Susan's Place Transgender Resources

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 (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 (http://mtf.livejournal.com/580314.html)

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,118303.msg909402.html#msg909402)

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

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,118303.msg909402.html#msg909402)

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

have you tried the therapy route post op?

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

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 :/

  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

  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

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.

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. :(

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?

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

Maybe you should check out the TS Wiley Protocal.   http://www.thewileyprotocol.com/ (http://www.thewileyprotocol.com/)

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.

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.

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!

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

(https://www.susans.org/proxy.php?request=http%3A%2F%2Fi1266.photobucket.com%2Falbums%2Fjj525%2FCEST2%2Fimage-3_zps3028d006.jpg&hash=3050c4f8f5bfc2e91302948c72d80844769e142d)

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.

(https://www.susans.org/proxy.php?request=http%3A%2F%2Fi1266.photobucket.com%2Falbums%2Fjj525%2FCEST2%2Fimage-3_zpsc8ee15f5.jpg&hash=c255ce62b07ef2a1b9cb160d72fea64aa0d5152f)


Have a spectacular Christmas, Sis
Love
Catherine

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.

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?

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.

I guess it might be possible something or maybe even some medication has caused you to have a candida overgrowth? i.e. antibiotics? Candida can cause all sorts of problems (especially brain fog) and is highly related to blood glucose levels. It is also not really recognized by modern medicine yet, so basically doctors would not know how to diagnose you with it. They might even scoff about it like mine did- it can go undiagnosed for years. Sometimes people have barely any symptoms.

Maybe try the spit test, it's worth a shot:
http://www.adhdrelief.com/CandidaTest.html (http://www.adhdrelief.com/CandidaTest.html)

I have looked into that but I wasn't sold on the idea of it being real. I tried doing the anti candida diet and I became so ill I vowed never to try again. Also, I had my yeast levels tested and they came back quite low so I doubt candida has a factor in it. Also, for some reason, spironolactone helps me immensely in terms of lack of emotion/depressive symptoms. My depressive symptoms are completely alleviated when I take it for some reason; however, it doesnt cure the underlying issue of the brain fog.

Someone messaged me from another site saying that the fact that I have a b6 toxicity and vitamin D deficiency could be the key. However, for not taking b6 ever (except in a small amount in my multivitamin) it doesnt make sense for me to have such a high level. I have been told it is probably due to my slow metabolism, which makes sense since I don't feel hungry very often ever or thirsty even..

It is definitely very real- I went through it myself not even a year ago. And when I started the no sugar diet I became extremely ill, foggy, depressed, irritable, flu like... this was the effect of the yeast dying off and releasing heavy levels of toxins into the bloodstream.

It took over a month until the die off symptoms subsided. OK enough about candida, sorry ;D

One great thing that it did teach me is that most of the body's problems can be cured or a least treated with diet. Have you thought about seeing a nutritionist? They might might be able to help if you feel like you've exhausted standard avenues of medicine.

Also I would not trust a multivitamin. They are hard on the stomach and without the presence of other vitamins, minerals, and enzymes there are a lot of contents that won't even be absorbed by the body. Supplementing with food is a much better way for your body to absorb what it needs.

I am no nutritionist and really only have a surface level knowledge of a lot of this stuff, but it has helped me stay well ever since so I figured I would share :D

Hey everyone here is an update!

I went to the new endo today (second appt) and she pretty much looked at all of my labs and told me that my dose of E is much too high. She based this off my LH and FSH being extremely low (.2 and .4 respectively). I was shocked because my E dose from what I know is not high at all, especially considering my young age of 23. I told her I can't function on lower dosages, as I have tried that for a long period of time before. She then told me that she doesn't think my problem is hormonal since my thyroid and other hormones are all in normal ranges. She then did what every other doctor has done, which was recommend me to a different type of doctor (gastro,primary,neuro, etc). I feel so frustrated!!! She could tell I was becoming irritated too, but I couldn't help it! I am paying you all of this money for you to give up on me? I am telling you I have brain fog, my hair is falling out/thinner, I have hair on my body and face I never had before, insomnia, slow metabolism and you're telling me sorry your labs are fine? Obviously I know the labs were going to look "normal" since they have ever since my surgery. I didn't pay that much money to find out something I already knew :(

