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Why isn't my estrogen working anymore? Please help me.

Started by Princess_Jasmine, December 22, 2012, 05:22:28 AM

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Princess_Jasmine

To start, I am 23 years old (now 2 years post op) and have been on HRT for about 3 years now. I don't understand what is going on with my body anymore, and I am starting to lose hope.

Both myself and all other MTF's I know in real life (three other girls) are all going through the exact same thing. Every single one of us does NOT feel like our old selves and we are all dealing with brain fog as well as less feminization post op.

I have been seeing so many doctors to try and make amends for this problem. I have tried everything and I still cannot figure out what the solution is. Pre op, My E levels were in the 600s and my T levels were <20. Post op my E level was about 350 and my T level was not measured. That E level was after my doctor instructed me to halve my dose of E and drop the spiro I had been taking. Well, I lost all breast development post op and started growing facial hair I never had before. So, I went back to the doctors and went back to my original E dose. This however has not solved the problem, so I went on my dose of Spiro again. This helped the facial hair but did not solve anything else. I would also like to say that lower doses of E than what I am on now just make me feel worse/look worse. Anyways, I ended up being placed on Prednisone later that year for an ear infection and all of my problems went away for a short period of time. My brain fog lifted, I looked feminine again, and it was like my estrogen was working! However, this didn't last long. I did some research online and this girl went through almost the exact same thing as I did. In fact, our stories are so similar it scared me! Here is the link (if you scroll down to the bottom you can read her story and how she tried adding testosterone and how it was a big fail). http://mtf.livejournal.com/580314.html

So, my doctor thought maybe what I needed was testosterone. I don't even know how but the testosterone immediately started masculinizing me and I stopped it immediately (not after being left with extra facial hair growth of course!). Progesterone also did not do anything either but make me feel quite weird.

Then it was discovered this summer I had H pylori and I thought that was the solution. I did the treatment and while it did improve my fatigue, all of my problems remain.

So, does anyone have any clue as to what is going on here? It is getting to the point too where I have a diminished tolerance of foods and sugar makes my symptoms even worse. I went to a new endo but she tested my insulin/glucose and said I am nowhere near diabetic (I am also quite thin). My TSH on my thyroid is a 1.2 (which is excellent) and all of my labs keep showing that nothing is wrong. The only thing is that I have twice the maximum amount of vitamin b6 in my system and low vitamin D. I don't know what to do anymore. Also, I never feel thirsty or hungry anymore and my hair is quite thin compared to what it used to be.

I know the problem is that my estrogen is not working and I can't seem to figure out what to do to make it work and absorb. The girl in that post has almost the exact same story as mine and I cant figure out what the solution is.I have tried different E delivery systems/dosages but the pre op method/dose I was on seems to make me feel the best (or least horrible). If my estrogen worked, I know my brain fog, fatigue, facial hair, body hair, metabolism issues would subside. Myself and all my other post op T friends are experiencing varying degrees of this and they too have seen numerous physicians. All have also tried anti-depressants to see if that would do anything but that was also a fail. Can anyone help me solve this puzzle or offer some sort of similar experience? How do I make my estrogen work? Thank you so much. I am starting to lose hope :(

P.S. Here is the link again for the other girl's story I found but to see her post you have to scroll down almost to the bottom and her name is Anonymous. http://mtf.livejournal.com/580314.html
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Ms. OBrien CVT


  
It does not take courage or bravery to change your gender.  It takes fear of living one more day in the wrong one.~me
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Princess_Jasmine

Quote from: Ms. OBrien on December 22, 2012, 09:59:20 AM
It maybe some thing else.

Check these threads.

https://www.susans.org/forums/index.php/topic,118303.msg909402.html#msg909402

https://www.susans.org/forums/index.php/topic,127407.msg1004874.html#msg1004874

Ms. OBrien thank you for trying but these are my previous (failed) attempts at posts for answers. The second one was when I was curing my H pylori and I felt better momentarily with the fog. Of course, that clearly was not the solution. Right now I am feeling like development of metabolic syndrome due to low testosterone might be the disease I am dealing with. Anyone have any ideas?
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Annah

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Catherine Sarah

Hi Jasmine,

Was hoping your last discovery to get everything going for you, would be ultimate solution. Sorry to hear you're not as well as we'd like you to be.

I have absolutely no idea whatsoever on the matter. Only the suggestion, your condition needs to be elevated to a higher level of Endo/medical investigation. Perhaps to the professorial/research area of endocrinology/rare diseases.

Keep in touch and let us know mow you are coping. To keep you as straight and level as possible, perhaps a chat with your therapist could assist getting you over these 'humps'

Lotsa Huggs
Catherine




If you're in Australia and are subject to Domestic Violence or Violence against Women, call 1800-RESPECT (1800-737-7328) for assistance.
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Princess_Jasmine

Quote from: Annah on December 22, 2012, 09:40:46 PM
have you tried the therapy route post op?
I did but it did not resolve any of my issues. I think therapy for me now is more for dealing with the depression of not feeling like myself and the health problems I have developed since my surgery.

