WARNING:Dangers of self-medicating

    • 10 posts
    November 25, 2004 2:04 AM GMT
    Hello girls. I am new to the site and these boards but the first thing I would like to do is tell you my story in the hopes of saving someone else from my fate...I am a 47 y.o. M2F TS...About 16 months ago I started taking anti-androgens in preparation for starting HRT and to just generally decrease some of my males drives etc...I was on them about 4 months and they produced the desired effects but then I started getting really tired and exhausted all the time and my family doctor did a blood test etc and determined that I was suffering from excess potassium and I stopped taking the anti-androgens (Spiro)...After 2 months I felt much better and decided to try again but this time watch the potassium I was taking in. At the same time I also started taking Estrofem..So I was self medicating on HRT for 2 months taking 200MG Spiro and 6MG Estrofem per-day for about 10 weeks and I felt totally fine..Then..BAM!..I suffered a massive heart attack and went into full cardiac arrest..I was dead..But luckily the EMT`s were present at my home when that part happened and were able to shock me back..I was in the hospital for a week and out of work almost a month..I damaged my heart pretty good and even now 6 months later I have gained back only 65-70% of normal function..I`ll be on 4 perscriptions the rest of my life..I know how badly we all want this and what it means to us..But PLEASE..PLEASE don`t be as stupid as I was and try this on your own..I survived by literally a minute or two....Anyway that`s my warning..I look forward to posting regularly and making some new friends...Sara
    • 10 posts
    November 25, 2004 3:56 AM GMT
    >>>>About your story, only question: did the doctors explained how hormones can have caused a heart attack? It seems very strange to me.<<<<

    I was in John`s Hopkins here in Baltimore..They didn`t seem to think it was strange at all..They said it was unusual that it happened that quickly but not unheard of...My one doctor called it a 10,000-to-1 shot..Clotting,heart attack and stroke are some of the possible side effects of estrogen treatment for women so you can imagine what the risk is raised to in genetic men who are taking 7 times the dosage especially when males are more at risk of heart attack to begin with..I`m not sure about where you are but here in my city there are commericals all thru the day from injury lawyers seeking to represent women who were on HRT and suffered heart attacks or stoke as a result..Unfortunately since I self medicated I`d have to sue myself...LOL
  • November 25, 2004 8:35 AM GMT
    It is good to warn people against self-medication. Although I started with my own hormones, I had a good blood checking already 4 months after the start of my HRT. I never had any negative side effects. All my effects were positive: I lost my depression and asthma, my blood pressure came down to normal, my hemoglobine rised up to normal, my liver results became BETTER and so on. And I feel healthier and stronger than ever.
    Some people can have negative side effects on their HRT, others can face positive effects. I belong to the latter group.

    Laura
  • November 25, 2004 8:37 AM GMT
    I can continue: the next blood checking was 14 months after the start of the HRT, this time I was already in "official care". The results had got still better.

    Laura
    • 10 posts
    November 26, 2004 2:02 AM GMT
    >>>What may have caused your heart to stop is...SPIRONOLACTONE. Hyperkalemia, or excess potassium may lead to heart arrest.<<<

    Would that have led to clotting in my one artery?..I had read up on Spiro and high blood potassium but don`t recall it mentioning that..I`m just going by what the cardiologist at Hopkins told me..I had almost every sort of test you can do and they were of the opinion my problems were due totally to my HRT..I didn`t ask to many questions as I was just glad to be alive at that point and was thinking of what to do to get better.

    Thanks for your input..I`ll read up on Spiro and Hyperkalemia more
    • 1083 posts
    January 5, 2005 11:28 PM GMT
    I have to agree with you, Nancy--

    I get my blood checked at regular intervals for a number of things, but that has been a habit since age 10 or so. (Something about being Epileptic...) Adding a check due to hormones was simple for me at the point I began. I can't imagine anyone taking that high a dose to start (6mg/day estrogen and another 200mg/day of spiro); most docs recommend you start low (like maybe 1-2 mg/estrogen and 25-50 mg Spiro and work up...if they put you on Spiro at all. After a year, I'm only at 3.125 mg/day of Premarin. (That goes to 3.75 mg/day soon. My max target is 5 mg/day, by year's end.) When I was looking at Spiro, I had a number of folks tell me to not go there; I haven't--and Sara's story is good reason why.

    Sara, dear--

    I'd be more interested in your physical state (work-outs, condition, blood pressure ranges, etc.) at the time of your stroke. Could there have been possibly some other factors? (Just curious--I'm NOT implying anything at all.)

    Luv 'n hugs,

    Dr. Mina Sakura
    • 10 posts
    October 19, 2005 9:53 PM BST
    what happened did she die in the end?
  • February 16, 2006 11:11 AM GMT
    Here's a small diversion from the main thread of the post but did you know warm water is absorbed by the body about 5 times quicker than cold water. And cold water, if cold enough, can actually cause the intestine to go into spasm causing some unwanted side effects (commonly referred to as "The Trots").

    If you want a good rehydration drink for warm conditions try mixing 50/50 fruit juice with water to 1 litre and add 1teaspoon salt. Tastes OK and works well. I've been using this whilst working in the tropics with no side effects.

    And remember it is the little things can cause the biggest effects. Such as taking OTC painkillers with Grapefruit juice can result in liver failure. Always tell you doctor about every medication you are taking, including OTC's as contraindications can occur in the wierdest places.