Anyways, from what I believe is the solution is that my thyroid hormone t3 being low is the cause. It is the only cause of facial hair I could find aside from excess testosterone (and my testosterone is in the low-normal range)I know that all of my symptoms are directly related to my thyroid. Going on the metformin last month made my hair fall out and have an exaggeration of my hypothyroid symptoms, and my research shows that only people with an underlying thyroid issue have this reaction to metformin. I did my thyroid labs, and my t3 happens to be at the bottom of the range. This has to be it, but I don't know how you treat low t3 when my t4 is normal. For some reason, there must be a reason I am not converting t4 to t3.....Sorry for this long post/rant I just wanted to update you all on things! Any suggestions or comments are always appreciated <3

I don't know much to be able to give you any usefull advice here, but have you tried asking your endo this question?

Quote from: Princess_Jasmine on December 22, 2012, 05:22:28 AM
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 (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 (http://mtf.livejournal.com/580314.html)

Weight and height? Other drugs, legal or otherwise?  alcohol consumption? stress? depression? other mental conditions?

Height: 5'6"
Weight: 126
Medications: generic estrace pills (was on spiro but recently quit)
Alcohol: Never
Stress/depression: just irritation/frustration with this brain fog issue and defeminisation; otherwise, everything else in my life is going quite beautifully.

Oh I also take a multivitamin, fish oil, and B vitamins daily. I exercise when I'm not too fatigued. I eat very healthy too (plenty of vegetables, lean meats, etc). I am honestly doing everything within my own control to remain as healthy as possible to encourage this issue to resolve itself. Help :(

Are you a smoker?

Quote from: sandrauk on January 10, 2013, 05:26:26 AM
Are you a smoker?

Hah no I have never even tried it. I have also had an mri done on my pituitary and brain just to make sure everything is alright and it came back fine. My prolactin level is fine, tsh fluctuates between 1-2, etc.

My labs that I got back yesterday show my renin plasma aldosterone ratio to be quite high which I have no idea what that means, but my endo says that is normal for being on spiro (which I recently quit). Also, my hands and fingers and ankles have been fat/swollen ever since this started as if I'm retaining water in them or something. One thing I noticed is if I fall asleep early without taking my estradiol (happens very very rarely), I wake up and my face looks "better" which is the only way I can describe it (less swollen, younger, thinner). The thing is I thought hmm maybe I should take less and of course I tried the lower dosage a while ago but I could tell my body needed more. My face just seems to  always look "worse" in the morning after my E dose at bedtime regardless. Hmmm..

At the risk of repeating Zumbagirl #18, perhaps you need to try to live with this.

You do seem very concerned about your appearance. While your physical health seems to be suffering from a continual barrage of medical interventions.

One thing I've learnt in this world is, being attractive and good looking comes from within.

It's just hard you know? To transition and then to have your hormones not work like they should and then look in the mirror and see yourself de-transitioning, especially at only 23 years old. It's simply frustrating is the best way to put it. I refuse to "learn to live with it." I did not come all this way to have a malfunctional brain with no memory, defeminising body, and consistent fatigue. I am only 23 years old.

From this point on, I'd appreciate suggestions from people who have had similar experiences or a friend who did and what medically helped as this is a medical issue I am experiencing. Suggestions such as  learn to live with it or look into mental health concerns are neither appreciated nor helpful. Trust me, I was the first to look into these possibilities since I do not have so much pride that I would not do what ever it is necessary to make this situation better. Unfortunately, those avenues were obviously not the solution. In fact, it's the same suggestion I have consistently been hearing from multiple doctors when they give up. So please, medical suggestions as to what is going on with my body only please!

Thank you <3

Did they test your cortisol level? If so, what level is it? Did they test anything besides T3 regarding thyroid?

Here are my cortisol results checked on two separate occasions from a year ago. My doctor told me these were normal?

