getting my parents to understand what was wrong with me was definitely a battle. they told me that it was only because i was worrying about it at first and for a while they said it was because i had a concussion in january. it took about a month of back and forth and me showing them what i found online for them to get on the same page as me. when my muscles started to break down it was pretty clear there was a bigger problem. my parents can really see the emotion toll this is taking on me and i feel like they are really on my side now. they are divorced and dont really talk to eachother but they both assured me that they would do whatever it takes to help and would leave no stone unturned which was good to hear. again does either shippen or jacobs take insurance? someone said theres a docs section on here but i cant seem to find it.
Pretty sure Dr. Shippen doesn’t accept insurance. I don’t think Dr. Jacobs does either. I’ll pm you their phone numbers if you wanna call and ask. You have to leave a message with Jacobs’ receptionist, but they should get back in touch with you the same day. There’s also a possibility that your insurance company will reimburse some of the cost as long as you submit the receipt from the visit.
It’s reassuring to know that your parents are working with you rather than against you.
I’m beginning to wonder if this isn’t a god damn epidemic!
I have heard 2 IRL stories in the past month about 2 different girls who took accutane. One has had depression for the past 3 years and anti-depressants do not seem to be helping her. Unfortunately, the other is my sister’s former best friend, she has supposedly been acting batshit crazy since taking accutane.
(It is puzzling that women have also complained of sexual dysfunction and depression after using it, but i suppose they have androgen receptors the same as us.)
You mentioned one of your friends had great results from taking accutane, just curious, has he been acting differently since taking it?
my buddy had bad joint pain and would sleep all day most of the time during his accutane use. we smoked a lot of weed so i just assumed he was getting to high and passing out haha. hes been improving laziness wise since being off but he still spends most of his time chillen at home. maybe he has some mood swings? i dont think thats related to accutane. hes a pretty normal case. about two weeks ago a girl who im really close with and have known since i was like 1 or 2 had to have something removed because she got irritatable bowel syndrome big time. i think it was her gallbladder but im not sure. i talked to her about how messed up accutane is but i didnt mention not being able to get a hard on haha. kinda sucks how i only realized how bad it was after getting off. ill definitely have an appointment with shippen or jacobs over the summer. my moms a teacher so she has all summer off=takes me anywheree 
haha id drive myself but im not 18. i have my endo apptmnt next monday so im looking forward to testing whatever theyll let me. like i said muscle loss has been bad but ive been working out and keeping healthy and dont look much different than usual other than being kinda flabby in some spots but my gf doesnt mind 
my diets been sick good and ive been taking a few supps and im feelling decent health wise. hopefully my progress continues. ive been browsing around this forum religiously looking for good options in treatment, occasionally taking a few days off so i dont lose my mind but it looks like things could work out eventually.
How did the endo visit go?
I went in today and was surprised at how seriously the endo took me. She was a woman probably in her late 20’s and i explained to her everything i was feeling and that i wanted to have my hormones looked at to see if there was anything out of the ordinary. I think at first she thought i had been using steroids because i stressed how concerned i was about muscle loss and that i was big on working out but i assured her that was not the case! i had brought a list of things i wanted tested but she devised a list with the following before i even had to break it out. basic met pnlm, calcium, cbc, cortisol, dhea sulfate, estradiol ultrasen, fsh 3rd generation, IGF binding prot 3, IGF I ecl, LH pediatrics, prolactin, t4 free, testosterone, TSH, Vit D 250H and DHT. i was given a script so now i can go to any quest diagnostics as soon as i want. i forget why but i have to take it at 8am specifically i think bc thats when testosterone is highest or something. anyway what she recommended covered most of my list and i will be in the lab within the next week or so. i was almost shocked at how helpful she was as well as the fact that she was a woman because she had to give me an exam and it bugs the hell out of me when guys do it. to say the least i was pleased. if anything seems irregular on my tests i will be checking back in with her. i have a neuropysch apptmnt on thursday and may be scheduling with a very good ed doc soon. we will probs go through more doctors we are recommended to before resorting to shippen or jacobs but they are certainly in our options! thanks for asking, any progress with yourself?
