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I have many symptoms of cushings, I have used cloatasol propionate for about 5 years for my chronic eczema I was on oral steroids in July then high dose steroids again in September. thejuly in July it was for a severe eczema breakout and in September it was for sudden hearing loss. Now I need a hearing aid. I seen one place after googling that connects cushings with sudden hearing loss. Has anyone dealt with this?
Headline: “‘I gained 10st due to a rare condition – I lost it again by doing a simple daily exercise’
Hannah Mai, 37, managed to lose the weight in two years by doing a simple daily exercise”
She did lose the weight but, reading the article, also “Following her diagnosis, Hannah underwent brain surgery in February 2021 to remove the pituitary tumour causing her condition and was prescribed steroids to manage it.”
Just a bit of a misleading header.
Here’s the whole article. And it was a bit more than a “simple daily exercise” and removing a pituitary tumor!
A woman who piled on 10 stone due to a rare condition has shed the weight in just two years, thanks to a daily exercise routine.
Hannah Mai, 37, was diagnosed with Cushing’s disease, a hormonal disorder caused by high cortisol levels, in October 2020 after gaining 10 stone in just two and a half years.
Following her diagnosis, Hannah underwent brain surgery in February 2021 to remove the pituitary tumour causing her condition and was prescribed steroids to manage it.
In April, 2023, Hannah was taken off her steroid medication and was determined to shed the 10 stone she gained due to the disease – who weighed 20 stone 5lbs and was a size 26.
Through a combination of high-protein meals and daily pilates sessions, Hannah impressively slimmed down to 10 stone 4lbs, fitting into a size 10, all within two years.
Hannah, from Coventry, Warwickshire, said: “Once I started losing the weight, I just kept going.
“It isn’t easy, you really have to push yourself, and focus on who you want to be and think about who you want to be.”
When she turned 30, Hannah noticed she started gaining weight and went from nine stone to 16 stone in a few months. She revealed that despite frequent doctor visits, she was constantly asked if she was expecting or if her weight gain was due to hormonal changes.
Hannah shared: “I was always around nine stone, but I noticed how I started to gain a bit of weight. I knew there was something wrong with me, but people around me thought I had changed my diet and asked if I was eating more.
“I was asked if I was pregnant six times, and told that my weight gain could be caused by hormones. I went up to 20 stone at my heaviest.”
In October 2020, over two years since her weight began to increase, Hannah woke up one day with a hunched back.
After a quick Google search suggested Cushing’s disease as a possible cause, and noticing the other symptoms including weight gain, she immediately sought medical advice.
She was referred to University Hospital Coventry & Warwickshire, where an MRI scan and blood tests confirmed she had Cushing’s disease.
Hannah added: “I printed off the list of symptoms and took them to my doctor, who then referred me to the hospital.
“There, I had an MRI scan and blood tests, which confirmed that I had Cushing’s disease.
“I was relieved but scared when I got the diagnosis. I had been saying for years that there was something wrong with me.”
Five months post-diagnosis, in February 2021, Hannah underwent brain surgery to remove the pituitary tumour causing the condition, and was put on steroids to manage her symptoms.
After battling with her health and spending two years on steroids to manage her condition, Hannah came off the medication as her health improved.
After she came off her medication, Hannah said she knew she was better and became determined to lose weight.
She said: “It wasn’t easy to lose weight whilst I was still on steroids, as soon as I came off them, I knew this was my body and I was a lot better.
“I really pushed myself, I worked super hard, cut out all sugar, cut out dairy, and gluten after I was diagnosed with celiac disease.
“I have a low-carb, high-protein diet with lots of vegetables, and I do pilates every day.”
Her commitment paid off as she impressively slimmed down from 20 stone to 10 stone within two years. She went from wearing a size 26 clothes to wearing a size 10 – back to where she was before Cushing’s disease.
Hannah said: “I am super proud of myself, I am always worried that the weight will come back.
