Hi. I don't have much to say except that I am heading back to San Antonio on Thursday for follow-up appointments with my endocrinologist and neurosurgeon. It is hard to believe it has been six weeks since my pituitary surgery.
I'll post soon.
~Melissa
P.S. My system of creating a new email is not working so good. We can't get the account to load onto my iPhone. I already have 4 accounts pulling in to the device. Is there a limit? Why won't it let me keep track of my fellow Cushies?! I'm sorry I haven't replied to your messages yet. Elena has been exceptionallly clinging for a while.
“Genetics and runaway appetite are not the only causes of obesity. Sometimes, your own body can turn against you in ways you never thought possible.” ~The Science of Obesity
Wednesday, July 22, 2009
Friday, July 17, 2009
TESTING PHOTO UPLOADS FROM MY PHONE
05/10/2009: Elena on our first Mothers Day together. I know that if I didn't have Cushing's, I wouldn't have Elena. She is the most incredible thing I have done in my life.
Cushing's, I have to come to terms and accept you! Life sure takes you on a windy road!
06/11/2009: My last few moments at the hotel with my sweet Elena before we head to the hospital for my pituitary brain surgery.[Not in photo: me taking Elena around the corner and crying in fear of leaving her and never coming back].
Cushing's, I have to come to terms and accept you! Life sure takes you on a windy road!
06/11/2009: My last few moments at the hotel with my sweet Elena before we head to the hospital for my pituitary brain surgery.[Not in photo: me taking Elena around the corner and crying in fear of leaving her and never coming back].
I'M FAT, I'M FAT, I KNOW IT: Outreach to the Weight Loss Community
**
As many of you know, it is my hope that we can inform the populace about Cushing's disease and hopefully improve the quality of lives of many patients.
In that effort, I wanted to share with you a quick post I left for the owner of a weight loss message board/website. I posted it under the "suggestions to the webmaster" forum.
Today's group: carb counters. Gastric bypass and lap band patients, I am coming after you next!
~Moxie Melissa
As many of you know, it is my hope that we can inform the populace about Cushing's disease and hopefully improve the quality of lives of many patients.
In that effort, I wanted to share with you a quick post I left for the owner of a weight loss message board/website. I posted it under the "suggestions to the webmaster" forum.
Today's group: carb counters. Gastric bypass and lap band patients, I am coming after you next!
~Moxie Melissa
Hello... Webmaster. I did an internet search and found this site. Thank you for all your hard work.
After many years of following a low carb diet, I have now had pituitary brain surgery to remove a benign tumor that was causing Cushing's disease. It is the cause of my uncontrolled weight gain of 75 pounds in 4 years as well as a myriad of terrible symptoms.
This quote from my blog sums it up best:
"Genetics and runaway appetite are not the only causes of obesity. Sometimes, your own body can turn against you in ways you never thought possible.” ~The Science of Obesity (see video link on ). This is my personal blog, and I hope to help people understand this disease and get themselves diagnosed quicker and on the road to health and happiness sooner.
Anyway, I have visited your site a few times, and I always see someone posting about the possibility of Cushing's. As the webmaster, you are in the unique position to inform people who have this disease but may not have ever heard of it... until they see a group listed under Health Groups called Cushing's on your site. One click may open their eyes to the disease that my endocrinologist said was the most difficult diagnosis to make in all of medicine.
Would you please consider it? Through my blog, people thank me for taking the time to write about my experiences. They say they would not be on the right track to diagnosis if it hadn't been for me. Some say I have saved their lives. If you create a group on your site, you could be doing the same for people.
I hope that you are willing to help. If I can help you in any way, please contact me. If you do decide to help, please drop me a quick line and let me know. I may start posting over here, too!
Thursday, July 16, 2009
ORGANIZATION MOXIE: Where the Rubber Meets the Road
Hi everyone.
The wean is slow but going okay. I am 5 weeks post op today. My dose of hydrocortisone is 15 mg @ 8 am and 5 mg @ 3 pm. I see my neurosurgeon and endocrinologist for a follow up next Thursday. I have been keeping track of my doses and symptoms in a spreadsheet. When I get time, I will post it here, in case it will be helpful for anyone to see how my doctors and I handled it. If it never appears, feel free to remind me!
Also, I wanted to let you all know that I have been getting myself organized lately. Nothing like finally getting papers filed after over a year! (not that I had a good excuse or anything...). I am trying to get my home office paperwork filed electronically, and it is a huge but worthwhile undertaking. I am not finished yet, and I have been working on it for a week. Wish me luck!
So, along with this new found need to organize finally, I want to be better about answering questions that you readers may have. I wanted to let you know that I am now in a better position to answer any emails that you send me. Before, I was completely overwhelmed with Cushing's and my sweet baby. Now after surgery, I feel I have things under control, well, more than I did. I have an iPhone (greatest invention ever--it's a computer in the palm of your hand!), and this allows me to check email every few days without getting on my laptop. With a baby in my arms most of the day, this is a wonderful addition to my toolbox.
As always, if you want to post a comment, feel free to do so. I welcome and encourage that. Please be forewarned that I like to publish your stories to show others how this disease sneaks up on us.