Conratulations on finding a decent endo your first shot! There are many other things she could have tested for, but that’s a pretty good start.
Surprised she offered to test DHT, DHEA, and estradiol without you having to put up a fight to get them. Also nice that she is testing free T4 along with TSH rather than TSH alone.
yep
Quest has paperwork that you or your parents can fill out so you can have the bloodwork results mailed directly to your house rather than waiting 3 months or whatever to see the endo again.
Again, hope those visits go well for you.
Just remember that these doctors are actively testing and trying to treat people with our specific set of symptoms.
I don’t really look for progress anymore. I’m going to wait until the root cause or something close to it is figured out before i try any drastic treatments, i’m even afraid to try natural treatments anymore since learning that most of them carry the same risks as prescription drugs.
Remember to be cautious and thoroughly look into any supplement or drug that you are prescribed before taking it, we’ve already learned this the hard way, don’t make the same mistake twice. Also remember that TRT is for life. Your still early into this deep shit and your body might make partial/hopefully full recovery given enough time, even if your testosterone is low at the moment. I’m in no way trying to discourage you from doing anything to make yourself feel better, only saying be careful about it.
If you haven’t read it yet, and you can find the time, read this thread from top to bottom and check out the links.
http://www.propeciahelp.com/forum/viewtopic.php?f=27&t=2216
It gives a brief history of how accutane users came to be accepted on this site and possibly how and why we are suffering the same sides as former finasteride dutasteride and saw palmetto users. The fact that tane can permanently cure acne is enough evidence for me to believe that it actually works by causing epigenetic changes, and that is not taking into account the studies which show that it does. You can make up your own mind as to what you believe caused this shit storm in our bodies, but i thought it might be of benefit to take this into consideration. Don’t get too discouraged by anything you read either, there is a ton of encouraging reading out there to counteract it.
Keep your fighting spirit, it’s better than accepting this as a way of life.
i dont think trt would be my answer for many years honeslty. prohormones are looking like better and better options as time goes on. im gonna see many doctors before anyything but if that doesnt work out im going to try to create a regimen on my own. hopefully ill just be able to go to jacobs or shippen before i get there.
How is everything going? Did you get test results yet? Feeling better? Did the visit to the neuropsychiatrist bring you any insights?
No results yet. Endo is still on honeymoon. Nueropysch diagnosed me with sever depression and recommended an ssri and therapy but when I talked to te doctor I sort of fought it because I didn’t want to take something that has an effect on something that for me is already not working. I’m getting really distraught becAuse I just can’t seem to do anything. All the muscle I’m losing is crippling and when I go the gym I get anxiety when I push myself. I fall asleep in all my classes and sexually I’m a complete mess. I’ve managed to have weak sex but it’s not enough to satisfy me in the slightest or my girlfriend for that matter. Do you think I should go on an ssri? I hate to bitch and I appreciate your concern but I just don’t know what to do anymore. Every second is just a constant reminder when my I see how soft my whole body is and looks. I work out like a bodybuilder and it only seems to hurt te cause. If you Have any advice it’d be appreciated. I’m about to tell my girlfriend to go find someone else.
Okay. Billy, first of all it’s no wonder if you aren’t building muscle anymore and you are losing it. It’s a common side-effect with PFS (don’t know with accutane though! yikes but this is how it is for us) and it won’t propably change too soon. From what i’ve seen, the best you can do is to exercise in mild/moderate amounts than wreck yourself in the gym. Lot of people complain that they just feel hurt/tired after gyms. You don’t need to drop it entirely and i actually recommend that you keep exercising some form of uh exercising. Jogging, taking walks, mild/moderate weightlifting. Just don’t push yourself too much anymore.
Basically, if you aren’t used to have no muscles/look feel soft then yeah it can be a shock but it won’t kill ya! 
Your energy is also low constantly, right? or maybe the evenings are the worst time. Maybe you feel like taking evening naps to stay awake. This is a something that is with finasteride but this is something that improves along with brain fog symptons later on. If they don’t then ofc medication, nutrients and whatever can be considered.
