Today is the birthday, or anniversary, of the boards starting September 30, 2000 (The rest of the site started earlier that year on July 21, 2000) As of today, we have 73,024 members who have made countless posts.
Bettye passed away due to complications of Cushing’s disease. Once she was finally diagnosed, a decision was made against surgery and Bettye was put on the cortisol-lowering medication Korlym. Though she had initially gained weight from Cushing’s disease, as many patients do, she rapidly lost weight and was admitted into hospice care soon after.
Joanne was known on the boards as raggettyjoanne. Mario VandDermeij announced the passing of his loving wife of 23 years. Joanne Swain VanDermeij at the age of 56. After 2 years and 3 months of fighting the system, Joanne was finally diagnosed March the 14th, 2011, with full blown adrenal Cushing's.
Learning objectives: - the basic characteristics of the different types of pituitary adenomas - the potential predictors of recurrence and aggressiveness in pituitary adenomas - the surgical and radiotherapy options for recurrent pituitary adenomas - the potential medical interventions, including chemotherapy, for recurren […]
By the way, I know these symptoms very well. Ever heard of chiari malformation? This can also be responsible for your endocrine trouble. Talk to an neurologist and try to get an mri of your skull done.
Everyone who has taken part in a clinical trial is asked to share. We are interested in learning why you decided to take part in a clinical trial and how your experience went.
Thanks for your comment. Wow, I never knew low progesterone caused diarrhea. That’s good to know. I haven’t had my progesterone checked in years. That’s interesting you mention stuff related to the thyroid, as I have thyroid issues, too, that I just recently found out. My blood tests show high T4 and normal T3...
This study was done to compare corticotroph hyperplasia and histopathologically proven adenomas in patients with Cushing disease by analyzing diagnostic features, surgical management, and clinical outcomes.
Learning objectives: 1. To understand the surgical steps of endoscopic pituitary surgery 2. To understand how the surgical steps of endoscopic pituitary surgery translate to post-operative outcomes 3. To understand surgical factors that can modify post-operative outcomes after endoscopic pituitary surgery 4. To understand post-operative care that can mod […]
I am not a doctor, but I have almost the exact issues as well. Doctors “diagnosed” me with ibs-d, as that is the most obvious symptom, but the others are all true as well. I gave up on doctors about 10 years ago, and started doing my own research and self-experimentation. I discovered that I sometimes have high testosterone, and usually have extremely high d […]
Tthere is no evidence that COVID-19 has a more severe course among individuals with primary and secondary adrenal insufficiency; however, those with adrenal insufficiency are at increased risk for respiratory and viral infections, and patients experiencing major inflammation and fever are at risk for life-threatening adrenal crisis.
If approved, Recorlev could be available to patients in the U.S. in 2022. “We are delighted to announce the positive and statistically significant top-line results of the LOGICS study, which add to the growing body of evidence supporting the potential of Recorlev (levoketoconazole) as an effective and well tolerated cortisol synthesis inhibitor to treat Cush […]
Frederique Welgryn, Managing Director of HRA Pharma Rare Diseases, added: “Cushing’s Syndrome is a chronic disease that can lead to deterioration in patients’ conditions if not treated appropriately. We are thrilled to announce that this first prospective study verifies that metyrapone is both an effective and safe way to treat endogenous Cushing’s Syndrome. […]
Thanks for sharing this Mary. This encourages me even more that I might be on the right track in my belief that I am able to control my cortisol levels through not eating starchy foods. Starch transforms into sugar. I am saying the source of the problem is starch before it even reaches the sugar stage...
Abnormally high levels of cortisol in the urine — one of the hallmarks of Cushing’s syndrome — seem to be associated with alterations in blood sugar metabolism in obese patients, a study found.
Late-night salivary cortisol (LNSC) measured by enzyme immunoassay (EIA-F) is a first-line screening test for Cushing’s syndrome (CS) with a reported sensitivity and specificity of >90%. However, liquid chromatography-tandem mass spectrometry, validated to measure salivary cortisol (LCMS-F) and cortisone (LCMS-E), has been proposed to be superior diagnost […]
Dr. Friedman prescribes various thyroid hormone preparations to his patients with hypothyroidism. This includes natural desiccated thyroid (NDT) of which two preparations are WP Thyroid and Nature-Throid, both made by RLC Labs. On August 25, 2020, RLC Labs announced a voluntary, consumer-level recall of all lots of Nature-Throid and WP Thyroid tablets becaus […]
What have you learned about the medical community since you have become sick?
