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cloudydreamer

Anyone else have elevated DHEA-S/adrenal PCOS?

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I'm beginning to wonder if I have adrenal-based PCOS. My DHEA-S level was almost 500 mcg/dL - no wonder my skin has been on a downward spiral and disgustingly greasy! DHEA-S is an adrenal androgen, so anything over 400 is going to cause acne, hair growth, etc. :( My total/free T levels were both within normal range, which is puzzling...and makes me question if it could also be late onset CAH. 

Does anyone know how to safely lower DHEA-S naturally? Dexamethasone and prednisone are options I'll be discussing with my new Endo on Feb 9. I'm interested, but it scares me when some people say it causes worse acne [?] and weight gain. Thanks for any support/insights. 

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Hello,
I would steer clear of the Steroids, they can and do cause acne as a side effect. Usually your skin looks good on them , but when you come off BOOM!! Most of the time it is superficial acne that resolves quickly. But for some (me) there is the rarer side effect of causing large numbers of large, deep closed comedones, followed by them all getting inflamed, of course. For me, methylprednisolone followed by prednisone (for an allergic reaction) resulted in this terrible acne that would not go away.
Have you thought about Spironolactone (as an androgen blocker) and/or birth control pills? Spiro is the only thing that has helped my very stubborn acne.
I regret the day that steroids ever entered my body. Or the day that Retin A ever touched my face (but that is another story). They really messed me up. My face will never be the same.
Good luck!!!

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3 hours ago, sararey said:

Hello,
I would steer clear of the Steroids, they can and do cause acne as a side effect. Usually your skin looks good on them , but when you come off BOOM!! Most of the time it is superficial acne that resolves quickly. But for some (me) there is the rarer side effect of causing large numbers of large, deep closed comedones, followed by them all getting inflamed, of course. For me, methylprednisolone followed by prednisone (for an allergic reaction) resulted in this terrible acne that would not go away.
Have you thought about Spironolactone (as an androgen blocker) and/or birth control pills? Spiro is the only thing that has helped my very stubborn acne.
I regret the day that steroids ever entered my body. Or the day that Retin A ever touched my face (but that is another story). They really messed me up. My face will never be the same.
Good luck!!!


Thanks for your insights. I called my derm today and asked them what they thought about a very short round of prednisone but I'm still on the fence about it. Apparently if you have late onset CAH, you are deficient in cortisol and need cortisone therapy in order to be normal. I do actually have quite a few symptoms of low cortisol. I'm so eager to get to the Endo next week and get more labs to see if that is what I really have going on. I'm so sorry you got such a rare, serious SE from those steroids. :( 

Spironolactone induced the same comedonal acne you described you had in me. It's almost as if it made me more androgenic? I'd never gotten neck acne before until Spiro and it was horrifying...to suddenly have cysts all over my back was equally as scary. Maybe it didn't work well because Spiro is a Testosterone blocker, and my T levels are normal? Birth control, no matter what kind I try, also induces horrible cystic acne. I also have an appointment to see the derm Feb 21 to finally get the Rx for low dose Accutane as a result of trying both drugs. They said they would give me prednisone before Accutane to prevent an IB, so if steroids really do cause breakouts I am confused as to why they'd do this? 

Retin A screwed me up too, it caused a chemical burn that made a cyst form. Differin also caused stinging pustules to form. The reason I also thought Accutane could be a good choice is because I simply cannot tolerate any topical therapy. I feel sick over this. I just want this to end. 
 

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35 minutes ago, cloudydreamer said:

Thanks for your insights. I called my derm today and asked them what they thought about a very short round of prednisone but I'm still on the fence about it. Apparently if you have late onset CAH, you are deficient in cortisol and need cortisone therapy in order to be normal. I do actually have quite a few symptoms of low cortisol. I'm so eager to get to the Endo next week and get more labs to see if that is what I really have going on. I'm so sorry you got such a rare, serious SE from those steroids. :( 

Spironolactone induced the same comedonal acne you described you had in me. It's almost as if it made me more androgenic? I'd never gotten neck acne before until Spiro and it was horrifying...to suddenly have cysts all over my back was equally as scary. Maybe it didn't work well because Spiro is a Testosterone blocker, and my T levels are normal? Birth control, no matter what kind I try, also induces horrible cystic acne. I also have an appointment to see the derm Feb 21 to finally get the Rx for low dose Accutane as a result of trying both drugs. They said they would give me prednisone before Accutane to prevent an IB, so if steroids really do cause breakouts I am confused as to why they'd do this? 