Okay. Billy, uh, the next paragraph is… something to advise you about your life. It’s been terrible to see a young person like you get hit by something like this, especially since you don’t have enough means and experience to cope with things like this but i’ll… well, try my best. Take it as you will. I’m a 21 years old person and i got hit by finasteride. And uh two less severe but none-the-less cripling things before it so i believe i… got some wisdom regarding to this.
–
About your girlfriend:
Wait, tell her to find someone better? I’m pretty sure you were pretty good for her and thinking otherwise is just twisting the memory of you.
…How about instead tell her the truth? Tell her the story about how corporate liars fucked you up with a medicine. Tell her that you really did and do love her but a medicine is permitting you to be your REAL self. This is why you have been distant/different for all this time. It will take TIME to become healthy again. You KNOW that if you were healthy once again you’d be so into her with all your might that she’d never needed to doubt about faithless guy ever again.
Here’s how this will go:
Yeah, she might like that ending the relationship there is a good choice. Fair game.
You might have to end it later on from a consensus/your both decicion if you find that things don’t work out for you both. Somewhere in the unknown future.
Argh, she might end it later on through other mean if she lies and doesn’t like to confront you about it, then again you might end it later on since things don’t work out.
Maybe the relationship can’t work but she’ll become a good if not your strongest support in overcoming or lessening the condition. Really good case.
Maybe she likes you and you stay on a love of some kind. Another good case.
Aaaaand there’s so much more besides this but for now, you see how many factors and possibilities there are in this man? You are really young to know this so:
What the fuck is love anyways? You do know now that a lot of it has to do with body chemicals and hormones but you know, there are women who are happy to be married with a physically severely cripled husband. at least you don’t have BRAIN DAMAGE and haven’t become paralyzed entirely. Women don’t necessarily expect sex from you. There’s several guys here who got into this while on a relationship that managed to hold it together, i can only assume not SOLELY out of sex appeal.
Hell, there is a doctor guy here called JN who suffered insane side-effects from finasteride who got into a relationship 6 years after finishing finasteride (not so in good mental or sexual condition) and 8 years after it was completely healed, earning lots of money, succesful with a good sex life.
MIRACLES CAN HAPPEN DUDE. If you break up then… que sera? That means that you weren’t that strong of a couple after all and i wouldn’t worry so much.
To put it short, what WILL change for now or from now on is that the expectations you or she has for your relationship will change and you can only see how she likes it.This is how it is even without finasteride in relationships. Be yourself and be true to yourself and to your feelings.
This accutane episode or your possible breakup not the end of the world. Your DEATH is the real end. I’m 21 and had plenty of chances with girls, especially while i am suffering this PFS. Before finasteride, I have been so into girls that i felt that i needed to kill myself out of shame for not ever confronting them about it. I have seen women looking like a greek sculptures having an interest in me when i got hit by PFS and praying every fuckin day in that school that i was healthy again and god forbit it fuck the mindfog and constant fatigue sucking my character away. But girls may come and go but you will stay in the end and… the ones who really likes you in the end.
You gotta understand man! You have to accept that you aren’t a fucking superman, nobody is. you are weak bro!! and that’s okay to admit. there is only so much you can do and tolerate right now and you really need all the strenght and support you can get to overcome this ordeal.
You have been cripled by liars. YOU have been wronged here. You HAVE to start working on YOURSELF to make OTHERS eventually happy. That means that you give a big, sonic Fuck You to depression, sadness, misery, selfpity and self-loathing in the long run. Fight those feelings man!! Conserve every bit of your hope and focus on feeling happiness! If you don’t feel anything right now because of crazy hormones then BELIEVE it that it will change. Just keep what i said here with you and recite it, remember it. Never forget what i said here dude!
Billy, it’s really important that you don’t give in to depression, anxiety and suicidal thoughts. Work ACTIVELY to your HOPE! Hell, turn into a believer if it helps you, find the god through this if you can. You got a Worth, you are a WORTHY person to LIVE and no fucking crazy body, medicine or goverment can take away that from you. You aren’t finished yet and there are always options left and you can change and adapt.
