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I'm the unluckiest ever or what?

Started by A, November 26, 2012, 07:09:07 PM

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A

Today, I had my appointment with the endo. I was expecting my estradiol dose to go way up, because I wasn't getting much if any effect from it. That's not what happened.

In June, I had an appointment. He heard that I wasn't getting much if any effect, so he was going to increase my Estrace dose from x to 1.5x, x being a relatively low dose. But I asked him if I could try Estrogel, because it had a 24-hour gradual, constant release, which would eliminate the "downs" I used to get just before taking my evening pill.

He gave me dose x of Estrogel. Dose x, according to my psychiatrist, is more or less the equivalent of what I used to take with Estrace. It also corresponds to what they generally prescribe to older women to cure their menopause symptoms. Mind you, with such women, according to the endo, they generally aim for 200-300-pmol/L blood levels of estradiol, however low they can make it to cure the symptoms and prevent eventual complications (thrombosis mainly).

So. In August, I went to do some blood tests before my appointment, which was supposed to be in September. The appointment was postponed to November 26th. I went there today.

Well, my August blood tests show estradiol at over 1000 pmol/L, towards the high end of the acceptable spectrum in women. How the heck did this happen? I'm not exactly large, but I'm far from a dwarf either. The dose that gives 200-300 pmol/L to old ladies gives me 1000? Why?

He prescribed me some other blood tests to confirm those results. If they say that indeed my estradiol rate is very high, he'll lower my dose by half (and 0.5x is a very, very low dose, mind you!). And that will mean that while my blood absorbs estradiol remarkably well, I am exceptionally not receptive to it. He says that if the next blood test agrees with the last one, there's literally no hope for me. That there'll be nothing else to do than wait and pray. That I just don't have enough receptors on my cells.

The only thing he found to reassure me was that "later in my process, I will be eligible to a breast augmentation". Like I can afford it! Like I'm fond of the idea! Like I don't have electrolysis, tracheal shave, a wardrobe, and eventually FFS to pay for, that I don't even have the money for!

Anyway, uhm, apart from an accidental x10 to the value, or some other lab error, which I very much wish for, what can explain the current situation? If I often put my Estrogel on my arms, and that's also where the blood is drawn, can it be that there's a huge concentration of the product in my arms? I have a little bit of anemia. Could it literally block all development?

Right now, I'm terribly despaired. I don't have "disappointing" development. I don't have "slow" development. I could deal with that. I have "nonexistent" development. I've never had any illusions regarding the effects of HRT. Yet I was expecting something, at least. Not large ones, but something I could call breasts, for instance. But nothing, that's hard to take. And I'm 21, for heaven's sake. It would even have been somewhat realistic to hope to look 100 % female after a while of HRT.

Normally, at 9 months where I am, you're supposed to be seriously starting to think of getting a bra.

My nipples started to be sensitive and painful upon pressure/hit around one month of HRT. Nothing changed since.

Well, if you're naturally skinny to begin with, it's sort of normal not to have much in terms of breasts. But I'm relatively heavily built for my height, and my mother and sister have above average breasts, just like all of my father's sisters. And even those skinny people, they might get very small breasts, but they're breasts, right? There has been absolutely no change to mine. My chest is still very much the chest I had a while ago, minus a little muscle maybe. And perhaps slightly larger areolas and more flat, more flabby nipples. But still, this is very much a man's chest. No doubt.

Putting aside anti-androgen effects(body hair, hairline, muscle mass, acne, libido, etc.), the only effect I've had so far is slightly enlarged hips, which is probably the bones, since I've been losing weight the whole time (so fat redistribution sounds a bit unlikely). This is an effect I'm not even supposed to get, yet I didn't get any of the common effects at all. Oh, and some say my face changed, but I can hardly say this is anything but a lot of weight loss.

That's all. My chest didn't change short of the fact that we can now see my ribs a little around the sternum, due to fat and muscle loss.

I don't really know what I'm asking for. Some hope? An explanation? Anything to bring me out of my misery, even if just a little?

