I agree with your doctor, licorice root would not give you a 24 hour urinary free cortisol of 154.

The cause is likely a pituitary tumor or an adrenal tumor. It is VERY common for the pituitary tumors to not be found on an MRI. They are often less than 1mm in size. They can do Inferior Petrosal Sinus Sampling to confirm the presence of a pituitary tumor even in cases where one can't be seen on MRI. An experienced pituitary surgeon is still often able to operate successfully.

Nearly every symptom gets better once your cortisol returns to normal.

Recurrences are common, but it is better to have treatment than to not have treatment.

Hello Again,
Thank you so much for your responses. I'm seeing a new endo tomorrow that my regular doctor has recommended to me My regular doctor is also new to me so neither know what I was like before all the physical changes. I'm concerned that they will not believe that these are changes for me. 2 years ago I was a strong ( I lifted weights), healthy and vivacious mom of three lovely teenagers and a adorable standard poodle.
Now my family is in crisis because I'm not anything like I used to be or what they are used to.
I'm having severe difficulty coping with all these physical changes. I feel and look horrible.
I aologize for my emotional rant
What I'm hoping you can help me with at this time is any advice about how or what I should ask the new endo I''m seeing tomorrow.
Is there anything specific I should tell her or ask her?
Any and all advice is appreciated and welcome.
I'm grateful to hear from you.
Sandrina

Focus on how your symptoms have been a very rapid onset.

You have already had the most sensitive test to diagnose cushing's, the 24 hour urinary free cortisol and it came back entirely diagnostic of cushing's - there's pretty much no way you could not have cushing's with that test result. Your first doctor has actually done a very good job in ordering the right tests.

So, now, your endo needs to figure out why you have cushing's. The ACTH test should help that story. If your ACTH is high then you probably have a pituitary tumor and if it's low you probably have an Adrenal tumor. If you have a pituitary tumor they can try to do another MRI and they should do an IPSS to confirm the pituitary source (Inferior Petrosal Sinus Sampling). If a pituitary tumor is found on MRI or confirmed through IPSS you need pituitary surgery from an experienced pituitary surgeon. There are only a few in the country and none are in Minnesota (and in fact there aren't really any in the midwest). 85% of cushing's cases are caused by a pituitary tumor. If you have an adrenal tumor usually they remove the adrenal gland with the tumor on it. This is a simpler surgery and can be done in most quality hospitals by an endocrine surgeon.

Anyway, we're putting the cart in front of the horse a bit here.

I'd focus on the symptoms you have and when you got them and your 24 hour urinary free cortisol result. If she is not willing to diagnose you based on that and offer a plan for treatment and next steps I would press her for that.

Most endocrinologists who are not cushing's specialists have never had a cushing's patient. Do not expect this new endo to be a wealth of information or experience.

Thank you again for all your good advice!
Okay, If you would bare with me about the licorice root again?!
I have read, and all too late, that Licorice root raises your cortisol levels, indirectly by blocking something else, I don''t remember the jargon now.
I have stupidly taken this herb daily on and off for 2 years. I believe this has done the damage. If this is so (humour me here), and i have stopped taking it over a month ago, do you think my cortisol ever go down on it's own. If this did cause it (humour me again) There would in fact, not be a tumor, and then there will be no cure?
Is is possible that doctors may not know enough about this root to even know the answer?
I just not only is this root the cause, and worse my own fault, and even worse it muddys the cure as well.
Any thoughts?
I know your not a doctor (or maybe you are) but I'm just seeking your opinion which sounds quiete experienced!!
I hope you will endure my ponderings and stick with me for a bit.
Thank you,
sandrina

Licorice root raises cortisol levels by stopping the liver by breaking cortisol down. However, in a healthy person, this causes their body to slow production of cortisol, meaning their blood cortisol levels would not be very elevated if at all.

In a person with cushing's where the mechanisms that regulate cortisol production are broken, the licorice root would make it worse.

However, regardless, your cortisol levels and your body's cortisol-producing functions would quickly return back to normal once you stopped taking licorice root. In my opinion, your urinary free cortisol result can not have been from taking licorice root months ago.