Cortisol, total 20.6 mcg/dL     collected 9:37 am   
Cortisol, total 8.9 mcg/ dL      collected 2:48 pm   

Just had a thyroid panel done and here are the results from last week:

TSH, 3rd generation w/ reflex to FT4         2.00 mIU/L 

T4 (thyroxine), total           8.4 mcg/dL       (range 4.5 - 12.0 mcg/dL)
T3, free                              2.6 pg/mL         (range 2.3-4.2 pg/mL)
T3, total                             99 ng/dL           (range 76-181 ng/dL)
Thyroglobulin antibodies       <20 IU/mL      (range <20 IU/mL)
Thyroid peroxidase antibodies     14 IU/mL   (range <35 IU/mL)

Hi just had a read through this.

Everything is looking pretty normal in the thyroid, Low etc is fine low LH and FSH doesn't worry me. There seems to be a problem with the oestrogen from everything you are reporting.

I'm wondering what form of E are you taking? I don't want dosages.

I had similar symptoms and my E levels were sky high even though I was taking a low dose of progynova. Endo and I got very worried and couldn't explain it. My SHBG levels were also increasing and again for no apparent reason as my T levels were low when I began and then zilch on progynova. I was taken off progynova and went onto oestrogen implants so that liver processing of the oestradiol valerate did not need to occur. My E levels have been normal ever since and all bloating symptoms have gone.

Ever since things have stabilised I have had quite dramatic feminisation of my skin and hair growth. I've also had considerably more boob growth on implants than on tablets even though my circulating E levels are dramatically lower on implants.

We (my Endo and I - I'm a medic) sort of made the totally unprovable theory that I was suffering some sort of E toxicity and that there was a failure for circulating E to bind to the appropriate receptors due to some structural change and so I kept producing more and more useless E that was detected in the screening assay and not doing its job.

Since we could neither prove or disprove this we gave up and said lets go with the flow.

Quote from: Cindy James on January 11, 2013, 01:21:13 AM
Hi just had a read through this.

Everything is looking pretty normal in the thyroid, Low etc is fine low LH and FSH doesn't worry me. There seems to be a problem with the oestrogen from everything you are reporting.

I'm wondering what form of E are you taking? I don't want dosages.

I had similar symptoms and my E levels were sky high even though I was taking a low dose of progynova. Endo and I got very worried and couldn't explain it. My SHBG levels were also increasing and again for no apparent reason as my T levels were low when I began and then zilch on progynova. I was taken off progynova and went onto oestrogen implants so that liver processing of the oestradiol valerate did not need to occur. My E levels have been normal ever since and all bloating symptoms have gone.

Ever since things have stabilised I have had quite dramatic feminisation of my skin and hair growth. I've also had considerably more boob growth on implants than on tablets even though my circulating E levels are dramatically lower on implants.

We (my Endo and I - I'm a medic) sort of made the totally unprovable theory that I was suffering some sort of E toxicity and that there was a failure for circulating E to bind to the appropriate receptors due to some structural change and so I kept producing more and more useless E that was detected in the screening assay and not doing its job.

Since we could neither prove or disprove this we gave up and said lets go with the flow.

Hi Cindy! Thank you so much for this reply! I have been on generic estrace pills using the sublingual method since I started transitioning. However, I am not so sure how much really does bypass the liver. I take them right before bedtime and leave them under my tongue while sleeping because I find that I require hours for the pill to absorb fully. Who knows if I am swallowing a little in my sleep? I feel like most of it is being absorbed sublingually... I have tried to do it sublingually during the day but the time required is too long considering I need to be able to speak and eat. My SHBG level isn't very high so doesn't that technically mean my liver isn't processing it as much or at all, which means I am in fact bypassing the liver? The transbuccal method doesnt work either. After my surgery, I tried different methods, but none of them seemed to take. I was placed on a compounded estrogen gel which never seemed to absorb, high quality compounded estrogen transdermal creams  (which literally did not absorb at all to the point where I developed hot flashes within a day), and injections. Now, I will say, looking back at my hormone diary that I was instructed to keep, I did feel best on the injections as compared to any other method. However, the injections never lasted more than 3 days for me and I could feel the surge and drop too much. I gave up on them after a month. Perhaps if I had given them more time this would've resolved? I didn't consider it too much because of the cost of doing so many injections, the fluctuations, etc. I was taking spironolactone at the same time as well.