Thank you Catherine I appreciate that so much. Although I have not seen my therapist in a while, I do talk very often with my best friends/mother for emotional support and I have to say it helps a ton to get me through these times.

I just miss my feminization of my body/brain and I want it back :/
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Joelene9

  The estrogen is working.  You have reached a plateau in life that cis women have during menopause or from hysterectomies.  You do not have the monthly hormonal cycles, menses, and the mood shifts that cis women in your age group have.  You'll probably never have most of these things, they are hard to emulate.  I hit this plateau already, I supposed to be menopausal anyway with my age.  These cycles in a woman's life actually reassures her that she's a woman, mortal and human even though she may complain about the side effects. 
  We have to do things that would bring up the simple joys that come with womanhood. 

  Joelene
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Joelene9

  Progesterone cycling actually helped fend off the nasty mood swings I had before, not bring them on.  I've been off of Provera since August because my Dr. says it is ineffective with my breast development at my age and reports came out that it was inconclusive on increasing breast growth.  Those G-BLEEP-ED mood swings haven't returned since being on HRT and with the recent dropping of the progesterone didn't bring them back. 

  Joelene
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Elsa

I am not too sure but I have read somewhere that there are cases where T is still produced in the body post op, although in very low levels.

It's been a while since I've read that article but I don't honestly remember much from it.

I am really sorry for what's happening and do hope things get better - and I still remember your previous posts where you said things were getting better and was actually happy that they were.

Have you tried a different method of administering your E dose, I am guessing you are taking it in orally right now. Maybe injections or transdermally might be have better results. Also, there is always a possibility of your food intake affecting things as well.
I would recommend staying away from alcohol . Maybe adding protein and vitamin supplements might help as well. Try staying away from foods that could stop your E from being absorbed or those that increase your T levels.

There could be other meds that you could try instead of the ones you have been taking - you could try asking your endo for more options on both way to absorb the E as well as a different med for taking in the E and T blockers.
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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Princess_Jasmine

Quote from: Alexia6 on December 23, 2012, 03:27:20 AM
I am not too sure but I have read somewhere that there are cases where T is still produced in the body post op, although in very low levels.

It's been a while since I've read that article but I don't honestly remember much from it.

I am really sorry for what's happening and do hope things get better - and I still remember your previous posts where you said things were getting better and was actually happy that they were.

Have you tried a different method of administering your E dose, I am guessing you are taking it in orally right now. Maybe injections or transdermally might be have better results. Also, there is always a possibility of your food intake affecting things as well.
I would recommend staying away from alcohol . Maybe adding protein and vitamin supplements might help as well. Try staying away from foods that could stop your E from being absorbed or those that increase your T levels.

There could be other meds that you could try instead of the ones you have been taking - you could try asking your endo for more options on both way to absorb the E as well as a different med for taking in the E and T blockers.

Thank you Alexia6 I really appreciate the support. Yes, right now I am taking my E orally by using the sublingual method. I have tried injections for a couple of months but they gave me really crazy fluctuations and when I tried transdermal, the E was poorly absorbed (regardless of the application site). I feel now that I am on the best E dosage/delivery of all I have tried. I just still don't feel like its feminizing me and I have noticed chest hairs developing that I never had before. I feel like all of my symptoms sound like a girl with PCOS; however, my testosterone keeps testing very low. :(
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Elsa

Quote from: Princess_Jasmine on December 23, 2012, 03:53:02 AM
I feel like all of my symptoms sound like a girl with PCOS; however, my testosterone keeps testing very low. :(

Have you tried pointing this out to your endo - maybe they missed it. Have they tried any treatment for PCOS for you?

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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Catherine Sarah

Hi Jasmine,

Have you tried Oestrogen implants?  They are by far the most consistent and effective form of delivery. Previous to my implant, my transdermal patches had my E levels vacillating between 300-400. First implant sent me to 2,068 pmol/L. Second test 6 weeks later they dropped to 1,800 and have sat there.

Depending on the lab that make them, they should last roughly 6 months.

Huggs
Catherine




If you're in Australia and are subject to Domestic Violence or Violence against Women, call 1800-RESPECT (1800-737-7328) for assistance.
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JessicaH

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Jennygirl

Quote from: Catherine Sarah on December 23, 2012, 07:08:18 AM
Hi Jasmine,

Have you tried Oestrogen implants?  They are by far the most consistent and effective form of delivery. Previous to my implant, my transdermal patches had my E levels vacillating between 300-400. First implant sent me to 2,068 pmol/L. Second test 6 weeks later they dropped to 1,800 and have sat there.

Depending on the lab that make them, they should last roughly 6 months.

Huggs
Catherine

I started hrt with the implant method a little over two weeks ago. I'm curious how many pellets you get? I'm already noticing good results after only a short amount of time.

