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Failed progesterone and the battle continues...

Started by Harley Quinn, February 27, 2017, 01:49:04 PM

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JeanetteLW

 Have you tried the patient advocate? Or taking it up the chain to the LBGTQ care coordinator?
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Harley Quinn

I've considered talking with the LGBTQ coordinator, but I am attempting to ride out the request through my doctor. I may have the Frank conversation with her about using the patient advocate and LGBTQ coordinator to get past the pharmacist.
At what point did my life go Looney Tunes? How did it happen? Who's to blame?... Batman, that's who. Batman! It's always been Batman! Ruining my life, spoiling my fun! >:-)
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JeanetteLW

  Good for you Harley. If you don't push for what you need who will. Best of luck for a happy resolution.

  Jeanette
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Paige

Quote from: Harley Quinn on March 06, 2017, 09:42:15 AM
I've considered talking with the LGBTQ coordinator, but I am attempting to ride out the request through my doctor. I may have the Frank conversation with her about using the patient advocate and LGBTQ coordinator to get past the pharmacist.

Hi Harley,

Do you think you could have a conversation with your doctor about the numerous HRT studies that support your point of view?  Or is she just stuck in her ways?  If you walk in with studies in hand, what we she do?

Good luck,
Paige :)

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Harley Quinn

She's very much a checklist doctor. She quotes the standards... aka the arbitrary numbers of standards of care from the endocrine society.

Today, over the phone she decided to cut my estrogen again because my end of cycle at 7 days was 518 pmol. She wants 200 pmol as her magic number. And had me split my Spiro into 2 separate doses every day rather than all at once. Another month like this and then she'll check back over the phone. And brought up lowering my finasteride again. My intuition tells me that I am going to have to spend another 6 months changing everything else before she will consider progesterone again. And more than likely medroxyprogesterone with different combos of every other med. I mean endless combinations of my other 3 prescriptions...

So next week I will try and see the LGBTQ coordinator... ** fingers crossed that there's no backlash.
At what point did my life go Looney Tunes? How did it happen? Who's to blame?... Batman, that's who. Batman! It's always been Batman! Ruining my life, spoiling my fun! >:-)
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JeanetteLW

Quote from: Harley Quinn on March 09, 2017, 10:36:53 PM
She's very much a checklist doctor. She quotes the standards... aka the arbitrary numbers of standards of care from the endocrine society.

Today, over the phone she decided to cut my estrogen again because my end of cycle at 7 days was 518 pmol. She wants 200 pmol as her magic number. And had me split my Spiro into 2 separate doses every day rather than all at once. Another month like this and then she'll check back over the phone. And brought up lowering my finasteride again. My intuition tells me that I am going to have to spend another 6 months changing everything else before she will consider progesterone again. And more than likely medroxyprogesterone with different combos of every other med. I mean endless combinations of my other 3 prescriptions...

So next week I will try and see the LGBTQ coordinator... ** fingers crossed that there's no backlash.

Hi Harley,

   My guess is that they are not her magic numbers but more than likely she is following VA guidelines.
  I think I would stick to your guns though and at least find out if that is the case. Talking to the LGBTQ coordinator may help with that. And If there are any repercussions I would bring it up with the Patient Advocate.

I may run into the same issues as I will be discussing an increase in E after my next lab tests and I think it will discuss Progesterone too.

Wishing ya luck,
  Jeanette
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KayXo

Quote from: Harley Quinn on March 09, 2017, 10:36:53 PM
She's very much a checklist doctor. She quotes the standards... aka the arbitrary numbers of standards of care from the endocrine society.

Today, over the phone she decided to cut my estrogen again because my end of cycle at 7 days was 518 pmol. She wants 200 pmol as her magic number.

I think you mean 200 pg/ml and not pmol/L. 200 pg/ml = 734 pmol/L. That is the maximum level recommended by the Endocrine society and appears to have been based on what they deem to be the average levels in premenopausal women forgetting to take into account that:

- ciswomen get pregnant so that average levels during their premenopausal years are probably higher
- we don't have the same history as ciswomen: growth hormone levels, age at "female puberty", prior masculinization.
- levels vary to quite an extent in ciswomen so that narrowing down an ideal level to such a degree for everyone ignores the fact that we are individuals with different sensitivities. For some, a level of 100-200 may be good but for others, more may be needed to achieve optimal results and this needs to be determined by doctor and patient together based on psychological/physical results.
- levels of E vary in time and hence testing levels is not accurate.
- SHBG binds E and SHBG is sometimes higher in us due to oral intake of E so that even if our E level is in the 'ideal' range, our free E may be lower in comparison.
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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LexiDreamer

Quote from: KayXo on March 16, 2017, 08:47:01 AM

- levels vary to quite an extent in ciswomen so that narrowing down an ideal level to such a degree for everyone ignores the fact that we are individuals with different sensitivities. For some, a level of 100-200 may be good but for others, more may be needed to achieve optimal results and this needs to be determined by doctor and patient together based on psychological/physical results.


