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elkhoundgold

Acne Was Cured. No Accutane!

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So I found out after all these YEARS what has cause my acne and it was something called adrenal hyperplasia. It may not be the case for everyone but get checked for it! I'm on meds and they cured the issue it's called glucocorticoids ( like cortef, which is like cortisol ) and it lowers my androgens cuz I can't make cortisol properly I'm so happy! If you can't make cortisol correctly then you dump out the hormones before they fully convert to cortisol ( the male androgens ) and it can cause acne.

It often causes resistant acne so maybe some of us should be checked for it...like those resistant to Accutane. I'm glad I was diagnosed as I was about to go on that more dangerous drug. Glucocorticoids are relatively low key and just what would be made in your adrenal gland. As a bonus my headaches are gone and I seem to have more energy.

Ask me questions while you can because I'm going to close my account relatively soon and I want to be rid of this place, with no offense. :)

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I'm glad you found something that's working for you! Did you have high DHEA-S? I have that, high testosterone, and slightly elevated prolactin levels. I've never had my adrenal glands checked though.

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It just goes to show that we need to find the cause, not ignorantly resort to the most extreme solutions

So I found out after all these YEARS what has cause my acne and it was something called adrenal hyperplasia. It may not be the case for everyone but get checked for it! I'm on meds and they cured the issue it's called glucocorticoids ( like cortef, which is like cortisol ) and it lowers my androgens cuz I can't make cortisol properly I'm so happy! If you can't make cortisol correctly then you dump out the hormones before they fully convert to cortisol ( the male androgens ) and it can cause acne.

It often causes resistant acne so maybe some of us should be checked for it...like those resistant to Accutane. I'm glad I was diagnosed as I was about to go on that more dangerous drug. Glucocorticoids are relatively low key and just what would be made in your adrenal gland. As a bonus my headaches are gone and I seem to have more energy.

Ask me questions while you can because I'm going to close my account relatively soon and I want to be rid of this place, with no offense.

Edited by WishClean
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1-what r med ur on nd what they consist of?
2-what r those meds sideffects? can u get fat from them?
3-after u been on those meds did u see any change in your mood or even character? does it do anything to ur personality?
4-to what kind of doctor u go to get those checked?
5-how much costed?
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How did you find out you had this?

Something called an ACTH stimulation test showed I am dumping out excess OH-17-pregenenolone. See here. Lemme know if you need research or whatever or you can just google it. It's the gold standard for diagnosis. I had acne years before I had any symptoms of fatigue and shyt.

I'm glad you found something that's working for you! Did you have high DHEA-S? I have that, high testosterone, and slightly elevated prolactin levels. I've never had my adrenal glands checked though.

No. If your prolactin is abnormal, you need to check yourself for a pituitary problem especially a pituitary tumor. I would highly recommend this if you can find the right doctor ( admittedly, most doctors are idiots!) But your untreated prolactin is concerning and usually indicates this. Please get this checked, and google elevated prolactin levels. Of course there are other reasons, but my endo said the first you'd go to if you had high prolactin ( i didn't, I have something different ) is pituitary tumors: http://www.uptodate.com/contents/high-prolactin-levels-and-prolactinomas-beyond-the-basics

It just goes to show that we need to find the cause, not ignorantly resort to the most extreme solutions

So I found out after all these YEARS what has cause my acne and it was something called adrenal hyperplasia. It may not be the case for everyone but get checked for it! I'm on meds and they cured the issue it's called glucocorticoids ( like cortef, which is like cortisol ) and it lowers my androgens cuz I can't make cortisol properly I'm so happy! If you can't make cortisol correctly then you dump out the hormones before they fully convert to cortisol ( the male androgens ) and it can cause acne.

It often causes resistant acne so maybe some of us should be checked for it...like those resistant to Accutane. I'm glad I was diagnosed as I was about to go on that more dangerous drug. Glucocorticoids are relatively low key and just what would be made in your adrenal gland. As a bonus my headaches are gone and I seem to have more energy.

Ask me questions while you can because I'm going to close my account relatively soon and I want to be rid of this place, with no offense.

Can I ask what kind of hyperplasia you had?? Was it the adrenal kind, and/or related to PCOS? I did some research on it, and it sounds like unopposed estrogen is part of the problem.