This one is so easy. I’ve said it a thousand times – you know your own body better than any doctor will. Most doctors have never seen a Cushing’s patient, few ever will in the future.
If you believe you have Cushing’s (or any other rare disease), learn what you can about it, connect with other patients, make a timeline of symptoms and photographs. Read, take notes, save all your doctors notes, keep your lab findings, get second/third/ten or more opinions. Make a calendar showing which days you had what symptoms. Google calendars are great for this.
This is your life, your one and only shot (no pun intended!) at it. Make it the best and healthiest that you can.
When my friend and fellow e-patient Dave deBronkart learned he had a rare and terminal kidney cancer, he turned to a group of fellow patients online and found a medical treatment that even his own doctors didn’t know. It saved his life.
In this video he calls on all patients to talk with one another, know their own health data, and make health care better one e-Patient at a time.
Today is the final day of the Cushing’s Awareness Challenge and I wanted to leave you with this word of advice…
To that end, I’m saving some of what I know for future blog posts, maybe even another Cushing’s Awareness Challenge next year. Possibly this will become a tradition.
I am amazed at how well this Challenge went this year, giving that we’re all Cushies who are dealing with so much. In the end, there were 15 of us trying to post daily. I hope that some folks outside the Cushing’s community read these posts and learned a little more about us and what we go through.
So, tomorrow, I’ll probably go back to posting the regular Cushing’s stuff on this blog – after all, it does have Cushing’s in its name!
I am trying to get away from always reading, writing, breathing Cushing’s and trying to celebrate the good things in my life, not just the testing, the surgery, the endless doctors. If you’re interested, I have other blogs about traveling, friends, fun stuff and trying to live a good life, finally. Those are listed in the right sidebar of this blog, past the Categories and before the Tags.
I first saw a similar image to this one with the saying Life. Be in it at a recreation center when my son was little. At the time, it was “Duh, of course I’m in it”.
The original image was one a couple males, a couple females and a dog walking/running. No folks in wheelchairs, no older folks and certainly no zebras.
It would be nice to have everyone out there walking or running but that’s not real life, at least in the Cushie world. It’s been a long time since I’ve really been In My Life – maybe it’s time to get back.
A dear friend who has not one, but two forms of cancer was traveling throughout Europe for the first time after her husband’s death wrote:
Some final words before I turn in for the night. If there is a spark of desire within you to do something which is not contrary to God’s Holy Law, find a way to make it happen. All things are possible and blessings abound for those who love Him. Life is such an adventure. Don’t be a spectator – live every single moment for Him and with Him.
Somedays, it’s hard even getting up in the morning but I’m trying. I’ve tried Water Aerobics for People with Arthritis and I actually went to class twice a week, I got a new part-time job two years ago, my son and I will play at Steinway Hall in NYC again in June, we have plans for a cruise in June, and a trip to Scotland to cross something off my Bucket List – seeing/hearing the Edinburgh Tattoo.
This is the one and only life I’ll ever have and I want to make the most of it!
So often during the diagnosis phase of Cushing’s I felt like this picture – I was walking alone to an unknown place with an unknown future.
My diagnosis was pre-Internet which meant that any information had to be gotten from libraries, bookstores, magazines…or doctors. In 1983 to 1986 I knew something was terribly wrong but there was no backup from doctors, family or friends. My first hope was from a magazine (see Day Six)
After I got that first glimmer of hope, it was off to the library to try to understand medical texts. I would pick out words I did understand – and it was more words each trip. All my research led me to Cushing’s.
Unfortunately, the research didn’t lead me to doctors who could help for several years. That contributed greatly to the loneliness. If a Doctor says you’re not sick, friends and family are going to believe the doctor, not you. After all, he’s the one trained to know what’s wrong, or find out.
I was so grateful when I finally got into a clinical trial at NIH and was so nice not to be alone with this mystery illness. I was also surprised to learn, awful as I felt, there were Cushies much worse off than I was.
I am so glad that the Internet is here now helping us all know that we’re not alone anymore.
Mary, I am delighted to see you here. Cushings – because of the persistent central obesity caused by (we know now) the lack of growth hormone plus the hypothyroidism I was diagnosed with (but for which treatment was ineffective due to my lack of cortisol) – was one of the things I considered as an explanation for my symptoms. Your site was enormously educational and helpful to me in figuring out what might be happening to me. Those other patient testimonies I referred to? Many of them were the bios you posted. Thank you so much for commenting. I am so grateful for the support and encouragement. I really hope that my experiences will help other undiagnosed hypopituitary patients find their way to a diagnosis. I often used to dream that one day I’d get to say to others what was so often said to me: don’t give up, there will be an answer. I kept believing in myself because people I hadn’t even met believed in me. Now I am finally here and I do hope my story will help others to have faith in their own instincts.
