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Old 02-04-2008, 09:26 AM   #1
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Some information on Cushing's

Kate on the Cushing’s support board (Cushing’s Help and Support) wrote this letter after having pituitary surgery…

Dear friends and family:

I am writing this letter to share with you some basic facts about Cushing’s Disease/Syndrome and the recovery process so that you will have sufficient information to form realistic expectations about me and my ability to engage in certain activities in light of this disease and its aftermath.

As you know, Cushing’s is a rarely diagnosed endocrine disorder characterized by hypercortisolism. Cortisol is a hormone produced by the adrenal glands and is vital to regulate the body’s cardivoascular functions and metabolism, to boost the immune system and to fight inflammation. But its most important job is to help the body to respond to stress.

The adrenal glands release cortisol in response to stress, so atheletes, women experiencing pregnancy, and those suffering from alcoholism, panic disorders and malnutrition naturally have higher-than-normal levels of cortisol.

People with Cushing’s Syndrome live life with too much cortisol for their bodies as a result of a hormone-secreting tumor. Mine is located in the pituitary gland. Endogenous hypercortisolism leaves the body in a constant state of “fight or flight,” which ravages the body and tears down the body’s major systems including cardivascular, musculo-skeletal, endocrine, etc.

Symptoms vary, but the most common symptoms include rapid, unexplained weight gain in the upper body with increased fat around the neck and face (“moon facies”); buffalo hump; facial flushing/plethora; muscle wasting in the arms and legs; purplish striae (stretch marks) on the abdomen, thighs, buttocks, arms and breasts; poor wound healing and bruising; severe fatigue; depression, anxiety disorders and emotional lability; cognitive difficulties; sleep disorders due to abnormally high nighttime cortisol production; high blood pressure and high blood sugar/diabetes; edema; vision problems; premature osteoperosis; and, in women, signs of hyperandrogenism such as menstrual irregularities, infertility, hirsutism, male-patterned balding and steroid-induced acne.

Attached, you will find a sketch of a typical Cushing’s patient. As you can see, the effects of the disease on the body are dramatic.

Worse, the psychological and emotional effects of having a chronic, debilitating and disfiguring disease range from distressing to demoralizing.

Imagine that, in the space of a year, you became unrecognizable to those around you and to yourself. You look in the mirror, but the person staring back atyou is a stranger. You endure the stares and looks of pity from those who knew you before Cushing’s, fully aware that they believe you have “let yourself go” or otherwise allowed this to happen to your body. Nothing you can say or do will persuade them otherwise, so at some point, you stop trying and resolve to live your life in a stranger’s body.

You feel increasingly sick, but when you explain your array of symptoms to your doctor, you are dismissed as a depressed hypochondriac who needs to diet and exercise more. Worse, your family members think the same thing — and are often quick to tell you how you need to “change your lifestyle” to overcome the effects of what you eventually will discover, once properly diagnosed, is a serious and rare disease.

If only it were so simple! No one would choose to have Cushing’s. Those of us who have it would not wish it even on our worst enemy.



Most people with Cushing’s long for the ability to do simple things, like walk a flight of stairs without having to sit for half an hour afterwards, or vacuum the house or even unload a dishwasher.

One of the worst parts about this disease is the crushing fatigue and muscle wasting/weakness, which accompanies hypercortisolism. Not only do we become socially isolated because of the virilzing effects of an endocrine tumor, which drastically alters our appearance, but we no longer feel like ourselves with regard to energy. We would love to take a long bike ride, run three miles or go shopping like we used to — activities, which we took for granted before the disease struck. Those activities are sadly impossible at times for those with advanced stages of the disease.

Sometimes, as with any serious illness, performing even basic tasks of daily care such as showering and dressing can exhaust the limited reserves of energy available to a Cushing’s patient.

How do we explain to you what it’s like to watch our lives slip away? What response is sufficient to express the grief and frustration over losing so much of ourselves? It is often difficult to find the strength to explain how your well-meaning words of prompting and encouragement (to diet or exercise) only serve to leave us more isolated and feeling alone.