I have 3 BETA CAH, late onset. Just google it or if you have more questions ask. It is not related to "unopposed estrogen." It works like this. We convert our food ( aka, cholesterol ) to cortisol through a complicated process using enzymes in the body. It is an enzyme deficiency ( genetic ) and when we don't reach cortisol due to the deficiency, it dumps out as OH-17-pregenenolone in the body. Mine was so high during the ACTH stimulation test. This is what causes resistant acne. The cortisol is able to lower the androgens in my body because it's providing what I can't really fully make. So when I take the Cortef or whatever, it fixes that conversion issue. Also, some of my stray body hairs have floated off, another welcome effect, but mostly my acne was distressing for me.

Edit stuff: This is often mistaken for PCOS but it is not. Infact, doctors should check more for it, because sometimes it's so insidious and hidden that all it causes is acne but doesn't cause "salt wasting" or issues with quality of life. Just acne and stupid androgen issues. Some women who cannot get pregnant have this and have to take small "pulses" of glucocortioids to get preggers again and control some androgen symptoms.

http://www.caresfoundation.org/productcart/pc/ncah_late_onset_cah.html <---that shit talks about it, although it seems their link is odd.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2532908/ <--Here ya go. This is why 10 year olds are getting fking stupid acne sometimes. Edit: For the record I had normal puberty and had first mentrual at age 13. So not everyone is going to suffer an early puberty if they get the acne from it...that's why this is so difficult to discern from other things. And doctors never seem too interested in finding out, either.

Keep in mind this may not be everyone here's answer. But the test that finds it the most is the ACTH stimulation test, that is the gold standard. It's just a blood test stimulation you do outpatient at the hospital if your doc orders it. Mom's getting it too. She has acne in her 60's! She carries the gene for it which causes our acne. So, I will be happy to help you guys as much as possible to give me. I know the hell this can cause and it's like a freakin' revelation to me lol

Edit: Something to please note. The presentation of the various forms of this can sometimes just cause one or two symptoms, like resistant acne or some hair shedding. Sometimes some other shit, but acne is a biggie. It can also lead to an increase in infertility due to how it's affecting your body. If you have any specific questions I can also answer as I've researched this fully and I also have a knowledgeable doctor taking care of me now ( thank God -_-)

1-what r med ur on nd what they consist of?
2-what r those meds sideffects? can u get fat from them?
3-after u been on those meds did u see any change in your mood or even character? does it do anything to ur personality?
4-to what kind of doctor u go to get those checked?
5-how much costed?

1-I'm on hydrocortisone that's an oral pill, although there are several strengths and types. These are known as glucocorticoids.

2- Not really. It might increase your hunger some. Most people to control the late onset version of this disease would take small doses. Even there, shit is so mild compared to a drug like say, Accutane. This just gives ya the cortisol your adrenal gland couldn't quite make.

3-I'm not depressed anymore. I don't care about the past. I don't care about shit, and my acne has cleared up mostly. No personality changes other than I feel better. I'm on a higher dose but most people with just the symptom of acne can stay on small "pulse doses" but I asked the pharmacy and doc about side effects, and it's really about as standard as any other drug or less, I would think.

4-An expert endocrinologist found it. But...these are hard to find. Most endos, in my experience, are bad. If you do find one, look for one a patient has recommended, or tell me your area where ya are and I can give ya a recommended list from some peeps on Facebook. I got mine as a personal recommendation.

5-$5 with my insurance? I compound mine to keep lactose out, but that's because of my milk fear. But I took before with it and it seemed no issues so far and keeps the acne away. It only took long enough because acne took too many years from me.

I hope this is helping guys!

Edited by elkhoundgold
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thanks for the detailed response...

Sometimes cortisone-related drugs can cause bloating and weight gain in the long run....but you don't think that's an issue?

How long do you have to be on this treatment? I'm glad it's working for you, and it really does show that everyone needs to find qualified experts to help them find the causes for their acne, otherwise it can escalate into larger health issues.

PS. I'm gonna add a link to this thread to the Hormonal forum, this might help some people, male and female.

