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Old 07-23-2012, 05:56 PM   #1
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natalyjac HB User
Cushings? Pseudo Cushings? Please help

Hello everyone,
I had a ton of blood work done recently, mostly due to Lyme disease. As part of the testing, my ACTH was tested, along with my cortisol (salivary, taken over several days/times).

When I went in to discuss my results, my doctor didn't care much about the positive Lyme (is being treated), but more about the high ACTH and Cortisol. He said I could have a pituitary tumor, blah blah, but then remarked I did not look like a Cushing's patient.

I have zero Cushing's physical symptoms. No weight gain (feel better physically then ever), no facial issues, etc. However, I have been suffering from pretty severe anxiety on and off for 2 years (my dad died), with the last 6 months being pure hell. (Could this be pseudo Cushings?)

My salivary cortisol test showed high for every time frame, but always less than 2 times normal. It did follow the diurnal pattern where it peaked at 8:00 am and was next to nothing at midnight.

I am thinking of sending myself to an endo. The doctor suggested retesting my ACTH and my cortisol, but just with a single blood test. Not sure what that will do.

Thought anyone? Please??

Thanks in advance.

 
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Old 07-23-2012, 06:56 PM   #2
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Re: Cushings? Pseudo Cushings? Please help

Your Dr is right that this could represent a pituitary tumor, called an adenoma, that is benign and secreting excess ACTH. I would ask for a pituitary blood panel which tests all the pituitary hormones, to see if anything else is "off". If this just started recently, you might not have Cushing's symptoms. Then, with those results, you could see an endo, get an MRI to see pituitary gland, and know for sure.

 
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Old 08-07-2012, 04:22 PM   #3
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Re: Cushings? Pseudo Cushings? Please help

If you have a doctor who starts out a sentence with 'You don't look like....
it's best to find another.

Cancer patients don't all look like they have cancer.
Cushings patients don't all look like they have Cushings.
I've also had doctors say to me, "you don't look like you could have acromegaly because you're not tall enough." (How absurd!)
I've had them say, "you can't have growth hormone because you have a prolactinoma.
I've had them say, "large pituitary tumours have no connection whatsoever with cancers and other deadly diseases."
I've heard them say, anti-psychotic drugs won't make your tumour grow.
I've had dentists say, "pituitary tumours cannot make your teeth grow further apart.

They fed me dozens of lines like that. There are many uninformed practitioners and a lot of it isn't even their fault. Most doctors aren't taught in medical schools about the two upcoming and most deadly and highly spreading diseases in North America -- Lyme disease and pituitary tumours. Corporations who sell pills for these diseases don't make enough money to fund the university training in those topics and insurance plans don't want to treat all of these patients because it would cost a fortune. These two diseases (both, can be more deadly than cancers, heart disease, and diabetes because they can cause all three and even worse!).

Sometimes you yourself will be tempted to say to your doctor, "well you don't look like the type who could be so misinformed, either" but unfortunately you'll have to bite your tongue on that one.

Get yourself a better doctor (preferably not a junior) and yes, do see an endocrinologist. Don't listen when they tell you not to read bunk on web sites. They're insinuating you're too stupid to distinguish a Dick & Jane site or a "Sally said" site from a valid endocrinologist web site.

I've never yet met a specialist who didn't think he was brighter than all others. Nearly all disagree even with even their own kind, so visit the web sites you are quite sure are very reliable, and stick with what you can learn versus what you're told, especially if what you're told sounds unbelievable and what you've read makes sense.

Almost all doctors come out of medical practice wanting to deliver babies and treat diabetes. Very few are interested in doing more, so as the population ages, these doctors will find employment harder in the future. If you can. find a GP who is "interested" in endocrinology. On some sites, you can search doctors' interests. The doctors who list them are smart.

If you can't find one interested in endocrinology, at least find one interested in infectious diseases. (You may already have found a good one by the looks of it).

You have two deadly diseases -- two diseases that should also keep doctors scratching their heads with in confusion because of their ability to cause and/or imitate so many others. Either one can kill you by giving you many other horrid, deadly diseases, so neither is something to ignore.

At the very least, ask your doctor to test your prolactin the next time he sends you for tests because that can be really dangerous if it's high, especially if you should get breast cancer. Also, if you must sleep a lot, try to do so outside in a shaded area (if that's feasible) because you will need to be exposed to a fair bit of non-direct sun.

Most of all, always ask for copies of the lab results, even if you have to buy them at the next appointment, because many times doctors are in such a hurry that if you aren't monitoring your scores about certain types of tests and you can be easily missed. Don't hassle your doctor about the meaning of every test or he will surely become angry. Just look it up the tests on the Internet and discuss only ABNORMAL results. Keep a file on yourself so you can watch the progress or deterioration as time goes on and alert your doctor.



Quote:
Originally Posted by natalyjac View Post
Hello everyone,
I had a ton of blood work done recently, mostly due to Lyme disease. As part of the testing, my ACTH was tested, along with my cortisol (salivary, taken over several days/times).