If you have a specific question, please ask it in the comments section, include your email address, and I will be sure to reply to you via email. If it is ok, I would like to post all incoming emails to my blog in the comments section, and if you include your email address, I will just cut and paste your message and post it under comments myself. That way, I will not post your email address publically.
For direct access, my email address is moxiemelissa then at symbol gmail.com (I am trying to avoid spam by not posting the email addy here).
Anyway, I better scoot. Take care. I hope everyone is doing ok.
~Moxie Melissa
The wean is slow but going okay. I am 5 weeks post op today. My dose of hydrocortisone is 15 mg @ 8 am and 5 mg @ 3 pm. I see my neurosurgeon and endocrinologist for a follow up next Thursday. I have been keeping track of my doses and symptoms in a spreadsheet. When I get time, I will post it here, in case it will be helpful for anyone to see how my doctors and I handled it. If it never appears, feel free to remind me!
Also, I wanted to let you all know that I have been getting myself organized lately. Nothing like finally getting papers filed after over a year! (not that I had a good excuse or anything...). I am trying to get my home office paperwork filed electronically, and it is a huge but worthwhile undertaking. I am not finished yet, and I have been working on it for a week. Wish me luck!
So, along with this new found need to organize finally, I want to be better about answering questions that you readers may have. I wanted to let you know that I am now in a better position to answer any emails that you send me. Before, I was completely overwhelmed with Cushing's and my sweet baby. Now after surgery, I feel I have things under control, well, more than I did. I have an iPhone (greatest invention ever--it's a computer in the palm of your hand!), and this allows me to check email every few days without getting on my laptop. With a baby in my arms most of the day, this is a wonderful addition to my toolbox.
As always, if you want to post a comment, feel free to do so. I welcome and encourage that. Please be forewarned that I like to publish your stories to show others how this disease sneaks up on us.
If you have a specific question, please ask it in the comments section, include your email address, and I will be sure to reply to you via email. If it is ok, I would like to post all incoming emails to my blog in the comments section, and if you include your email address, I will just cut and paste your message and post it under comments myself. That way, I will not post your email address publically.
For direct access, my email address is moxiemelissa then at symbol gmail.com (I am trying to avoid spam by not posting the email addy here).
Anyway, I better scoot. Take care. I hope everyone is doing ok.
~Moxie Melissa
Friday, July 10, 2009
WHITE ON RICE: Get Your Test Results from your Doctors
Are you one of the people who still believe your doctor is always looking out for you? Naaah... really? They try, but the docs and their staff are overwhelmed. I've been in a lot of waiting rooms in the past two years. I bet it is safe to say that in the course of an 8-hour day, doctors see at least 2 patients an hour, or at least 16 patients a day x 5 days. That's 80 people just like you, trying to get help or get treatment. That's a lot of lab work, insurance filing, appointment calls, and processing to keep up. It all repeats the next Monday, too, and the Monday after that, and the Monday after that.
I wanted to share this link about a study posted in USA Today that found many patients do not get a call from the doctor regarding abnormal test results. These results get stuck on someone's desk or filed away in a patient's chart.
If you do not ask for your test results, this could be you.
If you do not take an active role in your healthcare, this could be you.
What can you do?
I always ask the doctor how long it will take to receive the test results.
I then ask the lab tech that draws my blood how long it will take to process the labs.
If they say 4 days, I set a reminder in my iPhone calendar to call on day 5. I ask the staffer to fax me a copy, or I tell them I will be by to pick it up at a specific time and day.
If they say 2 weeks, I set a reminder in my calendar and call on day 15. I ask the staffer to fax me a copy, or I tell them I will be by to pick it up at a specific time and day.
ALWAYS. As I have said numerous times on this blog, if you do not care about your own health, why would anyone else?
~Moxie Melissa
I wanted to share this link about a study posted in USA Today that found many patients do not get a call from the doctor regarding abnormal test results. These results get stuck on someone's desk or filed away in a patient's chart.
If you do not ask for your test results, this could be you.
If you do not take an active role in your healthcare, this could be you.
What can you do?
I always ask the doctor how long it will take to receive the test results.
I then ask the lab tech that draws my blood how long it will take to process the labs.
If they say 4 days, I set a reminder in my iPhone calendar to call on day 5. I ask the staffer to fax me a copy, or I tell them I will be by to pick it up at a specific time and day.
If they say 2 weeks, I set a reminder in my calendar and call on day 15. I ask the staffer to fax me a copy, or I tell them I will be by to pick it up at a specific time and day.
ALWAYS. As I have said numerous times on this blog, if you do not care about your own health, why would anyone else?
~Moxie Melissa
NAPS: The Search for the Ultimate Afternoon Delight
I started napping for the first time since my pituitary surgery four weeks ago. It started this past Tuesday, when I dropped my dose of hydrocortisone from 25/10 to 20/10. With my sweet Elena at my mom's house, I stayed in bed all morning, thanks to meals and meds from my work-at-home-today-because-he's-working-Saturday-night hubbie.
I love a good nap. I hope you get a good one, too.
