- More Than a Month
Made an appointment to see an endo. Never got my hormones tested/read by someone who actually knows what they’re doing. So it’ll be interesting to see. Idk if my high FSH and LH was just a random one time thing but could be that this chemo drug fried my nuts and left me primary hypo. Who knows at this point. Will keep ya updated. Honestly getting so exhausted fighting this shit.
8 hours ago, Devolution said:
I may as well add my side effect timeline to this form in full, I can't exactly remember what order and if more actually appeared on accutane. I thought a lot of the stuff was normal and gradually crept up on me until I went off the drug and things rapidly went downhill.
-Muscle weakness (went gym couldn't lift 5KG with left arm, thought I was unfit as I'm usually a strong guy)
-Skin not healing (red marks last months and scarring occurred, never scarred previously in my life)
-Blurred vision(One day had to go a few feet from my TV, couldn't see it and also noticed I couldn't recognise peoples faces while outside untill very close and also have night vision issue's)
-Increased Tinitus (had very light ringing previously which I now blame on SSRI use, but it was not noticeable unless i tried to hear it, on accutane it gradually got louder)
-Slight decrease in libido (women just didn't interest me as much, didn't feel the fire in my stomach, the excitement)
-Skin (odd feeling or sensitive to touch on chest, kind of sore)
-hair growth on upper cheek's almost reaching eye
-Flakey scalp, hair not as thick (I had VERY good hair, was the thing I liked about myself)
Mostly all the above apply but are either worse or have adapted into something else.
Hair (Dry, Flakey, shedding, receded slightly, can see through it with light and overall just doesn't look like it was pre tane, scalp also sore, sometimes itchy and has no sign of slowing down)
Genital anesthesia (one day my whole penis decreased in sensitivity, then it came back, then it went again and never came back yet, pressure in anus, testicles reduced sensation even if hit.)
-Libido (none existent, naked women do nothing for me, I feel a distant feeling in my body that I know I used to like it, but I can't access the feeling. If anyone ever saw the movie Get Out, you'll understand)
-Penis ( erections are a struggle to get and are barely rigid if I get one at all, morning erections almost non existent, ejaculation force basically gone, ejaculation pleasure is basically gone with no dopamine rush, reduced semen volume)
-Anhedonia (gaming, music and art the thinks I loved all my life now do nothing for me, no emotional connection, no excitement to play a new game or hear my favourite song. This affects everything I do not just those three)
Skin (red easily, burns if scratched, indents easily, very strechy like elastic and very fragile, can see some veins under it whereI compared pre Accutane and was fine, I also have weird broken down fat under my skin now which is painful)
-Eyes (Visual snow 24/7, blue field entoptic phenomenon, after images, shimmering vision, eyeballs twitch when focusing, eyes seem to not be aligning correctly and sometimes I see my left eyes image slowly merge with the rights, ghosting vision, light sensitivity which makes me stay indoors all day. Eyes adapt to light like a camera and dims everything around me and can flicker between light and darker. Multiple string's and dots that come down over my vision which are floaters. Struggle to see in the dark and I get random flashes of pink light in my peripheral vision, I no longer see details on plants or other things at medium to long distance)
-Hearing (ears ring very high pitched and feel a sense of fullness all the time, I can't ignore it and my hearing feels Weird, some days I find thing's to be louder and sometimes lower, I struggle to hear certain speech in movies now and while in crowded conversations.)
-Numbing/muted body parts (this is the weirdest one I find, certain parts of my body are now muted or feel like when i touch them they aren't mine. My bicep skin, my hands, my chest and my feet feel muted along with my lips which inget no pleasure for if i kiss someone. if I put a piece of ice on my chest it doesn't feel right, like it's not that cold or doesn't give me that "Get it off!" response, other parts are muted to pain, i got cut when i was working and it wasn't sore, i didn't even know i was cut till I looked, also my bladded just became muted recently as i call it, when my bladders full normally I'd of got a slight pain to notify me i need to urinate, now I don't really feel the urge to go but I know I have to if that makes sense?)
-Joint/Bone/tendon pain ( certain joints pop and crack and feel sore, my shoulders hurt if i move them around and crack along with my wrists and fingers, if i lift stuff my tendons hurt in my arms.)
-Fatigue/weakness (some days i feel like acid has been injected into my muscle's, they all burn. I feel weak most of the time and even find raising my arms tiring, my grip strength feels weak along with my other muscle's, sometimes I get an electric shock when i stretch my arms out.)