    Stay healthy

    Alex
    xxxx
  • February 16, 2006 11:42 AM GMT
    I agree you should not self medicate.
    But I find it a little bit exaggerated to say that hormones are so dangerous. Your body is already on hormones...if not female, then male. It would be far more dangerous to be WITHOUT hormones at all. Smoking and drinking is certainly more dangerous than hormones.

    Laura
  • February 16, 2006 1:06 PM GMT
    Before my HRT I had a slightly elevated blood pressure, too low hemoglobine and a bit too high cholesterole level.
    After a year of daily 6mg estrofem and 100mg spiro all of these were back to normal. Even my hemoglobine was better. And I had got rid of my asthma and depression with their medications.
    HRT has been for me the wonder cure that made me healthier than ever before.
    I agree that hormones work differently on different individuals, in my case they have been only positive.

    Laura
    • 10 posts
    March 4, 2006 9:13 PM GMT
    The following is a detailed description of the events on the morning I had my heart attack. I wrote this as a form of therapy for myself at the suggestion of a number of people and also as a historical record. It took me several months to complete this as it was very hard for me and I would stop often.

    I awoke the morning of Saturday the 28th of February,2004 at about 70AM. I was feeling perfectly fine although I had been rather exhausted for a few weeks which I attributed to the HRT (Hormone Replacement Therapy) I had been on. I am a Male2Female Transgendered individual and for 6 months I had been taking anti-androgen pills to stop my body from producing testosterone and for 3 months I had been on estrogen therapy. After I awoke and used the bathroom I returned to my bedroom and took my first estrogen tablet and anti-androgen pill of the day and then drank some water. I sat at my desk and signed on to my computer and read and wrote some e-mail and worked on editing some photos that I had taken at my monthly support group meeting the week before. I was feeling perfectly normal at this point. After I had finished that I turned my computer off and since it was still early and I hadn't dressed or showered yet (I was in my pajamas) I decided to lay back on my bed and conduct a little experiment. Since I was on the anti-androgyne pills I had lost most of my sex drive but occassionally I would masturbate not because I wanted or needed to, but simply to see how much function I still had in that area as it was often a subject of conversation on the TG message boards I posted on and I wanted to have the info avaliable to pass on to anyone considering HRT in the future. So I laid back on my bed and had just started, not even obtaining an erection yet, when I suddenly felt very flush and feverish. I had no real pain but felt an odd discomfort in my face,especially the jaw area and my chest. Naturally I stopped what I was doing and laid there a minute realizing I didn't feel like continuing my experiment. By that time I was sweating heavily. I reached up and ran my hand over my face and the water was just dripping off of it and I felt more discomfort in my chest. I got up and went into the bathroom and got a glass of water and drank it quickly then went back in and laid down thinking I was coming down with something..A cold..The flu..I wasn`t sure, but I wasn't thinking heart attack at all. I had always been in excellent health and exercised regularly doing both stretching and aerobic exercises. After I laid there a minute I realized something was wrong with me. I felt really odd. It`s very hard to describe but I felt really nervous and anxious and had the strangest feeling in my chest. I got up and stood there and suddenly the thought entered my head "This is very bad". I started to go downstairs to see if my brother was there and tell him what was going on and as I got halfway down the stairs I saw he was just going out the front door. He turned and saw me coming and gave me a greeting but continued on out. I stood on the steps hoping he would come back in and maybe see what was up as we often do projects together on the weekend but I heard his van start up and he left so I went back to my room. I sat in my chair a minute trying to get a grasp of how I felt and determine if it was indeed as bad as I thought before getting too concerned. By this time I was just consumed with this feeling of impending doom. My sweatiness had gone away but I had lightheadedness, anxiety, discomfort in my chest and now a dull ache in my left arm. I wasn`t short of breath but rather was breathing very shallow. For some reason I thought, "I`m dying". I've never spent a day in a hospital or been seriously ill in my life but something inside told me I was near death. I glanced around my room at all the things I had unfinished and said to myself; "Just let me finish these things and then I`ll die." I stood up and as silly as it sounds the only thing I could think of was that I would die and they would find my room so messy and I would be so ashamed. I grabbed a piece of notebook paper and a marker and hastily wrote a short note: "I`m sorry that my room is so messy. Please tell Nancy (My ex-wife) that I love her. Good-bye" I put it on the table and gathered all the money I had hidden in my room various places (Long story) and placed it on the table with the note so my family could find it.

    I went downstairs and walked into the kitchen where my mother was reading the paper and sat across from her. By this point I felt so badly that I was sobbing softly. She asked if I was OK and I told her no that I didn't feel good and that something was really wrong. I was feeling very light headed. I sat there a few seconds more and told her to call Herman (My brother) for me. As she dialed the phone I walked in and laid on the sofa in the living room. After she called Herman she went upstairs and awoke my nephew John who lives with us and told him to get up and come down and help me. (For the record he got up,went into the bathroom awhile then back into his room and by the time he finally arrived downstairs they were taking me out to the ambulance). Mom came back down and walked over to see how I was doing. I was feeling worse and again something in my head told me I couldn't wait for my brother to come home and I told my Mom to call me an ambulance. Looking back on it all later I am amazed that I instinctively knew how bad my situation was. Like I said, I had never spent a day in the hospital in my life and at 46 my worst injury ever had been a sprained ankle and yet for some reason that day I seemed to know I was dying and had very little time.