Though we wouldn’t want it, we wish our disease were as well-understood as cancer so that those who love uswould have a frame of reference for what we go through. With Cushing’s, there is such limited public awareness that we are left to describe the effects of the disease from a void, often with limited understanding from those who love us most, which is disheartening.

The most frustrating misconception about this disease is that we somehow are “doing this to ourselves,” or delaying recovery because we need to continue steroid replacement or lack the energy to excercise often, which is sadly false. Trust me that we would love to have that much control over such a terrible disease.

Fortunately, there is a good likelihood of remission from Cushing’s in the hands of a skilled pituitary surgeon. Unfortunately, the long-term remission rate is only 56%, meaning that 44% of people with Cushing’s will require a second (sometimes third) pituitary surgery, radiation or bilateraly adrenalectomy to resolve the hypercortisolism. Without successful treatment, Cushing’s leads to death. Even with successfultreatment, I will have to be monitored for possible recurrencefor the rest of my life.

After surgery or other treatment, the recovery period can last months or even years. Because the tumor takes over control of the body’s production of cortisol, the adrenal glands, which had lain dormant prior to surgery, require time to start functioning properly again.

Until this happens, we must take synthetic steroids or else risk adrenal insufficiency or adrenal crisis, which can be quickly life-threatening. Careful monitoring of our cortisol levels is critical during the weaning period. It is a rare but sad fact that some people’s adrenal glands never return to normal, and those people must continue to take hydrocortisone or prednisone — sometimes for life — simply in order for the body to perform correctly its basic systemic functions.

The physical recovery from surgery can be quick, but the withdrawal from hydrocortisone can be a lengthy and extremely painful process. As I described above, Cushing’s causes a tearing-down of muscles and bone. While there is an over-abundance of cortisol in our bodies (as a result of the tumor), we often can’t feel the effects of the muscle-wasting and bone deterioration because of the anti-inflammatory action of cortisol. Upon weaning, however, these become painfully (literally!) evident.

The physical pain experienced while weaning from cortisol has been described as worse than weaning from heroin. When cortisol levels are low, one experiences the symptoms akin to a really bad flu, including severe fatigue (”like a wet cement blanket laid on top of me”); weakness and exhaustion; nausea; headache; vomiting; mental confusion. It is imperative for people who are on replacement steroids after Cushing’s surgery to carry extra Cortef (or injectable Solu-Cortef) with them at all times in addition to wearing a medic alert bracelet so that medical professionals will be alerted to the possiblity of adrenal insufficiency in the event of an adrenal crisis.

People who have struggled with Cushing’s Syndrome all hope to return to “normal” at some point. Though none of us want to have Cushing’s, it is often a relief finally to have a correct diagnosis and treatment plan. For many, there is a gradual resolution of many Cushing’s symptoms within a few years of surgery or other successful treatment, and a good quality of life can be achieved.

But regrettably, this is not possible in every case. Depending on the severity of the disease and the length of time before diagnosis and treatment, the prognosis can be poor and lead to shortened life expectancy and diminished quality of life. This is not a choice or something we can control, but it is the reality for some people who have suffered the consequences of long-term hypercortisolism.

The best support you can give someone who is suffering from Cushing’s or its aftermath is to BELIEVE them and to understand that they are not manufacturing their illness or prolonging recovery. Ask them what they are able (and not able) to do, and then be prepared to help them in ways that matter — whether that be to bring them a meal or help them to run errands, pick up prescriptions from the pharmacy or clean their house.

Because it’s these little everyday tasks, which can fall by the wayside when someone has (or has had) Cushing’s, and these are the things we miss the most: doing for ourselves.

Ask us questions about the disease, and then actively listen to what we say. We know you don’t know much about Cushing’s — even our doctors sometimes lack information about this rare disease. But know we appreciate the interest and will tell you everything you want to know, because those of us who have it necessarily become experts in it just in order to survive.

Thank you for caring about me and for hearing what I am saying in this letter. I know you love me and are concerned about me, and I appreciate that so much. Thank you also for taking the time to read this letter. I look forward to discussing further any questions you might have.
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Old 02-04-2008, 12:13 PM   #2
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so is this what you have Shawna?

I was diagnosed with this years and year ago but after having a MRI and a cat scan i did not have the pituitary tumor and the diagnosis was wrong.

