endo red flag??

[EvelynSTL]

Some background first  - I just had my 3 month blood work and follow up with my endo last month. However, I have to have the blood work done at the VA, so he faxed over which tests needed to be ordered, but estrogen levels weren't one of them. 

The check up went well enough and he increased my estrogen and told me to call in a month to see how I'm adjusting. If everything was ok he would increase it again and add a progesterone.

So I called yesterday and (through his nurse) had my dosage increased and Provera was added. I brought up the blood work wasn't monitoring estrogen levels, I was told the he doesn't usually monitor it. (I'm paraphrasing here.)

What really bothers me about this is:
1) He routinely sees and prescribes for trans patients, (MTF and FTM) so it's not like he's in new territory here. On top of that, he also has a pretty good reputation in treatment.
2) It must be important to monitor if WPATH SOC (and others) say to maintain estradiol at XXX pg/mL. (my paperwork says not to exceed 200 pg/mL.)

I feel like I should insist on having the labs done just for my own piece of mind.

Anybody else ever run into something like this?

[Ms Grace]

I'm no endocrinologist but that does seem weird. My endo is all over my estradiol levels.

[kelly_aus]

Some endo's don't monitor E levels - unless there is an issue..

[Jamie2.0]

 I too am going thru the V.A.  for my HRT.
My Endo REQUIRES blood work  done every 3 months for the first year.
 
  So far all of mine are still within the limits set forth by the V.A.
Good luck !!  .Keep us posted !


  Now to just quit smoking !!    Or stay on the patches, and hope for the best.

Jamie 2.0

[DeanJulian]

Yeah, that does seem strange actually, though I don't know a lot about it.

[EvelynSTL]

Some endo's don't monitor E levels - unless there is an issue..

At this point in time, I'm not too concerned about it - but I do want to stay ahead of it. I'd rather know before any issues come up is all I'm saying. I'm going to ask about it at my next appt. to find out what his reasoning is. Monitoring seems to be the default for HRT.

Now to just quit smoking !!
Jamie 2.0

Ugh...yeah that makes 2 of us.

Thanks for the replies 

[AnonyMs]

I think its a big red flag, and I'd be looking for another endo.

I basically don't trust people much and just because they are supposed to know what they are doing doesn't mean to do. Plenty of medical mistakes get made, and someone's got to be making them. I'd rather it wasn't on me.

It's not to say that I know much either, but I like to look for things that I can understand that don't make sense. There's plenty of endo's that do measure estrogen as a matter of course, mine among them, and if I had to pick one way as being right and the other being wrong I think its clear. I don't see how they could both be right, and even if I'm wrong I'm not prepared to risk it.

You could ask the endo to measure it, but you'd still have the problem that he's potentially no good. I always look for these flags.

[Eveline]

Some endo's don't monitor E levels - unless there is an issue..

My first (and only) endo was like that - way too seat-of-the pants for me.

I ended up just working with trans-experienced family practice doctors, and we look at estradiol and prolactin levels every 3 - 6 months. Maybe it doesn't make a difference, but I feel better seeing the data - and it's cheaper than going to an endo, too...

[Rachel]

Where I go there are 10 doctors, PA-C's and Nurse Practitioners and they see almost all trans patients in their practice. They do not monitor E. They look at the blood panels, how you feel and feminizing effects to adjust dosages.

[Muffinheart]

for six years, my first endo didn't seem too focused on estrogen, but then again, he was like in his 70s...maybe 80s.
My new endo - granted she's only known me since my surgery - cut my estrogen by 50% and eliminated progesterone. And, she's really focused on osteoporosis risks, getting vitamins not through supplements, and even taken an interest in my personal life. I think her youth is going to be good for me going forward.

[Jenna Marie]

My endo doesn't monitor E level; she says it's too variable and what really matters is both controlling T and the results. She does check T level (obviously) and runs the standard blood panels to make sure it's not causing any unpleasant side effects. She says she doesn't believe in chasing lab values at the expense of the patient, and if it's working, don't mess with it.

I actually like it, because I've had fantastic results on a very very low dose, meaning minimal risk.

[HughE]

The fact that he's prescribed you provera is a big red warning flag too. Provera isn't progesterone; it's medroxyprogesterone acetate, a synthetic hormone whose main use in natal males is chemical castration of sex offenders (but is sometimes prescribed by doctors as a cheap substitute for progesterone). It's been linked to severe depression and suicides in trans women, and should never be prescribed as part of transgender HRT.

[EvelynSTL]

The fact that he's prescribed you provera is a big red warning flag too. Provera isn't progesterone; it's medroxyprogesterone acetate, a synthetic hormone whose main use in natal males is chemical castration of sex offenders (but is sometimes prescribed by doctors as a cheap substitute for progesterone). It's been linked to severe depression and suicides in trans women, and should never be prescribed as part of transgender HRT.

I'll admit I wasn't near a computer when his nurse relayed the info to me. Reading the generic version of side effects vs. reading first-hand accounts from actual users kind of made my mind up. Pretty much all of it was negative, whereas with Prometrium, most of the comments were neutral to positive.

Called in again this morning and told the nurse I wasn't comfortable with the possible side effects and had it switched, without any problems.

