Hi
my doctor diagnosed primary adrenal insufficiency. What you think - accutane affect that? I take accutane 3 course 7 years ago, one course - 6 month.

On 3/15/2018 at 9:54 PM, Neezar said:

Hi
my doctor diagnosed primary adrenal insufficiency. What you think - accutane affect that? I take accutane 3 course 7 years ago, one course - 6 month.

Its definitely possible given the number of courses. Many guys complain of these symptoms. However may also just be a coincidence.

On 3/15/2018 at 4:21 AM, Zelos said:

I just found this thread and I'm scared as hell now. I only took Accutane for 4 days at 20mg (so only 80mg in total) and suddenly had an anxiety attack, which I never even knew what it felt like before. I immediately stopped. One day later I couldn't get a hard erection anymore (maybe 50%).

It has been two weeks since then and I STILL can't get an erection. Up until the day I quit I got random ones all day and held them forever, now I don't get any without forcing them. And even then they are very soft. Every time I see something arousing it's like I feel the stimulus going into the penis, but then it just feels weird instead of causing an erection. This can't be from the Accutane, can it? It HAS to be anxiety, right? I mean, I only took the drug for 4 days. And only 20mg/day. What the hell is this? I'm freaking out right now, I can't be impotent because of this crap, can I? Please tell me there's a good chance it'll return to normal, since I barely took anything.

I wouldn't worry too much. You didn't take much at all. Some people take 80mg per day and they stay on it for months. Keep checking and keep us updated. Hopefully it will resolve in a month or two.

On 3/15/2018 at 5:01 AM, guitarman01 said:

Well I tried.

Only to ignorance. Am I in the twilight zone? I just got done posting this to @flynn
I have directly posted this to you multiple times.
If this is your level of memory recallor comprehension you have no business criticizing any of my posts.
We are done.

MRI BRAIN WO CONTRAST - Details

Study Result

Impression

1. No acute intracranial findings noted.
2. Volume loss of brain parenchyma is seen, advanced for patient's
age. No intracranial mass lesion or mass effect or midline shift
noted.

Is this your scan guitarman?

On 3/15/2018 at 3:23 AM, Colinboko said:

I believe so? Im just wondering if its our brain being like hey save me from this chronic inflammation and so DHEA is pumping out like crazy.

Its possible but I don't know if the body uses DHEA primarily to fight inflammation. They are other hormones which are also anti-inflammatory which aren't raised. If people has high levels of cytokines, this would be a strong indication of inflammation.

Again I've explained a possible cause for high DHEA-S on the third post here - [removed]

Essentially, accutane was shown to downregulate gene expression of an enzyme by 6 times. This enzyme converts DHEA-S into androstenedione. Thus if this enzyme has been downregulated around the body. There would need insufficient conversion of DHEA-S, leading to a build up of it.

10 minutes ago, flynn said:

Its definitely possible given the number of courses. Many guys complain of these symptoms. However may also just be a coincidence.
I wouldn't worry too much. You didn't take much at all. Some people take 80mg per day and they stay on it for months. Keep checking and keep us updated. Hopefully it will resolve in a month or two. Is this your scan guitarman?
Its possible but I don't know if the body uses DHEA primarily to fight inflammation. They are other hormones which are also anti-inflammatory which aren't raised. If people has high levels of cytokines, this would be a strong indication of inflammation.

Again I've explained a possible cause for high DHEA-S on the third post here - https://www.pasforum.info/threads/theory-pas-and-pfs-5-alpha-reductase-enzyme-very-plausible-currently-seems-to-be-the-most-likely-cause-of-pas.9/

Essentially, accutane was shown to downregulate gene expression of an enzyme by 6 times. This enzyme converts DHEA-S into androstenedione. Thus if this enzyme has been downregulated around the body. There would need insufficient conversion of DHEA-S, leading to a build up of it.

https://academic.oup.com/ndt/article/15/6/923/1858614

This is literally what Ive been having trouble with. Foamy/bubbly urine etc.

The boys ESR in this journal was sky high. Im going to get this test done before I dump money into a cytokine panel.