It’s Sunday again, so this is another semi-religious post so feel free to skip it 🙂
I’m sure that many would think that this is a semi-odd choice for all-time favorite hymn.
My dad was a Congregational (now United Church of Christ) minister so I was pretty regular in church attendance in my younger years.
Some Sunday evenings, he would preach on a circuit and I’d go with him to some of these tiny churches. The people there, mostly older folks, liked the old hymns best – Fanny Crosby and so on.
So, some of my “favorite hymns” are those that I sang when I was out with my Dad. Fond memories from long ago.
In 1986 I was finally diagnosed with Cushing’s after struggling with doctors and trying to get them to test for about 5 years. I was going to go into the NIH (National Institutes of Health) in Bethesda, MD for final testing and then-experimental pituitary surgery.
I was terrified and sure that I wouldn’t survive the surgery.
Somehow, I found a 3-tape set of Readers Digest Hymns and Songs of Inspiration and ordered that. The set came just before I went to NIH and I had it with me.
At NIH I set up a daily “routine” of sorts and listening to these tapes was a very important part of my day and helped me get through the ordeal of more testing, surgery, post-op and more.
When I had my kidney cancer surgery, the tapes were long broken, but I had replaced all the songs – this time on my iPod.
Abide With Me was on this tape set and it remains a favorite to this day. Whenever we have an opportunity in church to pick a favorite, my hand always shoots up and I request page 700. When someone in one of my handbell groups moves away, we always sign a hymnbook and give it to them. I sign page 700.
I think that many people would probably think that this hymn is depressing. Maybe it is but to me it signifies times in my life when I thought I might die and I was so comforted by the sentiments here.
This hymn is often associated with funeral services and has given hope and comfort to so many over the years – me included.
If you abide in Me, and My words abide in you, you will ask what you desire, and it shall be done for you.
~John 15:7
Abide With Me
Words: Henry F. Lyte, 1847.
Music: Eventide, William H. Monk, 1861. Mrs. Monk described the setting:
This tune was written at a time of great sorrow—when together we watched, as we did daily, the glories of the setting sun. As the last golden ray faded, he took some paper and penciled that tune which has gone all over the earth.
Lyte was inspired to write this hymn as he was dying of tuberculosis; he finished it the Sunday he gave his farewell sermon in the parish he served so many years. The next day, he left for Italy to regain his health. He didn’t make it, though—he died in Nice, France, three weeks after writing these words. Here is an excerpt from his farewell sermon:
O brethren, I stand here among you today, as alive from the dead, if I may hope to impress it upon you, and induce you to prepare for that solemn hour which must come to all, by a timely acquaintance with the death of Christ.
For over a century, the bells of his church at All Saints in Lower Brixham, Devonshire, have rung out “Abide with Me” daily. The hymn was sung at the wedding of King George VI, at the wedding of his daughter, the future Queen Elizabeth II, and at the funeral of Nobel peace prize winner Mother Teresa of Calcutta in1997.
Abide with me; fast falls the eventide;
The darkness deepens; Lord with me abide.
When other helpers fail and comforts flee,
Help of the helpless, O abide with me.
Swift to its close ebbs out life’s little day;
Earth’s joys grow dim; its glories pass away;
Change and decay in all around I see;
O Thou who changest not, abide with me.
Not a brief glance I beg, a passing word;
But as Thou dwell’st with Thy disciples, Lord,
Familiar, condescending, patient, free.
Come not to sojourn, but abide with me.
Come not in terrors, as the King of kings,
But kind and good, with healing in Thy wings,
Tears for all woes, a heart for every plea—
Come, Friend of sinners, and thus bide with me.
Thou on my head in early youth didst smile;
And, though rebellious and perverse meanwhile,
Thou hast not left me, oft as I left Thee,
On to the close, O Lord, abide with me.
I need Thy presence every passing hour.
What but Thy grace can foil the tempter’s power?
Who, like Thyself, my guide and stay can be?
Through cloud and sunshine, Lord, abide with me.
I fear no foe, with Thee at hand to bless;
Ills have no weight, and tears no bitterness.
Where is death’s sting? Where, grave, thy victory?
I triumph still, if Thou abide with me.
Hold Thou Thy cross before my closing eyes;
Shine through the gloom and point me to the skies.
Heaven’s morning breaks, and earth’s vain shadows flee;