I was really thinking of the implant but I am not sure what dosage or levels would be appropriate. My E levels that I feel best on usually run in the high 400s 500s range. I don't know how to convert that?

My idea that I am thinking will be a good one is to call my endo tomorrow about doing a compounded estradiol suppository. I could take it once a day like I do my pills, but at least this would be a 100% sure way of bypassing the liver right? I am not sure if the vaginal tissues we have would absorb it the same way as a GG, so I guess I would have to use it rectally in order to avoid the liver while absorbing it correctly into my bloodstream? Hmmm......

I really appreciate your response Cindy because I feel it might be the ticket to fixing this! I will look into this and call my endo tomorrow. Thanks so much! <3

My E level is a tad over 600 and maintains that level for four months at a time on an implant.

I didn't used to take Spiro at all but started recently to help body hair loss.

From my understanding it is the form of oestrogen that requires liver processing. The implant is straight oestrogen so it binds directly to the receptors while circulating, progynova for example need to be processed to be cleaved into oestrogen. I'm not going to go into technical stuff because I know that it will only creates arguments that are pointless to the situation you are facing. I'm not an endocrinologist or a biochemist so unless there are people with appropriate qualifications I think my opinion derived from my endocrinologist will suit me :laugh: - the remark is not addressed to you BTW.

Implants are common in Australia and are used to treat post menopausal woman. So maybe discuss that with your professional.

My endocrinologist looks after a large number of people who require hormonal intervention for gender problems, and she was stumped by my response, so do take heart that what you are going through is uncommon but can be overcome.

It just needs care and proper scientific method.


Hugs
Cindy

What is your free testosterone and estrogen levels?

I've had a similar experience to you.  Hopefully my story can be of some benefit for you.

From SRS until about 6 months ago I'd been on Marvelon 28 (Ethinyloestradiol and Desogestrel).  Then about 6/7 months ago I was switched to Zumenon (Estradiol), and things really started to pick up.  It took about 4 months for the effects to kick in, but since then I've never looked back.

I didn't really even know about brain fog and what it was until recently, but having come out of the fog now and looking back I can see that's what I've been living with for at least the last 10 years, maybe more.  Now I can see that over those years I slowly developed quite a few of the symptoms associated with perimenopause.  I have been stealth for years and never thought about TS issues and had gone for years without any other Transgirl contacts.

Probably from about 2 years PO I lost all my libibo, never gave sex a second thought.  Also I would always be hungry.  I could never get enough food.  No doubt this was linked to my weight gain.

Weight started to slowly increase until mid 2012 I was 35+ kgs (80lbs) over my SRS weight.  I had made a few attempts over the years to get it down, but I could never really get serious about this, no doubt to brain fogginess/apathy.

At 4 - 5 years PO I started to come down with regular 3 - 4 monthly sick periods - virus like symptoms that would last up to a week, then come back a week or two later.  Thinking back on it there were no real medical symptoms.  Just severe grogginess, nausea and intense apathy.  These gradually got more frequent until a few months ago after changing onto Zumenon when I started to feel normal.

From 2005 - 8 years PO - I developed severe panic attacks, which kept me off work for weeks at first until I adapted and learnt to deal with it.  I still have these, but am in control now and they are occurring less.

Around the same time I started to get Migraines.  Pre op I never had migraines.  At least I only got them in clusters, that is they would come on a few times a year, all within a week or two, then go away for another year or more.  I haven't had one since being on Zumenon.

Other symptoms that I learnt to live with:
- Anxiety, feelings of doom.
- Regular breast tenderness.
- Itchy, crawly skin, so bad sometimes I had to get up out of bed.  It quite often stopped sleep.  But at least it wasn't frequent and normally only happened when I had run out of HRT and didn't take it for a while.
- Trouble sleeping.  This was exacerbated by my 24/7 shift work.
- Fatigue
- Intense apathy
- Mood swings.  I could get quite nasty at times, but learnt to control this (especially at work).  Never really went to tears or anything, but that's just the way I am.
- Acid/reflux - never had this pre op.  Now I have a hiatus hernia and have to take prescription antacid tablets every day. 
- I'd quite often feel like I was coming down with the flu, having aches and pains in the joints.  Luckily they went away as fast as they came.