-Smell/Taste (Food is bland now, i have about 20% smell at best and none at my worst, I don't know what's wrong, i never heard of accutane causing this unless it damaged my nerves, this makes life bland and eating is just something I do to live)
-Twitching (My fingers twitch and i can feel the vibration in my forearm thats causing it, its a really weird feeling)
-Stimulants (Not even sure how this one makes any sense but alcohol doesn't really do anything for me anymore, I used to be a lightweight, took about 3 cans to feel drunk pre Accutane but now I don't feel anything, I gave up drink while on it and to be honest I don't really drink much as it is but recently I drank a fair bit of vodka and all it did was give me a headache, no feeling beyond that i didn't feel drunk or tipsy just felt the same, then the same went for cider a different day and other types of alcohol, it just doesn't do anything as far as i can tell but im not 100% sure on this one as I've only heard this one with antidepressants not accutane)
I don't really think or feel anything, im just in this very moment, i find it hard to recall anything and typing all this stuff is a challenge for me so I apologize if its a bit messy and if i missed stuff, I'll add onto it if i remember anything else, I'm very spaced out and the top of my brain always feels weird, I don't recognize myself in the mirror and my mind is very distant from me along with my body and I have this annoying left ear pressure which pops sometimes, my left side of my head feels pressure sometimes too. To be honest as much as I want to stay positive I'm not really living right now, im only 20 and im house bound due to my eyesight and other issues the past 10 month's, my mind keeps having odd memories of my childhood but the middle of my life is distant, sometimes I think what would i be if I didn't take accutane, I have no joy or interest or motivation with life. I feel that living a life of nothingness is much scarier than death which would spare me this torture. But i feel like I can't even do that because it'd hurt my family so im stuck in limbo, I can't live and I can't die. I found a post on Reddit which basically sums up my mind right now and will paste it in, it's almost me exactly and once again I'm sorry for this being a downer but I'm genuinely frightened even though I cannot feel that emotion, i just know some of this stuff hasn't even been experienced to this extent by people and i feel like im the most unlucky person in the world. If i could get my eyesight, penis and emotions bsck that'd be a life worth living at least. I shall give it time.
¨ I have no desire to go on vacation, and if I do, I can’t enjoy it.
¨ I don’t care what I eat.
¨ I get no enjoyment from flowers, art, sunsets, or other things of beauty.
¨ I feel completely flat during special occasions or touching moments such as weddings, the birth of a child, birthdays and other celebrations.
¨ I still have negative feelings such as anger, sadness and frustration, but sometimes they seem less intense than before.
¨ I have no desire for, and get no pleasure from sexual activities.
¨ I feel utter despair at times in having to live in this awful state, and yet I also don’t care at the same time. ¨ I try to explain what is happening but people don’t understand.
¨ I “fake” feeling positive emotions around others. I pretend to care when I don’t and smile when I feel totally flat.
¨ I “think” my way through relationships, doing what I know I should be doing, like hugging and kissing people at the right times.
¨ [Only for those who have lost someone close] I cannot grieve the loss of someone I cared about who died.
¨ My life doesn’t make sense anymore because there is nothing I can enjoy. It all feels pointless.
• Difficulty remembering things, learning, concentrating, or focusing.
• Finding things funny, but not like before. It’s a different sense of humor, and doesn’t feel as good.
• It was a sudden change when it happened. One day there was feeling and then it was gone.
• Difficulty remembering dreams, or not dreaming vividly anymore.
• Having a “blank” mind a lot. Not thinking about much or staring off.
• Headaches when it first came on. Possibly due to sudden drop in dopamine.
On 6/15/2018 at 10:11 AM, Jason3 said:
No, I am primary. Clomid is typically tried when a patient has secondary hypogonadism. What happens is that there is a problem with your pituitary or thyroid and the "signals" (primarily Lutenizing Hormone) are not being sent to the testicles telling the Leydig cells to produce testosterone. You would know if you are secondary if your LH and FSH are low.
Primary hypogonadism is simply "testicular failure" - usually injury, infection, TBI, opiate use, SSRIs, or unknown. The signals are being sent but the Leydig cells don't respond or never receive the signals. LH and FSH will be normal or high because your body is trying to overcompensate by sending a stronger signal to the testicles to try to force them into working.
Short-term Clomid can sometimes "reboot" that process for secondary patients but in truth it doesn't work a lot of the time. Part of the problem is that doctors overdose it. And patients generally don't feel that great on it. It also can more than double your estrogens making you really moody, emotional, and bloated.
