The researchers concluded that “hydrocortisone granules are an effective treatment for childhood adrenal insufficiency providing the ability to accurately prescribe pediatric appropriate doses.”
Cookie died October 11, 2003. She had a pituitary tumor, recurrence, BLA, PCOS, radiation... Cookie touched a lot of lives. I would get these perky, cheerful and witty emails. It is terrible to lose her. She has left such a legacy, though, that she will go on touching lives for many years to come. She loved people and wanted to make a difference in the lives […]
Hi I recently became aware of my possible buffalo hump after xrays of my neck were normal except for a fat pad at the base of my neck. After reading of some of the symptoms of Cushings it was a light bulb moment with so many symptoms being similar to what I’m going through.
i have been on high doses of prednisone for over a year and have all the symptoms of exogenous cushing syndrome but have been made to feel like i;m going mad. they have not diagnosed me as having this. i get so depressed with the pain sometimes and feel like they are only interested in the original condition not the side effects.
Happy Girl writes: I am not so great at typing since my mind gets so jumbled but I have been at this journey for 2 years. I did make a detailed youtube video to tell my story so far
In the new study, researchers analyzed data for 88 people with endogenous Cushing’s syndrome diagnosed between 2012 and 2018 who had undergone regular muscle function tests. The data were collected as part of the German Cushing’s Registry, and the assessed group was mostly female (78%), with an average age of 49.
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.
I have been trying to write as many posts as I can that relate to Cushing’s this month, as part of the Cushing’s Blogger Challenge, so here is the next in the series. I know a question on the minds of a lot of Cushing’s patients post-op is whether they are actually in remission after surgery. As I discussed the other day in another post, it often can take a long time to figure this out. Neuroendocrine tumors are a special PITA this way. The tumors are tiny and soft like toothpaste and it is common for very excellent, experienced surgeons to miss a tumor or part of a tumor during surgery. And because the tumors spit out hormones they do damage and disrupt the body’s natural hormonal activities for many months, muddying the waters even further.
So how do you know if you are in remission? The annoying…
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;
Before Cushing’s Disease, I had good and bad days. When I was getting sick, things were out of control. Not only did I feel really bad but I had to analyze how I felt bad. I had to focus on why I felt bad. Those wonderful days that I felt better, I questioned how bad I felt before. It took me some time to just allow myself to enjoy feeling less horrible. I don’t even want to think about recovery because that was a whole new level of feeling poorly. Now I am over 10 years out and dealing with deficiencies.
Over the past couple months, I have been loosing energy and gaining weight. I am so tired. I sleep so much. I am certain that something is out but it will be another month until my levels are checked again. The day that not feeling well and counting that…
