Finasteride/Accutane cause Cholestasis?!

General Discussion
#1

Hi Everyone

Just to refresh your memories. I never took finasteride or accutane but got this horrible syndrome. My symptoms include: complete loss of libido, morning+spontaneous erections gone, penis feels light, and cold.Genitals feel like rubber, dry eyes, horrible body odor, itchy skin, cold hands and feet, low semen volume and force, anorgasmia, and dry penis glans.

After multiple doctors visits and no answers I began to search the web and came across PFS/PAS/PSSD. I posted on a forum elsewhere and got an inbox message by a fellow who also never took the drug, but developed identical symptoms. He had gallstones. We have been 1000 messages in the last 2 years going back and forth about cures/theories etc what happened to us. He always stated he believes it is a Bile issue, or malapsorption of some sort.

Anyways I came across this video:

He states that the issue is due to impaired bile flow/cholestasis. + a vitamin/mineral imbalance. I googled cholestasis and found that the main symptoms is itchiness! and light colored stool! Both of which I have! So I got my ALP (alkaline phospatase) levels checked today and sadly they came back normal 62 (60-142)

I am still waiting for my results for the bile acids test.

My cholesterol is HIGH 7 (0-5.0)
Billirubin was also high, now its normal.

Let me know your guys thoughts? Do you think it could be a gallbladder issue?

#2

I think it is total bullshit.

This forum has gone round and round for years on home brew remedies and “theories”.

First - we need to understand what has happened to us. This is possible through scientific analysis, run by professional researchers.

Then, we can consider whether there’s anything that will treat our situation - or whether we can devise one.

Think about step one first, and turf out anything else.

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#3

science said your medication was safe to take though?
what are they waiting for to fly 100 of us to a lab and figure out what the heck is wrong with us?

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#4

The problem is that there is not “They”. People in this age have this mentality that someone should be taking care of them and therefore must be. People think that just because they are suffering then there must be someone in the way to help. That’s false. There is no “they”. There is no entity in the world obligated to do anything for us at all.

Perhaps the biggest tragedy of PFS/PAS/PSSD is that all the victims just sit and complain thinking that the more they complain, the quicker someone will come to rescue them. They will all die unrescued. Because they sat and cried instead of getting organized and putting together their own rescue effort.

We basically have a bunch of people here googling herbs and spending thousands of dollars on quackery for nothing, whereas.if they had just gotten organized and funded research then they could have gotten cured a decade ago.

There is no “they”. The closest we have to a “they” is Ourselves funding research.

3 Likes
#5

Exactly.

No one is coming to save us.

People seem to think all of this is going to “balance out in the end” or “someone will notice our situation and correct it”.

That is a 10 year old’s view of the world. Reality doesn’t work like that.

If you are hit by a car tomorrow and loose both legs and also an arm - you are going to have to use a wheelchair rest of your life. If you can even do so.

Nothing will balance out about that.

Our situation is the same, only the precise manner of damage is not clear yet.

First step is to find out what even happened to us. Then we can see whether we can actually fix it.

All this is down to us.

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#6

You say “science” like it’s an all-encompassing term with only a select few people responsible for it. The people responsible for the finasteride clinical trials would be completely different to those responsible for our own studies.

#7

i better keep my comments to myself on this…
Finasteride does not turn you into A DAMN ALIEN!!! I never took this garbage! I have same symptoms!!! If we can cross out hormones, what else can we look at???
I had functional medicine doctor send me some information about zinc, and selenium. It states that a zinc deficiency can cause resistance to SEX HORMONES.

#8

exactly! but mate I never took this shit!!! It would make me think that the problem is organic in nature! I went on a high vegan diet before the crash? So maybe copper toxicity? Maybe I lost the weight to fast and this is known to cause issues with the gallbladder/bile…

Anyways I will be taking some time off of this forum. Everytime you try to bring up some kind of “theory” it gets shut down! Hello!!! there are people that are cured, and I 100% believe them. It’s you guys that are waiting for an endless amount of $$$ to be donated only to find nothing…

You put soo much faith into science, and your doctors but they said the drugs you took are safe. They also think what is happening with you is in your head.

I have to be careful and say “I believe” this is what this syndrome is…

  1. Liver/Bile issue
  2. Copper Toxicity
  3. Vitamin/Mineral deficiency/malapsorption
  4. Gut issue causing damage
#9

A young man is going on youtube for the whole world to see. He gives useful information/ and his time to try and help people. He is not selling any product or collecting money. Yet all you could do is call it “bulltshit”. Whenever someone is cured/has a solution its shot down right away like some kind of iraqi terrorist airplane heading towards new york.

“maybe it was just luck”
“maybe we should all donate millons of dollars to people we don’t even know”

I’m all for visiting the doctors/specialists to try and get out of this mess. However there comes a point in time that you have to realize you are at a dead end with them and they are doing you more harm then good.

In the last 3 years I have had the following said to me

Primary Doctor “Free testosterone is useless, it does not need to be checked”

Neurologist “You have spinda bifida (this is the mild one I didnt even know I had lmfao) this is the cause of all your problems. You really still play soccer with spina bifida??! One fall and you could get 10x worse.”

Endocrinologist “DHT is irrelevant”

Primary Doctor “You should see a sex therapist.” Yea that’ll help lmfao!

#10

I have a question for whoever is in charge. How much? How much do we have to collect to research areas that “you” think is the problem?

500,000$ ??? 1 million? 2? 50??

#11

I’ll take that one, I’m not in charge but the people who run this website (the admins and moderators) are not collecting money.

We don’t decide what happens to money donated elsewhere.

I hope that clears that up for you.

1 Like
#12

I took Accutane twice and Propecia once-- both drugs do bad things to the liver.
Whatever affects the liver can affect other organs.
A PubMed search shows some research that links a fatty liver and liver inflammation to these two medications.

My question to you is: what medications or drugs or alcohol have you taken before or during you have your PFS-like symptoms? Lot of substances can affect everything.

#13

Cholestasis? I think unlikely but do not rule out role of liver in PFS.
I find only few symptoms match ours. I could not find our mains ones in Cholestasis like

Insomnia
racing heart
slurred speech
deep depression, Anxiety
Low BP
Low body temperature
cold extremities
appetite loss
muscle loss, weight loss
fatigue
blurred vision
Low testosterone, ED
swollen abdomen