5 hours ago, TrueJustice said:
Not to mention, I’d only be interested in taking testosterone not just for sebum production but for energy, ceasing brain fog, losing depression and on & on & on......
I think some of us have tested and it’s on the low side but not enough to warrant being put on it, to my knowledge anyway!?
11 minutes ago, TrueJustice said:
You seemed pretty excited about it a week or so ago....did you get a negative response and stopped it??
I don’t mind self diagnosing with supplements etc but personally wouldn’t take something like that - each to their own I guess. I totally get why some people are going to experiment with prescription drugs though, you get that fucked off with this situation that you just latch on to anything....
Don’t see you trying anything or getting tests done?
1 hour ago, TrueJustice said:
Colinboko- I take it the other stuff you were just taking yielded nothing!?
In a nutshell I’d say you’ll have to seek out a Dr who practices alternative medicine, can’t think anyone can do anything going down the more common path i.e seeing your GP even though I still respect mine, it’s just that she’s very mainstream in what she does - that’s fine.
The other thing is, if you have a great theory than we’d love to hear about it and maybe others can reach out to alternative doctors where they reside...
2 hours ago, flynn said:
Yes I was planning on doing this at some point and putting some money into search engine optimisation etc. for the website. But I have no experience doing these things and not much free time at the moment. I also don't work and don't intend to monetise the website. My main focus has been adding content and compiling info. I have also shared links to it on a few of the facebook accutane forums. My hope would be building a fairly large user base. Upon which we could gather extensive case histories and potentially be mobilised to fund raise to some sort of research/treatment.
If you could provide any advice it would be hugely appreciated.
If you have the time. I would also highly value your feedback on the info I put together on the 5 alpha reductase theory of PAS. As it was after reading one of your posts, that really got me interested in researching it more thoroughly. Obviously criticism is more than welcome - https://pasforum.info/threads/theory-pas-and-pfs-5-alpha-reductase-enzyme-very-plausible-currently-seems-to-be-the-most-likely-cause-of-pas.9/
I've also posted about a potential method of treating PAS and PFS, provided they are indeed caused by changes in 5AR expression, that you might be interested in - https://www.pasforum.info/threads/plausible-cure-crispr-cas9-gene-editing.21/
wasn’t the 5AR theory proven false...?
I slightly remember a study (Baylor maybe?) putting it to rest.
Isn’t 5AR also the enzyme responsible for allopregnenolone conversion? I can still get drunk... I know a lot of PFS victims say they can’t but I still have the ability to.. isn’t allopregnenolone responsible for that?
first day almost done
so far have 16mg of prednisone floating around in my system and don’t feel anything too drastic yet. Two more pills before bed. Definitely less achey and weirdly more clear. Nothing to write home about.. gonna try and finish this out though even if nothing happens.
1 minute ago, TrueJustice said:
How are you responding thus far?
hopefully you get a good result from this
Wanting to make sure there is nothing happening (went out the other night drinking and got pretty drunk) that could possibly skew my results. Want to be back at home in case things go south or something.
8 hours ago, flynn said:
If anyone has blood results for follicle stimulating hormone (FSH), Luteinising hormone (LH) and/or DHEA. Could you please post them in a reply to me or even better post them here - https://www.pasforum.info/forums/blood-tests-results.8/
Something caught my interest earlier. I have seen numerous PAS people report high DHEA levels. I was looking at the neurosteroid study of PFS patients. Interestingly, DHEA was one of the hormones which was found to be high in PFS people along with testosterone, 5-alpha-androstane-3alpha and 17-beta-diol in the CSF.
It could be a coincidence but its possible there is a connection. It would be very informative to have a study of PAS patients which looked at the levels of neurosteroids as in the PFS study. This would provide us with strong evidence as to whether PAS is or isn't related to PFS and 5 alpha reductase activity. I wonder how much it would cost to have a person like professor Melcangi conduct the same kind of study on PAS patients. - https://www.sciencedirect.com/science/article/pii/S0960076017301024
If such a study was every completed and the results provided strong evidence to suggest PAS is indeed linked to PFS and 5 alpha reductase, it would provide a great motivation for PAS and PFS communities to combine resources/donations to find a treatment or pressure for more research to be conducted to provide greater evidence for these conditions and wider acceptance in the medical community. It is only after PAS has been acknowledged as a syndrome/condition that research into treatments/cures can be justified.
85-690 and mine is 757
my FSH was also high
1.6-8.0 and mine was 9.5