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Old 02-04-2008, 02:24 PM   #3
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girl and thanks for posting this!

Sleepy and sooo glad you don't have this stuff.

Shawna, these are my exact symptoms. EXACT except they haven't been able to find any abnormality in my cortisol and adrenal hormones although I do have bilateral adrenal adenomas. *sigh*. In a way, I wish they would just find one on my pituitary and operate on it! Oh well. There's a reason I have this stuff.
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Old 02-04-2008, 02:42 PM   #4
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so what did you end up having pooticus?
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Old 02-04-2008, 03:03 PM   #5
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Well at best they call it Cushing's Syndrome. But really they say that if anything, I have an episodic form of it and they consider it to be in "remission" at this point. They really are not sayin much at this point.
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Old 02-04-2008, 06:05 PM   #6
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Yes this is the disease process that I have. I actually have pictures of myself in my panties and bra that look just like the one sketched.

Poot-Are they not considering doing surgery on your adrenals? There is cyclic Cushing's Syndrome, but they can treat it with surgery. Here is a wonderful website with lots of information and a support board. Check it out. Welcome! / Cushings-Help.com Support for Cushing's Syndrome and Cushing's Disease

I went to my endo appointment today. Doctor diagnosed me and is getting me set up to see a neurosurgeon. Now it will be up to the neurosurgeon to decide if she wants to do surgery based on the results of all these tests or if she wants me to have one final test that definitively diagnoses the disease. Unfortunately this test scares me to death. It's very similar to a heart cath but they go up into your brain from your femoral artery. I'm hoping against hope that she determines that the MRI results (larger than normal left side of the pituitary that they can't determine if it's a lesion, but can't rule out a microadenoma but with my history blah blah blah) and the other laboratory tests (blood and urine) are enough to schedule this and get it taken care of. This is where I am at right now. Still in a holding pattern. *sigh*
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Old 02-05-2008, 01:06 AM   #7
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Mine is bilateral Adrenal Hyperplasia. I've had it since I was in my early twenties and I'm 54 now. So Cushings syndrome for me.

None of my family believe it. I've lived in shame all these years because no one could be bothered to read about it.

Sometimes the facial flushing has felt so hot I thought my eyes were cooking.

It's not a nice thing, and Shawna, I wish you complete success and recovery.

Hugs,
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Old 02-05-2008, 05:00 PM   #8
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big big Shawna, Poot and Deb

Thanks so much for posting this Shawna.



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Old 02-07-2008, 11:47 AM   #9
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Hugs and healing to all my sistas who suffer from this! It can't be fun.
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Old 02-12-2008, 12:38 PM   #10
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any new news shawna?
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Old 02-12-2008, 02:24 PM   #11
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Well I did get the results of my MRI. It was inconclusive. It didn't say yes and it didn't say no. There is a largening of the left side of my pituitary and the radiologist can't rule out a pituitary tumor. Dr. Ovalle (endo) referred me to a neurosurgeon as he feels the positive results on my tests prove I have Cushing's Disease. The neurosurgeon refused to see me until I did another 24 hour urine. I ended up crashing myself in order to do this. Tremendous muscle aches, rapid heart rate, panic, and increased blood pressure from lack of sleep. I was having to work, drive back and forth to Birmingham and work, and it was allowing me to get approximately 3-4 hours sleep for 3 days. I ended up having to call in yesterday and sadly if I didn't NEED to work I would take today off too. I'm wiped out. Got the results yesterday and they of course showed the over 1000+ mcg/24h of cortisol. Normal is 56-258. Needless to say my stress level is through the roof. The results are to be faxed to the neurosurgeon, who should be getting back in touch with me to set up an appointment. Dr. Ovalle believes she is going to want me to do ONE MORE test *sigh*. It's called a petronal sinus sampling. It's very similar to a heart cath, but a bit more invasive. They go up both femoral arteries at the same time and instead of stopping at the heart go all the way up into arteries in the brain. They take blood samples from both sides as well as a peripheral iv and then inject me with a hormone and see how my pituitary reacts. This is supposed to definitively diagnose not only that the pituitary tumor is there, but which side it probably is on. Anywho, this is where we stand right now, in limbo as always. I have learned in all my research that this is the hardest disease to get diagnosed. It isn't called "the Ugly Disease" for nothing. Thanks for thinking of me. I totally appreciate it!
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Old 02-12-2008, 03:46 PM   #12
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Shawna...just curious...Did they do a CT scan of your abdomen to rule out that you may have adrenal tumor/s???