When I get back in town from holiday visits I'm going to have my levels checked so it will be interesting to compare.
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Cindy

I get one implant at a time it lasts about 4 months.  My E level is around 1000 pmol/L and seems stable, it went all over the place on tablets.

I just see my gynaecologist and she does the blood test, opens up an enormous wound and drops the implant in and the staples me back together.

Oh sorry that was my Frankenstein implant. ::)

You just get a sub cutaneous needle to anaesthetise the area, a tiny cut, the implant is about the size of a pill, takes one stitch to close and that is it. I have them in my tummy skin.


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Jennygirl

Ah yeah mine are totally different in size. Definitely much smaller than your average pill. I had the option of any number between 2-13 pellets, I chose 7 to start.

Procedure was very similar. Numbing injection, tiny ~8mm cut except on the inner part of my butt cheek. Pellets inserted were probably 2-3mm in diameter and the wound was just steri stipped closed, no stitches. Instructed to remove bandaging after 3 days and could not get wet which was kind of a pain, I think I would rather just have a stitch!
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Catherine Sarah

Quote from: Cindy James on December 24, 2012, 12:45:17 AM
I just see my gynaecologist and she does the blood test, opens up an enormous wound and drops the implant in and the staples me back together.
What?  Something like this



Quote from: Cindy James on December 24, 2012, 12:45:17 AM
Oh sorry that was my Frankenstein implant. ::)

Ah! So this is you AFTER the beautician.




Have a spectacular Christmas, Sis
Love
Catherine




If you're in Australia and are subject to Domestic Violence or Violence against Women, call 1800-RESPECT (1800-737-7328) for assistance.
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Zumbagirl

When I was finally done with all of the transition business and the dust started to settle on a normal again life I ran into a similar thing. In my case I chalked it up to, I am all done changing. One thing I didn't take into consideration was all the surgical downtime and the effect it would have on my own health. I was happy to be done, but the lack of physical activity had made me lazy again.

What if discovered about myself is that healing is one thing, but getting a life back into what I was pre transition was difficult. The process had made me lazy, not by choice, but because there is nothing else to do when healing. I didn't feel that my problem was psychological or needed therapy or anti-depressants which I am totally against using on myself. Also testosterone was the furthest thing from my mind.

My cure was simple, once I figured it out. I went back to my healthy style of living, plenty of exercise, eating a lot of good food and healthy. Once the fog of laziness was lifted my life began to swing back into overdrive again. I still didn't change, because I felt I was about as hormonally change as I will ever be, but wow did I ever have tons of energy. It was a nice feeling to have that teenaged energy I had when I was transitioning in the first place. That was my experience anyways.
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Princess_Jasmine

Thanks all for the suggestions. I have tried therapy, I accept where I am at in my transition, and as stated before I have tried a variety of dosages and methods of delivery (through my endo of course) and feel I am now on the best dosage/delivery I can tolerate. Currently I have been researching into metabolic syndrome which occurs in both males and females (usually known as PCOS in women). I am starting to think that the loss of testosterone may have caused it but for some reason I can't just add testosterone back in to mend it. Taking testosterone or progesterone always ends up giving me severe adverse reactions (facial hair, acne), even at the tiniest tiniest doses. This always puzzles my endo and my other doctor I frequently talk to. I never had this reaction before my surgery to progesterone and I was on a much higher dosage then too for 10 days a month ( like a cycle). Due to the fact that a lot of my symptoms have progressively become more centered upon whether or not I eat carbohydrates could mean I have insulin resistance. My doctor told me my values from the fasting blood glucose and hemoglobin a1c were close to the cut off for being pre diabetic but because I am quite thin and had a super low fasting insulin level it is unlikely.

This is the part that irritates me. Less than two weeks ago, he said let's try a trial dose of a drug for insulin resistance that is common/safe just to see what happens and even many women with pcos take it. Its called metformin. Well, for the first three days it was like the blood was flowing back to my brain and I was getting better! Also, my breasts looked noticeably larger to the point where my friends were commenting about it and the girl at victoria's secret suggested I try a D cup over the C I usually get. But of course, it didn't last long the initial effects of it. But I am not sure if it is because I began eating some carbs at the same time or not. Its really really difficult to live on plain vegetables and lean meats but I think I will go back to that to see if I get the effect of the metformin back again. Anyhow, the current theory I have is that my insulin resistance is causing my estrogen not to work like it should. Once I reverse the insulin resistance through diet, medication, exercise, my estrogen will work. Therefore, I can begin adding back either progesterone or testosterone to keep the insulin resistance at bay without having an adverse reaction since the estrogen will be working? I know it is a far stretch but the fact that I got my brain back for 3 days just less than 2 weeks ago on this insulin resistance drug has really got me thinking! Anyone have any ideas?
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Ms. OBrien CVT

I hope this works for you, Jasmine.  Carbs are not that hard to get rid of.  Herbs and spices can help to improve the lean meats and veggies.

  
It does not take courage or bravery to change your gender.  It takes fear of living one more day in the wrong one.~me
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