~MM
Thanks to the MaryO and her Cushing's & Cancer blog for sharing this entry originally posted on the MS Brass and Ivory blog. This made me smile.
I love a good nap. I hope you get a good one, too.
~MM
Thanks to the MaryO and her Cushing's & Cancer blog for sharing this entry originally posted on the MS Brass and Ivory blog. This made me smile.
The steroid taper finished up this past Sunday, but instead of finding some new energy, I've been caught in a fog of fatigue. Without too much choice in the matter, I've drifted off to the land of comatose and nod for hours during the past three days. As I know many of you have been in the same place far more often than either of us would like, I thought you might enjoy the following poem taken from Falling Up by Shel Silverstein, a well-loved book which sits in the waiting room of my music studio.
The Nap Taker
No--I did not take a nap--
The nap--took--me
Off the bed and out the window
Far beyond the sea,
To a land where sleepy heads
Read only comic books
And lock their naps in iron safes
So that they can't get took.
And soon as I came to that land,
I also came to grief.
The people pointed at me, shouting,
"Where's the nap, you thief?"
They took me to the courthouse.
The judge put on his cap.
He said, "My child, you are on trial
For taking someone's nap.
"Yes, all you selfish children,
You think just of yourselves
And don't care if the nap you take
Belongs to someone else.
It happens that the nap you took
Without a thought or care
Belongs to Bonnie Bowlingbrook,
Who's sitting' cryin' there.
"She hasn't slept in quite some time--
Just see her eyelids flap.
She's tired and drowsy--cranky too,
'Cause guess who took her nap?"
The jury cried, "You're guilty, yes,
You're guilty as can be,
But just return the nap you took
And we might set you free."
"I did not take that nap," I cried.
"I give my solemn vow,
And if I took it by mistake
I do not have it now."
"Oh fiddle-fudge," cried out the judge,
"Your record looks quite sour.
Last night I see you stole a kiss,
Last week you took a shower,
"You beat your eggs, you've whipped your cream,
At work you punched the clock,
You've even killed an hour or two,
We've heard you darn your socks,
We know you shot a basketball,
You've stolen second base,
And we can see you're guilty
From the sleep that's on your face.
Go lie down on your blanket now
And cry your guilty tears.
I sentence you to one long nap
For ninety million years.
And when the other children see
This nap that never ends,
No child will ever dare to take
Somebody's nap again.
WISE WORDS WORTH (W)REPEATING
I found this in a stack of papers. I can't find who wrote this? Was it Linda or Kate or MaryO? If you know, please tell me. I want to give the kind soul credit for this piece of advice.
Yes, this applies to me. I never had a high UFC or abnormal dex test.
6. You do not to test positive on every single test, or test positive on every type of test, to have Cushing's. There is susbstantial variation in how we present with this disease, and in which tests will identify the excess cortisol in our bodies. DO NOT LET A SINGLE NEGATIVE RESULT ON ANY ONE TEST, OR A NEGATIVE RESULT ON A PARTICULAR TYPE OF TEST, PREVENT YOU FROM AGGRESSIVELY PURSUING A CUSHING'S DIAGNOSIS IF THERE IS STRONG SUSPICION. For example, for an individual to have proven Cushing's without ever having a positive on a ufc or dexamethasone suppression test.
Yes, this applies to me. I never had a high UFC or abnormal dex test.
Monday, July 6, 2009
HEAR YE, HEAR YE: Patients Talk about Life with Cushing's
*
You can read about Cushing's. This blog and many other websites offer the text version of this devastating disease.
Hearing people who have Cushing's describe their path to diagnosis and treatment is quite emotional, as it fills in the gaps between the written word. I am amazed at how people stumble onto diagnosis after years and years of being ignored by their doctors. Many Cushies visit five to ten doctors before they even see an endocrinologist, then many go to see several "endiots"--our affectionate term for endocrinologists who don't quite understand the way Cushing's presents in today's patients--before they receive the help they deserve.
Take a listen to real Cushing's patients who describe their onset of symptoms and how they fought to get the diagnosis. For anyone fighting this disease, it is truly heartbreaking to listen to how people have struggled and triumphed over this disease. I have yet to listen to one that did not bring tears to my eyes.
To all my fellow Cushing's patients out there who have fought this disease with such determination, courage, and moxie: I salute you. I dedicate all of these efforts to you, to us.
Go to the Cushing's Help and Support website to choose the podcast format of Cushie Chats: BlogTalkRadio or iTunes.
Go directly to Cushing's on BlogTalkRadio.
*
You can read about Cushing's. This blog and many other websites offer the text version of this devastating disease.
Hearing people who have Cushing's describe their path to diagnosis and treatment is quite emotional, as it fills in the gaps between the written word. I am amazed at how people stumble onto diagnosis after years and years of being ignored by their doctors. Many Cushies visit five to ten doctors before they even see an endocrinologist, then many go to see several "endiots"--our affectionate term for endocrinologists who don't quite understand the way Cushing's presents in today's patients--before they receive the help they deserve.
Take a listen to real Cushing's patients who describe their onset of symptoms and how they fought to get the diagnosis. For anyone fighting this disease, it is truly heartbreaking to listen to how people have struggled and triumphed over this disease. I have yet to listen to one that did not bring tears to my eyes.