“I feel so much happier. When I look back at myself, I just can’t believe I was that size.
“When I look back at old photos, I feel very sad about what happened to me, but it makes me think that I need to be proud about how far I have come.”
Adapted from https://www.mirror.co.uk/news/health/i-gained-10st-due-rare-35432462
MaryO’Note: Cushing’s Disease is a subset of Cushing’s Syndrome and is caused by pituitary issues.
High cortisol – and its deleterious effects on the body – may be a more commonly recognized phrase in today’s healthcare lexicon. Still, doctors say there is a need for more awareness of a rare and potentially life-threatening condition involving cortisol, known as Cushing’s Syndrome
In a new editorial from MerckManuals.com, Ashley B. Grossman, MD, University of Oxford; Fellow, Green-Templeton College, addresses common patient questions around Cushing syndrome.
1. What causes Cushing syndrome?
Adrenal glands release hormones that help control blood pressure, heart rate, balance of water and salt, response to stress, and more, says Grossman. Cushing syndrome occurs when these glands release too much of the hormone cortisol, or you are taking a hormone like cortisol.
This typically has one of two causes:
2. What are the symptoms of Cushing syndrome?
Cortisol is an essential hormone in the body. Having too much can cause many changes, including increases in blood sugar and cholesterol. Corticosteroids also alter the amount and distribution of body fat, says Grossman.
Other symptoms of Cushing syndrome include:
Cushing syndrome can be life-threatening, says Grossman. Very high cortisol will lower your potassium level, which can cause heart problems.
3. What can I expect at a doctor’s appointment for Cushing syndrome?
For patients not taking high levels of steroids, Cushing syndrome is rare, and many symptoms can have other causes. At the same time, the physical changes can be a good indicator of Cushing syndrome, says Grossman.
If you’re experiencing these symptoms, it’s a good idea to see your primary care doctor right away. Bring some photos of yourself from a few years ago so doctors can see how your body may have changed. Doctors will also ask about anything that could increase steroid levels, such as using creams with steroids or inhaled steroids, as well as recreational drug use.
Once a patient is diagnosed with Cushing syndrome, it’s important to see a specialist for further guidance and treatment, says Grossman. Treatment will depend on whether the problem is in the adrenal glands, the pituitary gland, or elsewhere.
4. Is it safe to take steroids?
Steroids can be a game-changing treatment for many patients, but they do have a risk of side effects, says Grossman. They need to be taken as prescribed. Doctors never stop the use of corticosteroids abruptly if people have been taking them for more than two or three weeks. Instead, doctors gradually reduce (or taper) the dose over weeks and sometimes months.
To read more of Grossman’s insights on Cushing syndrome, visit this editorial on MerckManuals.com.
About The Merck Manuals and MSD Manuals
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Myth: “Each person requires the same dose of steroid in order to survive with Secondary or Primary Adrenal Insufficiency”
Fact: In simple terms, Adrenal Insufficiency occurs when the body does not have enough cortisol in it. You see, cortisol is life sustaining and we actually do need cortisol to survive. You have probably seen the commercials about “getting rid of extra belly fat” by lowering your cortisol. These advertisements make it hard for people to actually understand the importance of the function of cortisol.
After a Cushing’s patient has surgery, he/she goes from having very high levels of cortisol to no cortisol at all. For pituitary patients, the pituitary, in theory, should start working eventually again and cause the adrenal glands to produce enough cortisol. However, in many cases; the pituitary gland does not resume normal functioning and leaves a person adrenally insufficient. The first year after pit surgery is spent trying to get that hormone to regulate on its own normally again. For a patient who has had a Bilateral Adrenalectomy (BLA), where both adrenal glands are removed as a last resort to “cure” Cushing’s; his/her body will not produce cortisol at all for his/her life. This causes Primary Adrenal Insufficiency.