    My brother Herman arrived home shortly and asked me what was wrong and I briefly told him my condition. I was upset by this time and felt I was nearing the end and was crying a little and he told me to try and stay calm so I could tell them all what was wrong with me. (I think laying on the sofa and staying calm is one of the things that fell into place perfectly that morning and saved my life as it kept my heart rate down. If I had started to panic I am sure I`d have gone into cardiac arrest much sooner.) Not long afterwards I could hear the faint sound of a siren in the distance and Herman remarked that it sounded like my ambulance was coming. It got louder and louder and finally I heard it come to a stop outside my home and the ambulance crew came into the living room. By this time I was starting to see everything in a sort of hazy effect. There was an older woman carrying a clipboard..A man with grayish hair and a mustache and a black gentlemen who seemed to be carrying the bigger medical kits. (I learned later that the woman was a Paramedic supervisor and the white gentlemen was a firefighter/paramedic trainee who had been driving the ambulance. The black gentlemen was a Paramedic from a different Medic unit who was with them that day). The woman stood next to my brother and was asking him some questions while the two men got down next to me where I was laying on the sofa and began asking me what was wrong..How I felt..Etc. I described my symptoms to them as best I could because the feeling in my chest was hard to explain. It wasn't really a pain it was more that nervous uncomfortable feeling one gets when they are very upset. I told them I had been sweating a lot but it had stopped. That I felt dizzy. That I had a pain in my left arm. Mostly that I felt anxious and jittery. As they took my vital signs they asked if I was on any medication and I told them I took Spironolactone and Estrofem for transsexualism. The two men took my blood pressure and listened to my heart I believe and may have done some other things but I can`t remember now and finally they said that everything looked OK. I heard my brother comment that I kept rubbing my left arm and the one paramedic said that they would take me in just as a precaution but that they didn't see anything wrong. The woman then asked me about my health insurance and I said I couldn't remember the name of it (Even though I knew it well) and that the card was in my wallet up in my room. She said that was OK they`d get it later and the 4 of them started a discussion about what hospital I wanted to go to since we were located midway between two of them. I said I didn't care I`d go wherever they thought. My brother started telling them he didn't want to go to Bay View as he had had problems there whenever he took his former girlfriend there for things and they had a lighthearted exchange for a minute or so about the hospitals and decided to take me to John`s Hopkins. The whole time this was going on I was just laying there rubbing my left arm which was hurting more and my hazy fog seemed to be getting more pronounced. It`s hard to describe but I was viewing everything in a dreamy sort of way. I can only assume my heart was close to shutting down at that point and my blood pressure and oxygen levels were getting low. I suppose I should have been more forceful describing what was happening to me and asking for assistance but at that point I wasn't thinking to clearly and just reacting by instinct. Finally they asked if I was ready to go and I think I said yes and they asked me to find some shoes so I got up from the sofa (With no help) and went over and found the easiest pair of shoes to put on that were by the door. Once I had them on I waited until they reminded my brother where they were taking me. They asked if I could walk and I said yes and we started outside. When we got to the 3 steps heading down from my home to the sidewalk one of the Paramedics said to let them know if I needed help. It`s only a few steps from my house out to the street and I got into the back of the waiting ambulance. Once inside one of the men instructed me to first sit and then turn sideways to lay back on the little bed/stretcher thing which I did. At this point things become confused a little for me but from talking with my brother and nephew I was able to put together a good timetable of events later. After getting in the ambulance and laying down I seem to recall almost immediately sensing things start to become very "dreamlike" and the men's voices seemed to go farther away. I felt a sudden flush of my face and got that spinning feeling one gets right before you faint or black out. I said out loud "I feel like I`m going to pass out." and the one man who was the firefighter trainee said "You look like you`re going to pass out." which prompted the other man to say "Just lay back and relax and..." That`s all I remember hearing because suddenly I just was over come with extreme vertigo for a second and things went black. I had suffered Sudden Cardiac Death. I was gone. I experienced none of the classic "near death" phenomenon. I was simply in an empty black void. No bright light. No feeling of peace and contentment. Just nothingness. Like a deep dreamless sleep.

    (A quick side note: At this point something went terribly wrong. Appearently it took the paramedics several minutes to notice that I suffered Cardiac Death. I think it was the perfect timing of me lowering my head back onto the pillow as the man said, "Just lay back and relax and..." which caused them to assume I was simply following that direction when in fact I had gone into cardiac arrest. Plus they had already made the assumption that everything looked ok and I wasn`t yet hooked up to any monitoring equipment. Thankfully they reacted in time to save me.)

    From what my brother has told me after I was in the ambulance he had gotten in his van and gone down and made a U-turn in the street with the intent of following the ambulance to the hospital and was parked there waiting for us to leave. He said he suddenly saw the driver jump out of the ambulance and run around to the back and climb inside.A few minutes later a fire truck had arrived on the scene and several of the firemen quickly got off the truck and ran over to the ambulance and climbed in the back also. (One of the firemen took over driving the ambulance later) The next thing I remember was hearing someone calling my name from what seemed like a ways off but which I`m sure was right over me. I remember opening my eyes and staring at the ceiling and taking a few seconds to remember where I was. I still had that "dream like" feeling and also the feeling that I was right on the edge of blacking out again. There were more people crowded over me than I remembered seeing before and they all seemed to be very busy and were talking quickly among themselves. Someone lifted my head a bit to adjust an oxygen mask on me and I remember seeing one of the firemen standing at the backdoor of the ambulance looking in and he had such a serious concerned looked on his face. The voice calling my name asked me to answer and I said something but can`t recall what and then it started asking me if I knew where I was. My eyes darted around to verify I was where I thought and I said "ambulance". This became the pattern...Questions and one word answers..."Do you know what day it is?"..What day is it?.."Saturday". Apparently I answered all the questions satisfactorily. While this question and answer exchange was going on people continued to move around above me, lifting my arms, adjusting various tubes and wires.