To all my fellow Cushing's patients out there who have fought this disease with such determination, courage, and moxie: I salute you. I dedicate all of these efforts to you, to us.
Go to the Cushing's Help and Support website to choose the podcast format of Cushie Chats: BlogTalkRadio or iTunes.
Go directly to Cushing's on BlogTalkRadio.
*
DEATH BY CUSHING'S: Accidental death verdict on 40-year-old mum
*
It is with a heavy heart that I share this story today about an unnecessary death, due to Cushing's. I send my most sincere condolences to the Richardson family and all those affected by Marie's passing.
This just shows that often MRIs miss teeny tiny tumors. Doctors were unsure if I had a pituitary tumor, although they agreed there was a suspicious area. During surgery, my neurosurgeon easily spotted the camera-shy tumor, which measured 3 millimeters or 0.12 of an inch. That's really small to wreak such havoc on the body. Dastardly little tumor!
If you think you have to waste, you are wrong.
If you don't fight to get yourself diagnosed and treated, then who will?
If not you, then who? If not now, then when?
~Cushie Melissa
*
It is with a heavy heart that I share this story today about an unnecessary death, due to Cushing's. I send my most sincere condolences to the Richardson family and all those affected by Marie's passing.
This just shows that often MRIs miss teeny tiny tumors. Doctors were unsure if I had a pituitary tumor, although they agreed there was a suspicious area. During surgery, my neurosurgeon easily spotted the camera-shy tumor, which measured 3 millimeters or 0.12 of an inch. That's really small to wreak such havoc on the body. Dastardly little tumor!
If you think you have to waste, you are wrong.
If you don't fight to get yourself diagnosed and treated, then who will?
If not you, then who? If not now, then when?
~Cushie Melissa
*
Accidental death verdict on 40-year-old mum
Published Date: 03 July 2009
By Garth ApThomas
A CORONER has recorded a verdict of accidental death at the inquest held into the death of a 40-year-old Wrexham mother.
Marie Richardson, of Bryn Hafod, died in March at the Maelor Hospital.
A post mortem examination found that she had died as a result of a haemorrhage involving the pituitary gland, which plays a key role in the body's hormonal system.
The inquest was told a post mortem examination had been conducted by Dr Anthony Burdge.
Giving evidence, Dr Burdge said that it was probable the bleeding had been caused as a result of thinning of the blood and not a trauma such as a fall.
Contributory factors in Mrs Richardson's death had been Cushing's disease, a very rare condition involving a hormone disorder, and bronchial pneumonia.
The court was told by Mrs Richardson's husband, Andrew, that his wife had started to experience ill health, including swollen legs and constant backache.
Her mobility was badly affected. Mrs Richardson was admitted to the Maelor Hospital.
Consultant physician Dr Stephen Stanaway said that as part of the treatment, Mrs Richardson received a small dose of a blood-thinning drug to help ensure she did not fall victim to clots.
She had been given a scan involving the pituitary and there was no evidence of a tumor.
It transpired the post-mortem had found Mrs Richardson did have a tumor, which had experienced bleeding.
Dr Stanaway said that Mrs Richardson had not liked the scanning process and moved at one point – it was important for patients to remain still.
Acting coroner John Gittins asked if Mrs Richardson would have been administered with blood thinner if the tumour had been known about at the time of treatment.
Dr Stanaway said it would have to be a balanced decision but he felt that she would have been.
Legal representatives for Mrs Richardson's family and the NHS Trust were present at the inquest. Dr Stanaway was asked a series of questions about whether anything further could have been done about Mrs Richardson's treatment while at the Maelor.
He said that with hindsight the only potential other avenue may have been if she had been given steroids.
But Dr Stanaway stressed he doubted this would have been successful, emphasizing Mrs Richardson was a very poorly woman and it would be impossible to say that administering steroids would have saved her.
Recording his verdict of accidental death Mr Gittins emphasized: "This is not an indication of responsibility, blame or judgment.
"That is not my jurisdiction.
My very sincere condolences go to the family."
Page 1 of 1
* Last Updated: 03 July 2009 8:35 AM
* Location: Wrexham
Saturday, July 4, 2009
DEPRESSED: Withdrawal from steroid cortisol replacement
My body is not making any cortisol on its own. Cushing's disease made my hypothalamus-pituitary-adrenal axis off kilter. Now, I am taking steroid hormone replacement in pill form--hydrocortisone--to restore the proper amount of cortisol my body stopped making once the benign pituitary ACTH-secreting tumor was removed.
I have been feeling all of the expected symptoms that are related to dropping my dose of hydrocortisone weekly.
* severe fatigue
* dizziness
* nausea
* headache
* joint aches
* back aches
* depression
Lying down and closing my eyes gets me through the first three. Darvocet, my pain killer friend, gets me through the aching pain. The last one bothers me more than the others. Even taking 200 mg of Sertaline/Zoloft, an antidepressant, doesn't help me combat the depression brought on by low cortisone. Even a friend said she couldn't cry at all on 100 mg--it helped her that much. I'm on double and it's like I'm not on anything.