When I went in to discuss my results, my doctor didn't care much about the positive Lyme (is being treated), but more about the high ACTH and Cortisol. He said I could have a pituitary tumor, blah blah, but then remarked I did not look like a Cushing's patient.

I have zero Cushing's physical symptoms. No weight gain (feel better physically then ever), no facial issues, etc. However, I have been suffering from pretty severe anxiety on and off for 2 years (my dad died), with the last 6 months being pure hell. (Could this be pseudo Cushings?)

My salivary cortisol test showed high for every time frame, but always less than 2 times normal. It did follow the diurnal pattern where it peaked at 8:00 am and was next to nothing at midnight.

I am thinking of sending myself to an endo. The doctor suggested retesting my ACTH and my cortisol, but just with a single blood test. Not sure what that will do.

Thought anyone? Please??

Thanks in advance.

 
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Old 08-08-2012, 09:16 AM   #4
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Re: Cushings? Pseudo Cushings? Please help

Hello! I am the original poster, something happened to my previous ID so I had to create a new one.

I did have the cortisol retested and it was normal (am test).

I did see an endocrinologist and he tested thyroid again, prolactin, estrogen, etc. Those were all normal.

He examined me and said I had no physical signs of Cushing's, but would test anyway. He then ordered a 24 hour UFC test and a dexamethosome suppression test. My cortisol was normal (24, range 3 - 46) and my suppression test was normal (1.7). At this point he does not feel I have Cushing's and does not feel I need further testing.

I really do appreciate the responses.

 
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Old 08-11-2012, 11:38 AM   #5
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Re: Cushings? Pseudo Cushings? Please help

Congratulations! Always better to be safe, than sorry. Extra tests don't generally hurt.


Quote:
Originally Posted by dontwanttobesad View Post
Hello! I am the original poster, something happened to my previous ID so I had to create a new one.

I did have the cortisol retested and it was normal (am test).

I did see an endocrinologist and he tested thyroid again, prolactin, estrogen, etc. Those were all normal.

He examined me and said I had no physical signs of Cushing's, but would test anyway. He then ordered a 24 hour UFC test and a dexamethosome suppression test. My cortisol was normal (24, range 3 - 46) and my suppression test was normal (1.7). At this point he does not feel I have Cushing's and does not feel I need further testing.

I really do appreciate the responses.

 
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Old 11-07-2012, 07:20 PM   #6
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Join Date: Jan 2011
Location: Calgary, AB
Posts: 65
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Re: Cushings? Pseudo Cushings? Please help

I'm not a doctor and it sounds as though yours is amazingly efficient. He's doing what an "endocrinologist" would do in Canada. The only thing I'm wondering is if he tested your cortisol level as late in the day as possible, because it could be different then.

Anxiety can be severe in many people once they hit age of 55 or so, especially when combined with other factors, & you certainly have enough on your plate. That in turn can drive up cortisol levels. Worse yet, if you take anti-anxiety pills, some cause tumours to grow rapidly so you might be better off just learning to meditate or just make quiet peaceful time for yourself each night with your favourite soft music. Anxiety can be caused by Lyme or other diseases too because when all is not well with the body, the mind is constantly nervous.

Do you have high cravings for salt? I would prefer it if doctor's never said "You don't look like a Cushings patient or like an acromegaly" and the like, because this causes many to miss diseases that are in fact there. More often than not, people don't fit into the falsely expected mold. Oh, and I forgot, some drugs cause ACTH to rise as well, so if you're taking any, Google ACTH along with the names of those drugs. A heavy veggie diet with low sugars and carbs might help too.

Sorry to hear about your Dad. Do you believe the soul is a material thing that can be destroyed? I don't think so. As for your other problems, it might help to find a therapist because sometimes when people are pressure they may not want to discuss some things even with close friends. Good luck again.

Quote:
Originally Posted by natalyjac View Post
Hello everyone,
I had a ton of blood work done recently, mostly due to Lyme disease. As part of the testing, my ACTH was tested, along with my cortisol (salivary, taken over several days/times).

When I went in to discuss my results, my doctor didn't care much about the positive Lyme (is being treated), but more about the high ACTH and Cortisol. He said I could have a pituitary tumor, blah blah, but then remarked I did not look like a Cushing's patient.

I have zero Cushing's physical symptoms. No weight gain (feel better physically then ever), no facial issues, etc. However, I have been suffering from pretty severe anxiety on and off for 2 years (my dad died), with the last 6 months being pure hell. (Could this be pseudo Cushings?)

My salivary cortisol test showed high for every time frame, but always less than 2 times normal. It did follow the diurnal pattern where it peaked at 8:00 am and was next to nothing at midnight.

I am thinking of sending myself to an endo. The doctor suggested retesting my ACTH and my cortisol, but just with a single blood test. Not sure what that will do.

Thought anyone? Please??

Thanks in advance.

 
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