    The feeling that I had earlier in my room that I was dying was even more pronounced at this time. Even though I had no idea at that time that I had just been shocked back to life the way everything seemed so dreamy and the sounds so distant plus the haste and manner of the people working above me told me I was right on the edge between life and death. It was the worst moment and feeling of my life. I could just sense in the air that these people were struggling to save me.

    My brother says the ambulance sat there 15-20 minutes after I got inside but I don`t recall that much time going by. I remember having to throw up a few times. Finally I felt the ambulance start to move and we were on our way. Several times during the trip I remember starting to close my eyes and drift off but that voice would start calling my name and was saying "Stay with me." So I focused all my energy on keeping my eyes open and staring at the ceiling. I remember thinking to myself; "If you close your eyes you`re going to die". The trip was fairly uneventful. I listened to the men in the back of the ambulance talking among themselves and talking on the radio to the hospital. I forget most of what was said but do recall several statements directed to me specifically, that I was "a lucky man" and "You scared us". The only other comment I recall was one of the men saying they had never seen anyone go thru defib while they were still awake and that it was "freaky". My only other thoughts during the trip was that all this wasn't really happening. As I said I had never had an injury in my 46 years beyond a sprained ankle and I kept thinking that this was all some horrible dream and I was wishing I would awake from it soon.

    Finally they announced that we had arrived at the hospital and I recall being wheeled in thru a door and down a hall to an elevator where we waited maybe 10 seconds and someone said that elevator was being worked on so the rushed me down a hall to another small elevator which seemed to barely contain us all. We came off that elevator and went down another little hallway and into what looked like an operating room. A couple of people slid me off of the stretcher and on to the operating table and a number of people asked how I was and various other questions about my health and what medications I was taking etc. One of the men told me they had to remove my bottom but not to worry as they would keep me covered up (Unknown to me my pajama top had been cut off of me at some point but I have no idea when. Perhaps when they had to shock me. They gave it back to me upon my release and I have it hanging in my closet. It was sliced up the left sleeve and down the left side). Finally one gentlemen leaned over me and asked me something and although I completely understood the question I just laid there staring at the ceiling and didn't answer. He asked again and again I heard him and understood but didn't reply and he called out that I was "non-responsive" and that they could go ahead. I heard and understood this also...The next thing I remember I was in a hospital room in the CCU later in the day but don`t recall going from the operating room thing to the CCU.

    I spent 5 1/2 days in the hospital and was out of work for 3 weeks. The main doctor overseeing my case while I was there told me that the echo test showed I had "a rather severe heart attack". I realize that I am very very lucky to have survived at all...From the moment I felt my first mild symptoms to the time I went into cardiac arrest was less than 25 minutes...There are so many things that could have happened that day... So many choices I could have made just slightly differently any of which would have resulted in my death....It was determined that the cause of my heart attack/cardiac death was blood clotting from my Hormone Replacement Therapy which had almost completely blocked my LAD...Hopefully I have not shortened my life considerably because of this...My only wish is that I can maybe save another from my fate and that I never ever forget what happened to me and how close I came and take life for granted.
    • 10 posts
    March 5, 2006 2:24 PM GMT
    Thank you for the informative reply Robyn..I mainly posted my story so as others could avoid some of my mistakes in the future and do things right...Unfortunately I was that 1 in 10,000 oddball one hears about as a risk factor when taking any medication..I`m sure we`ve all taken perscription drugs for a wide range of reasons in our lives and if you read the warnings or precautions they all end with the standard warning that in rare cases they can cause heart attack or death..But that is so remote and it says that on everything that after awhile we just shrug it off...I was in perfect health before beginning my HRT and had no standard indicators of heart disease..My cholesterol even on the day I was admited to the hospital was "excellent"..triglyceride`s were where they should have been..exercised 5 times a week..low body fat..never smoked..etc etc...The most important thing is that someone somewhere learn a lesson from my story and avoids becoming that next 1 in 10,000 statistic........By the way I once dated a gentleman who was in charge of the paramedics in my city (He`s since gotten a new job) and he felt the actions of the ambulance crew were negligent almost to the point of being criminal..But at least they did the right thing when it really mattered
    • 1912 posts
    March 18, 2008 2:25 AM GMT
    Jesse, DHEA came out years ago and still has not solved the worlds problems. I'm not sure if you are skipping past the bad stuff and only reading the "possible" good stuff about DHEA.

    This should tell you right off that DHEA would not be for the Transgendered MTF's anyways:

    It's not known whether DHEA is actually a hormone, or just a precursor ("raw material") for the hormones testosterone and estrogen. If it's a precursor, then taking supplements could be dangerous -- since estrogen and testosterone can both speed the development of cancers. Indeed, MacEwen says, the only side effect seen in his dog study was an increase in aggressiveness, as the dogs "tended to take on male characteristics toward other dogs." And that's a sign that DHEA is being converted into testosterone. Reference: University of Wisconsin-Madison scientists Ilene Kurzman and Gregory MacEwen

    Please notice the statement about taking on male characteristics. Sorry, been there, done that, last thing I want is a drug to bring that horror back.

