I've been waiting for my endo's letter for a month (they had the wrong address ^^'), and now, it has arrived. With awful news.
Let me make you an approximate translation
Quote
Hello XX,
Your feminising hormone levels are 446 pmol/L according to the results of November 26, 2012. Those are the expected levels with your medication. If, however, you do not take medication for 24 hours, the level goes down to 157.4 pmol/L, and this is expected.
We will under no consideration increase the estrogen dose prescribed on March 26, 2012.
I do not authorise you to consider me stressed or "not stressed". [No idea where that came from; probably some misunderstanding when passing messages via his secretary.]
Good luck in your journey.
[Name, signature, titles, blah blah.]
Thing is, as you can see here (https://www.susans.org/forums/index.php/topic,130542.msg1034764.html#msg1034764), the 450 pmol/L are not valid. According to another endo who sees trans people in Montréal, you should never do a blood test when Estrogel was applied, especially on the arms, during the last 24 hours. And arms should be washed carefully, because gel residues can seriously fake the results. And I told them all that! But it was simply ignored.
The accurate results should be 157.4 pmol/L, according to this. And this sounds completely logical, as I've barely had any effect whatsoever from hormones since I've started them.
And this is coherent with my dosage, which is the recommended one for menopause. The very same endo who claims my situation is normal said himself that with this dose, expected values are ~200 pmol/L.
I've had it with his contradictions, stubbornness and lack of listening. I'm going full-time in June, and geez, it's just like I hadn't been taking anything other than anti-androgens! I think what he's doing is unacceptable. I feel treated like poop, and it has to stop ASAP.
What should I do? Complain to the hospital? Call the Montréal endo so he calls mine and reason him? I don't know at all, but I'm completely desperate and enraged. It's incredible that after all I've gone through, I have to fight doctors, of all people, to be treated appropriately.
An important detail to note is that there is no endo whatsoever in my area. This one is 2.5 hours away, in Québec City, and he's the only one there. There are two endos who will see trans people in Montréal, but that's 5 hours away (making the back-and-forth trip in one day nearly impossible, raising the need to pay for lodging on top of my mother not wanting to bring me so far, thus bus tickets), and I heard they both have waiting lists that exceed one year.
I'm completely enraged. Even now would be really late to be getting a proper hormone dose, considering full-time is in June. Imagine now, starting to try to find a solution. My life is a nightmare.
Maybe if you take the 5-hour trip? Get a second opinion, and use it to change your local endo's mind?
It takes around 10 years to train as an endocrinologist. If you're wanting contradict someone like that, you'll need very hard facts, otherwise they will consider you an "armchair expert" and not take a single thing you say seriously. If you disagree with his treatment plan, seek a second opinion. Challenging a medical professional's opinion when you have no relevant training or education just isn't going to work (and no, asking other trans people or reading articles online doesn't count). The principles of Democracy don't apply when dealing in the expert opinion of highly educated and specialised people, meaning, his opinion is infinitely more important and informed than yours. If you want medicine that is provided by someone with an equal amount of medical training as yourself, go see a homoeopath or, study for 10 years and become an endocrinologist
Why do I feel like I've deeply offended you, Isabelle? You're being awfully incisive.
Anyway, I'm asking for what to do. Just going over to the city... it's not that simple. I need to get a referral to see that endo first, which is a good 4 month's worth of waiting list, according to Tessa, his patient.
Besides, even though the opinion I've brought him wasn't directly given to me by dr Brossard himself, another of dr Brossard's patients repeated to me what he said, and claims to say to all patients: when you take transdermal, you stop it 24 hours before the test and wash your arm well, or else the values are very much faked.
I would have liked it to be enough for my endo to at least consider what I say, but no. Looks like I need him to directly hear from the other. That's what makes me angry. Because I shouldn't have to fight to put sense in a doctor's head. He's supposed to know all of this. I don't understand why I have to not only teach him that fact, but fight for him to accept it. Especially since he isn't even making sense in what he says.
Maybe you could ask your endo to let you take pills sublingually instead?
QuoteWhy do I feel like I've deeply offended you, Isabelle?.
Nope, not offended :) just trying to explain how your endo probably views it.
Well, if you don't take the trip, in 4 months where will you be? Same as where you are now, but no further along in transition.
If there's a one year waiting list...GET ON IT. Make it happen. Or else...in one year, where will you be?
Good luck!
.
Quote from: Isabelle on January 14, 2013, 12:33:45 AM
Nope, not offended :) just trying to explain how your endo probably views it.