Edited by WishClean
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Yes, thank you for your response! My prolactin is barely outside of the normal range and I've had an MRI before which didn't show any sign of a prolactinoma so I guess maybe that's not a big deal. I do have nipple discharge though...

Did you have a blood test before the ACTH test and then have the ACTH test as a confirmation? I'm interested in being tested for this since I have high testosterone and DHEA-S but no ovarian cysts. The ACTH test sounds expensive, though, and my insurance is really bad about covering expensive tests :(

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thanks for the detailed response...

Sometimes cortisone-related drugs can cause bloating and weight gain in the long run....but you don't think that's an issue?

How long do you have to be on this treatment? I'm glad it's working for you, and it really does show that everyone needs to find qualified experts to help them find the causes for their acne, otherwise it can escalate into larger health issues.

PS. I'm gonna add a link to this thread to the Hormonal forum, this might help some people, male and female.

Link all you want, sure but I'll mention one thing. The weight gain thing is pretty much over exaggerating just a bit. That's only if you were on a super high dose, and for many, many years. The pharmacist and doctor explained this. I'm talking so high and if you DIDN'T need it, then you'd gain weight. You won't if you need the drug, but we do! I'm 95 lbs. I notice a lot of acne folks are thin ( maybe not all). It merely makes you more hungry, but I have talked to people of all ages using it ( 22 and such ) and no issues thus far. I'm 95 lbs myself and have been using it since a little after my last post. Maybe not long enough in your eyes, but I am only on small pulses of 2.5 mg now. I only took full dose for a little while, because then you can taper down to meet your needs. It's all I need for control at this time and if I have to take that forever sure. The learn to manage what you need, but even on 20mg and 10mg this is normal for people.

Yes people need qualified experts, of which most doctors are not for actually diagnosing stuff. My road wasn't easy, but maybe it will ease the burden for some of you if you have this. Who knows if you do. It's not the rarest of the rarest thing in the universe, but I'm sure it's not the most common thing in the world either. Maybe for acne folks there's a gene that affects the adrenals. I mean it's weird how it happens when people eat, and this is a cholesterol conversion issue ( or steroidigenesis) and for some people no matter what they eat acne stays bad.

http://en.wikipedia.org/wiki/Inborn_errors_of_steroid_metabolism <--Here it talks about steroid metabolism, and "errors" in genetics for some of us with these steroid metabolism disorders. It talks about it here. This falls under an error in steroid metabolism.

paigems,

Your nipple discharge is concerning. Did you have a tesla 3 strength magnet MRI by chance? It has higher sensitivity. Some smaller ones simply cannot be seen. I would suggest a series of pituitary blood tests instead. Imaging is kinda useless in my experience and just not sensitive enough to catch small adenomas.

Yes before ACTH blood test, you would want to check morning cortisol at 8:00 a.m. and acth, but none of these will show anything as ACTH will show what is happening as a sort of "live action." What happens is it's a blood test where they inject you with ACTH, "stimulating" your adrenals to see how they respond, and if they are dumping out pregnenolone in HUGE amounts then they could confirm the diagnosis. It may be covered as it's a blood test, but it is done outpatient in a hospital usually. They then measure your hormones a few times over 30 minutes or so. Sorry It's been a while since I had my last. The docs finally figured that out, so.

Sorry acne.org screws up replies a lot.

Edit:

^Wikipedia kinda talks about Steroidogenesis if you search for it in the wikipedia search bar. It's interesting to read about.

Check it out if you have time. I will respond when I can, but I have to be on my phone soon as I have to go somewhere. I can only seem to log in on computers as acne.org just doesn't seem to have the pw database for use on phones. :\

Also wanted to mention those who kinda talked to me..I had wanted Accutane a lot, but I held off on it because It really does seem like a last resort, and often acne that isn't cured by Accutane is attributed to disorders of steroid metabolism. I'm not against Accutane or anything..I was this <--> close to going on that stuff. But it's kinda scary when this many people have issues with it. I was going to do a low dose.

Edited by elkhoundgold
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Thanks again for the reply :)

I honestly can't remember the type of MRI I had. I've actually never been to an endocrinologist either. Hearing all this makes me think I need to find one and make an appointment! Especially since my other doctors have been unsure about why my hormones were off and I don't have any ovarian cysts.

