It looks like I have a form of Cushing's Syndrome
#272466 - 07/04/06 04:25 PM
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Vicam
Reged: 02/24/04
Posts: 1955
Loc: Ontario, Canada
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Hey Guys,
Well, I'm pretty depressed right now. Just started a new job which is really challenging (which is both good and bad) and was hoping I was turning over a new leaf...but I *finally* had my endocrinologist apppointment today and it turns out that what I've been saying to all my doctors all along is likely correct, I have a form of Pseudo-Cushings. They can't be 100% sure without a whole whack-load of testing...but they think that's what it is.
Thankfully they don't think it's regular Cushing's because I don't exhibit any of the physical signs...they said you couldn't be as small as me and have regular Cushing's. However, they were floored that my EXTREMELY high cortisol was never taken seriously before and really disappointed with my previous treatment. They even seemed impressed by my knowledge of the situation and all my previous tests and labs which is nice, because as you guys know a lot of doctors look down on people trying to be "arm-chair" doctors.
So, it turns out I may not have all the psychiatric problems they have said that I have...it could all be from the excessive cortisol. So I have to have a whole bunch of blood work down and do 3 24-hour urine collections (tons of fun) over the next month...and then I see them for a follow-up.
Sadly, they think the most likely cause is my birth control pill, so that's going to be the first thing they take away once they get the first round of testing in. That means my endometriosis is going to come back with a vengeance. Right now, I take my pills consecutively so that I don't get a period more than once or twice a year...but I'm not going to be able to take them AT ALL. After 8 years  So I'm likely going to be in a lot of pain.
So here is my question for you guys...do you think I should ask the doctors if they could postpone taking me off the birth control one more month until I'm passed the probationary period at work? Because I dont' want to be missing work during my first three months. Hopefully I won't have to...I've worked through period pain before, but you never know.
That being said, having cortisol as high as mine for as long as I have had it high isn't a good thing either...it can lead to all sorts of bad problems.
Thanks for letting me yabber on and on.
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I am so sorry to hear about your diagnosis! Us IBSers always seem to have overlapping diseases, don't we?
What about another form of BC that doesn't contain cortisol? Is there one on the market? Perhaps you could ask about different means of period suppression?
I wish you luck honey, and lots of hugs!
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Strangely enough, the pill doesn't contain cortisol, it's just that in some people hormonal birth control of any kind (especially when you are voluntarily suppressing your periods) can cause your body's hormones to get out of whack. Things like your estrogen, testosterone and progesterone get very screwed up, and your body's way of compensating is by overproducing cortisol.
So unfortunately, IF that is the cause...it basically means no more hormonal birth control for me. Which leaves the big question - to have a hysterectomy or not.
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Sorry to hear about all the health troubles you're going through! Just wondering if you considered or had the option of using the Nuva ring, it can also stop periods completely. I'm doing the pill thing like you, and my doctor had given me that as an option. I'm not sure about if it affects your hormones too though. It's something to ask about before having to get the bad periods again. And as said, there are many different kinds of pills with different hormones in them. Could you possibly try a different pill, and see how it affects you?
Good luck, and let us know how you're doing.
Kat
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Kat
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I can say that my sister has had endo surgery and is now endo free and conceived and had a healthy baby immediately when she tried, so there ARE endo treatments that it sounds like it's time to consider. Tlak to your doc about this and don't give up hope yet!!
Love and hugs!
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Keep on keepin' on...
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Well, that sucks. But isn't it a relief in a way to know that something *is* wrong? I know nothing about Cushing's, so I guess I don't know how bad it is and if there's anything to treat it. I hope it's something that can at least be gotten under control.
As far as your endometriosis goes ... you didn't have any of your endometriosis removed when you had your laparoscopy, right? Before having a hysterectomy, why not try having another lap to remove the endo? With a surgeon who does excision?
There are lots of different hormonal BC out there -- do they all affect your cortisol the same way? I'm guessing the vast majority of pills will, but what about the mini-pill or the Depo shot? I think those are mainly progesterone so maybe they'd work differently?