All Cushing’s patients spend time after surgery adjusting medications and weaning slowly from steroid (cortisol) to get the body to a maintenance dose, which is the dose that a “normal” body produces. This process can be a very long one. Once on maintenance, a patient’s job is not over. He/She has to learn what situations require even more cortisol. You see, cortisol is the stress hormone and also known as the Fight or Flight hormone. Its function is to help a person respond effectively to stress and cortisol helps the body compensate for both physical and emotional stress. So, when faced with a stressor, the body will produce 10X the baseline levels in order to compensate. When a person can not produce adequate amounts of cortisol to compensate, we call that Adrenal Insufficiency. If it gets to the point of an “Adrenal Crisis”, this means that the body can no longer deal and will go into shock unless introduced to extremely high levels of cortisol, usually administered through an emergency shot of steroid.
There are ways to help prevent a crisis, by taking more steroid than the maintenance dose during times of stress. This can be anything from going to a family function (good stress counts too) to fighting an infection or illness. Acute stressors such as getting into a car accident or sometimes even having a really bad fight require more cortisol as well.
It was once believed that everyone responded to every stressor in the exact same way. So, there are general guidelines about how much more cortisol to introduce to the body during certain stressors. For instance, during infection, a patient should take 2-3X the maintenance dose of steroid (cortisol). Also, even the maintenance dose was considered the same for everyone. Now a days, most doctors will say that 20 mg of Hydrocortisone (Steroid/Cortisol) is the appropriate maintenance dose for EVERYONE. Now, we know that neither is necessarily true. Although the required maintenance dose is about the same for everyone; some patients require less and some require more. I have friends who will go into an adrenal crisis if they take LESS than 30 mg of daily steroid. On the other hand, 30 mg may be way too much for some and those folks may even require LESS daily steroid, like 15 mg. Also, I want to stress (no pun intended) that different stressors affect different people differently. For some, for instance, an acute scare may not affect them. However, for others, receiving bad news or being in shock WILL put their bodies into crisis. That person must then figure out how much additional steroid is needed.
Each situation is different and each time may be different. Depending on the stressor, a person may need just a little more cortisol or a lot. Every person must, therefore, learn their own bodies when dealing with Adrenal Insufficiency. This is VERY important! I learned this the hard way. As a Clinical Psychologist; I assumed that my “coping skills” would be enough to prevent a stressor from putting me into crisis. That was FAR from the truth! I have learned that I can not necessarily prevent my body’s physiological response to stress. People often ask me, “BUT you are a psychologist! Shouldn’t you be able to deal with stress?!!!!” What they don’t realize is that my BODY is the one that has to do the job of compensating. Since my body can not produce cortisol at all, my job is to pay close attention to it so that I can take enough steroid to respond to any given situation. We all have to do that. We all have to learn our own bodies. This is vitally important and will save our lives!
To those we have lost in our community to Adrenal Insufficiency after treatment of Cushing’s, Rest in Peace my friends! Your legacies live on forever!
~ By Karen Ternier Thames
Myth: “Each person requires the same dose of steroid in order to survive with Secondary or Primary Adrenal Insufficiency”
Fact: In simple terms, Adrenal Insufficiency occurs when the body does not have enough cortisol in it. You see, cortisol is life sustaining and we actually do need cortisol to survive. You have probably seen the commercials about “getting rid of extra belly fat” by lowering your cortisol. These advertisements make it hard for people to actually understand the importance of the function of cortisol.
After a Cushing’s patient has surgery, he/she goes from having very high levels of cortisol to no cortisol at all. For pituitary patients, the pituitary, in theory, should start working eventually again and cause the adrenal glands to produce enough cortisol. However, in many cases; the pituitary gland does not resume normal functioning and leaves a person adrenally insufficient. The first year after pit surgery is spent trying to get that hormone to regulate on its own normally again. For a patient who has had a Bilateral Adrenalectomy (BLA), where both adrenal glands are removed as a last resort to “cure” Cushing’s; his/her body will not produce cortisol at all for his/her life. This causes Primary Adrenal Insufficiency.