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Thanks again for the reply

I honestly can't remember the type of MRI I had. I've actually never been to an endocrinologist either. Hearing all this makes me think I need to find one and make an appointment! Especially since my other doctors have been unsure about why my hormones were off and I don't have any ovarian cysts.

Prolactin is not typically high, hun. Mine was normal because I have a normal pituitary. But they check it first thing for pituitary adenomas, says my endo. I think PCOS might be the diagnosis for SOME people but for some of us it's probably something different.

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Sorry, I messed up the replies [email protected], are the enzymes pancreatic ones or copper enzymes, or something else? Do you think that taking enzyme supplements might work as well as supplementing with cortisol? I'm interested in the cause of your condition, and how enzymes affect your endocrine system.

Also, I didn't know that cortisol can actually lower androgens...I was under the impression that high cortisol (e.g. due to stress) can actually increase acne... what do you think?

Thanks again for the reply

I honestly can't remember the type of MRI I had. I've actually never been to an endocrinologist either. Hearing all this makes me think I need to find one and make an appointment! Especially since my other doctors have been unsure about why my hormones were off and I don't have any ovarian cysts.

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I remember reading about a topic similar to this not too long ago but I just thought I put in my two cents in.

From what I know, corticosteroids (It sounds like you are taking something similar to this drug) were once thought as a miracle drug for osteoporosis (please correct me if im wrong). However, it only fixed the pain by supressing the immune system. By supressing the immune system you are putting yourself in grave danger. I recommend not using that drug of yours for too long.

Edited by adrianfe12
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So the cortisteroids are the only acne medication you use now? What exactly is the medicine called, because there are millions of strains of cortisone drugs out there?

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I remember reading about a topic similar to this not too long ago but I just thought I put in my two cents in.

From what I know, corticosteroids (It sounds like you are taking something similar to this drug) were once thought as a miracle drug for osteoporosis (please correct me if im wrong). However, it only fixed the pain by supressing the immune system. By supressing the immune system you are putting yourself in grave danger. I recommend not using that drug of yours for too long.

You are wrong, so yeah apologies. I'm not sure how it's a miracle for osteoporosis, then you go on to say it fixes pain, so sorry if I'm a bit confused. You aren't putting anything in grave danger, and I'm not really sure what you're talking about. I'm SUPPOSED to take this because I don't make enough of the cortisol and I don't make it to cortisol--it dumps at pregnenolone, a harmful androgen. It's bioidentical cortisol, basically. Cortisol helps surpress inflammation in the immune system. If you don't make enough, you can feel tired, dump out as mid androgen hormones, and feel bad. I've never seen a topic like this either??

I apologize, but it couldn't be farther from the truth. I'm on it for life and in small doses or whatever works for me at the time. I think you are hugely misinformed, with all due respect.

Here's a great article on this: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3329455/ Sorry if I sound rude, or anything.

NCAH may be associated with a variety of hyperandrogenic symptoms presenting either in childhood (precocious puberty), or sometimes later in adulthood (acne, infertility).20,22

I only made this topic with the assumption there's some people out there who don't know why they still have acne that's resistant to Accutane, which mine would have probably been. But these are glucocorticoids.

Sorry, I messed up the replies [email protected], are the enzymes pancreatic ones or copper enzymes, or something else? Do you think that taking enzyme supplements might work as well as supplementing with cortisol? I'm interested in the cause of your condition, and how enzymes affect your endocrine system.

Also, I didn't know that cortisol can actually lower androgens...I was under the impression that high cortisol (e.g. due to stress) can actually increase acne... what do you think?

Thanks again for the reply

I honestly can't remember the type of MRI I had. I've actually never been to an endocrinologist either. Hearing all this makes me think I need to find one and make an appointment! Especially since my other doctors have been unsure about why my hormones were off and I don't have any ovarian cysts.

paigems, I'm still puzzled by your case. At least in my case I have ovarian cysts so doctors find it easy to blame everything on that. But maybe this might be something that applies to you...? I mean, this seems like something only a qualified endocrinologist would catch, and we all know how rare those are.