This got me thinking of the mind bender that is as debatable as the Chicken v. Egg case.
I am wondering if the same is true about me and my recovery.
It is day 24 after pituitary brain surgery.
Yes, they went through a natural orifice to access the part that hangs from the brain. The docs didn't do a craniotomy. They did not shave my head, and I did not lose my hair. For that, I'm thankful. However, they did get pretty darn close to my brain... like a centimeter or so. They gave it a little tickle. I've never liked being tickled.
So, I must ask:
~ Cushie Melissa
P.S. I admit a large degree of self-pity in this post. I feel needy and disappointed and unaccomplished and helpless. I am really even reluctant to post this now, and you may come back later and this post will be gone. If I can publically confess and own my uncomfortable feelings of being a weak, sick patient, then this post will remain here for others to read.
I post my true feelings because that is what I promised myself I would do. Strong or weak. Good or bad. Happy or sad.
I want to show those fighting with Cushing's that coping with this "rare" disease is difficult. People do not understand. It is not just you, your family, your friends. It happens to all of us. I understand.
So let's know that this is the case.
Let's keep moving ourselves forward.
It makes no sense to wallow.
I hate to wallow.
I do wallow, but I don't like to.
When I get sick of myself, I stop.
Like now.
I'm done.
Happy birthday, America.
:)
I have been feeling all of the expected symptoms that are related to dropping my dose of hydrocortisone weekly.
* severe fatigue
* dizziness
* nausea
* headache
* joint aches
* back aches
* depression
Lying down and closing my eyes gets me through the first three. Darvocet, my pain killer friend, gets me through the aching pain. The last one bothers me more than the others. Even taking 200 mg of Sertaline/Zoloft, an antidepressant, doesn't help me combat the depression brought on by low cortisone. Even a friend said she couldn't cry at all on 100 mg--it helped her that much. I'm on double and it's like I'm not on anything.
This got me thinking of the mind bender that is as debatable as the Chicken v. Egg case.
If a tree falls in the forest and no one is around to hear it, does it make a sound?
I am wondering if the same is true about me and my recovery.
It is day 24 after pituitary brain surgery.
Yes, they went through a natural orifice to access the part that hangs from the brain. The docs didn't do a craniotomy. They did not shave my head, and I did not lose my hair. For that, I'm thankful. However, they did get pretty darn close to my brain... like a centimeter or so. They gave it a little tickle. I've never liked being tickled.
So, I must ask:
If a Cushing's patient struggles after surgery and no one asks her how she is doing, is she really even sick?
~ Cushie Melissa
P.S. I admit a large degree of self-pity in this post. I feel needy and disappointed and unaccomplished and helpless. I am really even reluctant to post this now, and you may come back later and this post will be gone. If I can publically confess and own my uncomfortable feelings of being a weak, sick patient, then this post will remain here for others to read.
I post my true feelings because that is what I promised myself I would do. Strong or weak. Good or bad. Happy or sad.
I want to show those fighting with Cushing's that coping with this "rare" disease is difficult. People do not understand. It is not just you, your family, your friends. It happens to all of us. I understand.
So let's know that this is the case.
Let's keep moving ourselves forward.
It makes no sense to wallow.
I hate to wallow.
I do wallow, but I don't like to.
When I get sick of myself, I stop.
Like now.
I'm done.
Happy birthday, America.
:)
Wednesday, July 1, 2009
CARDIAC PADDLE TO THE CHEST: A Letter from the Founder of the Pituitary Network Association
*
I have found the Pituitary Network Association to be an incredibly helpful resource. For the undiagnosed, take this letter from its founder as a cardiac paddle to the chest. For the friends and family of the sick, understand the severity of this disease. It matters not whether you have heard about it before or not.
*
I have found the Pituitary Network Association to be an incredibly helpful resource. For the undiagnosed, take this letter from its founder as a cardiac paddle to the chest. For the friends and family of the sick, understand the severity of this disease. It matters not whether you have heard about it before or not.
From Our Founder:
Greetings,
If you are just learning about pituitary tumors and the many associated problems and hormonal disorders let us start with a frank discussion of where you are: Pituitary Tumors, though described in some textbooks as "benign" can be very aggressive and can do irreparable harm. Some can even be lethal IF NOT PROPERLY TREATED!
Do not allow your physicians, or yourself or family to treat these tumors lightly or in a start and stop fashion. Get highly qualified professional help. As with cancer or heart disease, you need expert help, only. The last sixty years have been remarkable in pituitary endocrinology. In the 1930's for instance, Cushing's Disease was a death sentence; patients lived an average of 4.7 years after presentation of illness. In the 1950's, the five year survival rate was 50%. The cure rate for microadenomas today is approximately 90% and improving. Experts in Neurosurgery and Pituitary Endocrinology have so improved the cure rate in a mere 60 plus years that the general medical community, and certainly insurance companies and others, tend to think of Pituitary Disease the way they think of Polio. The threat is over and the scourge has left us. Sadly, with Pituitary Tumors this is not the case. Each and every patient has to be evaluated and "fought for" or the battle may be lost.