All Cushing’s patients spend time after surgery adjusting medications and weaning slowly from steroid (cortisol) to get the body to a maintenance dose, which is the dose that a “normal” body produces. This process can be a very long one. Once on maintenance, a patient’s job is not over. He/She has to learn what situations require even more cortisol. You see, cortisol is the stress hormone and also known as the Fight or Flight hormone. Its function is to help a person respond effectively to stress and cortisol helps the body compensate for both physical and emotional stress. So, when faced with a stressor, the body will produce 10X the baseline levels in order to compensate. When a person can not produce adequate amounts of cortisol to compensate, we call that Adrenal Insufficiency. If it gets to the point of an “Adrenal Crisis”, this means that the body can no longer deal and will go into shock unless introduced to extremely high levels of cortisol, usually administered through an emergency shot of steroid.
There are ways to help prevent a crisis, by taking more steroid than the maintenance dose during times of stress. This can be anything from going to a family function (good stress counts too) to fighting an infection or illness. Acute stressors such as getting into a car accident or sometimes even having a really bad fight require more cortisol as well.
It was once believed that everyone responded to every stressor in the exact same way. So, there are general guidelines about how much more cortisol to introduce to the body during certain stressors. For instance, during infection, a patient should take 2-3X the maintenance dose of steroid (cortisol). Also, even the maintenance dose was considered the same for everyone. Now a days, most doctors will say that 20 mg of Hydrocortisone (Steroid/Cortisol) is the appropriate maintenance dose for EVERYONE. Now, we know that neither is necessarily true. Although the required maintenance dose is about the same for everyone; some patients require less and some require more. I have friends who will go into an adrenal crisis if they take LESS than 30 mg of daily steroid. On the other hand, 30 mg may be way too much for some and those folks may even require LESS daily steroid, like 15 mg. Also, I want to stress (no pun intended) that different stressors affect different people differently. For some, for instance, an acute scare may not affect them. However, for others, receiving bad news or being in shock WILL put their bodies into crisis. That person must then figure out how much additional steroid is needed.
Each situation is different and each time may be different. Depending on the stressor, a person may need just a little more cortisol or a lot. Every person must, therefore, learn their own bodies when dealing with Adrenal Insufficiency. This is VERY important! I learned this the hard way. As a Clinical Psychologist; I assumed that my “coping skills” would be enough to prevent a stressor from putting me into crisis. That was FAR from the truth! I have learned that I can not necessarily prevent my body’s physiological response to stress. People often ask me, “BUT you are a psychologist! Shouldn’t you be able to deal with stress?!!!!” What they don’t realize is that my BODY is the one that has to do the job of compensating. Since my body can not produce cortisol at all, my job is to pay close attention to it so that I can take enough steroid to respond to any given situation. We all have to do that. We all have to learn our own bodies. This is vitally important and will save our lives!
To those we have lost in our community to Adrenal Insufficiency after treatment of Cushing’s, Rest in Peace my friends! Your legacies live on forever!
~ By Karen Ternier Thames
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The CAHmelia clinical trials are exploring a new investigational treatment for classic CAH. CAHmelia 203 and CAHmelia 204 are clinical trials to test tildacerfont in adults with classic CAH, which may offer you and your loved ones hope of a brighter future – one where you may not have to choose between symptom management and long-term health. Tildacerfont is a new type of oral, once-daily investigational treatment – one that is not a steroid – that is currently being tested in adults with classic CAH. By reducing the amount of androgens your body makes, tildacerfont may improve your classic CAH symptoms. This investigational treatment will not replace your steroid treatment but may allow you to manage your disease with lower amounts of steroids at normal or near-normal doses. Who can take part in this trial? You may be able to take part if you:Are at least 18 years of ageHave a confirmed diagnosis of classic CAH due to 21-OH deficiencyHave been on the same daily dose of steroids (GCs and/or mineralocorticoids) for at least 1 month before starting the trialBoth trials are now open for enrollment. Tildacerfont is an investigational treatment not authorized for use in people outside the clinical trial. For more information, go to: clarahealth.com/studies/cahmelia |
Heather, pituitary surgery on January 18, 2006 after years of medical problems, June 5, 7:30PM
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Ferol started noticing irregular symptoms in her late 20’s, but more developed since 2001, and rapidly more chronic as time went by. Finally, at her March 2005 physical, she had enough symptoms listed for her GP to start getting the connection to Cushing’s.