If you have this condition then yes it would get rid of your acne, excess hair, in theory. For me, and well, others I have connected to in support groups, this has been the case so far. It corrects this because it gives you what you cannot seem to reach to: cortisol through a complex conversion process of cholesterol>>pregnenolone>>complicated conversion>>and finally to the end result we want, cortisol. But what happens is we are not reaching cortisol. We are dumping out half way there. When given the proper amount we aren't getting to, we lower the androgens.

It is not pancreatic enzymes. It is an enzyme you would lack, due to genetics that cannot be obtained by any food. It is within our genes. I hope that kinda explains a brief thing. It is very complicated. It has to due with the adrenal steroid conversion process.

http://en.wikipedia.org/wiki/File:Steroidogenesis.svg <--a chart of the conversion process of cholesterol in food through the steroid system.

It is complicated; I will not lie. I'm trying to explain it the best I know how and the best my doctor knew how to explain it to me as well. I have a pretty good understanding of it already. You can never eat food to get this. It is a genetic disease lacking an enzyme USED to convert cholesterol, that a normal person ( with probably clear skin ) takes for granted.

For example I'm eating chocolate and shit or whatever I want. I'm not breaking out. Edit: I got what I wasn't making before, so food had nothing to do with my acne in other words. I apologize if this topic is complicated, and I swear I'm trying to help out. I would say google and research 'steroid metabolism disorders.'

So the cortisteroids are the only acne medication you use now? What exactly is the medicine called, because there are millions of strains of cortisone drugs out there?

Millions? I have only heard of Cortef, Prednisone, and Dexamethasone. I only take hydrocortisone orally (Cortef), which is the most bioidentical to cortisol. I'm on my 2.5 mg pulses and it controls everything and my mood is also elevated. I hope this topic isn't too out of line or confusing for people here. But..well..it really was great news for me.

Edit: Here's some more research on some stuff: http://www.gfmer.ch/Books/Reproductive_health/Steroid_hormone_metabolism.html

These are the enzymes involved. So you could see how missing one would cause a problem with conversion of cholesterol and androgens. Edit: The best way to sum this up better...these are not obtainable by food. These enzymes are part of most of us. If we have a deficiency in any, our steroid path becomes impaired--and we do not fully convert our androgen hormones properly.

The reactions shown in Fig. 2 are catalysed by a limited number of enzymes (listed on the left-hand side of the figure), which belong to four main classes:

  1. Desmolases (or lyases): these enzymes catalyse reactions which result in the removal of parts of the original cholesterol side-chain. This involves sequential hydroxylation of adjacent C (e.g., of C-20 and C-22 for P-450scc) and requires a cytochrome P-450, molecular oxygen (O2) and nicotinamide dinucleotide phosphate, reduced form (NADPH) as a cofactor. These enzymes are located in the mitochondria and are linked to an electron transport system (9).
  2. Hydroxylases: these enzymes are membrane-bound and are present either in the mitochondrial or in the microsomal fraction of the cell. They also require a cytochrome P-450, molecular oxygen and NADPH, as for lyases.
  3. Hydroxysteroid dehydrogenases (oxido-reductases): these enzymes catalyse reversible reactions and depend either on NADP(H) or NAD(H). They are found both in the cell cytosol and in the microsomal fraction.
  4. Aromatase: conversion of the A-ring to a phenolic structure (i.e. with a phenolic HO-group at C-3), a process known as " aromatization ", involves a complex sequence of hydroxylation reactions and loss of the angular C-19 methyl group (10). Aromatase activity is mainly found in the ovary, the placenta and the brain, and is also membrane-bound. Its substrate is either 4-androstenedione or testosterone.

Sorry, I messed up the replies [email protected], are the enzymes pancreatic ones or copper enzymes, or something else? Do you think that taking enzyme supplements might work as well as supplementing with cortisol? I'm interested in the cause of your condition, and how enzymes affect your endocrine system.

Also, I didn't know that cortisol can actually lower androgens...I was under the impression that high cortisol (e.g. due to stress) can actually increase acne... what do you think?

honestly can't remember the type of MRI I had. I've actually never been to an endocrinologist either. Hearing all this makes me think I need to find one and make an appointment! Especially since my other doctors have been unsure about why my hormones were off and I don't have any ovarian cysts.

paigems, I'm still puzzled by your case. At least in my case I have ovarian cysts so doctors find it easy to blame everything on that. But maybe this might be something that applies to you...? I mean, this seems like something only a qualified endocrinologist would catch, and we all know how rare those are.

