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Found Out The Cause Of My Severe Cystic Acne

cushings tumor adrenal cortisol sick health severe acne girl skin

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#1 yoshigirl

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Posted 19 April 2013 - 05:02 PM

Well after months of getting off BP and breaking out in severe cystic acne, I went to see an endocrinologist in January to figure out the problem. After months of tests, labs, bloodwork. A cat scan showed I have a tumor on my adrenal gland causing my body to produce too much cortisol which causes cushing's syndrome. condition is very rare it only affects 2 in a million people. And because of excess cortisol it is causing the acne since tests shows I have normal estrogen/ testosterone/ androgen levels. I have to get surgery to remove the tumor and hopefully all the other terrible symptoms will resolve. I urge those of you guys who have severe acne to see if you have a hormonal problem and see endocrinologist before you go to dermatologist or take accutane or whatever because severe acne is most def a hormonal problem. Please check out my blog and show some support thanks guys.

 

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Edited by AyeAye, 28 July 2013 - 08:39 PM.


#2 whoartthou1

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Posted 19 April 2013 - 07:16 PM

Hey yoshigirl, I am glad you found out whats causing your acne. How did you get an appointment with an endocrinologist? Did you tell him it was acne related?



#3 yoshigirl

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Posted 19 April 2013 - 10:17 PM

Hey yoshigirl, I am glad you found out whats causing your acne. How did you get an appointment with an endocrinologist? Did you tell him it was acne related?

I went online and found an endocrinologist in my area and made an appointment. Yeah I stopped getting my period and had bad acne and very bad anxiety so I knew something was really wrong bc I use to be a jolly social person and never had acne as a teen. I thought I needed to get on bcp to balance my hormones but a test showed that everything was fine and I had abnormal levels of cortisol which lead to more tests to finally diagnose the tumor.



#4 whoartthou1

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Posted 19 April 2013 - 10:21 PM

Does this only apply to women or even men?

 

I get very bad anxiety as well.

 

How long did it take you to make an appointment? Also how long have you had bad acne for?



Also yoshigirl, is your acne gone?



#5 yoshigirl

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Posted 19 April 2013 - 10:35 PM

It took two weeks to see the endo, yes both men and women can get cushing's syndrome/ disease though its more common in women. Have you looked at my blog? it lists all the symptoms and has more info/videos. my condition is rare so don't be scared. but still, It is important for you to get your hormone levels checked so you can balance it out. I am in the process of booking surgery right now so my acne is still present but the doctors say that once I get the tumor removed, my cortisol levels will drop and I will no longer have the acne and will recover from the 20+ symptoms I am experiencing.



#6 whoartthou1

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Posted 19 April 2013 - 11:24 PM

if you dont mind me asking, which tests did the doctor perform?



#7 yoshigirl

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Posted 20 April 2013 - 08:39 AM

thyroid panel, several different bloodtests for cortisol, urine, saliva



#8 Dermarolling Girl

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Posted 30 June 2013 - 09:49 PM

I had a friend who never had a problem with acne until we got to high school. He started breaking out in HUGE cysts. They were all over his face. It was really bad. Turns out he had cancer (not sure what kind) and it had gotten so bad that he didn't live long. The year after we got out of high school, he passed away. His family didn't have money so when he had been breaking out they couldn't afford to take him to get checked. Honestly how many of us actually go get a check up because we're breaking out? It was the saddest thing.



#9 yoshigirl

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Posted 25 July 2013 - 02:51 PM

Yes, it is important to get a check up if your body starts to show signs or symptoms you never had before. Most people spend so much time on the outside like topicals, facials, etc and not looking at the inside where that is the underlying cause to severe forms of acne. I am happy to report that eversince the adrenalectomy, I no longer have the cystic acne just regular pimples now. My skin is getting dry and itchy so i guess i am less oily and less breakouts. I hope it continues to improve. I am also less bloated and my face is shrinking tremendously along with a flatter belly and normal blood levels now. I am also getting my womanly curves back and less weird hair growth on body. So physically I am seeing the improvement. I am not sure if I feel a big improvement on the depression and anxiety but it is up and down which is better than down all the time. Still on steroids because my remaining adrenal gland has not woken up yet but hopefully it will soon and I'll continue to improve!