These tumors act and grow differently in every patient. A correct diagnosis and treatment plan is essential for the survival of many of us. Yes, clearly, in many they are slow growing and may cause little apparent outward damage. Regretably, many with so called "incidental" or "non-secreting" tumors often have symptoms which their physicians simply forget or are untrained to ask about. Sexual function, mental health, overall ability to function and fit in, are all vital aspects of our lives. The tumor may not "take" our life but may in fact change it to the point of lowering the patient and his or her family into a "living hell". Study, learn, seek expert help and join the PNA as we continue to bring you the REAL facts about these insidious diseases and their often fateful consequences.
We do not mean to alarm you, but in the past twelve years we have witnessed enough deaths and suffering to know with certainty that no one has the right to deceive you about the issues you face. We do not yet have ALL the facts, nor are we here to console you. We are here to inform and alert you about Pituitary and Hormonal disorders. If we help save your life and make it better, we have succeeded.
Good luck and God Bless.
Robert Knutzen, founder
Pituitary Network Association
*
CUSHING'S: For the new folks
Hi everyone. I am working on a few blog posts that I hope I can post soon. For today, I'd like to spend a minute or two helping some new folks figure out what to do next. I know I've got a lot of information on this site. Sometimes, you need the basics. Here are the basics. I hope it helps.
HIGH UFCS
A high urinary free cortisol test, or UFC, is the "gold" standard of Cushing's tests. That means, if your UFC value is high, it is likely you have Cushing's. Doctors of all disciplines don't know much about Cushing's, but they seem to remember one fact about Cushing's: you have to have a high UFC to have it.
Now, if you do not have a high UFC, you could still have Cushing's. I took over 15 UFC tests and I never had an abnormal UFC. Never. I was told by eight endocrinologists that I did not have Cushing's. In fact, many patients will never have a high UFC, but many are later diagnosed with cyclical Cushing's. They--and I--still have Cushing's.
The important thing to remember is that hypercortisolism, or the overproduction of cortisol, can be measured in a few different tests. No one tests excludes the diagnosis of Cushing's. However, abnormal test after abnormal tests, in conjuction with multiple symptoms, does point to Cushing's.
midnight cortisol saliva
8 am cortisol serum blood test
4 pm cortisol serum blood test
midnight cortisol serum blood test
24-hour urine free cortisol test (UFC)
High ACTH is indicative of hypercortisolism, since ACTH is the pituitary hormone that triggers the adrenals to produce cortisol.
8 am ACTH plasma blood test
4 pm ACTH plasma blood test
midnight ACTH plasma blood test
Get a good understanding of Cushing's, ACTH, and cortisol, according to links on Labtestsonline.org. Be sure to click on all five tabs above each entry:
ACTH (adrenocorticotropic hormone)
cortisol
Cushing's 1 Cushing's 2 Cushing's 3
From labtestsonline.org:
Is there anything else I should know?
How is it used?
ACTH levels in the blood are measured to help detect, diagnose, and monitor conditions associated with excessive or deficient cortisol in the body. These conditions include:
* Cushing’s disease: excess cortisol that is due to an ACTH-producing tumor in the pituitary gland (usually a benign tumor)
* Cushing's syndrome: refers to the symptoms and signs associated with excess exposure to cortisol. In addition to Cushing’s disease, Cushing’s syndrome may be due to an adrenal tumor, adrenal hyperplasia, the use of steroid medications, or due to an ACTH-producing tumor that is located outside the pituitary (such as in the lungs).
* Addison's disease, primary adrenal insufficiency: decreased cortisol production due to adrenal gland damage
* Secondary adrenal insufficiency: decreased cortisol production because of pituitary dysfunction
* Hypotituitarism: pituitary dysfunction or damage that leads to decreased (or no) hormone production by the pituitary – including ACTH production
Measuring both ACTH and cortisol can help to differentiate among some of these conditions. Because the level of ACTH normally changes in the opposite direction to the level of cortisol, your doctor can learn much by identifying an imbalance in this relationship and the direction in which the imbalance occurs. The table below indicates the common patterns of ACTH and cortisol seen with different diseases involving the adrenal and pituitary glands.
Cushing's disease (pituitary tumor making ACTH)
High Cortisol
High ACTH
Adrenal tumor
High Cortisol
Low ACTH
"Ectopic" ACTH (ACTH made by a tumor outside the pituitary, usually in the lung
High Cortisol
High ACTH
Addison's disease (adrenal damage)
Low Cortisol
High ACTH
Hypopituitarism
Low Cortisol
Low ACTH
OTHER HORMONES
The pituitary is the master gland. It controls every hormone produced in the body. The presence of a pituitary tumor will press on cells it shouldn't press on up there, causing the malfunction of other pituitary hormones. Therefore, if you are to test if the pituitary is affected by a benign tumor or microadenoma, it is important to test other hormone levels.
Oregon Health and Science University's Pituitary Unit: The Basic Pituitary Disease / Pituitary Tumor Work-up and A Clinician's Guide to the Work-up of Pituitary Disorders
Here are a few other sites that discuss the testing process. You will find that many repeat the same info. That is good. This repetition gives you the sense that there is an agreed protocal on how to diagnose this disease. Again, getting a high UFC is most of the battle. Once you have a high UFC test in your pocket, you can pretty much get doctors to order the other tests without much hassle, or so I've been told.