Hey WishClean. I know it is hard to find a doc. Therein lies the problem. I spent years at this, hoping that i could save some people some time. I have been through a lot of hardship, and hell to discover this. That's the thing...if you wanna find out what's wrong with you, you need time, probably good insurance, and other things, things not everyone has. That, or I can recommend a specialist based on a list from my support group, but I don't know if people really want that. But I really want everyone to know. Because the medical industry, doctors, and all this "treat the symptoms, not the disease" shit are the reason that nobody gets diagnosed and treated properly for their suffering.

Edited by elkhoundgold
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I was tested for this (via a ACTH stimulation test) because I had high 17-OHP on a routine hormonal blood panel. My ACTH came back normal, so I didn't have it. But it did open my eyes to the possibility that this might be a common reason some people have persistent adult acne (and why it runs in families).

Wishclean, if you are interested, I found the diagrams at this link to be helpful to understand how low cortisol as a result of CAH leads to increased androgens. http://blog.lib.umn.edu/clar0841/psychblog/2011/11/how-much-do-you-know-about-cah.html Basically, you don't have one of the building blocks (the enyzme) to make cortisol so the building blocks you do have convert to androgens, which led to acne.

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Sorry, not millions, that was a hyperbole. I just meant there are many forms or cortisone: topical, oral, injectable. I was trying to get the specifics because this sounds really promising. I’m so happy for you that you found the right course of action to heal your acne! surprised.gif Does this medication restore all of these enzymes? Is there any way to obtain these enzymes through non-prescription supplements?

Have you ever tried spiro, someone on this forum mentioned that spiro is also used to treat acne for people with CAH? Could you explain what your dose of pulses means, I’ve never heard of that? Did you have nodular or cystic acne? How long until your acne cleared up?

Edited by brenmc
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I was tested for this (via a ACTH stimulation test) because I had high 17-OHP on a routine hormonal blood panel. My ACTH came back normal, so I didn't have it. But it did open my eyes to the possibility that this might be a common reason some people have persistent adult acne (and why it runs in families).

Wishclean, if you are interested, I found the diagrams at this link to be helpful to understand how low cortisol as a result of CAH leads to increased androgens. http://blog.lib.umn.edu/clar0841/psychblog/2011/11/how-much-do-you-know-about-cah.html Basically, you don't have one of the building blocks (the enyzme) to make cortisol so the building blocks you do have convert to androgens, which led to acne.

Hey Emily thanks for this. My diagnosis was made based on the elevated OH-17-Pregnenolone, not the ACTH. ACTH was used as the stimulation hormone, or the cosyntropin. That is what makes it, according to my doc. Some stimulate cortisol better than others, but you're still dumping the androgen. ACTH was normal but he looked at what I call the "half way" point or pregnenolone. This is a great explanation you have shown though when I say "enzyme." It is difficult for me to try and explain things, even when I know how it works, so your explanation is simple and eloquent.

By the way, don't rule yourself out based on ACTH alone. If your serum was high, your stimulated preg might have come out high too, unless it didn't, but I don't know your labs. Finding a doc for for stuff like this is a heck of a thing. But if your serum was high it's really likely. People with the standard hormone panel bloodtest usually test high for the OH-17-pregnenolone in both, so I'm surprised you don't have it?

What Tests Are Used to Diagnose NCAH?

A single blood test, drawn in the morning and looking at adrenal steroid levels (17-hydroxyprogesterone, androstenedione and testosterone), may be sufficient to make the diagnosis of CAH. An ACTH stimulation test is done to confirm the diagnosis. A dose of ACTH, or adrenocorticotropic hormone, is given intravenously. Blood samples are taken before the medication is given and again an hour later.

People without CAH respond to ACTH stimulation by releasing cortisol into the bloodstream. In NCAH blood samples taken after the dose of ACTH show large amounts of 17-OHP, the “raw material” from which cortisol is normally made. The results of the ACTH stimulating test are plotted on a “Nomogram”, see Figure 2 below, to determine whether the values indicate a diagnosis of CAH.