Retin A screwed me up too, it caused a chemical burn that made a cyst form. Differin also caused stinging pustules to form. The reason I also thought Accutane could be a good choice is because I simply cannot tolerate any topical therapy. I feel sick over this. I just want this to end. 
 

I am so sorry to hear all of this! Yeah, I think that an Endocrinologist sounds like the next best step. What a terrible thing about the Spiro! I guess it's just impossible to know how anyone will react to these drugs. What a crap shoot.
I think they don't worry too much about the Pred causing acne as you will be on Accutane to clear it up. And usually the steroid induced acne is very superficial, I got the superficial stuff too, followed immediately by the comedonal acne.
I think that Accutane sounds like an OK next step, it was going to be mine if the Spiro had not worked. I can't tolerate any topical medication either, those topicals caused way more damage than any oral medication ever has! I still may try Accutane someday...
I know how depressing all of this is, I am there too, feel like I am going to puke when I look in the mirror, just know that you are not alone...
Best Regards

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Omg, yes! I have had the same problem for years now! 

Spiro and Yaz helped me a lot, but really messed me up when I stopped taking them. Especially the Yaz. My hair fell out, my skin was worse than ever, I developed massive anxiety, etc.  
I'm now on my second month of Accutane and so far, so good! My skin is soooooo clear now, but I'm worried it won't be permanent. I guess only time will tell!

My DHEAS was over 600 at one point. My cortisol was tested and it was elevated very slightly too, but not enough to diagnose me with Cushing's Syndrome. It's really frustrating because none of my endocrinologists have ever had a solution. 

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On 2/21/2017 at 3:21 PM, Hill257 said:

Omg, yes! I have had the same problem for years now! 

Spiro and Yaz helped me a lot, but really messed me up when I stopped taking them. Especially the Yaz. My hair fell out, my skin was worse than ever, I developed massive anxiety, etc.  
I'm now on my second month of Accutane and so far, so good! My skin is soooooo clear now, but I'm worried it won't be permanent. I guess only time will tell!

My DHEAS was over 600 at one point. My cortisol was tested and it was elevated very slightly too, but not enough to diagnose me with Cushing's Syndrome. It's really frustrating because none of my endocrinologists have ever had a solution. 

It's both a relief and a bit depressing knowing what's basically adrenal PCOS causing my symptoms, unless labs from endo come back with signs pointing to LOCAH or cushing's this week but I doubt it. I truly believe the pill and plan B did something to trigger this in me as that's when this all started for me and it went downhill after I stopped all contraception. I can't see it being a coincidence at all. But the good news is that there has to be a way to reverse this, too. The doctor said it's stress-related and steriods like dex will bring it down but she was so stubborn and annoying, super against dex for absolutely no reason other than 'it makes you feel crappy' which is stupid since super low doses DO work to lower DHEA-S and offer few side effects. So I'm seeing an OBGYN next Monday to try and get dex for this horrible DHEA-S problem. I think that's why my total T is slightly elevated as well, it's 45 ng/dl and it's because DHEA-S turns into T. :( 

I'm also going to try low dose/500mg Metformin to see how that affects me before staring dex but I don't see how it's going to help since the primary source of my androgen excess is my adrenals not my ovaries. Still, my T is high, it should only be like 20...so let's pray for a miracle here. I'm starting accutane Sunday night! I'm so glad to know it's helped you, it gives me hope. They also rx'd me Prednisone in case it gives me an IB but I truly hope not, I already have scars. Also I'v been taking Licorice and white peony tea for almost 2 weeks now and I do see some changes in the severity/frequency of hormonal acne and hair growth which is cool. I'm glad it seems to be slowly working, maybe you can try it. 

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