Best of luck to you as well.
So, received a lot of news today. Seems my Cortisol situation has flipped and Testosterone has risen. Although, it should be noted that I had not ejaculated in about a weekās time. This might have affected those results.
My Prolactin is the latest curveball, which is very high. It was only slightly previously (18). Estradiol also rose from 17 to 33.2. WBC remains low. In March was 6.6 (before Saw Palmetto), dropped to 3.7 in July, now is 3.6.
While Vitamin D had been taken previously and was at 32.5, we will not repeat that until the next round of tests. Weāll also repeat 3 Alpha Androstenediol Glucuronide and DHT then as well.
For a variety of reasons, itās being suggested I have a Pituitary MRI. The current hold-off is finding an Iodine alternative (to avoid a reaction). Itās possible I have a tumor or more likely āpseudo-tumorā that would have likely been caused by the drugs and is causing me to produce excess Prolactin. This may drop naturally and or may require a pill. That is something else we also want to hold off on, as you well know, anything taken can make things worse. Please see my latest blood and 24 Hour Urinary Cortisol tests below and let me know if you have similar issues/results. Perhaps, we can help each other.
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I really doubt you have a pituitary tumor. I also had high prolactin, just over 30 on your scale. Later it came down to normal range.
Although I felt better when taking the 2nd test, itās not āthe cureā by any means. Iād refrain from using any dopamine agonist to bring it down. They have nasty sides themself. But a pituitary scan might be worth it for ease of mind.
Also your doc should really have ordered a sensitive E2 test. Although serum E2 doesnāt seem to hold much answers either.
CSF and plasma hormones doesnāt seem to correlate much at all in PFS patients. Melcagnis studies showed pretty consistently that PFS patients had a ~20 fold decrease of E2 compared to controls in CSF. I doubt any of them had such deviations in serum.
Now imagine for example youād add an AI into that mix based on your serum levels, scary stuff!
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Thank you very much for the detailed response, @Cbrandel. Much obliged. I agree with you, I highly doubt I have a tumor as well. Something is definitely āoffā though with my Pituitary. So, like you said, Iām considering for ease of mind.
I also am very hesitant to take anything. Iām glad you wrote what you did. Itās exactly why I posted here. You confirmed my concern.
Appreciate the suggestion. I will ask for the sensitive E2 test. It may not hold much answers, but canāt hurt to have documented.
Agreed about AIās, scary as all hell!
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@LazarusRy How are you today? Out of curiosity, do you have any additional info on the gentleman who recovered everything including skin/facial changes after 2 years? If at all possible, Iād like to share with my doctors. Hoping there is some sort of clue there that can help us. @aletheia 's story is very interesting as well. Iāve already shared that.
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Heās in the photographic changes section somewhere. Iāll see if I can find him later this week
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Thanks!
Hi @Fighter1 the guy who recovered was aletheia you can find some of his posts in the photographic changes thread. Thereās a before and after facial shot 2 years later he recovered and the facial changes reversed.
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Got 'em all. Thanks Laz! Will be in touch 
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Out of curiosity, has anyone else (thank you @Cbrandel) also had Prolactin out of range and if so, what happened? Did you take any course of action? What worked, what didnāt? Might not be a total cure, but canāt hurt to bring it down (naturally).
Saw my doctors again today. Hereās whatās been decided. Going to test my blood for a month. Need to see if Prolactin level was fluke. Also, will be doing these tests:
3 Alpha Androstenediol Glucuronide
DHT
Estradiol (E2) Sensitive
Vitamin D
If Prolactin remains high, I will have a Pituitary MRI on December 1st. If tumor is found, I will likely take pill. If no tumor is found (and we all agree this is most likely scenario), we will avoid pill. Not just because that could make things worse, but clearly the high Prolactin is just a stress response. Not the problem.
Any thoughts or similar experiences that could be shared would be greatly appreciated. Thank you.
