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How direct are you with questioning dosage?

Started by AlyssaJ, May 02, 2017, 02:51:48 PM

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KayXo

Quote from: AlyssaJ on May 04, 2017, 12:50:05 PMShe said she starts at a low dose of Estradiol for two reasons.  First, in her experience, it helps avoid Tuberous Breast growth (which can only be corrected with plastic surgery).

Any science, studies to back up that claim?

QuoteSecond, and her bigger concern is the risk of blood clots.

Not a good reason, in my opinion. Bio-identical estradiol is a relatively safe estrogen (I hope she can distinguish between this and other forms of estrogen like Premarin and birth control pills) and there are several studies supporting the use of higher doses of ESTRADIOL (in transgendered women) and even VERY high doses (used for advanced breast/prostate cancer) with little risk ("that do give rise to major concerns"), sometimes in much older women (and men), up to 92 yrs old. Studies estimate (I can provide the studies by PM for anyone interested, you can show doctor) the potency of birth control pills to be the equivalent of anywhere between 10 mg and 50 mg oral estradiol. And older birth control pills containing more, just a decade ago or so, to be the equivalent of 15 mg and 75 mg oral estradiol. The risks of blood clots associated with older birth control pills in absolute numbers was 0.03%, now probably lower with birth control pills containing the equivalent of 10-50 mg oral estradiol. Birth control pills are prescribed to millions of premenopausal women, sometimes without even checking for predisposition to clots. Why be so cautious with oral estradiol when it comes to transgendered women when the same is not true for premenopausal women? Something is not right...

The problem is some doctors are unaware of the above information and have fears regarding estrogen or oral estrogen because of large studies using other forms of estrogen combined with non bio-identical progestogens in post-menopausal women without understanding the intricacies of the studies, the differences between estrogens.

The dose she prescribed to you is far far smaller than all the above and you are still young. Her explanations do not justify her actions, I think. I'm not the expert though. I base my opinion on information I've come across in studies in journals and statistics provided by reputable sources.

QuoteShe admitted she and likely other OB/GYN's are probably more conservative about this than an Endo would be given that they work with pregnant women who are at a much higher risk of blood clots.

Still not a good reason, in my opinion. Pregnant women have levels as high as 75,000 pg/ml, typical levels around 1,000-40,000 during the course of pregnancy. The ABSOLUTE risk of deep vein thrombosis is 0.1%, the ABSOLUTE risk of pulmonary embolism is 0.01%. Your levels are probably under 100 pg/ml, more than 10 to 75 times lower. Calculate your risks...draw your own conclusions.

QuoteSo in the end, she's more conservative than an Endo, I'm ok with that.

I wouldn't be satisfied with her answer given what I know. If you want, I can send you those studies privately and you share these with her. Your call. But, it is our job and responsibility, I think, to also educate our doctors about a subject matter that is far from extensively studied and taught in medical schools and for which several misconceptions continue to circulate. We need to start somewhere and WE can make a difference.

Quote from: Laurie on May 04, 2017, 01:00:28 PMOne of them posed an inquiry about increasing my estradiol. In his reply hes indicated at my next regular meeting with him on the 22nd (4 months from last when he prescribed my HRT) he will order more labs and see hows my hormone levels are then decide what to do.

Levels of estradiol in men with prostate cancer around 300-600 pg/ml, aged 49-91. No increase in risks but decreased risk of DVT and cardiovascular risk improved. Levels seen in women during menstrual cycle, from less than 100 to up to 650 pg/ml. During pregnancy, read reply above. My own levels, from around 1,000 to 4,000 pg/ml, I'm neither very young, nor old. Clotting factors remain normal, everything is fine according to my three doctors. Studies with high levels in post-menopausal women (older than 45) with levels anywhere from 100 to 3,000 pg/ml showed no complications.

Why do doctors keep on relying on levels to determine risks? It has no bearing on breast cancer risk as pregnant women actually seem to have a decreased risk of breast cancer incidence in the long-term (breast cancer risk also does not increase in transgendered women) while prolactinoma is very rare in transwomen despite decades of aggressive doses of estrogen and the few times they were present, bio-identical estradiol was not taken exclusively.

QuoteIn answering another question about adding progesterone he said that will not happen until I am on a "Full" dose of estradiol.

Why not? What are his reasons?

I apologize for bringing this up, again and again but I can't just say nothing knowing what I know. I've personally taken the time (because I can, I realize not everyone has the luxury) to research this matter because I didn't want doctors making the wrong decisions, I wanted to understand what I was putting in my body, the benefits and risks, I wanted to play an active role in my treatment and not blindly follow with potential harm being done to me. I'm not a doctor, nor a health professional. But thanks to the knowledge I gather, the doctors that treat me can't just do as they please, we have a discussion and sometimes, their opinions are changed. I also have the luxury of choosing my doctors. :)

I am not a medical doctor, nor a scientist - opinions expressed by me on the subject of HRT are merely based on my own review of some of the scientific literature over the last decade or so, on anecdotal evidence from women in various discussion forums that I have come across, and my personal experience

On HRT since early 2004
Post-op since late 2005
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staciM

^KayXo, I would be interested in any studies you have on the benefits of Progesterone that I can send my Dr.  I brought this up very briefly on my first visit with my Endo and he dismissed it as something that didn't really show any benefit, but some negatives....I don't push because I wasn't armed with any good data.
- Staci -
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AlyssaJ