Here's some more info on the "non classic" version, typical of those with the persistent acne.

http://www.caresfoundation.org/productcart/pc/ncah_late_onset_cah.html <--There's the pregnenolone chart

Sorry, not millions, that was a hyperbole. I just meant there are many forms or cortisone: topical, oral, injectable. I was trying to get the specifics because this sounds really promising. I’m so happy for you that you found the right course of action to heal your acne! surprised.gif Does this medication restore all of these enzymes? Is there any way to obtain these enzymes through non-prescription supplements?

Hey thanks n no problem. The medication cannot restore the enzymes themselves; you'll always lack them by genetic glitch. But they restore the cortisol you couldn't quite get to. These enzymes are always present in birth, but are "lacking" in a weird person with this issue. I hope this kinda makes sense. You just take a small white oral pill.

Edit: Emily54 is much better at explaining it, she's pretty good at this. < : O

Edited by elkhoundgold
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ave you ever tried spiro, someone on this forum mentioned that spiro is also used to treat acne for people with CAH? Could you explain what your dose of pulses means, I’ve never heard of that? Did you have nodular or cystic acne? How long until your acne cleared up?

Brenmc, that was me - my endo said spiro might be an treatment option when I was being tested for CAH. I don't know why she said that though except maybe she thought if I had it, it would be mild enough that I would not need cortisol supplementation.

I think the word "enzyme" is confusing (medically correct, but confusing). As I understand it, you cannot get this enzyme from food - your body knows how to make it or it doesn't and you have CAH.

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Thanks elkhoundgold and Emily54. That makes more sense to me about the enzymes now Emily54. What do you think about what elkhoundgold said about your test not necessarily ruling out CAH? Do you think you may consider further exploration of a diagnosis? What are you currently taking to help your acne? :)

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No, pretty sure I don't have it. My 17OHP blood levels were elevated (my serum ACTH levels were normal, as were testosterone levels), so my GP referred me to an endo who did the ACTH stimulation test, which came back totally normal (meaning I did not dump 17OHP and the cortisol levels they saw were what you would expect in a non-NCAH person). So my endo concluded that I don't have CAH.

Not sure why my 17OHP levels were elevated but I had been using natural progesterone cream the month before (for acne, didn't work) so maybe that was why. (I mention this for anyone who is thinking about getting tested for CAH!)

I am now trying spiro with good results - my endo buys into the view that you can have androgen sensitivity at the skin level even if androgen serum levels are in the "normal range". Who knows.

(and thanks for the complement about my explanation - it was how my endo explained it to me).

Edited by Emily54
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No, pretty sure I don't have it. My 17OHP blood levels were elevated (my serum ACTH were normal, as were testosterone levels), so my GP referred me to an endo who did the ACTH stimulation test, which came back totally normal. So my endo concluded that I don't have CAH. Not sure why my 17OHP levels were elevated but I had been using natural progesterone cream the month before (for acne, didn't work) so maybe that was why.

I am now trying spiro with good results - my endo buys into the view that you can have androgen sensitivity at the skin level even if androgen serum levels are in the "normal range". Who knows.

(and thanks for the complement about my explanation - it was how my endo explained it to me).

I'm pretty sure that the 17O being elevated ( unless lab error ) are not normal. I hope Spiro works for ya. I'm a true believer now that acne happens for a reason. But maybe consider investigating it later. I went through a lot of bad endos who were, well, wrong. Sometimes it takes repeated testing. There are also two ACTH types--the long time and the short I believe, according to my support group. One lasts longer than the other.

Mild cases ( which is what most of them are anyway ) still require glucocorticoid therapy as it has to fix the infertility it causes in females and the outward symptoms ( such as acne) so you usually have no choice but to take it even if it's the "non classical" version ( which can cause severe acne and no life threatening symptoms.)

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I remember reading about a topic similar to this not too long ago but I just thought I put in my two cents in.

From what I know, corticosteroids (It sounds like you are taking something similar to this drug) were once thought as a miracle drug for osteoporosis (please correct me if im wrong). However, it only fixed the pain by supressing the immune system. By supressing the immune system you are putting yourself in grave danger. I recommend not using that drug of yours for too long.

What you have is complex, but what I wanted you know is about the use of corticosteroids in general.