PS: I'm not anorexic or anything. I just went from overweight~obese to a healthy weight. I even have a good amount of flab at the waist and belly. 165 cm = 5'5" and 133 lbs. The endo looked at all of my blood work (and my general practitioner had a lot of that done, checking my anemia), and saw only a few "slightly below average" values. Not even anything to worry about. I take a multivitamin and even though I'm not succeeding very much, I'm trying to eat well. So I don't think my body is trying to develop but it's lacking the food required to do so.
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Beth Andrea

I would suggest a second blood test, and from a location that doesn't get a straight shot of E.

Think of it as getting a second opinion...maybe even go to your GP and using his/her facilities for it.

What's your T levels?
...I think for most of us it is a futile effort to try and put this genie back in the bottle once she has tasted freedom...

--read in a Tessa James post 1/16/2017
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A

He didn't mention it for my August test (I don't have the sheet, though I asked him to send it with the newer one, that I passed when I came out of the hospital), but in June, it was at 0.5 nmol/L, kind of low for a woman, even. Since nothing changed with my AA and he didn't mention it, I'd assume that it's still around that.

I already did do a second blood test, right as a I was exiting the hospital. The previous one was done at another hospital, so. But I didn't have a choice - arm again. It's not like I get to choose where they draw the blood from, eh. Well, maybe I could've asked, but it didn't cross my mind.
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Beth Andrea

Last time I was in, I talked to "Dracula" and he said they can draw from many places on the body; some people can't draw from the arms (which are the easiest for all involved) so they go with the back of the knee and other places.

That's a big jump, from 200-->1000, with only a 50% increase in dose. It doesn't sound right, like it was a bad test result or something.
...I think for most of us it is a futile effort to try and put this genie back in the bottle once she has tasted freedom...

--read in a Tessa James post 1/16/2017
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Beth Andrea

I recall reading somewhere that if you're getting E from other sources, like plants, vitamins, etc that these "phytoestrogens" will actually inhibit real estrogen from bonding.

Maybe double-check your diet and supplements for phyto-estrogen sources?
...I think for most of us it is a futile effort to try and put this genie back in the bottle once she has tasted freedom...

--read in a Tessa James post 1/16/2017
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A

Oh, uhm, maybe I wasn't clear. My endo was going to increase my dose by 50%, but when I asked for estrogel, he gave me an equivalent (0% increase) dose to what I was taking before, except in transdermal form.

As for phyto-oestrogen sources, all I see is soy milk. I get about one glass (250 mL) of that a day. I seriously doubt there's enough phyto-oestrogens in one glass of soy milk to seriously disrupt my hormonal balance...
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Cindy

I've had exactly the same result. I started to 'produce' more E than I was taking by about 10 fold, and even cutting back on Prognova had no effect.

Since I'm involved in Pathology I had a draw and sent it to four sites, one site had it high the others had it at my expected range. There appears to be a cross reactivity in some of the kits that are used to measure E. Which didn't totally surprise me but I was amazed it hadn't been picked up in QAP testing.

Legally I cannot go into what the tests are,but I suggest that you ask your medic to send a sample to a few testing sites, ask them what method they are using and see if it changes.

My endo/gynae was surprised by my results but had seen it before. I was put on straight oestordiol  implants that don't need liver processing to become active and my levels have been stable since.

Hugs Hon

I know how miserable I felt when I was told I had to come off the 'mones. I did say bugger the heart attack I'd rather die than go off hormones.

Cindy


Addendum:

The cross reactivity issue seems to be with MtF and not with GF going through menopausal treatments. So it may be a 'male' produced serum factor which is involved.
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A

I seriously doubt I can do that kind of thing: you generally take the blood at one place and have no control whatsoever on where it's processed: it's the same place. Though I did do this test at a different hospital from the one where I did my August one.

I really wonder how I could tell him about this. He isn't planning to see me until next summer, so I can only leave messages to the secretary. And he's so confident that I doubt that even in person, he'd really listen to me, especially as it's something I read on the Internet...