Can you elaborate on this point?
What criteria could I base my "optimal results" on?
Unfortunately, as I'm sure often is the case for many trans-women, my prescribing GP only knows as much as shes been trained for by following Callen-Lorde written protocols.
They know enough to prescribe the meds and know what target levels to look for in the blood labs, but don't have any real knowledge of what  psychological/physical results should be.

*** Any suggestions I make should never be used as a substitute for licensed medical advice ***
*** All of my personal pharmaceutical experiences I share, have been explicitly supervised by a licenced medical professional ***
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KayXo

Psychological: you feel good, you have energy, positive outlook on life, you sleep well
Physical: breast growth, female fat distribution, less body hair/slower growth, less/no body odor, facial changes, skin less oily, softer/translucent, overall feminization

Signs of too little may include anxiety/depression, trouble concentrating/brain fog, hot flashes, night sweats, feeling very tired/unmotivated, memory problems, overall health deteriorating, bone loss, ageing faster than normal, etc.
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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LexiDreamer

Quote from: KayXo on March 16, 2017, 12:01:56 PM
Psychological: you feel good, you have energy, positive outlook on life, you sleep well
Physical: breast growth, female fat distribution, less body hair/slower growth, less/no body odor, facial changes, skin less oily, softer/translucent, overall feminization

Signs of too little may include anxiety/depression, trouble concentrating/brain fog, hot flashes, night sweats, feeling very tired/unmotivated, memory problems, overall health deteriorating, bone loss, ageing faster than normal, etc.

Interesting.
I still suffer from anxiety and depression,but I had that before HRT.
When I'm not feeling depressed my outlook is positive.
I do sometimes feel tired and unmotivated, but not sure if that is related to my depression or the cruel winters we have here in the northern US.
I don't know that my sleep patterns have changed much.
No hot flashes or night sweats.
I do have substantial breast growth, but I don't see a lot of the fat distribution happening yet though.
My body hair doesn't seem to have slowed down. It is lighter and finer now, but I've also done laser treatments and epilate my body hair.
My body odor has disappeared completely. That is amazing. I can go without deodorant for several days and no smells.
I just don't see the facial changes. But I'm not exactly sure what to expect.
My skin is definitely clearer and less oily.

I feel like some of those changes (like skin and BO) could be attributed to lower T levels as opposed to the E levels.

I did lose about 30 pounds and my frame got smaller.  And my butt has gotten smaller. I went from a 7 to a 5 in panties. I would think the E would increase my butt size.

7.5 months on HRT. Maybe, I'm just being impatient?
*** Any suggestions I make should never be used as a substitute for licensed medical advice ***
*** All of my personal pharmaceutical experiences I share, have been explicitly supervised by a licenced medical professional ***
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KayXo

Personally (and I'm not a doctor), as long as there is substantial breast growth and mood is good or attributable to something else, I wouldn't change a thing. The doctor and the patient must come to an agreement as to whether HRT needs to be adjusted or not.
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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TechGirl

Quote from: KayXo on March 16, 2017, 12:01:56 PM
Psychological: you feel good, you have energy, positive outlook on life, you sleep well
Physical: breast growth, female fat distribution, less body hair/slower growth, less/no body odor, facial changes, skin less oily, softer/translucent, overall feminization

Signs of too little may include anxiety/depression, trouble concentrating/brain fog, hot flashes, night sweats, feeling very tired/unmotivated, memory problems, overall health deteriorating, bone loss, ageing faster than normal, etc.
Funny, my Endo (male) and Endo office manager (female) both David hot flashes entries a sign I was in the normal range, and welcome to womanhood.

Mind you, I think they both live in a different works and couldn't disagree with them more.

And, despite any evidence I might provide, my Endo ID bound to follow his rules.

But that is the life under military health care.

Sent from my Nexus 6P using Tapatalk

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LexiDreamer

Well, I talked to my doctor about my low sex drive and asked her if I could start taking progesterone She told me she wanted me to hold off until the latest lab results to see where my levels were at.
She only had me dial back my Spironolactone as the lab showed my Testosterone at 25 ng/dL. Personally I'm fine with it that low, but I'm thinking she thought that level was affecting my sex drive?
So I dialed my Spironolactone back as she told me to (about 5 weeks ago), but I haven't noticed any change in libido.