Kay I knew you were going to weigh in on this one for sure  :)  No idea if she has sources for the Tuberous Breast growth, both times she's mentioned it she has referenced her experience as the primary source, so IDK.  As far as the clotting risks, I've seen studies referenced on both sides of this argument, I honestly have not done any research to really understand the details but at the end of the day if I can get bumped up to a more appropriate dosage, that's all I really care about.  In the end if things get to a point where I'm not happy with my dosing and I can't get a change from her, I always have the option to switch my care to an Endo in the same hospital group (so they'd have access to all my info already).  So right now I'm playing a wait and see here.  I do still trust her judgement and I definitely like her "bedside" manner.  IDK yet about approaching her with the info you have, I'll see how the discussion goes with her during my follow-up and maybe I'll bring it up.  I want to make sure that if she doesn't have all the info that I help present it to her like you suggested, but at the same time I do have a certain hesitancy to play internet doctor and second-guess the work of a professional who's dealt with a large number of transgender patients.
"I want to put myself out there, I want to make connections, I want to learn and if someone can get something out of my experience, I'm OK with that, too." - Laura Jane Grace

What's it like to transition at mid-life?  http://transitionat40.com/



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Laurie

Quote from: AlyssaJ on May 04, 2017, 02:36:00 PM
Yep I'm familiar with those tables, and I'm not even on the table yet :) Now she didn't say how much she's going to increase me but I'm assuming she'll double it which will put me at that very bottom of the range.

Alyssa,

  Well being on the table would be a good thing. After 5 months I've had pleasing results so far as you can see in my avatar. I may even be a bit bigger since then. Today in my new t-shirt top and bra I think I look it. And it's a concern for me too. I'm worried a bit that my doctor may take one look  and decide not to make an increase because he is happy with the progress I'm getting at the dosage I am currently at.  MORE! MORE! I want MORE!
  Of course as usual YMMV

I hope you get your increase and it does well for you.

Hugs,
   Laurie
April 13, 2019 switched to estradiol valerate
December 20, 2018    Referral sent to OHSU Dr Dugi  for vaginoplasty consult
December 10, 2018    Second Letter VA Psychiatric Practical nurse
November 15, 2018    First letter from VA therapist
May 11, 2018 I am Laurie Jeanette Wickwire
May   3, 2018 Submitted name change forms
Aug 26, 2017 another increase in estradiol
Jun  26, 2017 Last day in male attire That's full time I guess
May 20, 2017 doubled estradiol
May 18, 2017 started electrolysis
Dec   4, 2016 Started estradiol and spironolactone



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KayXo

Quote from: AlyssaJ on May 04, 2017, 03:28:47 PMAs far as the clotting risks, I've seen studies referenced on both sides of this argument

I would be interested in seeing those studies on the other side of the argument. I remain open, as always. You can privately message me. :)

QuoteI do have a certain hesitancy to play internet doctor and second-guess the work of a professional who's dealt with a large number of transgender patients.

It is your right as a patient to question and second guess any doctor. You are the one taking these hormones and medications. It's your body, don't ever forget that. You are not playing internet doctor, you are gathering scientific information on the matter and sharing it with your doctor. Then, it's her call. A good doctor, in my opinion, will listen to what you have to say.

Quote from: staciM on May 04, 2017, 03:25:32 PM
^KayXo, I would be interested in any studies you have on the benefits of Progesterone that I can send my Dr.

Done. Keep us posted. :)
I am not a medical doctor, nor a scientist - opinions expressed by me on the subject of HRT are merely based on my own review of some of the scientific literature over the last decade or so, on anecdotal evidence from women in various discussion forums that I have come across, and my personal experience

On HRT since early 2004
Post-op since late 2005
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staciM

^ thank you, I'll see him next month and see what he says.
- Staci -
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LizK

Quote from: staciM on May 04, 2017, 03:25:32 PM
^KayXo, I would be interested in any studies you have on the benefits of Progesterone that I can send my Dr.  I brought this up very briefly on my first visit with my Endo and he dismissed it as something that didn't really show any benefit, but some negatives....I don't push because I wasn't armed with any good data.

Curiously so did mine...she said it really was a waste of time, but from what I see around here many of the girls seem to be on it and it seems to contribute to their well being...
Transition Begun 25 September 2015
HRT since 17 May 2016,
Fulltime from 8 March 2017,
GCS 4 December 2018
Voice Surgery 01 February 2019
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KayXo

Ask your doctor why it's a waste of time, based on what? What is your doctor referring to? Provera? Other progestogens? Questions, questions... you are allowed to ask questions. :)
I am not a medical doctor, nor a scientist - opinions expressed by me on the subject of HRT are merely based on my own review of some of the scientific literature over the last decade or so, on anecdotal evidence from women in various discussion forums that I have come across, and my personal experience

On HRT since early 2004
Post-op since late 2005
  •  

LizK

Quote from: KayXo on May 04, 2017, 08:17:39 PM
Ask your doctor why it's a waste of time, based on what? What is your doctor referring to? Provera? Other progestogens? Questions, questions... you are allowed to ask questions. :)

I am researching stuff to take to my next appointment that contradicts her point of view and will be interested to see how she reacts
Transition Begun 25 September 2015
HRT since 17 May 2016,
Fulltime from 8 March 2017,
GCS 4 December 2018
Voice Surgery 01 February 2019
  •  

KayXo

Sometimes, just asking will reveal a lot. ;) Best of luck. :)
I am not a medical doctor, nor a scientist - opinions expressed by me on the subject of HRT are merely based on my own review of some of the scientific literature over the last decade or so, on anecdotal evidence from women in various discussion forums that I have come across, and my personal experience

On HRT since early 2004
Post-op since late 2005
  •