I had a friend who never had a problem with acne until we got to high school. He started breaking out in HUGE cysts. They were all over his face. It was really bad. Turns out he had cancer (not sure what kind) and it had gotten so bad that he didn't live long. The year after we got out of high school, he passed away. His family didn't have money so when he had been breaking out they couldn't afford to take him to get checked. Honestly how many of us actually go get a check up because we're breaking out? It was the saddest thing.

That is really sad. I've been reading alot of stories similar and I hope that people don't ignore signs of their health problems and there are other ways to get money for healthcare if you can't afford it. I signed up for a program for low income families that took care of about 80% of my medical bills. I am sure more states offer some kind of financial assistance. Seriously prevention is the best thing! If I would have gotten a full check up( hormone tests) the first sign of my acne thing's would have been much more simple in terms of recovering now. Instead, I started to use BP and it worked to clear me up but then I paid for the consequences later when my symptoms got worse. Please check out *Moderator edit, URL removed – please read the board rules*
 



#10 mikito

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Posted 26 July 2013 - 05:49 AM

Thank you, Yoshigirl for sharing your experience with us. I am glad to know that now you are fine. I think the most important thing to detect if the acne is caused by a tumour or not, is that you have never had acne before when you were a teen, and I supposed that was your case as you say in your post . Do you agree with me ? Because I think that if you ask the people at this forum the 90% percent were suffering severe acne since they were teenagers.

 

In Spain, for instance, you don't need to have money to get an appointment  with an endocrinologist or to run tests, because it,s free. Although, it's useless because doctor don't pay attention when they know you have severe acne.  I am 43 years, and I have visited different dermatologist, and an endocrinologist once, and they say that test show normal  hormonal levels  and they prescribed the most common medication for acne ( diane35 or Roacutane). I would prefer to pay money and get a full check up.



#11 yoshigirl

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Posted 26 July 2013 - 05:01 PM

Thank you, Yoshigirl for sharing your experience with us. I am glad to know that now you are fine. I think the most important thing to detect if the acne is caused by a tumour or not, is that you have never had acne before when you were a teen, and I supposed that was your case as you say in your post . Do you agree with me ? Because I think that if you ask the people at this forum the 90% percent were suffering severe acne since they were teenagers.

 

In Spain, for instance, you don't need to have money to get an appointment  with an endocrinologist or to run tests, because it,s free. Although, it's useless because doctor don't pay attention when they know you have severe acne.  I am 43 years, and I have visited different dermatologist, and an endocrinologist once, and they say that test show normal  hormonal levels  and they prescribed the most common medication for acne ( diane35 or Roacutane). I would prefer to pay money and get a full check up.

 

Thankyou! Yes I agree that acne gets ignored as a medical problem but for sure if it is severe acne there is a underlying cause. We are talking about health here and not just cosmetic reasons. at the beginning I did notice something strange about how I looked and felt. I had maybe 1 or 2 pimples. I went to the doctor and told them that I did not feel right and they said I looked young and healthy and completely ignored all of my complaints they just wanted to put me on bcp too... I should have gotten a second opinion but I didnt know any better until things became unmanageable years later. You gotta go get second opinions from specialists and fight for your health, it'll cost you a lot more money, pain & suffering in the long run if you keep putting it off.



#12 Beatrice1

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Posted 04 October 2013 - 04:14 PM

Hi Yoshigirl,

 

I'm happy you found what was causing your acne. Would you mind telling me what was your cortisol level at? Mine was really high around 36, but is now down to 20,5 (still on the high side). My doctor and i suspect that it's my high cortisol levels that are causing my acne. Would you mind telling me what other symptoms you had as well? I suffer from depression and anxiety (from time to time), acne,  very hard for me to add muscle on my body, usually gain weight around my belly, and my body has a hard time adapting to cold or warm weather.

 

B