Okay, sorry. I guess I was sort of oversensitive. Do you think, if I switch over to pills again and I show him in plain daylight that my values are really low, he'll be convinced? (I'd want an apology, but I'll do with just a prescription. xD)
Quote from: Beth Andrea on January 14, 2013, 12:39:38 AM
Well, if you don't take the trip, in 4 months where will you be? Same as where you are now, but no further along in transition.
If there's a one year waiting list...GET ON IT. Make it happen. Or else...in one year, where will you be?
Good luck!
Yeah, well, there's this, and I will do it if I don't find an alternative. But I'm still hoping to find another, faster, solution. Like convincing the current endo that my levels are indeed very low. I've had a suggestion of calling around some doctor offices in search of someone who'd, well, pity me. I might try that.
Quote from: muuu on January 14, 2013, 02:48:24 AM
Can't you change from gel to patches, or possibly use your gel on upper inner thigh?
Patches, doctors keep dis-recommending them because they say they don't hold and sometimes don't deliver hormones properly. With how clumsy I am, I agree. Also, for the inner thighs... Okay, disgusting, but it's too hairy. I avoid to shave there because of ingrowns, and I never get to waxing that place. After I'm done with my arms and lower legs, I'm generally really sore everywhere, having spent 4-5 hours sitting on the edge of the bath or the ground. Yeah, I'm slow. Anyway, I intend to switch over to pills. Gel is expensive (not covered for some reason) a pain and apparently messes with blood tests.
Estradiol has a half-life of 13-17 hours (wikipedia), so if you don't use your gel in 24 hours, your levels should drop.... I think at least...
Yes, half-life in blood. However, the whole point of Estrogel is that it's supposed to be absorbed into the skin, and then released into the bloodstream at a relatively constant rate over 24 hours. The endo told me that, and I think it was also written in the instructions. So normally, blood levels should only begin to decrease when there's no more released into the bloodstream, which is 24 hours after the last dose. So 24-27 hours after the last dose, the blood levels shouldn't be all that much lower.
You could maybe try to call that doctor I suppose, but if you can't reach him without being his patient... I guess you could try to just get on a waiting list.
At least here, in a very minor Swedish city, the earliest bus to a slightly larger train station (4 tracks instead of 2 and major cities as destinations) leaves at 06:35 and last one back at 22:40. So I could potentially spend 16 hours with travel and doing things, meaning a 10 hour travel time would be possible in one day. I don't know how well your public transportation is developed, but it can't be that bad... worth checking up.
Actually... It'll be tiring but possible. I was writing that remembering how my mother had been driving me there before, forgetting that I'd have to take the bus anyway because she wouldn't want to drive that far just for that. In that case, it'd have been impossible to expect from her that she would be willing to drive for so long in a day. And I'm pretty sure there are busses really late. All night, even, maybe. So if needed I might have to take a taxi at some point to get to/from a bus station, but it should be doable. Besides, a 20-dollar taxi ride or two won't make that much of a difference over the pretty expensive set of bus tickets. :p
Quote from: girl you look fierce on January 14, 2013, 08:11:26 AM
Umm, just a thought, but why are you saying all of this on the hunch that the values are not right? Do you know they are not right or what? Why are you so sure that the way they tested is wrong and are you really sure that inaccuracy inflates the values by that much?
You said your levels go to like 157 pmol/L after 24 hrs of no medication... well google says the half life of E is like 14 hrs, wouldn't that mean your levels ARE in a good range...?
What about your T level, are they still testing it? I had normal-low E and wasn't getting any effects and found out my T was way too high.
Sorry if this doesn't help... good luck :)
See in my reply to muuu for an explanation. Additionally, my psychiatrist and endo both said that my Estrogel dose was more or less the equivalent my old pills, which brought me to 183, more or less. Adding to that the absolute lack of change and the fact I actually do feel levels lowered a little (in the beginning with pills I got a little breast soreness, but it hasn't happened again since gel), I hardly see how my levels can possibly be that high. And lol, the last tests showed them over 1000. Same dose. To me that shows something is obviously wrong. Plus as I said, there's what dr Brossard says.
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Not -on- the skin, -in- the skin. In the skin's deeper tissues. And/or there's a high concentration of it in the little veins of the arms. Something like that. Anyway, Estrogel is designed to be absorbed into the skin it's applied to, and then slowly deliver the estradiol to the blood, relatively regularly, over a period of 24 hours.
Whatever the cause, it feels very obvious to me that it's faking the results. If you look at my last two blood tests with Estrogel in the arms, you'll see two numbers. One at about 1100 pmol/L, from August, and one at about 450 pmol/L, from November. At the same dose. Sounds fishy, especially since I've felt no difference between the two.
