Hello everybody! I have been posting on here ever since I had my SRS a year and a half ago, and I cannot believe the brain fog and loss of development ive gone through ever since my SRS. I am now 22 years old and I developed very quickly on hormones before my surgery and I felt absolutely amazing. Ever since my surgery, my doctor had me cut out the anti androgens and halve my E dose. Almost immediately I developed brain fog where I feel like there is a cotton cloud surrounding my brain and I am no longer myself. Also, I developed severe fatigue, specifically in my upper arms that made me not even want to get out of bed. I ended up increasing my dose to my pre op dosage of oral estradiol, and the fatigue in my arms became even worse. My metabolism and anxiety would increase even worse in addition to my anxiety as well as the brittle and dryness of my hair. I dont understand how or why this has happened to me but I miss the person I used to be and I miss my soul. I never thought all this would happen to me after my surgery My doctor ended up putting me on a low transdermal dose of testosterone but that never really did much but slightly energize me and give me facial hair. I have been placed on progesterone and I do feel like that is a part of the key to feeling like myself again but I cant seem to get my brain function to turn on still. My metabolism used to be extremely fast before surgery but now it is no where what it used to be and I get this horrible anxiety for no reason at times over nothing at all! Also, my skin takes forever to heal and my hair has become less full and brittle. I used to take my pills all together at night once a day before surgery. Now, my new doctor has instructed me to take E twice a day but when I do the second dose of E in the morning just makes me feel weird. However, if I dont take a second dose of E, I get itchy and symptoms of low estrogen.

I switched to a new doctor who placed me on transdermal estrogen gel but when they tested my levels, I ended up having an estradiol reading of 37 pg/mL, progesterone less than .5 ng/mL, and testosterone 9 ng/dL. I have always had really low testosterone levels even before surgery so I dont feel like thats the problem. The problem with my estrogen level is that when I looked at the labs from my original endo before my surgery, he never tested my actual estradiol level, he only tested my total estrogens level which usually came out to 600-700 pg/ mL. So, I will never actually know what estradiol level I need now that will make me feel good which is why this whole guess and check game is such a mess.

What is going on here?!?! I am going to my new doctor tomorrow (who tells me my symptoms mimic a menopausal woman) to switch from pills to injections and I am hoping it helps. Has anyone experienced something similar?

Have you ever been on Dutasteride or Finasteride? It would also be helpful if you listed, without dosages, all medications you take.

From the symptoms alone, not knowing your medication history, I can't help but mention the similarities from what you describe with the side effects of inhibition or other problems with the 5AR enzyme.

Brain fog and anxiety, relating to hormones, indicate among other possibilities abnormal levels of certain neurosteroids like THDOC Allopregnanolone, both of which are inhibited by drugs like Dutasteride and Finasteride and can remain irregular post discontinuation of therapy.

Please give a reply with your medication history.

As I said, I'm not a doctor, but if I can I'd love to help maybe give you some advice into what direction to look at seeking medical support in.

This is very likely a hormonal problem, like neurosteroid biosynthesis inhibition.

If nothing else, I hope I can give you some assurance that the brain is a very adaptable organ, I've seen a lot of people who've messed up their neurochemistry with drugs (the recreational kind, usually designer drugs of which little is known about), who thought they'd done permanent damage after they stopped using, and over a period of times, sometimes longer sometimes shorter, got back to normal.

Have you had any improvement over the period of time since your SRS?

Hope any of this helps. Try to remain optimistic, it may well be that introduction of higher estrogen levels will help resolve your symptoms.

Thank you so much for your response you are one of the first to actually try to crack this case. The answer is no I never took dutasteride or finasteride. Ive only ever been on spironolactone before surgery along with estradiol pills and I would cycle progesterone for 10 days every month. Post surgery I was instructed to drop the spiro but I have since added it 4 months ago in hoping it would make me feel better. Now I take spiro, estradiol pills, and most recently added a slow release progesterone capsule every night. As time has passed since surgery, my brain fog and loss of development have become worse. I dont know what to do I am so sad especially since I dont know how to fix this and it puzzles me that I dont see more post op girls with hormone issues. It makes me feel so alone!

Quote from: Princess_Jasmine on April 05, 2012, 01:59:58 AM
Thank you so much for your response you are one of the first to actually try to crack this case. The answer is no I never took dutasteride or finasteride. Ive only ever been on spironolactone before surgery along with estradiol pills and I would cycle progesterone for 10 days every month. Post surgery I was instructed to drop the spiro but I have since added it 4 months ago in hoping it would make me feel better. Now I take spiro, estradiol pills, and most recently added a slow release progesterone capsule every night. As time has passed since surgery, my brain fog and loss of development have become worse. I dont know what to do I am so sad especially since I dont know how to fix this and it puzzles me that I dont see more post op girls with hormone issues. It makes me feel so alone!