She was immediately referred to Dr. Adam Spitz, endocrinologist, with a battery of tests confirmed the initial diagnosis. Her pituitary surgery was performed 09-30-05. She has lost 30+ pounds after reaching a high of 190 prior to surgery.
Listen at http://www.blogtalkradio.com/cushingshelp/2008/05/08/interview-with-ferolv-pituitary-survivor
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Terry (Terry) is a long time pituitary Cushing’s survivor.
Terry had a pituitary surgery (in LA) in October of 2003 which did not cure her Cushing’s Disease. Then, Dec 13th, 2003 she had her BLA in a Wisconsin hospital. She also had an infection in her sphenoid sinus. It originated at the site of her pituitary surgery from October 2003. She had to be on a lot of antibiotics and narcotic pain relievers.
In Sept 2005 the surgeon removed the infection from one area, making another area clear…..
Listen at http://www.blogtalkradio.com/cushingshelp/2008/04/17/interview-with-terry-g-pituitary-patient
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Thirty-one former customers have filed suit in New Jersey State Court against Mario Badescu, Inc., a skincare company based out of Edison, New Jersey, and Mario Badescu Skin Care, Inc., a skincare salon in New York.
The plaintiffs allege that they were injured by potent and undisclosed steroids in two of Mario Badescu’s face creams, Control Cream, and Healing Cream, which were marketed as products that contained only “botanical” active ingredients that were safe for daily use. The complaint alleges that contrary to what Mario Badescu told the public, Control Cream and Healing Cream contained two steroids: hydrocortisone and triamcinolone acetonide. The complaint also alleges that Mario Badescu’s products contained higher than prescription-strength doses of triamcinolone acetonide. Both steroids pose serious health risks to both the skin and the body’s adrenal system.
The plaintiffs were unaware of the steroids in Mario Badescu’s products and used the products on their faces, usually daily, for as long as fourteen years. Many of the plaintiffs allege that they unwittingly became addicted to the steroids such that even a day without use of the Products caused severe and painful withdrawal reactions. Moreover, many of the plaintiffs allege that they suffered from steroid-related ailments while using Control Cream or Healing Cream, including cataracts, glaucoma, mood disorders, heart issues, elevated cortisol levels, adrenal system suppression and Cushing’s Syndrome. Plaintiffs allege that because they did not know they were using steroids at the time, they were unable to inform their physicians about the true source of their injuries and were repeatedly misdiagnosed by their medical providers.
“Mario Badescu secretly added an addictive prescription steroid to its cosmetic face creams, then told its customers that the creams were safe for daily use,” Plaintiffs’ counsel, Gary E. Mason said. “Our clients suffered devastating injuries as a result of this deception,” Mason added.
The plaintiffs are represented by John C. Whitfield, Gary E. Mason, Esfand Nafisi, and Caroline Ramsey Taylor of Whitfield Bryson & Mason LLP, and Michael Galpern, Andrew Bell and Janet Walsh of Locks Law Firm, LLC. For more information about the lawsuit, contact the firm by phone at (202)640-1167.
The name of the case is Restaino et al. v. Mario Badescu, Inc. et al., No. MID-L-5830-14 (N.J. Super. Ct. Law Div., filed Sept. 25, 2014).
See us on WTVH/WEHT Evansville! “Tristate Law Firm Takes On Major Cosmetics Company“