On another board, I read about another possible explanation: Estrogel can give erroneous test results because the skin where you're putting the needle is saturated in it. Another endo, Dr Brossard from Montréal, tells Estrogel HRT patients to stop taking it 24 hours before a blood test, and to wash the arms well before drawing the blood. Would've been good to know that before having my blood drawn only 4 hours after putting the gel...

I still have an old blood test prescription sheet lying around, that I didn't need when he sent it to me, in the end. Do you think it would be okay to go do more tests with it, even though I just had some done, it wasn't asked for and all? Should I wait for the results (~2 weeks) before? Or should I do it this tomorrow, at the same time as another blood test my GP prescribed?
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Padma

I've been told to leave at least 4 hours between putting on estrogel and having blood taken for an E level - also, not to put the gel on my arms the day I'm having blood drawn from them. Ideally, one should always have blood taken at the same interval after putting on estrogel for consistency, since it's a daily dose and so the amount in the bloodstream goes up and down like a yoyo.

This advice came from an endo one of the women at my gender clinic had been seeing.

(My last 2 readings were 1856 and 260 respectively, the first a couple of hours after gel on the arm being drawn from, the second about 12 hours after gel.)
Womandrogyne™
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MANDY GG


I was on Evorel (patch) with my oestradiol level of 200  too low so my endo put me on Estradot patch same dose one every
3 days and my blood levels hit 1023  change to one every 4 days and it's 390 pmol/L .
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Beth Andrea

Quote from: A on November 27, 2012, 07:28:32 AM
I seriously doubt I can do that kind of thing: you generally take the blood at one place and have no control whatsoever on where it's processed: it's the same place. Though I did do this test at a different hospital from the one where I did my August one.
Quote

My endo sends the sample across the state (300 miles~500km).

You can always ask, it won't hurt. If they say no, that'd be "strike 1"...

QuoteI really wonder how I could tell him about this. He isn't planning to see me until next summer, so I can only leave messages to the secretary. And he's so confident that I doubt that even in person, he'd really listen to me, especially as it's something I read on the Internet...

If any doc is so hard to get a hold of, perhaps it's time for a new doc?

And if he's "so confident" (read: arrogant) that he doesn't listen to his patient's needs, that would be "strike 2"...doctors nowadays realize (and expect) their patients to become informed about their conditions, symptoms, side effects, etc. and realize that although the MD has far more knowledge about the body's overall system/interactions, the patient *may* have more up-to-date information about their particular situation. A good Dr will at least listen, even if it is "something read on the Internet."

QuoteOn another board, I read about another possible explanation: Estrogel can give erroneous test results because the skin where you're putting the needle is saturated in it. Another endo, Dr Brossard from Montréal, tells Estrogel HRT patients to stop taking it 24 hours before a blood test, and to wash the arms well before drawing the blood. Would've been good to know that before having my blood drawn only 4 hours after putting the gel...

Bingo!

QuoteI still have an old blood test prescription sheet lying around, that I didn't need when he sent it to me, in the end. Do you think it would be okay to go do more tests with it, even though I just had some done, it wasn't asked for and all? Should I wait for the results (~2 weeks) before? Or should I do it this tomorrow, at the same time as another blood test my GP prescribed?

Absolutely! This time, follow the protocols you've learned about not taking E for a certain amount of time, washing, etc...and see what happens. I'm not sure if an order for a blood draw expires after a certain amount of time, but what the hey, you've got little to lose!
...I think for most of us it is a futile effort to try and put this genie back in the bottle once she has tasted freedom...

--read in a Tessa James post 1/16/2017
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A

As for my doctor, I wouldn't say he's arrogant. He's just very confident, and doesn't dig very deep when it comes to possible issues or solutions. He never, after all, thought of the eventuality of my blood tests being ruined by Estrogel on my arms, and found it perfectly sane to say that my dose is aimed at post-menopausal women for a 200-300-ish level, and then to say that he rather commonly sees people show up with 1000+ levels on a dose like that. Maybe he's getting old. I don't know.