From what you've said, it's likely low estradiol. Hormones absolutely can cause exactly these kinds of symptoms. Both sex hormones and other types of steroids in the brain.

37 pg/mL is definitely on the lower side of the reference range. Hopefully as that's increased your symptoms will subside. Definitely encourage your doctor to try and increase your levels of estradiol to a higher side of the safe reference range, closer to what it likely was pre-op.

If that doesn't work, and it may take time to feel better, it may be useful to ask your doctor about other drugs to try and combat the symptoms. The approaches you've described so far are attempts to tackle the cause rather than the symptoms, which is definitely a good thing, but after so long, is other approach's aren't working, it may be worth asking them if they're willing to try and treat the symptoms. Anxiety depression and lack of energy are all symptoms with various pharmacological treatments. Brain fog is a bit harder to treat unfortunately. Don't give up hope, I'm sure it's frustrating and depressing, but it sounds like there's still many treatments to try.

Hard times can be gotten through. I hope you have a good support network and coping strategies until a more permanent solution can be found.

37 is WAY too low, I would suggest making another appointment with your doctor about it.

You have my sympathy.  I have a dear friend who suffers from Fibromyalgia, and has  "brain fog" a lot of the time. 

Karen.

Thank you all so much I am trying to make it through this one day at a time and I have been leaning on my best friends for emotional support. Its hard to talk to people about this sometimes because my biggest fear is they will think I regret my surgery, which is NOT AT ALL the problem I am experiencing. I just want blood flow to my brain again so I can think clearly and function like myself again. It seems that none of the transdermal estradiol methods work for me regardless of how much I use.

Is it possible there is something preventing my body from absorbing estrogen like the spironolactone I am taking? I take it sublingually with my Estradiol every night just like I did pre op but could that in some weird way block estrogen absorption now that im post op?!

One other theory I have is that my adrenals are outputting tons of cortisol due to a lack of progesterone. I learned that high cortisol makes your body's cells more resistant towards hormones. Therefore, that could be why I experience low E and hypothyroid symptoms even if I take a lot. I also learned that progesterone helps to block cortisol...so could it just be a progesterone issue? I like taking progesterone but the problem is that transdermal doesnt really stay in my system very long at all. I also have the compounded orals to try but those are unpredictable as well. Ugh im seeing my doctor today so Ill keep you all posted.

Quote from: Princess_Jasmine on April 05, 2012, 12:10:30 PM
Is it possible there is something preventing my body from absorbing estrogen like the spironolactone I am taking? I take it sublingually with my Estradiol every night just like I did pre op but could that in some weird way block estrogen absorption now that im post op?!

If you are post-op why are you taking spiro?  Some people do recommend it for a few months after surgery, but most medical studies show that it isn't really needed.

Quote from: Jeneva on April 05, 2012, 01:26:01 PM
If you are post-op why are you taking spiro?  Some people do recommend it for a few months after surgery, but most medical studies show that it isn't really needed.

Depends on what her blood work shows. My doc said some post-ops still need it or they start to develop masculine qualities. Look at what happens to some females as they age and they have no testicles..

Quote from: Flan on April 05, 2012, 02:48:48 AM
37 is WAY too low, I would suggest making another appointment with your doctor about it.

As Flan said this level is way too low and at this level you are in a menopausal level.  I suffered similar symptoms and health problems (not taking any hormones).  Currently I have an implant and my levels are around 123 pg/ml and they are decreasing over time.  When they get around 35 pg/ml I will get my next implant.

As a result I'm not lethargic I have a lot of get up and go and my libido is very good and my my health improved no end.

Regards
Sarah B
Edited: Corrected figures and units.

Quote from: Sarah B on April 06, 2012, 01:36:09 AM
As Flan said this level is way too low and at this level you are in a menopausal level.  I suffered similar symptoms and health problems (not taking any hormones).  Currently I have an implant and my levels are around 450pg/ml and they are decreasing over time.  When they get around 100pg/ml I will get my next implant.

As a result I'm not lethargic I have a lot of get up and go and my libido is very good and my my health improved no end.

Regards
Sarah B

"For most women, the normal level of estrogen falls in the 50 to 400 pg/ml range of estradiol. This level will fluctuate depending on what stage the woman is in of the menstrual cycle.

"Women who have undergone menopause will have different levels of estradiol than those who have not. The common level of post-menopausal women is 10 to 20 pg/ml.

"If a woman's estradiol level is below 100 pg/ml, she may experience menopausal symptoms such as hot flashes."