There is nothing wrong with being a believer if it makes you a better person or makes you pay more attention to your own spirituality and health. A guy who i respected the most in my life, more than nelson mandela gandhi or any great big figures, died to testicular cancer few years ago. He said a lot about this, how the pain is so terrific that you change from a complete atheist to a complete believer in a matter minutes. He was an atheist but he prayed for god every day when he was hospitalized and he propably secretely hoped that so did we. And we did.
None of this is made up but i don’t like spreading my life story so much but you just keep it real, 'aight man? sorry if my post was pompour or overly long or wordy or anything negative 
i just…wanted to speak out to not to YEAH DROP HER than hopefully put things into better proportions i guess, to not to make you shut in than to keep going strong. isolation is the worst thing you can do to yourself right now but just remember not to beat up on yourself/bear the blame that your body isn’t working like you really are right now in social situations. otherwise you’ll end up in a cycle of shame and no self-worth. do your best in the school, do study possible help or lawsuit stuff but don’t stay on internet for your whole time and remember to take it easy and eg. walk in nature. be yourself. don’t stress yourself.
Sorry to hear you’re in a bad way right now. I can’t believe that neuropsych recommended an SSRI knowing what condition you’re in. He should know there is a high incidence of sexual sides. wtf?. Did he offer you anything else? Any SSRI would be the last antidepressent I would want to take. Keep the girl, let her know a drug fucked you up, give her the option to get out if you feel the need to. If she is still happy with you and your are happy with her, why end it? Don’t ruin a good thing if you don’t have to. You’ll end up alone and miserable instead of just miserable. Use whatever means necessary to get her off. My dick is pretty much broken too but I have still managed to wow a few women. Don’t be afraid of taking an ED drug every so often either. I don’t have any advice for the muscle loss. Hopefully this is just a matter of low T rather than something more cryptic. Won’t know until you get the test results. Just gotta be patient with this shit. Maybe trying for a lawsuit in the mean time would not be such a bad idea.
Please try to keep it together and keep moving forward.
The bad news is that you’re right. We’re seeing this same syndrome pop up with people (both men and woman), which take ANY substances which reduce androgens at the cellular or circulating level. This includes all 5AR inhibitors (finasteride, saw palmetto, isotretinoin, dutasteride) as well as other substances such as GnRH antagonists (Lupron, etc.) and SSRI’s. Yes, SSRI’s also reduce androgens at the cellular level by inducing and enzyme called 3a-HSD, which amongst other things, is responsible for maintaining correct androgen levels inside the cells. I have even come across similar problems with woman using birth control pills or high dosed estrogen therapies.
The good news is that people will eventually start to realize that this problem is not “only” about finasteride and men, but much rather can happen to just about anybody from a huge number of substances. Believe me, if you do enough research on the internet, you will find sufferers just like us coming from various substances, which are all suffering in their own little corner and being told by whoever that the problem is “in their head”. My mission these days is to put an end to this nonsense and get this problem onto the map, where it belongs. Once this happens (and I am hoping on some support), this subject will go balistic and become of huge interest to the scientific community at large. And once that happens, we will get research projects going and there will be a commercial interest to find a cure to this problem (that will be the good news). Until then, you can try some of the good tips from users on this forum and hope that your body will find the way out of this mess on its own (yes, does happen).
Good luck.
Endo is on his honeymoon. How’s that for irony?
I can’t have sex at all since Finasteride. I don’t think I’d ever be comfortable showing a woman what Propecia has done to me. Essentially it has deformed my genitles and made a fat mess out of the rest of me.
Please consider wellbutrin or something other than an SSRI. An SSRI is a whole other set of problems. The depression never really lifts but you are able to cope somewhat better as time goes on.