Moreover, if the expected blood level is ~200 with my dose of Estrogel, it feels absolutely ridiculous not to see the abnormality in me getting 1100 or even 450.
I asked my pharmacist about it today, and he said that even though he isn't trained in that speciality at all, what I say sounds perfectly logical. He said I should speak to my GP, which I'll hopefully do (well, leave a message at least) tomorrow, and see if she has some resources, or if she can more easily contact the specialist in Montréal for advice. Perhaps a short call or letter to my own endo can make him finally understand common sense. If not, I'll ask her to refer me in Montréal ASAP.
How long have you been on HRT? It was about a year before I started seeing any "serious" results.
About a year, as seen from my signature. And nothing apart from slight hip enlargement.
I know this won't help you but this is one of the reasons I'm not sure these blood tests are accurate and work for everyone as an indicator. My doc stopped testing my hormone levels when we discovered the hormone levels in these tests didn't match the results I saw from the meds. Instead we slowly increased the dosage until we saw results and at this point I feel I'm on the lowest dosage I can be on and still get results. I honestly don't care what my blood test says :) My last one showed my T levels slightly higher than when I started yet I have no erections and on the same level of meds 6 months later I have B cup breasts and still growing. I have no idea, because of this sites rules, what you dosage is or what form of this med you are on to know if you are on a "normal" dose or not.
I do find it odd to be using transdermal meds on you arms. That would have a much lower rate of absorption as on most people that is some of the toughest skin on your body. The instructions that came with mine said to apply the creme to inner thigh, abdomen, shoulder or butt. Basically the softer skin on your body. And seriously, you refuse to put the meds on your inner thigh because "it's disgusting?" Get a hair trimmer if you can't shave that area and/if there is long hair there.. And I honestly don't think you are right about absorption times etc. If this was true, why would both the pharmacy and my doc recommend twice daily use for me? I know I can get sometimes get anxious feeling for a short while after applying the creme (maybe an hour after?) and if the doses are applied too close together it amplifies this side effect.
I'm not saying your doctor is right but I also don't think you are using the meds you have in the most effective way. Another thing, if this levels testing is insisted on is ask for a saliva test. Most places I have read say saliva hormone tests are much more accurate. It would also eliminate any concerns if you insist on applying it to your arms.
My endo doesn't even test me estrogen levels, just my testosterone.
Both my doctor and my pharmacist told to apply the cream (Estradiol and Progesterone mix) to the inside of my arms where they say the skin is very thin: wherever you clearly see veins is apparently a good spot.
I wonder if I have been doing it wrong...
Stephe: On my gel packages, it's written to put it on the arms, from the shoulder to the wrist. And then it says it can also be applied to the abdomen, thighs and uhm, one more place. Arms being the first thing written, hence the preferred spot. And the endo, when he explained, only talked about the arms. I usually alternated between arms and abdomen+whatever I could reach that was near, because there wasn't nearly enough surface there. A bit the inner thighs, a bit the waist and such.
But the reason I didn't focus much on the inner thighs isn't that it's disgusting. It's because then a large amount of gel gets on the hair instead of the skin, and just evaporates from there, reducing effectiveness. Generally, I went for whatever, between my arms and lower abdomen/inner thighs, was least hairy. Anyway, this isn't very relevant anymore, since I've switched over to pills.
And also, I still believe in blood tests. Just when they're done properly.
MaidofOrleans: Well, I guess that's... a way of doing it. There are all kinds of endos, especially in the US where it's very, well, do-what-you-want-as-long-as-it's-allowed.
NotThereYet: Probably not. There are various spots that work.
Quote from: NotThereYet on January 15, 2013, 10:28:27 AM
Both my doctor and my pharmacist told to apply the cream (Estradiol and Progesterone mix) to the inside of my arms where they say the skin is very thin: wherever you clearly see veins is apparently a good spot.
I wonder if I have been doing it wrong...
Anywhere you skin is thin and isn't toughened from sun exposure should be fine.
My endo is the same way, more concerned with my Testosterone levels than my E levels.
Regardless he upped my E amount(on the pill) to fight testosterone since he wont up my spirol. Since I have last seen him in September major changes have occurred.
What kind of changes and how fast if I may ask? :-)
well im still relatively young and receptive to estrogen so results may vary, but between september and today...
Breasts have gravity(really filling out)
curves and proportions are completely female now.
Thighs have really filled in as well, for the better.
it has all been highly centered around fat distribution
Also, nothing gooey comes out now if you get what I mean x3
Feels like it all happened overnight in december, more arm and leg hair fell out to.
Not that its normal or not normal, just different bodies.