A good "target level" for the transitioning MtF is about 150 pg/mL, as the fluctuation associated with the female menstrual cycle is not present.

Sorry I should have written 450 pmol/L (123 pg/ml) not 450 pg/ml.  I have corrected the figures and units in the above post.

Regards
Sarah B

I don't really have anything of value to add!!! just wanted to say, that I hope you feel better soon!!

I've had similar feelings when on a low dose of estrogen.  I think when your E levels increase in your bloodwork, you may feel better - I did.  My endo said that he wants me to be around 150pg/ml.

Hi Asfsd4214,

I found your answer to to Jasmine very interesting where you mention dutasteride and finasteride. I was on flutamide and dutasteride for a year and stopped and then restarted 6 months later on flutamide and finasteride (because of dutasterides long life). After the first year I developed definite cognitive problems like enhanced depression, brain fog and serious insecurities. Two months after the second round I stopped the drugs as I developed hot flashes, brain fog, muscle aches all over, depression and unsureness. I believe the dht inhibitors dutasteride and finasteride when mixed with other drugs have serious side effects in some people. I know these drugs affect the brain and liver so how long does it take your brain and liver to return to normal? Thanks.

Quote from: brainfogged on February 14, 2013, 08:32:41 AM
Hi Asfsd4214,

I found your answer to to Jasmine very interesting where you mention dutasteride and finasteride. I was on flutamide and dutasteride for a year and stopped and then restarted 6 months later on flutamide and finasteride (because of dutasterides long life). After the first year I developed definite cognitive problems like enhanced depression, brain fog and serious insecurities. Two months after the second round I stopped the drugs as I developed hot flashes, brain fog, muscle aches all over, depression and unsureness. I believe the dht inhibitors dutasteride and finasteride when mixed with other drugs have serious side effects in some people. I know these drugs affect the brain and liver so how long does it take your brain and liver to return to normal? Thanks.

Thank you, I doubt the liver is too baddly harmed. I'm not aware of a particularly strong association with liver toxicity in the DHT inhibitors/5AR inhibitors. As for the brain... well the good news is that these symptoms usually do subside with time, the bad news is the time can be unpredictable.

The brain is surprisingly good at repairing itself, I've seen a lot of people seriously mess up their brain with experimental drugs and fear the symptoms they were having long after stopping the drugs would last forever. It usually gets better with time. But it can vary a lot, weeks, months, sometimes years. There's really no way to know for sure. But please try and take comfort in that there's no guarantee it will take a long time for you and it most likely will get better. I want to say with Finasteride and Dutasteride it's usually a few months, but it's very very hard to say. They're definitely drugs worthy of caution though.

Quote from: Cadence Jean on April 15, 2012, 10:18:40 PM
I've had similar feelings when on a low dose of estrogen.  I think when your E levels increase in your bloodwork, you may feel better - I did.  My endo said that he wants me to be around 150pg/ml.

I take weekly injections and my normal levels right after injections are usually around the 200-300 range and my estrogen level just before injections is around 100. It's the only thing I take and the only time I would get brain fog is from having too many glasses of wine

Quote from: brainfogged on February 14, 2013, 08:32:41 AM
Hi Asfsd4214,

I found your answer to to Jasmine very interesting where you mention dutasteride and finasteride. I was on flutamide and dutasteride for a year and stopped and then restarted 6 months later on flutamide and finasteride (because of dutasterides long life). After the first year I developed definite cognitive problems like enhanced depression, brain fog and serious insecurities. Two months after the second round I stopped the drugs as I developed hot flashes, brain fog, muscle aches all over, depression and unsureness. I believe the dht inhibitors dutasteride and finasteride when mixed with other drugs have serious side effects in some people. I know these drugs affect the brain and liver so how long does it take your brain and liver to return to normal? Thanks.

I recovered from living with brain fog around 3 or 4 months ago.  I was so brain fogged I never associated it with the HRT I was on at the time and didn't have a clue at the time about the cause, or even that it was probably psychosomatic.  But it had started at around 4 years post op. 

Won't go into great detail about it here as I already posted a long diatribe in another thread if anyone cares to read it:

https://www.susans.org/forums/index.php/topic,132335.msg1062572.html#msg1062572

I never took flutamide or anything like that though as I never needed to.  I had blood tests the other week and saw my GP (who specializes in Trans matters) the other day.  We discussed my brain fog at length and she believes it was probably a form of chemical depression caused by the progesterone in the HRT I was on for the last 12 years.  The thing is it crept up on me so slowly we never noticed it.

Since changing on to Zumenon last year I've become a new person!  But it did take about 4 or 5 months for the brain fog to disappear for me to become normal again.