    Love,
    Marsha

    • 1912 posts
    March 18, 2008 1:07 PM GMT
    Jesse,
    Without arguing whether or not natural medicine works or has a place in our lives I would like to point out that so often the big hype for natural cures is that the doctors and pharmaceutical companies don't want you to know about this stuff because of the money involved.

    I went to Hyla Cass's website and found her own Health Store, here is the link: http://www.cassmd.com/store.html She seems to sell cures for just about everything.

    Ok, first, the doctor issue. On the bottom of every page on her website is this posting:

    The content provided by this site is for informational purposes only and has
    not been approved by the U.S. FDA. This site is not intended to provide
    personal medical advice, which should be obtained from a medical professional.

    So let's rule out saving any money by not seeing a doctor. Hyla Cass seems to believe you should see one, natural or regular.

    Secondly, the pharmaceutical companies making money. To start with Hyla Cass doesn't seem to mind selling her own products which I assume is for a profit. But back to our issue of hormones, you are probably not aware that bio-identical hormones only cost $4-12 per month with a prescription in the U.S. at most drugstores. So where is the savings and what is the health benefit of non FDA approved meds? In places like the UK with national health care the prescriptions are covered. I will not endorse or encourage in anyway but hormones can be purchased online for reasonable prices as well. So again I ask what is the benefit of using a product such as DHEA when you can have proven meds dirt cheap?

    Marsha



    • 1912 posts
    March 18, 2008 10:05 PM GMT
    Jesse,
    You seem to like to use the word naysayers a lot. Just because others don't happen to agree with you on something doesn't make them naysayers. I think I clearly stated that I wasn't arguing whether natural cures had a place, just that proven medicines, as in this case estrogen, cost less than your natural remedy. I hope factual information like that does not make me a naysayer.

    I also listed info directly off your source's website regarding seeing a qualified heath care provider and it is similar to the warning label on DHEA purchased at a store.

    So please don't take any of this personally, for that matter, I hope you are right and outlive the rest of us.

    Love,
    Marsha
    • 1912 posts
    March 18, 2008 11:05 PM GMT
    ADD, now your talking my language, lol
    • 1912 posts
    March 19, 2008 12:15 AM GMT
    That is my signature line. I think if you read my profile it will give you a little better idea what that is all about.

    Love,
    Marsha
    • 1912 posts
    March 21, 2008 6:58 PM GMT
    Jesse,
    We are talking stopping testosterone production completely, then replaceing it with estrogen. DHEA is sold to men and women. Shouldn't they tell the men who buy DHEA that it is going to help them grow breasts, have thinner smoother skin that will bruise easier, loose muscle mass, loose libido, loose some body hair, add fat to butt, thighs and face. Somehow I just don't see your miracle product accomplishing that.

    The benefits of DHEA you describe sound fine, but I only see it as helping your biological hormone system. That is our problem, we don't want the testosterone benefited, we want it eliminated. I just don't see an over the counter product accomplishing our goals.

    Marsha
    • 1 posts
    May 2, 2008 7:48 PM BST
    Hello Sara

    I did self medicate for a couple of years 2000 - 2002 prior to seeing a gender shrink, and you are right to sound the warnings they are very dangerous and people often underestimate the risks.

    Spirolactone is dangerous if you do not observe the body's electrolyte levels and drink lots of fluids to lower your potassium levels. Avoid bananas as they are potassium rich.

    if you take spiro it's wise to gradually increase your hormone levels at 50mg increments over a period of say 3 months until you are at the correct dosage (ideally that prescribed by your doctor or physche). Going straight to 200mg will cause you problems.

    I was sorry to read of your health problems Sara , you have highlighted the fact that hormones are dangerous & should be treated with great care and understanding.

    If you do feel the need to self medicate for god's sake research research research and know what you are doing it may help to minimise the risks to your health. And as soon as you are able to ,get your blood work done and also try to get under a physicians care as soon as you can.

    Kate





  • June 16, 2008 4:18 PM BST
    fom what i've researched, the use of the patches greatly reduces the risks. the downside is, the patches are expensive
    • 4 posts
    August 27, 2008 5:25 AM BST
    Do you really have ADD? I am from Georgia as well by the way and I was diagnosed with ADD six years ago. My online experience has yielded information that quite a few people with ADD seem to have gender issues. A fact I find interesting. If this is true then the answer to the condition lies within the genetic makeup of the brain itself. Perhaps in the Pineal gland as females have a smaller one than males yet transgender people have been found post-mortem to have a pineal gland that is smaller than that of a typical male. I was just curious to know if you actually have been diagnosed with ADD. Karen
    • 1912 posts
    August 27, 2008 4:45 PM BST
    Karen, I have never been checked or diagnosed for ADD, but I feel I do have it. Realize when I was a kid nothing like that technically existed and now I am just use to it so life goes on. I can't sit down and read a novel or anything. I turn the page and I can remember very little about the previous page. I don't like watching long TV shows or movies. Most of my learning has been through interactive means, seeing and doing. I know a little about a lot of things because one thing i'm good at is researching information that I will be applying. Basically I need to be doing something, sitting drives me up the wall. Whether that is actually ADD I don't know, again it is just something I have learned to live with. Maybe it is just the water in Georgia, thing is I wasn't born here.
    Hugs,
    Marsha
    • 1 posts
    November 4, 2010 11:17 PM GMT
    Wow what a story! I also start hormones on my own but long after I had already had a heart attack! I cannot believe how stupid I was, but I figure since I was under a doctors care and getting blood tests I would be ok even though they were not prescribed. I finally came to my senses and stopped after about six months.