As for changing doctors, he's the only one "nearby" (250 Km). There are two others in Montréal, which is 5 hours of road, thus possibly sleeping over in Montréal and missing two days of school. Because I don't think 10 hours of road (+ traffic) in one day is very much doable. And those in Montréal are even busier, with even longer waiting lists, it seems. Endos for trans people are kind of a special case, but here, there's a penury of doctors. Most people's doctors are hard to reach. A lot of people with a family doctor will go to the ER instead of their doctor when trouble arises, because their doctor is too busy. Our health system is better than the US's, but it still has its imperfections.

Anyway! I'll be going for the blood test tomorrow. The sad thing is that while I did do yesterday's blood test at the endo's hospital, which takes into account Cindy James' hypothesis (with luck), I had Estrogel just before, so the Estrogel-on-skin problem stays. Tomorrow, I'll be able to safely clean my arm, but I'll be at the same lab where I had my August tests. And obviously, there's no other hospital nearby that I know of. Life is hard.

I guess I'll leave the doctor's secretary a message with all I intend to do, and hope for the best.
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A

You had to fast? Was he measuring some special, food-related stuff, like lipids? Because my paper doesn't say to fast. o:

But yeah, tomorrow morning, I'll bring my Estrogel in my bag instead of putting it on after my shower, and I'll put it on in the hospital's bathroom before leaving.
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A

Weird... Maybe it's "just a precaution"? Well, as "just a precaution", I won't eat tomorrow morning either! Anyway, my pills mostly prevent me from being all that hungry, so I'll survive.
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luna nyan

The likely reason that they're making you fast is to check blood sugar levels.  It's the case of "seeing that we've got you anyway let's check everything else out" scenario.  A lot of medical types will do incidental testing/screening if certain tests have to be ordered because if an issue crops up later that they would have caught on a routine test, then there may be medico-legal problems.

For the first few blood tests I had done, they were all fasting - after my endo saw that my sugar levels were stable, he's cut out the fasting requirement for the blood sugar test.
Drifting down the river of life...
My 4+ years non-transitioning HRT experience
Ask me anything!  I promise you I know absolutely everything about nothing! :D
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Padma

A fasting blood test is also necessary to check cholesterol levels.
Womandrogyne™
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Elsa

Hang in there hon, do a blood test at least half a day to next day after you had you've had a dose of E.

Make sure the area they do the test from is not the same arm where you have applied it and if it is then at  the very least it needs to not have any traces from the last E dose.

Do what you have to do - tell the person drawing blood that the area they are taking from is where you are applying the E and this might affect the results also tell them that you specifically need the test to get accurate E level and be as adamant if you have to be.

Try to a test from a different hospital or clinic but do what to have to do to get a second or third opinion.

Hang in there hon, believe in yourself.
::hugs::
Sometimes when life is a fight - we just have to fight back and say screw you - I want to live.

Sometimes we just need to believe.
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Cindy

Fasting has no affect on E levels. You may have been having an LFT and lipids at the same time. LFT doesn't matter but lipids are tested on fasting samples. Just had my E done after 6 weeks on an implant and it was 623 pmol/L That's OK.
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A

Hi there! I saw my general practitioner today, and she happened to have received the results of the blood tests I had done last Thursday, without having taking Estrogel in over 24 hours - because when I can help it, I always have every result sent to every doctor - and my estradiol is presently 150 pmol/L. Even lower than what appeared in my blood tests in June, and even more normal for a man. Very much what I expected seeing the absence of results.

I'm so relieved. My 10 months of HRT so far have been practically useless apart from blocking T, and that's still depressing, but at least, there's hope. That's great news.

The endo probably hasn't received the results yet, because he's much farther away, but I left him a message warning him of this, and that the blood tests I did when I came out of his office are probably erroneous as well, and that I wanted to be called as soon as he got the results, because I've been waiting for a dose increase for a very long time.

Additionally, today, I received through mail the results from the August blood tests, since I had asked for it. 1114.7 pmol/L. But most importantly, a message from the technician: "To be rejected". Lol. And the endo discarded that pretty important comment and did not prescribe new blood tests, when I actually went and called, asking the secretary to ask him if he was sure he didn't want any new blood tests before our appointment. Just... Yeah. People aren't always competent if they tell you they are.
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