Has anyone ever felt it was necessary to supplement their doctor prescribed hormones with ones purchased online, without a prescription?
The reason I ask is because it seems that my endo is playing the guessing game. I've been going for +6 months now and not once has my endo or general practitioner wanted to check my hormone levels. I asked why and was told that my hormones levels can fluctuate very dramatically. They believe that this is not an accurate way to judge if the hormones are at the correct levels. I have definitely seen the effects of the hormones so I can't complain but I'm still afraid that I will under-develop or receive very little benefit from the seemingly low doses that they will not increase, even when I tell them I think I need more because development has plateaued.
What am I to do?
Many doctors go more by the results you are feeling and seeing and telling them when you visit than by what a blood test tells them. My doctor is like this to some degree and I've talked to many others who have had the same experience with theirs.
The fact is, there is not a known "perfect" hormone level for HRT. It's pretty much a guessing game. Doctors are there to make sure we don't do anything foolish like giving ourselves way to much E, spiro, or T. If you are getting results, I wouldn't worry about it much and do as your doctor wants.
Couldn't you just request to have it checked for yourself?
I used to get my hormone levels checked every three months now its every 6. I have to get it done, otherwise my Dr will most probably stop my hormones completely.
I would definitely request to have this done.
Jay
Requesting to have my hormone levels checked will not change the fact that my doctor(s) see this is as useless information.
I went in for a 6 month check-up recently and asked if my AA's could be increased because I was still experiencing infrequent "morning wood". I was, curtly, told no. I then asked if it was possible to increase estrogen dosage. I was told that s/he would if s/he could. Someone else later brought me a new prescription for a DECREASED dose! And I already thought it was the lowest you could get. I can't help but feel that my doctor doesn't care or is giving me the run-around.
Given the transperson's nature to want more in less time and the medical stance that less is more, could it still be possible that my doctor doesn't know or care what s/he is doing? Has anyone else felt this way or experienced similar scenarios to make them suspect this?
I know I'm walking on ice with this and I'm not asking for medical advice but, is talking about endos, hormones, and their prescribing theories (or possible lack of) wrong as well?
My doctors listen to everything I tell them and ask me many questions about how I feel and if I'm experiencing any of the common signs that something could be wrong. We then get into how I'm feeling about the results I'm experiencing. If I ask to try something new they are always willing to listen to what I want.
A lot of the attitudes of the physicians is dependant on themselves. Most tend to run to the conservative side. If I had to guess I'd say too conservative.
Evidence available to MTFs is based on hrt dosages for menopausal women, often enough, and the "levels" shown by labs and reported in ranges of "prevalence" in the bloodstream are invariably based on women who have, from birth, ovaries and adrenal glands that produce estrogen as a default. Most I've met will tell you just exactly that.
And they tend to be fearful of going above certain fairly low limits.
Try doing some work on your own like checking out some of the mtf hrt list serves that are, as far as I am aware, free and open discussions. Even if you have to request membership they should, normally, be open to allowing newcomers into the group.
They can be very valuable, but as with anything you read on the web, take some of what's said with a grain of salt. Take other things you may read with a box of salt.
There's no point in compromising your health. But, there's no point in compromising your hrt either. But in large part it's going to be something you're going to have to do: the research. And make sure you can cite chapter and verse when you present to your endo/GP.
The research into actual changes and hormone dosages etc and effects and side-effects for mtfs is not voluminous, in fact it's rather meager and the list serves prolly keep up with what is there better than the doctors do. The docs are usually very busy making livings and research isn't usually a huge portion of it.
I did find that my doctors were willing to listen and read when I could hand them something factual or at least researched by another MD.
Nichole
yeah.. do what Nichole said. Print out research you find on the internet and show them. That is what I do when I want to be on a specific type of E.
i have seen this happen in the Jaksonville FL area as well. they dont know how to Rx for you and kind of guess or lower the dosage. its why so many local TS people are now adding extra hormones. not the most safe way but if you get your blood work done monthly or ever 6 weeks i see no problem with it
My doctor is one who goes by my reports of how I view progress. I just wish I could get him to agree that Orchie is medical nessiccary for me.
I ask for and received a script for Proscar, because of my balding issues.
Janet
idk why but some Docs feel like you should have an Orchie if you ever plain on having SRS?
I have Kaiser and they will not ok an Orchie unless it is medically nessiccary. ie Testicular cancer.
Therefore he will not authorize it. Damn HMOs.
Janet
OK, at the time I started to transistion, I did not have medical insurance. So I purchased HRT online, BUT I also found an Endo to run the blood tests every few months. I worked with him and adjusted dosages but I had control of the HRT. I believe that knowing the body estrogen and T levels is important at least in broad levels' IE too low or more likely too high.
However I had over 200 contact hours in anatomy and had read everything related to HRT prior to starting hrt. Having blood work every 3-6 months is really important as damage is done and you'll not know it till far too late, if you use too high a doage.
A lower dosage is always safer.
Beni
The only real test my doctor does is testing the liver, and PSA. He monitors my health but not my levels. I an hoping to get my lvrls tested just so I Know.
Janet
Quote from: Beni on April 14, 2009, 11:06:57 PM
A lower dosage is always safer.
Beni
It doesn't get more realistic and honest than that.
Believe me, I do not want to complicate my matters any further but, (trying not to be greedy) I don't want to sell myself short or allow myself to be sold so short that I am potentially missing out.