Thank you for pondering this with me. I will never forgive myself for this licorice root thing, as I'm convinced it either caused my problem or at least exacerbated it. I keep researching it and I keep finding that it does somehow raise cortisol indirectly and I took it for such a long period of time. I wish I would read otherwise so I could at least get the blame off my back. And I will take your view on it to heart. This disease is ruining my life either way, but it would be much more difficult to digest if I did it to myself. Today's visit to the new endo at St. Josephs in Saint Paul was very concerned about my first 24 hour corisol reading, which I mistakenly told you before was 145, it was actually 164. My second 24 urine is not back yet, nor the salivary tests. She had me do a ct scan of my adrenal glands today, I don't know the results yet. She said she will seek advice from the head of endo at Mayo, I guess this is my new life now, which looks and feels nothing like my old one. I'm embarrassed in front of my family and friends because I look so unhealthy and abnormal. I was once healthy and attractive, now what? I know I'm going to go through alot of feelings of loss, etc. I wish I could find a local support group in my city, but I suppose because this is so rare, there are none.

Thank you for listening Could I share with you my test results and the doctors recommendations with you as I receive them?
Your attention has been valuable to me.
I wonder of your situation? Do you have cushings, If so, How do you cope with it?
Regards,
sandrina

The Mayo endo's are OK. They're not cushing's experts but they have good exposure to it since it's such a good center and because they do see a fair amount of rare diseases.

The Adrenal CT is a good one to do since it's easy and quick and adrenal problems that are causing cushing's usually show up on it.

I had severe cushing's and began noticing my symptoms around December 2011. I quickly got much worse and my only 24 hour UFC was 1440. I didn't gain much weight but the weight I had on my body was redistributed so that I had a big gut and no leg or arm strength. My feet, ankles, and hands swelled up and my blood pressure was usually around 170/105 despite heavy medication. I couldn't sleep and got huge stretch marks on my belly and joints and I got a fungal infection in my mouth that wouldn't go away. I was diagnosed because I had very low potassium levels that were not helped by eating more potassium and so my doctor had me admitted to the hospital where they diagnosed me. It was just a regular hospital without any cushing's specialty but my case was so obvious that their endos were able to figure it out. However, they had no ability to treat me there so that's why I went to see my current endo who, since my MRI and Adrenal CT was clear, ordered an IPSS (he developed the IPSS procedure) which indicated a pituitary tumor. I had my surgery in Virginia in May. The surgery was successful and my cortisol levels went back to normal, but I had a pulmonary embolism during the surgery and I was in the hospital for 10 days while by body recovered for that and had to take blood thinners for a few months afterwards. Since then my body has largely returned to normal. I'm a little weaker than I was before and I still have the stretch marks (although they're now over loose skin). But I feel pretty normal. However, my endo is testing me for a possible recurrence. If the recurrence seems to get worse then we'll try one of the new medications that have just come on the market within the past year and if that doesn't work I'll have my adrenal glands removed.

There's no need to be embarassed. Cushing's does all kinds of weird things to your body and you can't blame yourself for doing things that may have made it worse when you didn't even know you had it. You'll get your life back. It just takes patience.

Hello BDent13
Thank you for sharing your story, it's very meaningful to me. Are you very worried about your possible recurrence? When will you know more about it?
I have the rest of my test results back:
Second 24 hour free cortisol unrine: 41
2 midnight salivary test were normal( she didn't give me any values)
Ct scan normal
My endo says with these results she cannot not diagnose Cushings.
However she is going to follow up with another dex suppression test once I've been off Birth Control Pills for 14 days. as the original
was perhaps not accurate due to estrogen.
How do I explain all these cushings-like sypmtoms? Back to the licorice root... Perhaps it is out of my system now and the damage it done, and now my cortisol levels have returned to normal.
I would appreciate any thoughts or suggestions you may have on this.
Warmly,
Sandra

I'm not too worried about the recurrence because we know what to look for now and I'm testing every couple months. My endo has also offered a lot of different treatment options so I know it will never get as bad as it was last time.

Compared to when you stopped taking the licorice root - do you feel worse or better? How is your blood pressure? Do you sleep OK? Do you feel any different? It's not uncommon for people with cushing's to have some abnormal tests and a 41 is still at the upper end of normal and under some guidelines, elevated. Maybe you wait a month and if you don't start noticing positive changes, see a cushing's specialist.

The dex suppression test isn't a very useful test for diagnosing cushing's (except for adrenal cushing's).