Your doctors would know best if it's safe to stay on BC longer, so I don't see any harm in at least asking. If it isn't safe, they'll say no. If they do say no, ask for pain meds to help get through your period.
I hope you find something that works for you. 
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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... but it sounds rubbish, so just sending you loads and loads of hugs!!
You'll get through it though I know, us IBS'ers are tough nuts - we have to be!   Keep us informed...
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http://ibsblondie13.blogspot.com/
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Hi Kelly! I can't say that I know anything about Cushings. However, it should at least be a little bit of a relief to finally know whats going on and that its not all in your head! 
I would ask about other bc options to see about controlling your endo. A hysterectomy is a major surgery and major recovery time, not to mention you'd never be able to have children (not sure what your plan is there?) so I would save that for the last resort kind of thing.
Love and Hugs!
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Taking it one day at a time.....
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Thanks :)
#272703 - 07/05/06 07:01 PM
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Vicam
Reged: 02/24/04
Posts: 1955
Loc: Ontario, Canada
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It's a fairly rare condition...pretty scary if you google it or something (I shouldn't have) but since mind is only "pseudo-cushings" hopefully I can get over it quickly. (by quickly it could be a few years but at least I CAN get over it)
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Hey Jen,
I guess I should think of it as a relief...it just sucks because this is what I thought was wrong with me in May 2005 when I was first sent to a specialist, but no one would listen to me (they actually tried to give me anti-psychotics). So it just makes me sad that I could have potentially been better by now.
As for the endo, *generally* if the pill is the cause of the cushing's than that means no more hormonal BC You of course know how much it would suck to not be able to even try out any treatments...but it's better than the alternative.
And yes, you're right about my previous surgey...I didn't have any of the endo removed. However, I don't want children and I know I would do a lot better if I didn't have to have monthly periods...plus, without hormonal BC of some sort I'd always worry about getting pregnant, so I think a hysterectomy might be a good option for me. I'd have the doctor doing it excise any and all endo at the same time (of course).
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Thanks Michele
#272705 - 07/05/06 07:15 PM
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Vicam
Reged: 02/24/04
Posts: 1955
Loc: Ontario, Canada
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That's ok about not knowing about Cushing's...it's very rare and a lot of people don't know about it (even doctors scarily enough).
Anyways, regarding the endometriosis treatment...I've already been down that avenue with the doctors sadly and if it IS pseudo-cushing's with birth control as the cause...I can't have any other forms of hormonal birth control (or any synthetic hormones at all really which is what the other treatments for endo are).
So yeah, I've been considering a hysterectomy for awhile (since I've suspected Cushing's for awhile). I know it's a major surgery and recovery time but both my aunt and mom had them (because of endo) and they managed. Plus, I've known for a long time I don't want kids and have been told I likely couldn't conceive even if I did. Scott is fine with that...and we decided that if we changed our minds down the road we would be happy to adopt. So I think that's the best way for me to go. The bloody surgery isn't even a cure, but it would definately go a long way towards making a difference.
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Thanks for the suggestion  I don't know enough about the Nuvaring to say for sure but I'm pretty sure it excretes synthetic hormones, so it would be a no-no for me, as would any other pill of any kind
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Thanks Shannon
#272707 - 07/05/06 07:17 PM
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Vicam
Reged: 02/24/04
Posts: 1955
Loc: Ontario, Canada
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Thanks Shannon,
It's always nice to hear encouraging stories about successful endo surgeries...sadly they don't work for everyone. And I know there are treatments to consider but a hysterectomy has been on my mind for a long time - it's not a cure but can go a long way towards making a person feel better which is what I want (obviously).
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Hi, Kelly:
I'm sorry that this diagnosis isn't great news, but at least it's a starting point! It's so fantastic to be taken seriously and to be working toward a cure, eh?
It's not a bad idea to ask your docs to postpone taking you off the pill. They probably will if you ask, and that way you don't risk your new job.
Good luck!
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Christine
Those who can do; those who want it done better teach.