Thanks for all the feedback. 

[mmmmm]

Unless you're on implant/pellet administration of estradiol, it is really impossible to measure and determine what your levels would be, and what to make out of that. 1.5 hours after you would take a pill sublingually (and by that I mean successufully, not swallowing it all) your peak levels might just go into the 1000 pg/mL or even 2000+. 8 hours later your levels might show at 100 pg/mL. So its really not useful information in any serious way, except if you always take it at exact same time, like exactly 4 hours before blood test. Even that might not be much better. Its the same story with injections.. how do you determine what your levels are really, on which day, day 2, day 4, day 5 after injection. I thought before that patches might be better for that, for more constant blood serum, but my endo explained and enlightened me that it's really the same s***. So its mostly useless info, and its that much more important to watch the liver tests, prolactin, etc... This is the thing that shows you if anything HRT related goes wrong. And the only thing that really tells you that HRT goes right are changes that are happening, or aren't happening, in which case it simply means HRT isn't doing what it should. Important thing is of course having the appropriate expectations.

[Shawn Sunshine]

My doctor only up to this point has measured prolactin levels, which I am told gives a more accurate indicator of how estrogen is working in your body. She said later on I would have estrogen levels taken to get a specific number once I reach the max dose I should be on. I was surprised to be sure. But I have asked other medical people and this is something they do now. I have recently have my testosterone checked too.

[AnonyMs]

I can see not everyone agrees with me on this topic. I guess we all have to do what we think is best for ourselves. I tend to be excessively cautious and untrusting, but I am good at it. I discussed it with a therapist once, as it is fairly over the top, and he told me that this kind of thinking correlates with less happiness in life. I can see how it could so easily be true, but I've no interest in changing it since it works for me. I probably couldn't change anyway at this point in my life. Its an interesting point though.

I'll admit I wasn't near a computer when his nurse relayed the info to me. Reading the generic version of side effects vs. reading first-hand accounts from actual users kind of made my mind up. Pretty much all of it was negative, whereas with Prometrium, most of the comments were neutral to positive.

Called in again this morning and told the nurse I wasn't comfortable with the possible side effects and had it switched, without any problems.

Thanks for all the feedback. 

I believe you now you have two red flags and they are consistent with each other. Still it could be worse, at least they changed the prescription. Some probably wouldn't. Perhaps it doesn't matter yet, but the next one might.

My endo doesn't monitor E level; she says it's too variable and what really matters is both controlling T and the results. She does check T level (obviously) and runs the standard blood panels to make sure it's not causing any unpleasant side effects. She says she doesn't believe in chasing lab values at the expense of the patient, and if it's working, don't mess with it.

I actually like it, because I've had fantastic results on a very very low dose, meaning minimal risk.

I've exaggerating a bit, but I feel that's a bit like crossing the road with your eyes closed because you can hear cars coming perfectly well with your ears - I expect that works most of the time as well. Its easy to measure blood estrogen, so why not? Its obviously related to your medication and results, and I think more information is better. You don't need use it to chase particular numbers.

Unless you're on implant/pellet administration of estradiol, it is really impossible to measure and determine what your levels would be, and what to make out of that. 1.5 hours after you would take a pill sublingually (and by that I mean successufully, not swallowing it all) your peak levels might just go into the 1000 pg/mL or even 2000+. 8 hours later your levels might show at 100 pg/mL. So its really not useful information in any serious way, except if you always take it at exact same time, like exactly 4 hours before blood test. Even that might not be much better. Its the same story with injections.. how do you determine what your levels are really, on which day, day 2, day 4, day 5 after injection. I thought before that patches might be better for that, for more constant blood serum, but my endo explained and enlightened me that it's really the same s***. So its mostly useless info, and its that much more important to watch the liver tests, prolactin, etc... This is the thing that shows you if anything HRT related goes wrong. And the only thing that really tells you that HRT goes right are changes that are happening, or aren't happening, in which case it simply means HRT isn't doing what it should. Important thing is of course having the appropriate expectations.

I was on patches and getting poor results. My blood levels turned out to be very low and my endo told me some people don't absorb estrogen very well from patches. I'm one of the unlucky ones. I changed to implants, and blood levels are 4-5 times what they were before and the results are very different. I've no experience with either injections or pills, but for injections I recall looking at some charts for estrogen blood levels a long time ago and while they do change a lot over the week and blood test at the same time in the cycle provided useful information. I don't recall at which point that was.

[EvelynSTL]

I believe you now you have two red flags and they are consistent with each other. Still it could be worse, at least they changed the prescription. Some probably wouldn't. Perhaps it doesn't matter yet, but the next one might.

Which two? He listened to my concerns and changed my script. Aren't I supposed to have a say in my treatment?

As far as monitoring E, I'll find that out later, but after hearing from others here, I'm guessing he doesn't want me chasing the numbers

[AnonyMs]

Which two? He listened to my concerns and changed my script. Aren't I supposed to have a say in my treatment?

I meant in prescribing the wrong medication in the first place. Assuming it is the wrong medication, but it seems like it.

For me at least the idea is that if I see a doctor making mistakes in things I can understand, then they are probably making mistakes in things that I can't, and there's a vast array of things I can't understand. That worries me and I expect better.