Hello,
I agree that the 41 for the urine cortisol is In the upper/normal range. I should have brought that to her attention, but she was pretty adament that I do not present cushings. As far as how I feel, its hard for me to interpret myself anymore, I'm so stressed about this situation, how my appearance has changed, and the stress I feel when I go out in public I basically feel depressed, more like devestated. I do notice that the last two nights are the first times I slept at least 4-5 hours, albeit, still restless. I'm trying desparately to calm down. My Inslulin level about 6 wks ago (taken by my old endo was a whopping 168, which I have always kept incontrol with Metformin (for pcos) so this was surprising to me as I exercises regualarly and eat very carefully. My AC1 and glucose levels were excellent anyway. Makes me wonder if thel licorice root was the cause of high insulin as well?? Back to that again, you may be learning that I can't let this go!! Anyway, as far as how I feel, the only difference I've noticed is the 2 nights of better sleep.
My blood pressure is normal to low. Maybe due to spironolactone. You see my case is confusing and complicatated with being a pcoser, and being on meds for that. My new endo is a bit fed up with me because I want to discuss all these factors and she simply says, there is no case for Cushings with these test results.
I'm glad to hear that you don't worry to much. It sounds so reassuring to have a specialist that knows your situation and can monitor it for you. Is that the name you gave me? I looked him up and he is not in my insurance plan, still I'm thinking about it.
I will not see my new endo for about 3 weeks, she wants me to do that dex thing again, I want to be ready with new questions for her. If I dont have cushings,,fantastic! But what than is causing these physical changes and symptoms, and what else should we check, If I mention the licorice root to her again, I'm certain she will drop me as a patient but I'm convinced that accounts for the muscle loss and maybe high insulim, I admit my thinking maybe on one track, yet something has happened. You don't just go from a muscular size 6/8 pants to a less than 4 for no reason. I have actully lost 20 pounds and it muscle and maybe bone ( my hip bones seemed to be gone)
I'm sorry for such a long winded convo. I cannot thank you enough for your advice and open ears. I'll know I'm getting better when I can listen to van morrison or Steeely Dan or something fun and work out again.
Thank you again,
Regards,

Sandrina

Cushing's can cause poorly controlled diabetes (in fact it caused me to be pre-diabetic even though I was only moderately overweight and had no history of diabetes).

If you're on spirinolactone that is often an effective treatment of the high blood pressure that is caused by cushing's (which is different from normal high blood pressure).

I think you have cushing's as it explains everything you've described and you had a very high 24 hour urinary free cortisol result - but I don't think it was caused by licorice root.

Yes, the name I gave you is who I see. If you can't see a specialist, I'd recommend asking for more 24 hour urinary free cortisol tests. If your next test is lower, then maybe it was caused by the licorice root, give it a few months, and see if you feel better. If it's higher, then I think it's almost definite that you have cushing's caused by a tumor. If it's roughly the same, then you possibly have mild or cyclical cushing's that was made worse by the licorice root.

Hello.
I like to pop in here from time to time as I have a close friend with Cushing's.
I couldn't help but notice your post and I really want to help, but I just don't know how much help I will actually be.
I found a site online about the side effects of licorice root called The side effects of licorice root on ehow.com.
I'm not too good at computers and putting in inserts, BUT I do know quite a bit about hormones. Especially pituitary hormones as I just had a pituitary tumor taken out in January. It was a prolactinoma.
Have you had any of your other pituitary hormones checked? I'm sure you probably had your "female" hormones checked as you were diagnosed with PCOS?
I know that pituitary hormones when they are out of whack they can raise all sorts of hell with one's body. When they did the MRI did they use contrast? If they didn't it was pointless. I've had an MRI without contrast and of course they couldn't see my tumor, but voila when they used contrast, I had a 4mm tumor. My gynecologist even said that a prolactinoma can actually make it look like you have PCOS. I'm not a doctor and I'm not saying that is what you have, but from personal experience, and four years of suffering, if you suspect you have a hormone problem of some sort, have your doctors or endo run a full pituitary panel, except for the cortisol because it seems like they got a pretty good handle on that.
I noticed from the article that licorice root can convert testosterone to estrogen and you are also taking birth control pills?
Deep down I kinda think that birth control pills caused all my problems because I took them for almost twelve years.....
ANYWAYS.......If this may help at all. All of your anterior pituitary hormones are:
ACTH-Adrenocorticotropic Hormone
GH-Growth Hormone
PRL-Prolactin
TSH-Thyroid Stimulating Hormone
LH-Luteinizing Hormone
FSH-Follicular Stimulating Hormone
All posterior pituitary hormones:
Vasopressin
Oxytocin
Tumors on the posterior pituitary are pretty rare.
I think that you should probably have all the anterior hormones checked as well just to rule out other hormone problems because the pituitary is the 'master' gland and if there is something wrong it will probably show up with the pituitary gland. I hope this wasn't completely useless LOL.....

Hello,
Thank you for your responses. I am in wait mode to see if I start to feel better with time. I'm not sure what to do next, as my endo states that I do not have cushings based on my test results. I hope that I begin to improve. I have been sleeping a little better and I don't seem to be sweating a lot like I was.
Thank you again,
sandrina