On 3/14/2018 at 11:11 AM, mikez said:

I don't have eye floaters, just right side pressure behind the eye. 10 years post tane. Was on 6 months with 4 being at 80mg, and 2 tapering being tapering months. Sorry to hear about your MRI. Was any treatment offered?

Ive seen two neurologists about it myself. No answers. Just more questions.
One asked if I did drugs when I was younger.

So some people have pressure around their eye.
some people have had pressure in their head. or headache
you see studies of reduced cerebral blood flow, so maybe not just a headache.
Also Brain inflammation, lost nerve connections.
So what if some people develop pressure around their heart?

Now you just had someone post low cortisol.
So you have people with low, high, normal. Mine was right in range last time I checked.
Yes hormones are being affected,
But if we continue to focus solely on hormones, that's when this continues to go in circles.

And with the whole inflammation issue, you can get blood tests for this....again they come back all within range.

My guess is its all blood flow related over inflammation....could be wrong though.

If it is blood flow well blood carries oxygen all over the body to all the organs yeah, if theres an issue no wonder we might be feeling it all over the body. Name your region after Accutane- nothing is left untouched.

45 minutes ago, TrueJustice said:

And with the whole inflammation issue, you can get blood tests for this....again they come back all within range.

My guess is its all blood flow related over inflammation....could be wrong though.

If it is blood flow well blood carries oxygen all over the body to all the organs yeah, if theres an issue no wonder we might be feeling it all over the body. Name your region after Accutane- nothing is left untouched.

Have you tested ESR? CRP? Cytokine panel?

Im just hoping some form inflammation shows since I clearly have been having kidney involvement. It will have to pop up somewhere

1 hour ago, guitarman01 said:

Ive seen two neurologists about it myself. No answers. Just more questions.
One asked if I did drugs when I was younger.

So some people have pressure around their eye.
some people have had pressure in their head. or headache
you see studies of reduced cerebral blood flow, so maybe not just a headache.
Also Brain inflammation, lost nerve connections.
So what if some people develop pressure around their heart?

Now you just had someone post low cortisol.
So you have people with low, high, normal. Mine was right in range last time I checked.
Yes hormones are being affected,
But if we continue to focus solely on hormones, that's when this continues to go in circles.

So you never had any blocked sinus'. I woke up this morning with my right nostril being completed blocked, same with my right ear. My eye watering and the pressure there being pretty intense.

Seems like mine is a case of sinusitis.

40 minutes ago, Iamme. said:

So you never had any blocked sinus'. I woke up this morning with my right nostril being completed blocked, same with my right ear. My eye watering and the pressure there being pretty intense.

Seems like mine is a case of sinusitis.

I have fought with this for many many years. Yes my sinuses feel blocked. Yes my ears feel full. I have seen many ents.
I had a sinus ct scan years ago, and they did see some sinus thickening, and I thought finally this is it.
Then I get to see the ent on a follow-up appointment and he tells me its not that bad.
Didnt suggest any major treatment. Throw some antibiotics at it.
Augmentin is normally the first choice. Have you tried this? there wasn't resolution for me. You could really go at it and try for a extended amount of time say 30 days, but I dont know.
I think they also normally say chronic Sinusitis isnt caused by a bacterial infection.

I tell them about my ear fullness andIve taken hearing tests. My hearing is normal. They dont see signs of a infection when looking into my ears. They have scoped my throat as well with a camera.
So the ear thing gets labeled as tinnitus by the ent.
One thing im now remembering is him recommending Ginkgo Biloba. What does it supposedly do? Increase blood flow.

The ear fullness was very gradual for me. It affected my left ear first. then the same started happening with my right ear. sort of similar to the eye pressure.

Youve been around awhile you remember the poster that came on and said he was diagnosed with collapse of the sinus structure? Some sort of Vasculitis as well I believe. His parents were considering taking him to Mayo.

Thats how I picture this problem. muscle and bone weakness in the face that starts to collapse the sinuses.
Then yea, your going to get some fullness and thick mucus that gets trapped, maybe even along with earwax.