    I had my heart attack while I had my four small children with me. I drove to the hospital and went into full cardiac arrest ten minutes after arriving. It to is a long story, but I also started with a feeling of doom and denial about what was happening. I did have all the classic near death experiences. Took away my fear of dying. Glad we both lived to tell about it!

    Janis
  • November 6, 2010 11:51 AM GMT
    To reitterrate.
    Girls, there is not a "magic pill" that will make you become female overnight.
    If there was I'd be giving it away to the rest of my sisters.
    My point.
    Don't shove anything in your gob without knowing what it is please!

    I know that last sentence could be taken as innuendo but it's heartfelt.
    • 2127 posts
    December 26, 2004 11:50 AM GMT
    Hi Girls,

    Reading this thread has really frightened me. I am very glad that nobody had died yet (or have they). We would never find out if any of our members were to shuffle off this mortal coil.

    But if you had any other kind of ailment that required medication, you would never dream of having treatment without medical supervision.

    This is especially true in the case of hormones which we already know can have such very disastrous affects on the body.

    The saying, "A little knowledge is dangerous" and the words, "Playing with fire" come to mind.

    Please do think very long and hard before embarking on a self treatment course of hormones and please do consult a doctor who is a specialist in this field if you can before you take anything.

    Hugs,

    Katie x
    • Moderator
    • 1652 posts
    February 16, 2006 12:52 PM GMT
    Hi Robyn,
    Sounds you like you know what you are doing, anyone taking hormones should thoroughly research them, whether prescribed or not. I’m not a doctor (see disclaimer at top of page), but to me those levels sound very safe, and I’m certainly not going to question your sanity regarding your motivation for taking hormones, in fact I applaud it. Transition, to whatever degree, is a very personal thing and should be tailored to the individual.
    “We are a diverse group of people, each with our own slant on where we are and what we want to be. We all seek acceptance on that level.” Beautifully put, take note everyone!
    0.75mg Oestrogel is very low, yes it does sound virtually homeopathic but having said that it’s always a good idea to start on a low dose and gradually ramp up. 25mg Spiro 3 times a day is a “sensible” dosage, but I wouldn’t describe that as extremely low. As you’re probably aware you should check potassium levels when on Spiro, and avoid certain foods rich in potassium. Hyperkalemia is perhaps the biggest risk associated with Spiro, but easily avoided.
    Yes, topical is one of the safest routes for oestrogen delivery, so it sounds like you are doing all you can to avoid potential risks. About the grapefruit, I’ve read that it helps to inhibit enzymes in the liver responsible for clotting, and so is another safeguard alongside oestrogen, some say it also makes oestrogen absorption more efficient, I don’t know. I hadn’t heard before that there is a potential risk with painkillers, but they are something I never use. I’ll look into that though, as hopefully they’ll give me some painkillers when I have SRS! Actually I hate grapefruit, have to mix it with pineapple or sprinkle generously with sugar if eating it fresh.
    Being cautious is good Robyn, as long as you find a balance between caution and the desired results. Living and eating healthily is also wise, smoking, drinking, drugs – just say “No”.
    Have to say I’m disappointed with you GP being unable to even find anyone who can help, how hard can it be?
    Best of luck to you.
    xx
    • 24 posts
    October 20, 2006 7:59 AM BST
    Yeah, I was DIY (do it yourself) for about four months. Despite being overweight, I am in pretty decent shape and was sure I could handle it. I went on extremely low doses of spiro (50mg). Basically, there is one endo in the area who treats trans patients but she wouldn't see me without a therapist's okay. I read up on the SOC and found that was kind of an ethical thing for endos to take a patient on without a therapists approval if she is self medicating.

    Dangerous? Yes. Would I recommend it? No way. Would I do it again? Absolutely. I was actively suicidal before I started HRT. I read up on hormones until I was so sick to death about it, made sure to read labels so as to avoid excess Potassiumand exercised quite a lot. I was lucky to have nothing go wrong but I have no regrets.

    *hugs*

    Zoey
    • 734 posts
    March 17, 2008 10:16 PM GMT
    Hi Jesse!

    I know little enough about hormones let alone alternatives. I did have a quick look on wikipedia and base the following qoute on thier DHEA entry:

    '...given the lack of any proven benefit from DHEA supplementation, a 2004 review in the American Journal of Sports Medicine concluded that "The marketing of this supplement's effectiveness far exceeds its science...'

    I do remain utterly unconvinced that there is a viable alternative to hormones for those requiring them.

    Much love.

    Rae xx
    • Moderator
    • 1652 posts
    March 17, 2008 10:43 PM GMT
    I remain utterly convinced that there is NO viable alternative to hormones… (is that what you meant to say, Rae?)
    3 billion women on the planet at the moment have achieved feminisation from natural female hormones. It seems to be working for me too, why is there such determination to try unproven alternatives?
    There is no miracle plant, no need to tamper with the body’s other delicate chemistry; oestrogen and progesterone are all you need and will work just fine and be quite safe.
    This is the natural way, why choose anything else?
    xx
    • 734 posts
    March 18, 2008 8:30 PM GMT
    Hey!

    Jesse: '...I don't know why I get replies to my posts when folks don't read the suggested materials...'
    hunni, thats just the nature of debate and particularly forum based debate. There is a plethora of people on this board who are well versed in all matters medical and nutritional. Yours is another voice. And there are those who are not. You'll also notice the first thing I declared was my medical incompetancey. My intellect lies in other areas - I'm educated to degree level. Even so, in other threads, I've stated that I find all the medical stuff pretty hard going. So its highly unlikely that I'll read the suggested material just yet. Thats a factor that you should'nt take personally nor allow to force you to give up without presenting the readers with a fuller debate. No-one's saying your intentions are'nt good!