Well, my girl friend dumped me last weekend, mostly because of my lack of sexual desire for her. Thanks for the help doc! :(

What is the best progesterone to take? I have read some girls reporting on here that some are good and some are very bad.

Thanks in advance...

-broken hearted
*** Any suggestions I make should never be used as a substitute for licensed medical advice ***
*** All of my personal pharmaceutical experiences I share, have been explicitly supervised by a licenced medical professional ***
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ainsley

Quote from: LexiDreamer on May 01, 2017, 03:45:46 PM
Well, I talked to my doctor about my low sex drive and asked her if I could start taking progesterone She told me she wanted me to hold off until the latest lab results to see where my levels were at.
She only had me dial back my Spironolactone as the lab showed my Testosterone at 25 ng/dL. Personally I'm fine with it that low, but I'm thinking she thought that level was affecting my sex drive?
So I dialed my Spironolactone back as she told me to (about 5 weeks ago), but I haven't noticed any change in libido.

Well, my girl friend dumped me last weekend, mostly because of my lack of sexual desire for her. Thanks for the help doc! :(

What is the best progesterone to take? I have read some girls reporting on here that some are good and some are very bad.

Thanks in advance...

-broken hearted

I am sorry you are having trouble like that.  Also for your relationship issues. :(
I have tried several progesterone and I recommend Prometrium (oral take with fatty food for best absorption), or the generic version of it.
Some people say I'm apathetic, but I don't care.

Wonder Twin Powers Activate!
Shape of A GIRL!
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LexiDreamer

Quote from: ainsley on May 01, 2017, 03:53:28 PM
I am sorry you are having trouble like that.  Also for your relationship issues. :(
I have tried several progesterone and I recommend Prometrium (oral take with fatty food for best absorption), or the generic version of it.

Thank you for your sympathy and your recommendation.
I'll try to get her on board with the Prometrium. At this point, I don't know what else to do.
*** Any suggestions I make should never be used as a substitute for licensed medical advice ***
*** All of my personal pharmaceutical experiences I share, have been explicitly supervised by a licenced medical professional ***
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LexiDreamer

I know some of the girls on here talk about a Progesterone cream. Have you any experience with it?
*** Any suggestions I make should never be used as a substitute for licensed medical advice ***
*** All of my personal pharmaceutical experiences I share, have been explicitly supervised by a licenced medical professional ***
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KayXo

Progesterone cream doesn't usually absorb well and you don't end up with very much in the blood. Best to stay away as you'll be throwing your money away, IMHO. Progesterone definitely has an impact on libido and how much I lubricate. I added some T recently (I'm post-op) and it didn't do much in terms of libido. P has a much greater impact on me but maybe my T is still too low, as far as libido goes.
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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ainsley

Quote from: LexiDreamer on May 02, 2017, 08:55:03 AM
I know some of the girls on here talk about a Progesterone cream. Have you any experience with it?

I have not, but KayXo has and I would recommend her advice regarding that.  Progesterone definitely increased my libido and my T levels are null (reference ranges are for women...I am post-op):

Testoster Free
0.16 ng/dL
Reference Range: 0.06-0.95

Testoster Tot
10 ng/dL
Reference Range: 8-60
Some people say I'm apathetic, but I don't care.

Wonder Twin Powers Activate!
Shape of A GIRL!
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JeanetteLW

Quote from: ainsley on May 02, 2017, 09:39:17 AM
I have not, but KayXo has and I would recommend her advice regarding that.  Progesterone definitely increased my libido and my T levels are null (reference ranges are for women...I am post-op):

Testoster Free
0.16 ng/dL
Reference Range: 0.06-0.95

Testoster Tot
10 ng/dL
 
Reference Range: 8-60

  I'll get my 4 month labs done on the 22nd. (My doc can't add 3 to January and come up with April so it is 4 and May) I am hoping to talk him into progesterone  and double my estradiol.  My first labs were all well within female ranges.
  I have some progesterone I ordered before telling him about me. I could...  well, we won't discuss that here.  Besides I'm trying to be a good girl now.  lol

  Hugs,
   Laurie
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ainsley

Quote from: JeanetteLW on May 02, 2017, 11:14:50 AM
...  I have some progesterone I ordered before telling him about me. I could...  well, we won't discuss that here.  Besides I'm trying to be a good girl now.  lol

  Hugs,
   Laurie

I am not ashamed about it:  I self medicated completely for several years.  I supplementally self medicate now even though I am under a doctor's care for my HRT.  When they don't listen and will not do what I want, I take action if their reasons are not logical.  My body, free country, my transition.  :)  My labs are always spot on...
Some people say I'm apathetic, but I don't care.

Wonder Twin Powers Activate!
Shape of A GIRL!
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