Some of the studies though on Accutane have shown numerous changes in bacterial colonies, the sinuses was one of them.

Ive had all the sinus tests done too - all comes back fine.

Again Im going to say blood flow issues, whether its pressure in ear, behind eye, in the nose, in the brain ( me ) its possibly due to blood flow issues.

This all makes me think I should look into heart health, perhaps this is the cause of blood flow issues!!?

5 hours ago, Colinboko said:

Have you tested ESR? CRP? Cytokine panel?

Im just hoping some form inflammation shows since I clearly have been having kidney involvement. It will have to pop up somewhere

Not entirely sure.

I do know I had inflammation testing done just before Xmas when my red blood cell count was off, that was odd as red blood cells were fine on follow up.

The followup inflammation test came back fine too, as to exactly what Dr ordered Im not sure?

I really need to start documenting all my various tests, Im just so jaded Im like another test whatever- what the hell are you going to find, or better yet not going to find....

31 minutes ago, TrueJustice said:

Not entirely sure.

I do know I had inflammation testing done just before Xmas when my red blood cell count was off, that was odd as red blood cells were fine on follow up.

The followup inflammation test came back fine too, as to exactly what Dr ordered Im not sure?

I really need to start documenting all my various tests, Im just so jaded Im like another test whatever- what the hell are you going to find, or better yet not going to find....

The thing with autoimmune/inflammation related issues is that it can take years and years to even come to any sort of conclusion. Im just lucky in the sense that my kidneys are clearly being affected (never thought Id say that in my life? But having a diagnosis is way better than years and years spent trying to figure it out). What Im getting at is that maybe our inflammation isnt so drastic that it picks up on tests, but the more sufferers we have responding to immunosuppressant drugs, I think we would scoot closer to an answer. If my kidneys continue to be affected, then that can lead to crazy serious health problems. (Not that these arent already serious but like Im talking death, and dialysis and all that terrible stuff).

Ive been riding this inflammation boat for a while and I will hold pretty true to it. Autoimmune diseases are sometimes caused by something keying a genetic lock. Maybe weve all had this brewing inside of us and the stress of Accutane unlocked it and now were stuck with it. And the only way out is through treatment that could quite possibly cause remission and were back to living fairly normal lives! We dont know! All I know is that many of the autoimmune diseases triggered by Accutane can be put into remission. My friend took Accutane and developed ulcerative colitis (doesnt believe it was Accutane but I roll my eyes) and has been in complete remission since her prednisone enema (tmi lol sorry). But now that I know my hormone levels are fairly normal, Im moving away from that until proven otherwise.

Sorry to jump around with possible causes but lets say Flynns post onbrain changesis whats at play - quite possible really when you look at it. How many of us have to overthink a sentence before saying something??

I know hes presented a smart protocol with the issues discussed but what about a specialistin brain injury/trauma?I want to know their opinion. Whyshould we be all left out in the cold to self diagnose all the bloody time??
Always arent we having to self diagnose. How bout a specialist stands up with a protocol, wouldnt that be a welcome change!!!

Those issues he discusses imply inflammation, hormone issues etc. prob is Im taking half the stuff he recommends inc Co Q10, fish oil, Ive done Zinc, Ive fucking done it all except for hard stuff like RU-486

Which begs the question, is the difference in the equation just the meditation? Is that all Im missing....

I'm seeing a neuro as well. I couldnt agree more about blood flow issues. The last one wouldnt agree to test blood flow or even pressure (lumbar puncture). I'm getting a second opinion on Monday. Will keep people updated.

True Justice - don't feel that dejected over taking the supps. Even healthy people benefit from taking those, so no doubt youve done yourself good and continue to do so. It just means, they aren't the ones to manage your accutane symptoms. I can gaurantee you haven't tried everything. Perhaps you simply mean tried everything 'that' guy said ?

It can be so mentally draining. Getting a very good GP is the first step, one who is thorough and open minded and will test everything.

One thing is to individualise your treatment and not fixate so much on what someone else takes or someone else's theory.