    Marsha, clearly, is well read on this topic and is simply presenting 'the case against'. And if its any consolation I won't be visiting the link she supplied [I'm still on dial-up, dammit!] nor read any volume she may advocate, just yet.

    So its over to you to bring your rebuttal...

    Much love

    Rae xx
    • 734 posts
    March 18, 2008 8:40 PM GMT
    Hey!

    Lucy, hun, lol, yes. You re-wrote my sentence to reiterate what I said!

    '...I remain utterly convinced that there is NO viable alternative to hormones… (is that what you meant to say, Rae?) ...'

    Rae: '...I do remain utterly unconvinced that there is a viable alternative to hormones for those requiring them...'

    My 'do' was an unnecessary underlining of my thought process. You then changed my negative 'unconvinced' to the positive 'convinced'. But to bring it back inline, you added the negative 'NO'. In my book the two sentences mean the same. I think I just like being clumsy!

    But I did have to think about it!

    Much love

    Rae xx
    • 530 posts
    March 20, 2008 11:04 PM GMT
    My two pen'th. (Or cents, if you prefer lol)

    I was prescribed etc., all by the book.

    Meds were taken orally. All went fine for a couple of years, then my BP started to soar. They did a 24hr continuouscheck on me, and it was in the region of 220/140, the latter being critical, and could well have killed me.
    So, more two pills to bring it down, and a switch to patches. I am now on patches and an anti-t implant.
    Plus I'm on now BP pills for life.

    So, even under supervision, these things creep up on you, and can kill!

    I will add, though I virtually don't drink, I did and do smoke, and am overweight, neither of which helped the situation, but...

    Take the 'mones, they can also save your life in another way, but I don't recommend DIY, and do get regular checks whatever.

    I was lucky...
  • March 21, 2008 2:40 PM GMT
    I've been self medding for about 4.5 years now. Juts before Xmas I decided that as the hormones didn't seem to be doing much apart from making the body hair disappear that I ought to have a blood test to establish the basic levels of natural hormones. So I took absolutely nothing for a full month and had the blood test. When the result came back the GP couldn't interpret them except to say that I have the estro levels of a normal woman and the testo level of a postmenopausal woman. But as to what that really meant about future hormone regime he couldn't say. So I asked about getting an endocrinologists report. I made an appointment with endo but two days later he cancelled saying I would have to wait until I got to Gender Clinic which might be a year or two away. So nothing I can do but go back on self medding with doses of 4mgEstrofem/100mg Sprio/5mgDuphaston and cross my fingers.
    Do ordinary patients get treated the way TS do?
  • March 21, 2008 2:51 PM GMT
    Regarding blood pressure: mine stayed quite low during the first 3.5 years I was self medding but then due to stress of not getting to gender clinic and getting harrassment from local yobs it crept up from a (theoretically) good 125/65 to 155/85 with pulse of 64. After the month off for blood test and then getting back on the self med dose it was tested and down at 125/65 with pulse of 64 so for me the self medding seems OK.
    I have never smoked, drink very little, try to eat mostly fruit and veg with zero junk/fried food and alternate liquids all day between tea, coffee, lemon tea and watered down lemonade - can't stand all that gas.

    Would a coffee only drinker be more at risk of high blood pressure and trouble from Spiro/hormones than someone who had more variety in liquids?
    • 2127 posts
    November 6, 2010 10:21 AM GMT
    It's interesting that Janis has replied to a thread started almost six years ago, back in November 2004. What a different place TW was then and indeed, what a different place the world was.

    However, this thread is just as valid today as it was then. Let me just remind anyone who is thinking about self-medicating that hormones are not innocent litlte things which can be taken safely by everyone. They are extremely powerful drugs which we believe (in an ideal world) should only be taken under the supervision of a medical professional who is both qualified and who has much experience in this area.

    This is not a game so please don't take chances with your life. Do it properly and you will be glad you did. The benfits of taking the time to persuade the establishment that this is what you want and need, will pay off.

    We realise that there are some people for whom, proper medical attention is not possible and who must self-administer. To them we would say , try your best to get help before your start your hormone regimen. Don't do this alone if your can help it.

    We would also remind you that the advice given on this site by your fellow members, does not not necessarily reflect the views of The Gender Society. It is the view of the individual member who gives the advice and it's given in good faith. Any action you decide to take having read these forums is at your own risk and we cannot be held responsible if things don't work out the way you hoped. Like I said, don't do this alone. Talk to your doctor first. Don't take chances and stay safe.

    Hugs, Katie x

  • September 13, 2011 10:59 AM BST

     


    I am going to self medicate hormones this year, at this moment in time I don’t have the information I need of the products to buy, but I will source them out. Can anyone help me, I am aware of the dangers; hopefully with your help I can keep the percentage of risk to a minimum. I’ve been waiting so long to decide what I want; waiting much longer is going to be torture. Please someone, help me.

    • Moderator
    • 1652 posts
    September 13, 2011 1:12 PM BST

    Until you have a very good idea of what you should be taking and the various risks involved you should not be self-medicating, even then many people will tell you not to do it.


    Where do you want to go with this? To live full-time as a woman? To have SRS? Do you know what's in store for you once you start hormones, of all the physical implications etc?