Cushing's Support & Research Foundation's Fact Sheet and Cushing's Support & Research Foundation's Diagnostic Testing for Cushing's Syndrome
Pituitary Network Association's Cushing's page.
This is a little more complicated reading from a medical journal, but again, I think you can work your way through it: The Diagnosis of
Cushing’s Syndrome: An Endocrine Society Clinical Practice Guideline
For more quick info, check out the info posted on the left side bar.
I hope this helps.
Cushie Melissa
HIGH UFCS
A high urinary free cortisol test, or UFC, is the "gold" standard of Cushing's tests. That means, if your UFC value is high, it is likely you have Cushing's. Doctors of all disciplines don't know much about Cushing's, but they seem to remember one fact about Cushing's: you have to have a high UFC to have it.
Now, if you do not have a high UFC, you could still have Cushing's. I took over 15 UFC tests and I never had an abnormal UFC. Never. I was told by eight endocrinologists that I did not have Cushing's. In fact, many patients will never have a high UFC, but many are later diagnosed with cyclical Cushing's. They--and I--still have Cushing's.
The important thing to remember is that hypercortisolism, or the overproduction of cortisol, can be measured in a few different tests. No one tests excludes the diagnosis of Cushing's. However, abnormal test after abnormal tests, in conjuction with multiple symptoms, does point to Cushing's.
midnight cortisol saliva
8 am cortisol serum blood test
4 pm cortisol serum blood test
midnight cortisol serum blood test
24-hour urine free cortisol test (UFC)
High ACTH is indicative of hypercortisolism, since ACTH is the pituitary hormone that triggers the adrenals to produce cortisol.
8 am ACTH plasma blood test
4 pm ACTH plasma blood test
midnight ACTH plasma blood test
Get a good understanding of Cushing's, ACTH, and cortisol, according to links on Labtestsonline.org. Be sure to click on all five tabs above each entry:
ACTH (adrenocorticotropic hormone)
cortisol
Cushing's 1 Cushing's 2 Cushing's 3
From labtestsonline.org:
Is there anything else I should know?
How is it used?
ACTH levels in the blood are measured to help detect, diagnose, and monitor conditions associated with excessive or deficient cortisol in the body. These conditions include:
* Cushing’s disease: excess cortisol that is due to an ACTH-producing tumor in the pituitary gland (usually a benign tumor)
* Cushing's syndrome: refers to the symptoms and signs associated with excess exposure to cortisol. In addition to Cushing’s disease, Cushing’s syndrome may be due to an adrenal tumor, adrenal hyperplasia, the use of steroid medications, or due to an ACTH-producing tumor that is located outside the pituitary (such as in the lungs).
* Addison's disease, primary adrenal insufficiency: decreased cortisol production due to adrenal gland damage
* Secondary adrenal insufficiency: decreased cortisol production because of pituitary dysfunction
* Hypotituitarism: pituitary dysfunction or damage that leads to decreased (or no) hormone production by the pituitary – including ACTH production
Measuring both ACTH and cortisol can help to differentiate among some of these conditions. Because the level of ACTH normally changes in the opposite direction to the level of cortisol, your doctor can learn much by identifying an imbalance in this relationship and the direction in which the imbalance occurs. The table below indicates the common patterns of ACTH and cortisol seen with different diseases involving the adrenal and pituitary glands.
Cushing's disease (pituitary tumor making ACTH)
High Cortisol
High ACTH
Adrenal tumor
High Cortisol
Low ACTH
"Ectopic" ACTH (ACTH made by a tumor outside the pituitary, usually in the lung
High Cortisol
High ACTH
Addison's disease (adrenal damage)
Low Cortisol
High ACTH
Hypopituitarism
Low Cortisol
Low ACTH
OTHER HORMONES
The pituitary is the master gland. It controls every hormone produced in the body. The presence of a pituitary tumor will press on cells it shouldn't press on up there, causing the malfunction of other pituitary hormones. Therefore, if you are to test if the pituitary is affected by a benign tumor or microadenoma, it is important to test other hormone levels.
Oregon Health and Science University's Pituitary Unit: The Basic Pituitary Disease / Pituitary Tumor Work-up and A Clinician's Guide to the Work-up of Pituitary Disorders
Here are a few other sites that discuss the testing process. You will find that many repeat the same info. That is good. This repetition gives you the sense that there is an agreed protocal on how to diagnose this disease. Again, getting a high UFC is most of the battle. Once you have a high UFC test in your pocket, you can pretty much get doctors to order the other tests without much hassle, or so I've been told.
Cushing's Support & Research Foundation's Fact Sheet and Cushing's Support & Research Foundation's Diagnostic Testing for Cushing's Syndrome
Pituitary Network Association's Cushing's page.