What we can only really do is try and treat the symptoms we ourselves and/or our own bloodwork with current best evidence approaches. Everything has to individualised.

Also consider Chinese medicine and acupuncture (from someone who trained in China though), in conjunction with traditional approaches.

When I take Diclofenac Retard I feel better. I can think better and have less back pain.I can concentrate better, I'm much less tired and I don't have Brain Fog. I took the retard capsules for the first time yesterday and feel really good. I have taken diclofenac without retard again and again, with these I've felt no effect.

Besides, I've been taking L-Arginine (on/off strategy) for some time now. Initially with strong fluctuations (up's and down's), but L-Arginine has a incredible effect on potency.

14 hours ago, Iamme. said:

So you never had any blocked sinus'. I woke up this morning with my right nostril being completed blocked, same with my right ear. My eye watering and the pressure there being pretty intense.

Seems like mine is a case of sinusitis.

Had same issues. It was swollen lymph nodes due to an immune response caused by food allergies. They can exert pressure on the eye and cause such symptoms. The lymph node near the salivary gland was huge at the time. After eliminating the allergens everything went back to normal. High copper causessusceptibility to food allergies.

On 15.3.2018 at 7:33 PM, flynn said:

I wouldn't worry too much. You didn't take much at all. Some people take 80mg per day and they stay on it for months. Keep checking and keep us updated. Hopefully it will resolve in a month or two.

Thank you. I already have something to report - yesterday I got an erection and it was at least 90% hard again. I think it just didn't work because of my anxiety. I started touching myself, but when I came it took a good second before the ejaculation happened. And then it shot out in one quick burst. It was a really weird feeling.

I've seen reports about this 'delayed ejaculation' on the forum as well - is this something I should be concerned about? I don't know what this is called, since the official term for delayed ejculation means that you're taking forever to orgasm, which is not a problem I had.

On 3/13/2018 at 7:13 PM, Perene said:

LH and FSH. That NCBI article says:

"Primary hypogonadism is associated with low levels of testosterone and high-normal to high levels of LH and FSH. Secondary hypogonadism is associated with low levels of testosterone and normal to low levels of LH and FSH."

"In selected patients, FSH, LH, and prolactin can be measured. If the FSH and LH levels are raised, this suggests a primary testicular cause, and if levels are low or normal, a hypothalamic or pituitary cause should be considered. A raised prolactin level suggests that further investigation of the pituitary gland should be undertaken"

Thanks for your detailed posts. Just thought id pull some possible useful information here to keep in mind.

On 3/13/2018 at 6:47 PM, guitarman01 said:

These findings suggest that ATRA is a novel positive regulator of the 5alpha-reductasethat in combination with the removal of circulating androgen, which normally suppresses 5alpha-reductase levels, feminizes the expression of this enzyme in rat liver

@mariovitali I see why you still have to keep the liver in mind as well.

Hypogonadism in chronic liver disease: impaired release ... - NCBI - NIH

I know I just jumped back to hormones but I thought these thoughts were at least worth mentioning.

16 hours ago, mikez said:

I'm seeing a neuro as well. I couldnt agree more about blood flow issues. The last one wouldnt agree to test blood flow or even pressure (lumbar puncture). I'm getting a second opinion on Monday. Will keep people updated.

What do you hope to test for?
I've had the MRI and the MRA without contrast.
Anything more then that I know is going to take a lot of convincing.
We know someone on here (Jorcruz)had a lumbar puncture that had alot of head pressure and they didnt find anything.

Would you try to push for the autoimmune dysautonomia test?
A lupus anticoagulant panel is something a neurologist would order as well when it comes to looking at blood flow.
I have been positive once and very borderline for this on a few occasions.

More information on this.

I dont have a report or anything to post but consider this:

Accutane can massively impact on collagen production yeah, certainly feels like it, I dont have any left in my face it would appear hence why sweat just pours out of me these days....

critical to vein structure is collagen yeah - that you can look up!!

Basically what Im getting at is all this is surely critical with blood flow around the body is it not?

We feel the lack of collagen on the skin but tane does damage internally as well with drying the fuck out of everything else.