and to you. I know it sounds counter productive but gosh, do whatever you can to keep your stress lower. Please keep us up to date with what's happening!!!
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Old 02-13-2008, 05:09 AM   #13
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Sending hugs Shawna, I know this is exasperating. For me, it took over twelve years to get a proper diagnosis.
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Old 02-18-2008, 11:07 AM   #14
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praying for you
please keep us posted shawna
and please get back on plan
you were doing so well
and it can only help
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Old 03-04-2008, 08:19 AM   #15
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anymore news shawna?
hoping all is well
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Old 12-21-2008, 10:19 AM   #16
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I had a left laporscopic adrenalectomy on 9/19/2008. Thanks for this info. I am struggling with recovery. God Bless!
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Old 12-21-2008, 08:48 PM   #17
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Hi Shauna,
I know it's scary to have the IPSS (Petronal sinus) test, but the doctors think it's impt. I had one for my Cushing's workup and it showed off the scale that I did have a tumor and where it was.

It was scary and I had pain afterwards - just scared it was going to bleed again. I think if you go to the other Cushings web site and search, you'll find a lot of posts. (One was a flame war where some people said it was a piece of cake and others of us thought it was tough.)

The 2 pit surgeries didn't work for me and I had to have a BLA (removal of the adrenals), but I'm better and have lost 100 lbs.

All the best for you and hoping the testing is easy! Kelly
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Old 12-23-2008, 06:38 AM   #18
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how you feeling Shawna?
did the surgery help you at all with weight loss?
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Old 12-24-2008, 01:47 AM   #19
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a very good thread. hope you have a speedy recovery
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Old 12-26-2008, 01:28 PM   #20
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I just saw that this thread has been bumped. When I have more time. I will come back and let you all know what has happened over the past year. Thanks for thinking of me!
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Old 02-12-2009, 10:13 AM   #21
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Shawna I hope you are doing better. I'm just coming off a 3 year stint of cotisone therapy for adrenal failure (which I didn't have) and my new endo weaned me off the cortisone over the past 2 months. I believe I had Cushing's since at least 1995. I think mine is cyclic I have had a Cushing's type body except for my weight loss in 2004 due to gastropresis. The last 6 months I have gained 45 lbs, had a kidney stone, a "possible seizure" I feel SOOO tired. I don't know when I will start feeling better and my adrenals take over full force again.

I had a pituitary MRI that was unremarkable but no adrenal scan and no 24 hr cortisol or ACTH stim test. Just a couple random blood levels by my prior endo which led to the wrong diagnosis.

I have what you explained "severe fatigue (”like a wet cement blanket laid on top of me”); weakness and exhaustion; nausea; headache; mental confusion." I hate to sleep because I have high anxiety in my sleep and even with sleeping pills I awake between 4-5am with heart palpitations and panic attacks. I have an ER solu-cortef on me.

It's interesting to note that because ambulance people never heard of Addison's or Cushing's (in my experience), they would not give me my ER injection when I had a kidney stone even after reading the adrenal crisis letter signed by my doctor. I had to wait 30 mins until I got to the hospital for a hydrocortisone IV. Good thing I wasn't in an accident and bleeding out or the ambulance people would have just watched me die and shrugged their shoulders.

Blessings,
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Old 02-12-2009, 05:26 PM   #22
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Interesting...u say the medical alert ID that I wear that reads"adrenal insufficeincy" is useless???
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Old 02-12-2009, 08:29 PM   #23
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It was for me. They don't carry solucortef and would not adminster any meds that were not approved verbally by a doctor telling them to go ahead. I couldn't believe my ears.