What I meant was Arthritis, rheumatoid arthritis to be specific.

When you take glucocorticoids, or any other corticosteroids, it causes immunosupression. Essentially that means that you are more likely to catch a disease after exposure to certain bacteria/viruses.

"The prolonged use of glucocorticoids, however, is associated with potentially serious adverse effects", which is why I told you not to use it for too long.

You can read more at this article: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2872100/

Technically speaking you can use it for a long time, but it has to be carefully monitored.

The drug that you are using, is a powerful drug, and can cause serious complications, and I just wanted you to be well informed.

You can be ignorant, and go on to say how I am wrong, but let me justify myself. Rheumatoid arthritis is an autoimmune disorder and when cortocosteroids is used as a treatment for it, it suppresses the immune system from attacking your own body tissues, therefore "fixing" or curing the joint pain. However, doctors found out that the patients are much more susceptible to acquire serious adverse effects from the link I provided you. Which is why corticosteroids were once thought as a miracle drug for rheumatoid arthitis.

Back on topic, what you are taking is a class of corticosteroids, This is why I mentioned this rheumatoid arthtis story.

Edited by adrianfe12
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I remember reading about a topic similar to this not too long ago but I just thought I put in my two cents in.

From what I know, corticosteroids (It sounds like you are taking something similar to this drug) were once thought as a miracle drug for osteoporosis (please correct me if im wrong). However, it only fixed the pain by supressing the immune system. By supressing the immune system you are putting yourself in grave danger. I recommend not using that drug of yours for too long.

What you have is complex, but what I wanted you know is about the use of corticosteroids in general.

What I meant was Arthritis, rheumatoid arthritis to be specific.

When you take glucocorticoids, or any other corticosteroids, it causes immunosupression. Essentially that means that you are more likely to catch a disease after exposure to certain bacteria/viruses.

"The prolonged use of glucocorticoids, however, is associated with potentially serious adverse effects", which is why I told you not to use it for too long.

You can read more at this article: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2872100/

Technically speaking you can use it for a long time, but it has to be carefully monitored.

The drug that you are using, is a powerful drug, and can cause serious complications, and I just wanted you to be well informed.

You can be ignorant, and go on to say how I am wrong, but let me justify myself. Rheumatoid arthritis is an autoimmune disorder and when cortocosteroids is used as a treatment for it, it suppresses the immune system from attacking your own body tissues, therefore "fixing" or curing the joint pain. Which is why it was once thought as a miracle drug. However, doctors found out that the patients are much more susceptible to acquire serious adverse effects from the link I provided you.

I have to use it all my life and have no choice, so not really sure what your point is. I know older women in the support group who have been on it decades with little to no adverse effects, because we NEED it. A random person probably doesn't if it's prescribed for arthritis. It's not really for that, usually and probably shouldn't be used for it if doctors did at one point. The side effects mentioned are possibly typical of very high dose treatment and have a rate of side effects which any drug would share, which compared to many drugs that are actually very dangerous like birth control with risk of blood clots and other issues, is very minor, and the article, again, already mentions it's dose dependent. We're not on prednisone either, that's several times more potent than Cortef.

So yeah, if I wanna have fertility, I also have to take it, in addition to curing my acne. Whoever would be diagnosed with this has to use it to: improve androgen related symptoms, fix fertility and other adverse effects. A good endo will prescribe this to treat this disease, which is what it is.

Children have to take it to normalize their growth pattern growing up with late onset disease. It's very important for that as well.

I'm not being ignorant, but your original assumption is a bit exaggerated ( plus you gave a disclaimer to correct you if you're wrong, if I'm not mistaken) I'm not trying to offend you, or anything. Your tl;dr argument: there's side effects. Sure. As there are to Accutane. Even more severe ones for other medications. I have no side effects so far and would love to update people on it, if I'm still here, but by the time I'm done helping out any questions people have, I'm getting outta here so I can go live.

Edit: Allow me to further elaborate. I'm extremely happy I avoided Accutane so I could treat what was not just an acne problem, but would cause other adverse androgen related effects, for some of us is just acne. For some, Accutane is great and needed. But for those who have this, my point is, this is the medication that is NEEDED, not desired. I hope that clears it up, just a bit.

Edited by elkhoundgold
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