Many of the above symptoms have been reported by women taking Marvelon 28 and other contraceptive pills.

http://www.power-surge.com/educate/34symptoms.htm (http://www.power-surge.com/educate/34symptoms.htm)

Anything would trigger my grogginess/brain fog - back pains, bad nights sleep, looking the wrong way, sometimes no reason at all.  I'd feel like this so often it became normal to feel that way.  This became worse during 2012, and I was seriously considering going to the doctor about it and should have.  Anyway, switching to Zumenon has fixed most of my woes above.  I had just got used to them and never really put it down to my previous HRT.  But really, looking back it was like a continual perimenopause.

During that time I never really cared much about my appearance either.  Never wore makeup or anything.  Not that I'd been into makeup that much, only wearing it when I had to.  I suppose this is in line with all the weight I put on, and general apathy.

It's took about 4 - 5 months since I've been on Zumenon for most of those feelings to clear.  The brain fog has lifted.  I rarely have sick days now where I previously I always seemed to have a 'virus' coming on.  I've got so much more energy.  I can think clearly.  I started losing weight.  Where previously I'd avoid the gym now I can't wait to get there.  I'm doing strength training and using MyFitnessPal to lose weight and tone up.  And it's working well.  I've never felt better.  Have even started to get my libido back  ;D

Oh yeah, I never had a blood workup for E levels until last October.  I can't even remember the last time I had a test for it. Probably not since 1 year post op.  Big mistake I'd say.  Anyway, the result showed that I was low - about 200, so the Dr told me to double my Zumenon intake. 

I'm lucky not to have had some of the symptoms you mentioned - hair thinning and facial hair, defeminization etc.  But they are mentioned as some of the symptoms of perimenopause.  Our bodies all respond to these things differently.  So, I'd say you can definitely overcome these problems.  Cindy has pointed you in the right direction and if you can get on the right type of E for you then you can start feeling normal and love life again.

Anyway, I hope this makes sense and is of some value.

Just a reminder.  No dosages please.

Quote from: Ms. OBrien on January 11, 2013, 06:31:42 PM
Just a reminder.  No dosages please.

Ooops

I'm not sure if anyone is checking this thread any more or will receive notification of this reply but I have a question or two and a comment or two.

Has anyone here ever heard of the body or estrogen receptors more specifically becoming "desensitized" over time in response to consistently very high levels of estrogen? I  believe the receptors can become resistant to estrogen the same way that insulin receptors can become resistant to insulin. I know some people probably don't want to believe this but I think it's very true. I believe some fluctuation in e levels is good wheres and constant and steady stream might not be quite as effective. I'm having issues just the same being post op and I'm certain that I'm not softening as much as I should. I don't think the patches that I've worn are very effective and the absorption is extremely low. I believe some sort of cycle is probably the best in my opinion. I don't have an endoc I have a couple of family doctors and if you ask them to test your e levels they will just laugh and say its not important. I'm post op and don't feel quite right hormonally either and don't feel like the estrogen is working like it should either.

Angela

Hi Angela,

My suggestion would be to drop your family doctors. They appear to have either or both, no interest in your case or no understanding of endocrinology.

Having said that, it may serve you well to be totally checked out by an Endo. Lots of things can change, post, that you need to know. Cycling hormones should have no effect on your outcomes. The body will only absorb and use what is necessary. It may be more a case of insufficient supply. Only an Endo can know the solution.

Huggs
Catherine

Old post but...I tend to believe that too steady levels could desensitize cells although who really knows? This is only my suspicion based on my limited knowledge of biological processes. It may be that patches just don't give enough E in YOUR case...Best, as always, is to talk about it with your doctor and see what they say. We can only give suggestions but the doctor has the last word. ;)