Quote:
Originally Posted by carbkinky View Post
Interesting...u say the medical alert ID that I wear that reads"adrenal insufficeincy" is useless???
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Old 02-12-2009, 08:30 PM   #24
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My changes in 6 months:

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Old 02-19-2009, 12:51 AM   #25
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Wendy,

I'm sorry it took me so long to get back to you. I'm having some personal issues. You definitely have the look of Cushing's. I have pictures of myself going back years that look exactly like the sketch I posted. I am no longer on hydrocortisone, which is a blessing and a curse. It means that for right now my body isn't producing too much ACTH and cortisol and possibly I could be cured, but the sad reality is it will probably reoccur. I ended up having to stay almost a week in the hospital due to developing Diabetes Insipidus from the tumor removal. Then when I did go home, I was still vomiting and unable to keep down my hydrocortisone and ended up in the ED. I begged and pleaded with them to give me steroids and even explained what I had done. I'm a nurse even for goodness sake and still they sent me for all sorts of tests because they thought I was having a pulmonary embolism. My husband had to come home the night I was admitted and was scared to death for me. They admitted me to a room and gave me a stress dose of solucortef and guess who was sitting up happy as a clam the next morning when my husband showed up!?! Yep! Why they wouldn't listen to me, I will never know. My doctors never seem to though. My MRI only showed a slight enlargening to the left side of my pituitary gland and never showed a tumor. I cycled myself and believe I have had Cushing's for quite some time. My lab work in 2004 was consistent with what I ended up with in 2008. Although I did end up with normal ranges in between. It's a sucky disease that they need to look into more. I believe more people have it that than they diagnose with it. I believe it cycles and because of this people get told they are hypochondriacs and just end up living miserable lives being obese. I still have a hemoglobin A1C of 5.7 showing I am not anywhere near being diabetic and this throws my endocrinologist off so much. Cushing's is the only disease that I have found that they demand you have every symptom in order to get diagnosed with it. It's obsurd! All my other symptoms from my previous bout with it didn't even get put into play. I say find yourself a great endo and test and test some more. You will need salivary cortisols, you will need 24 and 72 hour urine tests, you will need tons more, but do NOT EVER let them make you think you are crazy! You are not. It's the disease! I wish you luck and if you ever need me or want to ask questions post back here or you can add me to your facebook!
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Old 02-19-2009, 05:26 PM   #26
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Thank you ladies for sharing your stories. Your attitude in the face of your obstacles is a beautiful thing. Thanks for educating all of us!
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Old 12-18-2009, 04:27 AM   #27
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Old 12-31-2009, 09:19 AM   #28
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Hey Wendy! Glad to see you again. I have pretty much decided that my Cushing's is back again. I know that in 2010 I will be getting another full work up and I hope to find an amazing Endocrinologist in Texas when I get there. This disease has been so maddening and I'm tired of fighting the very people who are supposed to be helping me. Being in the healthcare field makes it even more upsetting. I hope all is well with you! Like I said if you ever need to find me you can locate me on facebook. I'm Shawna Froelich.
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Old 12-31-2009, 12:11 PM   #29
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Hey, everyone. I was just going through this thread, and I have to say you've got me wondering about whether I have Cushings, too. I have pictures of myself in the Gallery. Can you please look at the ones I took recently (you'll be able to tell which ones, because I was hot in the other ones,) and give me your opinion? I see myself totally in the woman in the diagram in the OP, and the symptoms sound so much like me. I don't have all of them, but a great many of them. Including the menstral "irregularity." In fact, I had ovarian failure in my early 20's and was never able to have children. I've often told my sister that just showering and drying off is a work-out for me, and that was also mentioned in the article. I lie around a lot, and get wasted very easily. I could go through that whole list one by one, but you get the picture.

Speaking of pictures, can any of you post pictures of yourselves, before you were diagnosed and maybe even after you were treated? I've never had my cortisol level checked. If I do have it, I've had it for 11 years or more. What a total waste!

What are the definative tests for Cushings?
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Old 01-01-2010, 09:03 PM   #30
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Stats: 441.2/*sigh*/200
WOE: Open mouth insert utensil and chew!
Start Date: 05-02-2011
The link I posted has absolutely all the information you could need about this disease process. Every test and what is involved is listed there. It is a great resource! Be prepared for a fight. This isn't something they will diagnose you with easily!! HTH!
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