This is a little more complicated reading from a medical journal, but again, I think you can work your way through it: The Diagnosis of
Cushing’s Syndrome: An Endocrine Society Clinical Practice Guideline
PNA Disorders Section - Introduction to the Pituitary Gland
Categories:
Our thanks to Daniel Kelly, M.D. (Director, Neuro-Endocrine Tumor Center - John Wayne Cancer Institute at Saint’s John Health Center, Santa Monica, CA) and Pejman Cohan, M.D. (Director, Specialized Endocrine Care Center - Beverly Hills, CA) for providing the following disorder information.
Introduction To The Pituitary Gland
The pituitary is a small, bean-shaped gland located below the brain in the skull base, in an area called the pituitary fossa or sella turcica. The gland is regulated by a region of the brain called the hypothalamus and they are connected by a thin delicate vascular connection called the pituitary stalk or infundibulum. Weighing less than one gram and measuring a centimeter in width, the pituitary gland is often called the "master gland" since it controls the secretion of the body’s hormones. These substances when released by the pituitary into the blood stream have a dramatic and broad range of effects on growth and development, sexuality and reproductive function, metabolism, the response to stress and overall quality of life. The pituitary gland is thus at the anatomical and functional crossroads of the brain, mind and body.
Structurally, the pituitary gland is divided into a larger anterior region (adenohypophysis) and a smaller posterior region (neurohypophysis). Directly above the pituitary gland are the crossing fibers of the optic nerves called the optic chiasm as well as the optic nerves as they project to the eyes. On each side of the pituitary gland is the cavernous sinus which is a venous channel through which runs the large carotid arteries that carry blood to the brain, and important nerves that control eye movements and facial sensation. Because of the close proximity of the pituitary gland to these major intracranial nerves and blood vessels, as well as the vital hormonal control the pituitary gland provides, disorders of the pituitary can cause a wide spectrum of symptoms, both hormonal and neurological.
Listed below are the specific hormones produced by the pituitary:
Growth Hormone (GH): This is the principal hormone that, among many other functions, regulates body and brain development, bone maturation, metabolism and is essential for healthy muscles.
Luteinizing Hormone (LH) and Follicle Stimulating Hormone (FSH): These hormones control the production of sex hormones (estrogen and testosterone) as well as sperm and egg maturation and release.
Prolactin (PRL): This hormone stimulates secretion of breast milk.
Thyroid Stimulating Hormone (TSH): This hormone stimulates the thyroid gland to release thyroid hormones. Thyroid hormones control basal metabolic rate and play an important role in growth and maturation. Thyroid hormones affect almost every organ in the body.
Adrenocorticotropic Hormone (ACTH): This hormone triggers the adrenal glands (located above the kidneys) to release the hormone cortisol which in turn, regulates carbohydrate, fat, and protein metabolism and is essential in the stress response.
Vasopressin - Also called anti-diuretic hormone (ADH): This hormone promotes water to be reabsorbed by the kidneys and is thus essential in water and electrolyte balance.
In disease states, the pituitary gland may under- or over-produce hormones. Decreased or absent hormone production from the pituitary gland is called hypopituitarism (Pituitary Failure). The symptoms and treatments for pituitary failure are listed below:
Hormone
Deficient Symptoms
Treatment
Growth Hormone
Children: Growth delay
Adults: Decreased muscle mass, increased body fat, elevated cholesterol, low bone density (osteoporosis), impaired psychological well-being, poor quality of life Recombinant Human Growth Hormone- Given once daily as an injection under the skin
LH / FSH
Decreased libido, erectile dysfunction, irregular or absent menses, decreased body hair, decreased muscle strength, hot flashes, mood changes
Men: Testosterone- Given as either topical gel or patch or injections
Women: Estrogen + Progesterone-Given as either topical patch or pills
ACTH
Poor appetite, nausea, weakness, vomiting, low blood sugar, low blood pressure, dizziness, body aches Hydrocortisone or Prednisone-Given as daily pills
TSH
Fatigue, weakness, cold intolerance, dry skin, constipation, heavy/painful menses, weight gain, memory loss, mood disturbance
Levothyroxine – Given as daily pills (some examples include Synthroid or Levoxyl or Levothroid or Armour Thyroid)
Prolactin
Inability to lactate
No treatment available
Vasopressin (ADH)
Increased thirst and frequent urination
DDAVP- Given either as daily pills or nasal spray
Pituitary tumors (also called pituitary adenomas) can result in hormonal overproduction causing serious endocrine disturbances such as acromegaly (excess GH), Cushing’s disease (excess ACTH) or prolactinoma (excess prolactin). Other pituitary adenomas are non-functional or "endocrine-inactive," meaning that they do not produce excess hormones. Instead, as these tumors enlarge, they can cause compression of the normal pituitary gland leading to decreased or absent hormone production (hypopituitarism or pituitary failure), visual loss from optic chiasm or optic nerve compression and headaches. Pituitary failure may also result from bleeding into a pituitary tumor, pituitary or intracranial surgery, radiation therapy to the pituitary or head trauma. Other tumors that arise near the pituitary gland which can also impact pituitary hormonal function include Rathke’s cleft cysts, craniopharyngiomas, meningiomas, chordomas, gliomas and epidermoid cysts.
For more quick info, check out the info posted on the left side bar.
I hope this helps.
Cushie Melissa
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