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OK, I probably shouldn't even say this because I hate it when people say the same thing to me, and I think we're about the same age -- but you're pretty young to decide for absolute certain you're not going to have kids. And it is not easy or cheap to adopt. Domestic adoption is tough and expensive, international adoption is easier but even more expensive. (Or at least that's how it is in the US -- but I'm guessing Canada is similar.)
I also can't imagine that any doctor would do a hyst on someone so young without at least trying the lap. I don't know if you've discussed it with your gynecologist or not. I've tentatively discussed it with a couple gynecologists but they won't do it until I'm older or until I've had kids.
I know there are lots of women out there who have surgery and aren't helped much by it (and let me raise my hand for that one) -- but those are the women that post on Internet endo boards or go to support groups. The ones who have surgery and feel great have no need for those kind of resources. There are definitely success stories out there, you just don't hear them much.
Anyway, it sounds like your mind is pretty much made up, but a hysterectomy is pretty drastic surgery and you can never go back. Believe me, I've thought about it a lot, but I'm just not ready to do it even if I didn't want to have kids. Next month I am having excision surgery done, at the Center for Endometriosis Care in Atlanta GA -- they have a really good reputation and I'm really hoping that this will end the majority of my misery. Heck, if I could even get the misery to be limited to my periods I'd be totally happy.
When will you know for sure if Cushing's is what's wrong? When will you get the bloodwork results back?
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jen
"It's one of the most serious things that can possibly happen to one in a battle -- to get one's head cut off." -- LC
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Hey Jen
#272823 - 07/06/06 04:16 PM
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Vicam
Reged: 02/24/04
Posts: 1955
Loc: Ontario, Canada
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I won't know everything for sure until my follow-up August 22nd...I can likely get the blood results over the phone before that (in about a week) and interpret them myself, but I won't be seeing the specialist until August unless things look REALLY bad.
Don't worry about saying what you said about the hysterectomy. I totally understand where you're coming from and it's not like it isn't something I haven't heard before. Obviously I would give it more thought and I believe at my age you have to go through some psychiatric counselling before they will even do the surgery on you - but I still think it might be something I would want. It seems to always happen eventually to the women in my family...and the kids thing has been the way I've always felt. Plus, I don't think I would be capable of raising a child with the terrible endo pain (assuming the lap didn't work and I know it could) AND Cushing's (which could take a long time to get under control).
Plus, my fiance REALLY doesn't want children. I know he could also change his mind but I find it highly unlikely and with him being so against the idea of having kids I don't see it in our future. And we've been together 8 years so I've known that's where he stood (and he's known where I stand) for a long time. We both would love to get a big house where we could adopt a lot of animals (and maybe foster some) because we definately do better with animals than children.
That being said, I promise, I'm not just going to jump on an operating table in the next few months and let them rip it out or anything. IF the BC pills are the culprit (and they may not be) I will just take it under serious consideration.
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I've never heard of this, but big hugs! I'm sorry it's taken so much time for doctors to understand what you've been going through. Why are they so slow?!
It sounds like you've gotten some pretty good advice from the other board members. I agree that you should ask if you can continue taking the BC pill until you get through your probationary period at work.
After all the medical tests are done, what sort of treatment will you have?
Take care.
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Kelly,
I am sorry you are going through all of this. I am like the others and don't know anything about Cushings. At least with a dx they can start treating you instead of blowing you off.
I also had endometriosis. I had a complete hysterectomy at age 36. I had already had 3 children and wasn't dx with endo until I was 35. Even with all the pain I was going through I still had to convince the doc to do the hysterectomy. He actually suggested that I have another baby because he said pregnancy relieves some of the symptoms. I really had to insist.
I can honestly say that it was the best thing for me. I felt so horrible before and so much better afterwards. I know a lot of women have problems afterwards but I really didn't experience any of them. I still felt like a woman, have never had any problems sexually and on a whole felt so much better physically that it was worth it for me.
Everyone is different though and you should be aware of the pros and cons before you make your decision. The pain of endo is very difficult to live with so I do understand your thinking about a hysterectomy.
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Janey
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http://www.myspace.com/jo_elsmere
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