As others have said, things are finally moving for us in a positive way. Hopefully we will have some answers sooner than later.
the advice from all is much appreciated! thankyou for taking the time to read my story. im glad to have found this board and the much needed support that comes with it. as far as my girlfriend goes you gus ae right, if shes still here i must be doing something right so i guess theres no sense inbreaking it off if i dont have to. i told my doctor that if i was going to go on an antidepressant it wouldbe wellbutrin for sure but im still hesitant. right now im taking vit d creatine a gnc sport multivitamin and protein containing a lot of bcaas and other things and i feel OK. musce loss is still killing me but with regular gym visits and a lot of exercise/good diet im not completely embarrased of the way i look but i keep my shirt on a lot as apposed to being a regular half nude in most nonschool/work situations lol and i cant maintain a solid erection during sex regardless of position. today was the first day in a while i havnt slept through all my classes but i slept 6-6:20 last night so its expected i guess. im waiting for endo to return and asking for advice. also my birthday is this month and i asked my parents for an appmt with a good specialist like jacobs. even a new car wouldnt beat a raging hard on for mybirthday hahaha. and i feel for you boston. its onl been about 5 months now and my little guy about 2 inches shorter than before when hard. when its soft its downright embarrasing. i bumped up against my girl today while kissing her goodbye andi could tell she giggled a lttle when she felt the poor shrunken up little guy. luky shes cute… kind of a bad feeling but i have a good sense of humor. anyway thanks a bunch for the advice from all! awor hopefully we gain some attention soon! no one really knows for the most part until they become on of us. the thought of researchers working toward a fix i a nice thought.
i personally wouldn’t go near any anti depressants… you should read some of the horror stories on them. they have people suffering persistant low libido and sex drive as well.
i know that ssris can have that side effect but i dont know about wellbutrin. why i have time ill do some research before touching anything
hey all. havnt posted in a while. ive been trying to clear my head of all this but recently its all i can think about. i just got some lab results i should have had a while ago in the mail.
vit d 38 30-100 ng/mL
TSH 3rd gen 1.82 .5-4.3 mIU/L
T4 Free 1 .9-1.4 ng/dL
DHT 24 3-33 ng/dL
testosterone total 350 <==1000 ng/dL
estradiol ultrasensitive 10 <=31 pg/mL
IGF I ECL 461 181-620 ng/mL
LH pediatrics 2.07 .29-4.77 mIU/mL
FSH .62 .40-7.40 mIU/mL (seems low)
DHEA sulfate 405 H 38-340 mcg/dL (endo says okay but notably high)
Prolactin 10.1 2.8-11 ng/mL
cortisol AM 24.7 3-25 mcg/dL
IGF binding protein 3 5 3.4=9.5 mg/L
nothing particularly interesting. i just posted what i thought could be revelant. last night i posted everything on the test but for whatever reason i logged on today and it didnt even post. =/ if anyone has any thoughts or inputs whatsoever feel free to leave a post. good luck to all!
Can’t believe your info didn’t post in the hormone and blood tests section. Maybe try again?
I suppose your vit-D is a little on the low side
I think your thyroid hormones are pretty normal.
DHT looks good.
Total T is low. Did your endo have anything to say about this? 350ng/dl would be considered “very” borderline hypogonadal and may explain your muscle loss and fatigue.
Estradiol looks a little low. Quest’s range for Estradiol is 13-54 pg/ml
IGF-1 good.
FSH and LH are very low. If your test wouldn’t have been the pediatric version you would be damn near bottom of range for LH and off-the charts low for FSH.
DHEA is obviously high.
Prolactin looks slightly on the high side.
Cortisol looks slightly on the high side.
If your endo has nothing to say about the low T, fsh, and lh, I would dump her.
Its a shame you don’t have results for SHBG or Free Testosterone levels.
See you around man.
yeah she believed it was all in my head. whatever. my mom will schedule me for jacobs if i throw away all of my supplements and pass a drug test. she seems to think that my problems are because of weed and not all this. i cant convince her otherwise and its not worth trying to convince a parent that weed isnt bad. me and weed are gonna have to take a long break. maybe its better that way. the analysis is very much appreciated dubya. i will hopefully get some more detailed results in the future. my skin has become really oily and my acne came back this week worse than ever before like all over my body. maybe its the changing of the seasons but im hoping its things going back to normal! again thanks for the reply it gave me some insight as to what the numbers could actually mean but wish me luck getting in with jacobs!
Thanks for the info young buck ill ask for those. Is there any way to treat these conditions? If it runs in your family do you think that your problems could be related to something else? Just wondering I don’t know much about the thyroid