    Why do you want to take hormones?


    xx

    • Moderator
    • 1652 posts
    September 13, 2011 9:54 PM BST

    Hi again Samantha, there have been a few replies to your post on the home page about this. All of them combined I imagine would make anyone in your position feel that there is no option but to self-medicate! All these therapists, counsellors, nurse practitioners, sexual health units… talk of mental health, gender therapists at $250 per session… it must seem like a minefield out there. It’s different in the States, but the process here is really quite simple if you want to transition, get hormones, and receive professional help along the way. Assuming you want to transition fully: see your GP, tell him you’re gender dysphoric, he should refer you to a local psychiatrist or similar, this is just to ensure you have no mental health problems that may be “clouding the issue”. One of them will then refer you to a gender clinic who will guide you from then on. I was allowed to choose which gender clinic I went to, I chose Charing Cross. They will initially do blood tests, see you at regular intervals and before long prescribe you hormones. After 2 years they will refer you for surgery – SRS, tracheal shave, even voice surgery if you want it. After all that’s done you won’t ever need to go back, and your GP will look after your prescription and do annual blood tests as is normal with long-term use of HRT. I’ve been there, done all that, it’s pretty easy. Seeing my GP that day was the best thing I ever did – the beginning of the whole process.

    The question is, how far do you want to go? If you just want to experiment with hormones, maybe just grow a little breast tissue, that is an entirely different matter. Self-prescribing with those sort of intentions IS a minefield, and you really have to know what you’re letting yourself in for.

    There are girls here of all “persuasions”, talk to us, we can help you work out for yourself where you want to go if you aren’t already absolutely certain.

    Do not take hormones lightly; embarking on that road without professional help, advice and testing is a very dangerous route, both mentally and physically.

     

    xx


    This post was edited by Lucy Diamond at September 13, 2011 9:59 PM BST
    • 376 posts
    November 23, 2012 9:00 PM GMT

    Hi all. As Cristine has pointed out this thread , I thought I would bring it back to life as it has been over a year since Lucy's post. Sara's story is real life! Self medicating is not a game.

     Most of the trans women I have met are doing it and however much I tell them it is dangerous they all seem to think it won't happen to them. Well it doe's happen.

     I have never taken a hormone that has not been prescribed to me. I have regular blood tests and one day this happened.

     

     I was attending my appointment at Charing Cross , my specialist had my blood results in his hands and suddenly said "My god" I just said what? he replied your serum Oestradiol is over 1200 pmo! That at the time was french to me so I just said so what? He replied it is over double what it should be . Me being me said so doe's that mean I will turn into Dolly Parton? He said no it means you are going straight to get your liver and kidney functions tested. I did and they were fine and my dose was droped from 8mg of Climaval to 4mg per day along with 5mg of Finasteride.

     Next blood test about a month later it had droped to 700pmo with 600 being the ideal range. It continued to drop down to 400 so my dose could then be worked out "but" even to this day my levels do go over 600pmo but as my GP doe's not understand it I now control it and she is happy with me doing that but I do have blood tests every 8 weeks to work it out from . My testosterone on my last blood test showed no trace found! So I missed my 12 weekly Decapeptyl injection. My Doctor asked why I had not had it so I told her "I am more woman than you" She just laughed and said again well you seem to know what you are doing so go ahead untill the next blood test.

     

     It realy is a balance act where I am concerned "but again" If I never had the blood results I would have no way of knowing my levels to self adjust. Self adjusting "is not" self meding! It is me controling my hormone levels with the information I get from the blood tests.

     At the time my Oestradiol was over 1200 I was getting realy bad cramp in my legs , I never did mention it to the doctor and never linked it to my hormone levels I just thought it was my age. When my levels droped the cramp went away . It could have been the start of DVT , I will never know , all I do know is I am ok but without the blood tests I could be dead. Just don't risk it!.

     

     I know to some of you it seems to be the most important thing but in reality the most important thing is "just being yourself" and alive not in a wooden box. You all take care. Julia xx.


    This post was edited by Former Member at November 23, 2012 9:12 PM GMT
    • 34 posts
    December 5, 2012 9:23 AM GMT

    On reading all the posts, I would like to say I'm self medding but started on low dose of estrofem to begin with in fact started on 1mg then slowly increased to 2mg which I'm on now last year I started on Spiro again low dose 25 mg then slowly increased to 100mg which I took for 6 mths then slowly reduced it bit by bit until came of entirely, it as had the desired effect my breasts have developed as well has my hips and waist. my advice if your goning to medicated do it very gently monitoring your body that way if there are any effects you can reduce it back again. I still take 2mg of Estrofem which I,m informed is maintanance level which I got from a Post Op friend of mine.


    This post was edited by Christy Bradford at December 5, 2012 9:25 AM GMT
    • 6 posts
    January 10, 2014 2:24 PM GMT

    Hi sara that is a very strong story, to follow your advice i will start with estrogen only and avoid the anti androgen at least untill i run out of the first estrogen box, i have read that spiro causes a high increase in levels of potassium and that it can also cause allergy in some people, i think that it works slightly differently in each person, therefore each person should try the different types of pills and methods in order to find one that would have the least side effects

  • January 10, 2014 9:28 PM GMT
    Table 2. Drugs and Drug Classes Reported to Affect Erectile Function*

     

    Antiandrogens



    Estrogen-containing medications

    Cimetidine

    Gonadotropin-releasing hormone agonists

    Ketoconazole

    Spironolactone