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Got my Connective Tissue Disorders Panel DNA Testing Results. Only one odd thing found with: ADAMTSL4
Itās also worth noting, my samples took two weeks longer than most people. They were about ready to suggest swabbing my mouth again. Is that significant?
Anyone else discover this? Does it mean anything? Discussing with my doctors tomorrow. Thanks in advance!
Certain SNPs in ADAMTSL4 seems to affect the eyes negatively.
But the one you got isnāt linked to any specific disease in the literature that I could find.
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Thank you for sharing this. I found the eye information as well. You also literally quoted my doctor today āwhat I have is not linked to any specific disease (currently)ā. I was told that Invitae the Company that runs the tests will reach out to me, should it ever be discovered that it is linked to any sort of disease, etc.
For the first seven months of this, the one thing that somehow stayed relatively normal was my erect penis size and strength (certainly not flaccid). Go figure. Unfortunately though, recently when it is erect, while the shaft is hard. The head is not. Itās soft, can be pushed in, pushed together, all sorts of weird ways. If you push down far enough you can feel some harder tissue (which I believe is what normally is there). My concern is the tissue in my penis head has wasted. Or, could it just be the fat that surrounded the tissue is hopefully just temporarily gone? Has this happened to you? Did it come back at anytime? Please let me know. Thank you.
P.S. I notice something sort of similar with the tip of my nose. I can grab the skin and bunch it together and feel the cartilage underneath. Whatever was in between is gone. Again, hopefully temporarily.
Super happy (and horny lol) to finally post some positive news!! First of all, to anyone on the fence about Pelvic Floor Therapyā¦DO IT!!! As mentioned above, my erect penis was finally starting to falterā¦was really worriedā¦well, not anymore. In the middle of my session, she was working my lower abdominal/groin areaā¦I felt the blood flowing thru the lower half of my body again, I felt re-born. Then, suddenly out of nowhere bam, the FULL SIZE FULLY BOOKED plane was ready for takeoff. Little embarrassing, but she was great about it and said itās to be expected. Weāre activating those areas. Anyway, when I got home, I tested things. I couldnāt help myself. Shaft and head were completely hard again and one of the most pleasurable orgasms ever. Iām talking PRE-SAW PALMETTO!! I cannot stress this enough. The belief is because of our muscles falling apart, itās cutting off blood flow and putting pressure on nerves. This can be opened up with internal (yes, you read that right, like a long prostate exam, once initial shock over, not that bad, donāt worry) and external therapy. I even got micro needling therapy in Perineum (this worked wonders). They hurt going in a little bit, then went numb, and so far since then, I feel like my old self down there. Scratch that, better than ever!! Iām seriously tempted to ātest runā things another time, but wonāt push my luck. I have enough Prolactin, thank you very much!
P.S. My flaccid size is constantly fluctuating now between Saw Palmetto small and ānearlyā pre-fin. This is after 3 one hour sessions too (2 days a week). So, looking very good. Also, doing regular physical therapy/workouts with a personal trainer (3 days a week). Tough and very sore each day, but pushing as hard as I can (think Iām getting a little muscle back, again not too many sessions yet, but will keep you posted). Hired diet specialist as well. Testing all sorts of things. Will share everything I learn here. You guys have helped me save some bucks, so let me return the favor
So, bottom line, donāt give up on sexual symptoms, give Pelvic Floor Therapy a try! I mean even my mood is better
So since I made the plane reference earlier, Iāll leave you with this: Tower, this is Ghost Rider requesting a flyby 
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Hey mate, Good stuff! stoked you are doing well! I suggest reading the āheadache in the pelvisā. Just started reading myself, pretty informative.
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Thanks buddy! Just ordered the book, looking forward to it. Appreciate the tip 
Amazing article about one hell of a son. This should give us all hope: https://www.nytimes.com/2021/11/04/health/sharif-tabebordbar-gene-therapy.html?utm_source=pocket-newtab
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Hey man, how is the pelvic floor therapy going? I have severe shrinkage as well after saw palmetto and willing to give this another go with a professional.
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