienced physician. Find a doctor you can trust....then check his work for yourself. You are your best patient advocate. It's not unlikely that you can teach a doctor something he didn't know. A good one will listen and thank you. A good one will discuss your concerns. I keep written records of my case and hand the doctor copies of written information to add to my file. This ensures everyone is being careful to not miss anything on my case. They know I have documentation in case they don't do their job. It's a step up from "Pt. Smith's sister is a doctor/lawyer/nurse" notation in a hospital that makes nursing staff more alert and careful with that patient's care. Doctors and nurses are human and fallible.
Take responsibility for managing your care. Don't be bullied into a course of treatment that you are not comfortable with.
March 27, 2007 8:28 AM BST
You shouldn't be placed in that position, Robyn.....but it's your body. The unfortunate reality is that medical information has grown far faster than a human can keep up. There are a lot of references that you can learn to read. Online resources written in clear English rather than medical jargon. Nursing pharmaceutical references are simpler to use than the PDR and easier to understand. It's true, many people do not have the education or ability to understand these things. However, many people can with a little effort. There are some excellent books on medical issues that are published by groups like CONSUMER REPORTS. It's a start. I educated myself on TG/TS/IS issues online so that I would be able to provide my clients with informed care. It's taken a lot of personal motivation and time. I"m only beginning to learn the more technical aspects of it. Most caregivers don't have that time and, perhaps, motivation. It's not enough to take a class. It has to matter to the person providing care. So it's up to us to protect ourselves. If we have a specialty problem, we have to educate ourselves. If we can't.....we are in trouble.
It's sad that the help is not always there for people. I've had my county health care canceled, in the past, and been left without medical care and medication for months....even though the county had other programs. They didn't tell those of us in the program that they canceled that there was alternate care available. I was a nurse and spoke and read English. Most of my co-patients in the program didn't even read Spanish or speak English. God help them. I got my next care when my medical condition became an emergency and I ended up in an Emergency room, where I was referred to outpatient clinics....one was 7 miles from my home....my old program had been 35 miles away and hours of travel in each direction by bus....when there wasn't a bus strike. Fortunately, there are local, national and international organizations who can make the task easier and help those who can't do it for themselves. If you can read, this task is easier. If you have internet access and skills, it is easier still. This week I found a site for Intersexed persons, who are also transgendered/transsexual, that discussed personal and sexual relationships. If you hae a condition, there is probably a group providing help and information on it.
There are only three problems. Knowing the help is out there... finding it...and getting to it. After that it's easy.
March 27, 2007 12:45 PM BST
I look forward to receiving those flowers thanks Robyn, but I certainly won’t be going to Charing Cross for my SRS!
Being asked silly questions and not agreeing with some of their policies on hormone prescriptions and so on don’t really upset me too much, all I have to do is show them I am not a loony and they will give me all the referrals I require, and ultimately I will be legally female. Entrusting my body to a surgeon is an entirely different matter; that is something I will not allow others to decide for me. My surgeon will not be assigned to me, he will be chosen by me.
As with hormone regimes, these sort of things should be openly discussed in a community like ours. In their above posts, Wendy and Robyn tacitly agree with me; telling people to go and see their doctor is simply not sufficient. Between us, we have more knowledge of hormone treatment than a typical GP, and by discussion we highlight the fact that there are many different viewpoints on this subject. The opinion of a doctor, is just that – one opinion.
Everyone should seek medical assistance for hormone treatment, but I would just like to see us do more than tell people that.
At the top of every thread in the Hormone Forum it says: “Before embarking on any course of hormones you should consult your GP and demand to see a transgender specialist.”
Let’s see if we can add to that, rather than just repeat it every time someone asks a valid question.
Thanks to all those who are prepared to discuss the ins and outs of hormone therapy, it's hugely important and should not be a taboo subject!
xx
March 28, 2007 3:39 PM BST
This is a most interesting discussion and I agree Lucy, that we should try to offer more than just a disclaimer. But it is a very, very important legal thing that we have to do.
As the administrator of these forums and knowing that we could get into legal difficulties so very easily (which would mean the end of Trannyweb) I feel compelled to repeat the disclaimer which is printed at the top of the screen, as follows:
"Please bear in mind that our members, while possibly having had much experience of using hormones, are not necessarily qualified medical personnel.
Hormones are not sweets/candy. Many of their effects are irreversible and some hormone treatments can even cause diseases like cancer.
Before embarking on any course of hormones you should consult your GP and demand to see a transgender specialist.
Trannyweb can take no responsibility for any advice given in these forums. Any advice provided by members is given with good intentions and must be taken at your own risk. If in doubt, always consult a qualified physician before taking any medication."
The thing about GP's or General Practitioners, is that there is a clue in their title as to how much they know about specialist subjects like GID. That's why it's so important to demand (in a nice way) to be referred to a GID specialist.
You should always make absolutely sure that you know exactly what you are taking before you take it, and what the possible consequences are.
To borrow a slogan from a well known ad campaign, "Please don't die of ignorance"!
Now, having said all that, how can we make this forum more useful? Maybe we should invite a fully qualified hormone specialist to be the forum moderator??
Can anybody suggest any names of any experts they know who might be up for it?
Hugs,
Katie x
March 29, 2007 12:47 PM BST
Hi again Ivy.
You really shouldn’t feel frightened. You’re being very sensible about it all, the main thing is that you are doing your research, anyone who doesn’t do that is taking risks, hence my thoughts on open debate of hormone regimes and effects etc.