18 hours ago, TrueJustice said:

Basically what Im getting at is all this is surely critical with blood flow around the body is it not?

I can look back on photos and have noticed an unusually pale face post Accutane. Some others have noticed this as well. Along with facial flushing, lightheadedness, that tells me all I need to know about blood flow.
This is where the fatigue might be coming from as well.
It feels like your brain but the source of this problem might not be coming from your brain.

Muscles push blood flow. Starting with your heart.
Then picture a bunch of workers in your blood vessels that continue to push this blood flow and send nutrients.
You start to have problems here you lose oxygen and nutrient supply.
Maybe started with the hair loss. And boy that was a long time ago.
Ive seen other possibilities with this, when various parts of the body become affected.
Its called "Organ Stunning" and this could maybe happen just about anywhere.

Different disease process here but the idea is similar.
When you look at kidney function, some of these processes that start to go wrong might be related as well.
https://www.homedialysis.org/news-and-research/blog/89-hearts-in-the-crossfire-standard-hemodialysis-stuns-organs-but-there-is-hope

Has anyone had a negative outcome from a kidney function test?

Im not sure anyone has, Ive certainly had the foamy dark urine before but other than that nothing sinister going on....

Also, I believe we can say factually from whats been posted that Accutane can absolutely interfere with frontal lobe blood flow in brain, thats not me just making something up, its been proven in tests,If thats the case whos to say blood flow issues arent going on all over the body? Sexual issues, chronic fatigue etc etc - these issues arent always a result of hormone issues - blood flow more often than not could be the bigger issue at play here!!

40 minutes ago, TrueJustice said:

Has anyone had a negative outcome from a kidney function test?

Im not sure anyone has, Ive certainly had the foamy dark urine before but other than that nothing sinister going on....

Ive reported many times that I have proteinuria. Your urine shouldnt be foamy.... or dark....? And if your doctor is disregarding it and saying youll be okay is totally not cool. This is progressive and my proteinuria has only gotten worse. Mine is bubbly foamy almost every time I go. Im leaking protein practically every time. I also dont have to go as often, even after drinking plenty of water. Peeing too often or not often are both signs of the kidneys being affected.

Also had an abnormal protein on my electrophoresis. They dove into this further but only to search for a form of cancer. Didnt find any which was a relief but there are still other causes for abnormal proteins.... and gee I wonder what the biggest culprit is...

hmm INFLAMMATION !

Well, were going to have to do more inflammation and blood flow testing.

I really wanted the vein specialist to offer some insight here but he was clueless, only into stripping veins etc, no knowledge on why I might have weak veins etc.

I know its little help but Im forever reading up on the beneficial powers of Tumeric for all sorts of stuff from healing the liver to helping inflammation. Consider taking it in the meantime....

16 minutes ago, TrueJustice said:

Well, were going to have to do more inflammation and blood flow testing.

I really wanted the vein specialist to offer some insight here but he was clueless, only into stripping veins etc, no knowledge on why I might have weak veins etc.

I know its little help but Im forever reading up on the beneficial powers of Tumeric for all sorts of stuff from healing the liver to helping inflammation. Consider taking it in the meantime....

Im going in for an ESR test this week. Its cheap through walk-in and until I can afford the full cytokine panel, Im just hoping something comes back high. I had a monoclonal protein spike which was indicative of kidney disease. So now to figure out what is affecting them. Theres really only a few options..

and im definitely leaning towards inflammation

I dont mean to make it sound like I have any of this worse than the rest of you. But my health is a serious progressive downhill spiral. I started out not terribly affected and after about a year and half, Im just an absolute cripple. Organs are definitely being affected.

I see a lot of PAS and PFS sufferers kind of even out and just coast at a certain level of degradation. But mine is happening fast, and hasnt evened out. I get worse and worse by the day it seems.

Also have any of you guys realized (before Accutane) that when you would get sick/fluyour acne would noticeably clear up...?

Cause mine did. So it just adds into my theory I guess. No wonder my skin looks amazing, if my damn immune system is in overdrive.