I have been posting on here trying to get answers as to what is going on with my body and why I am not myself emotionally or physically anymore since surgery. I am not asking to hear any responses of "you need to adjust to your new self" or "it takes time". I am over a year post op and I know exactly who I am and am fully confident in my identity as a female who also is lucky enough to be extremely passable. I dont doubt that these changes are alot to handle, but I have the right support system I use to adapt to the changes that these effect on my life. That is not my issue. This is a chemical imbalance issue.
I started HRT when I was 19 and a half and had my surgery on my 21st birthday. My problem is that I cannot seem to be myself mentally or physically since surgery. My E levels were always tested constantly presurgery and were always in the 700 range with a testosterone reading of immeasurable levels. I felt absolutely amazing and was always the super happy bubbly girl with awesome skin and a love of life. After surgery, I was told to halve my E dose and discontinue spironolactone. On this new dose, I felt fatigued, not myself, depressed, slow metabolism, loss of breast development almost completely, and average E level readings usually in the 350 range.
So, I thought naturally, the problem is I need to go back to my pre op dose of E. This however did nothing but cause much worse anxiety and fatigue so bad that I had to sleep 12 hours just to partially function throughout the day. I then tried 3/4 of my pre op dose and that did nothing but slightly reduce my anxiety/ fatigue. I have since visited different doctors and was told to try progesterone to balance or a small dose of testosterone for energy. Neither of these did the trick and the testosterone made me break out in acne.
I dont understand what is going on. Presurgery, I took my E dose + spiro together sublingually all at once before bedtime once a day. I felt absolutely superb.
My latest change to my HRT regimen has been to add back the spiro and for some reason, I feel better but the effect doesnt last long. I am sure it could be that my body is still adjusting however since I started only about two weeks ago.
My questions are: Do I still need to be on spiro? Am I just super sensitive to testosterone at all or is it because I wasnt on hrt very long before surgery? Also, why can I not feel like myself? Why can I not get my E levels to what they were pre surgery without being fatigued? Adding other hormones helps not at all but im starting to feel better with the spiro. Is it because the spiro lowers SHGB levels, which allows for more free hormones to be bioavailable? Can someone please help me piece this puzzle together? I am one of those people who is apparently sensitive to hormone changes and it seems if I dont have the exact levels my brain needs, I dont feel right at all. Can someone help me as to what is going on? Do I need to take my meds twice a day versus one? But how come since pre surgery I did great on once a day? Ugh, I am so confused. I am tired of dealing with doctors who keep telling me, take this and go by how you feel. I have an appointment coming up again but im doubtful.
Help. :(
Dear Jasmine,
I'd love to have the magic wand to wave over you and get everything back on track for you. having read your plight, to me, it takes endocrinology to an all new level. Sort of thing you nee to fine or be referred to the head of endocrinology in a specialists hospital.
It is a know fact that there has not been enough research in the field of GCS medicine; and for that reason you need to be kicking down Professorial doors. I feel anyone less than a professor will only be throwing darts at a board to see what guess might work this time. Not fair on you.
Sorry I couldn't have been more help, as i would have loved to. Keep in touch and let us know how you are coping.
Be safe, well and happy
Lotsa huggs
Catherine
Thank you Catherine for the emotional support I cannot tell you how much just reading that means to me. I really am at my wits end and I cannot endure this much longer. I dont know who to talk to anymore to fix this but I am looking for a hormone specialist that actually knows what they are talking about.
Any other suggestions?