I took Spiro for a year and I can’t say I noticed any dehydration, though I always drink lots of water. I’m sure my tolerance to alcohol dropped to an all time low while taking it, so it’s quite possible that the dehydration effects of the Spiro and the alcohol combined caused me to suffer. Of course, one should avoid alcohol as much as possible while taking any hormones, and I think especially with things like Spiro. I rarely touch a drop these days.
I haven’t taken Provera. I suspect that the (micronised) progesterone I do take helps with more natural breast development; although still small, they seem to be a good shape, proportionate in width, and not at all conical or tubular. I personally think the addition of bio-identical progesterone is beneficial to a successful hormone regime. It seems to help my skin too. I’ve even heard it’s good for the brain, improves concentration and so on.
Finasteride is generally taken purely to prevent male pattern baldness, if there’s any of this in your family, or if you notice your hair thinning/receding, it might be a good idea to take it, otherwise perhaps you can live without it. It does I believe have very mild anti-androgenic properties as well though. I’m planning on asking my GP to let me try it next time I see him.
Estrogen is of course the main ingredient in your hormone recipe, and I’m glad you’ve not chosen Premarin or Ethinylestradiol, which carry much higher risks. For most people, low doses of 17-Beta estradiol are extremely safe.
If I were you I would keep the Spiro down to 100mg a day. Like I said I stopped after a year, I just didn’t need it, and in a few months my almost redundant testosterone factory will be closed down forever. Some say AA’s help with feminisation, I’m not so sure, either way if you’re planning SRS it’s only a temporary situation during which time a small amount of testo, if there is any, will help to keep your donor material healthy.
And, if I were you, I’d avoid Provera entirely. Some of my friends have taken it, thankfully they didn’t notice any of the bad side effects which reportedly are common, but when I ask if they think it’s helped they just shrug their shoulders. All of these friends have now stopped Provera.
To add to Katie’s post, I of course realise how important it is to have the disclaimer on the hormone forum, not just from a legal point of view. I fully agree with the wording of the disclaimer.
As to how we can make this forum more useful, I’d just like to see some of us make more use of it! I don’t know why some girls seem to be so secretive about their own hormone regimes. There is no, one perfect hormone regime, it’s a question of monitoring your own progress and tailoring your regime to suit. It’s not the advice of an “expert” I want to hear, it’s the experiences and thoughts from other TS’s. We’re told to see a doctor in the disclaimer, I’d like to see us add more constructive opinions to that, not just curtly paraphrase it.
Hormone treatment is arguably THE most important aspect to a successful transition, it should be discussed at length by those experiencing it, for the benefit of us all.
Does anyone else have any thoughts on the med’s that Ivy has mentioned?
Now, where are my pills…?
xx
When taking estrogens it’s important to be patient. If you change your dose you are not likely to see any particular changes to your body within 2 months. Adjusting your dosage like a yo-yo is not going to help at all. Increase dosages by small increments, and wait about 6 months before re-assessing unless you feel ill or anything drastic happens, in which case drop down again. If you’re getting some growth after every 6 months then maybe your dosage is fine, and doesn’t need changing.
It takes many years for your breasts to grow fully (much more than two as some TS’s seem to insist is a ball-park figure); don’t expect to see significant growth in a matter of days, or weeks, or months after commencement or changing dosage of hormones.
400mg is a high dose of Spiro, no doubt. Taking Spiro at all after the age of 40 may well be completely unnecessary; your testo levels start dropping anyway by that age, and even a moderate does of estrogen will dramatically reduce them further. I don’t take any anti-androgens and thanks to estrogen alone my testo levels are extremely low, and I’m only (!) 44.
“i recommend a ts knowledgeable doctor. there are none where i am…”
We’d all like one of those, there are none where I am either. Do your own research and work together with your ts unknowledgable doctor!
Ivy, your progress sounds normal. I noticed tenderness after a few days, visible growth is another matter, but you may notice slight changes to your nipples fairly early on. Those small bumps around the edge are completely normal, they even have a name which escapes me at the moment, They will probably always be there, but may vary in size and profuseness while your hormones are settling. I wouldn’t have thought a scar would affect growth much, if at all; it is however quite normal for one breast to grow faster, and ultimately larger than the other. The breast buds will also appear early on, but that doesn’t mean you will be able to see the breast growing very soon. It’s a very slow, very gradual process. Take measurements every 3 months, if you go 6 months with absolutely no growth maybe you need to change you regime. Expect measurements to go up by millimetres, not inches! The free “T-log” download available on this site can be quite useful for keeping track of everything.
I felt a lot calmer pretty soon too, probably a result of falling testo levels and hence a reduction in aggression and general angst. Maybe your body chemistry is finally agreeing with your brain gender identity!
“Doc said the progesterone was useless…”
To clarify: Provera (medroxyprogesterone) is useless, and may even be detrimental, micronised progesterone is completely different and I’m certain it helps in a more natural breast development as well as having other beneficial effects.
Micronised progesterone is more expensive, and this is the root of the problem within the NHS: They know medroxyprogesterone is bad, they know there is plenty of evidence both anecdotal and otherwise to suggest that micronised progesterone may be beneficial, but it’s so expensive they don’t want to prescribe it. As a result they simply say, “Progesterone doesn’t help.” Or they may unwisely prescribe Provera just to keep you quiet. Foolish, bureaucratic behaviour. Micronised progesterone is beneficial, in my opinion, Provera isn’t.
The doctors don’t know everything, and if they do they don’t always tell you!
Keep us posted with your progress, Ivy.
xx