I am as cautious with medicine and as loyal to my doctor as you can get but given my new endo's attitude toward me and his/her flippant disregard of my previous endo's regimen with NO (N-O) explanation or concern how I feel....has me worried, and scrambling.
The very last thing I want to do is self medicate without my doctor's permission but, I will do whatever is necessary.
How serious is a lost and wasted year of hrt if the dosages are low enough to be ineffective???
There is also some evidence that using the lowest possible dosage also actually yields better results in the end, especially in breast development. (or so I've read and been told)
Gaaaah!!
Too many variables!
It's times like this that I turn to Donald Rumsfeld for insight...
["Reports that say that something hasn't happened are always interesting to me, because as we know, there are known knowns; there are things we know we know. We also know there are known unknowns; that is to say we know there are some things we do not know. But there are also unknown unknowns -- the ones we don't know we don't know."
"There's another way to phrase that and that is that the absence of evidence is not the evidence of absence. It is basically saying the same thing in a different way. Simply because you do not have evidence that something does exist does not mean that you have evidence that it doesn't exist."
"I don't know what the facts are but somebody's certainly going to sit down with him and find out what he knows that they may not know, and make sure he knows what they know that he may not know."] -Rumy
Hmm...
in the end a low dosage will work just as well as a higher dosage, it just takes longer (and it's a slow process either way). Most doctors will put you on a fairly low doasage as it's safer. With that said, Having the E and T levels tested are the only way to determine if the dosage is effective or not for transexuals. Otherwise they have a clue. People are diferent and a dosage that works for one may not be enough or could be too much..
Just checking Liver function while really important, gives no clue if the E level is 10-40- 150 or 800.. Normal female levels flucuates day by day through out the monthy cycle. It varys (on average) from 40 as one heads toward period time to 150-250 or higher as the days approch ovalation. really high female would be over 400.
Of course everyone is different, but gee getting the E and T levels tested will at least give you a ballpark idea of where your at.
Beni
Yes, it is a slow process. Maybe that's what I'm having trouble coming to terms with. I can't understand why anyone would want to be androgynous because I've decided that being "in between" or "in transition" blows real hard when your end goal is to be at either end of the gender spectrum. No more playing around with levels and what-not. Just done, finished, etc... ::Goes to hunt for the silver lining of yet another cloud in the sky::
I will request for my E and T levels to be checked upon the next doctor visit and will hold them to making the necessary changes in my dosages to improve or maintain those results. Does this sound good?
I'm due for bloodwork myself but at the moment I can't afford it. Maybe next month.. lol
When i had my initial visit with my endo he didn't want to test my T or E levels but i requested it, and he has been treating trans people for over 20 years. The reason i wanted them checked was for 7 months before i was self medicating. The results showed both T and E levels were in the female range and the rest of my results were normal. When i have my next appointment i guess we'll see what tests he runs.
Paula.
Ha yes, would agree that being in the middle is a pain, but the changes are slow even with a high dosage and the changes month to month are so minor. It's only when you see photo's of yourself from before and and say every two / three mnths that you notice the changes.
Part of the problem is we see ourself's everyday in the mirror and miss some of the changes. This in part as the minds eye has this photo of what we should look like based on memory. So we miss small changes till one day a friend takes a photo of you and there is only woman in the photo. Then you realize that things have changed.
Post Merge: April 17, 2009, 12:05:37 AM
BTW, the PSA test for MtF on E is not an effective test as the estrogen and spiro effects the reading on the PSA test. IE it can give a false negitive. Double that for post op. The good news is E greatly reduces the chances of prostrate cancer as it shrinks it and reduces its fuction. (Info from my surgeon, btw)
But greatly increases the risk of breast cancer. Studies are showing now that any woman (trans or cis) taking estrogen has a huge increase in their chance for developing breast cancer. That being said, they can remove my breast from my cold dead body cause I'm sure as hell not having it done while I'm alive.
Well It does increase chances in GG's and younger mtf when they get older. For late transitioners the odds are not that bad, if your on low doasages. For oldered girls the risk is small.
I have done a great deal of research on feminizing dosage regimens. This one is the highest I have seen recommended by a doctor: [urlhttp://www.transgendercare.com/medical/resources/tmf_program/tmf_program_regimens.asp]. This regimen is 4x higher than some others I have seen.
As for Internet purchases, I live in the US. I get the exact same drugs via New Zealand considerably cheaper than I can buy them here. Without a prescription, so my doctor doesn't even have to agree to allow me to take the dosage I want to take. I consult with the doctor, but I am not at her mercy.
For example, I know that it's riskier to smoke. My doctor wants me to quit. Some doctors would refuse to give a prescription to a smoker, and make her quit. Mine can't do that. I know the risk, and I decide whether or not to take it. It's my decision, as a free adult, to make.
Other people choose to let their doctor dictate to them. That's their decision to make, and I respect their right to make it. But, nobody should think that she must allow the doctor to dictate, and moreso, nobody should think that she cannot choose to take charge of her own care.
I am also going to add that there is one factor that researchers recognize leads to better outcomes across all diseases and conditions. That factor is when the patient takes charge of their own treatment. If you are a kite blowing in the wind, you do not get as good of outcomes as when you become knowledgable about your own condition, and negotiate with your doctor how to customize your care to fit you, rather than taking the standard one-size-fits-all treatment.
Link disabled. Violtion of Rule 1 of the TOS --- Nichole