This came up in the comments to https://cushingsbios.com/2018/11/17/jayne-in-the-media/
The question is
I dropped by this site because my friend’s daughter has Cushings and I wanted to learn more. Is there any chance that Cushings might be manageable or improvable in a way similar to what Izabella Wentz proposes for Hashimotos?
What do you think?
You do have one, right???
I loved the one that Natalie had and, after her death, I bought the same style as a way to honor her memory.
There’s room for 5 lines on there – not enough for everything but enough to get me through an emergency…and I have had some.
There’s also a line with my info number so when the EMTs call the tollfree number, they can get right to my complete info.
So – what do you have on yours? Please share!
A guest on the message boards asks:
Is it possible to have cushing disease without high blood pressure? they are experiencing a lot of the other symptoms kidney stones, headache, fatigue, joint pain, stretch marks on back, abdomen, arms, breasts, hair loss, obesity in stomach area, potbelly, thin legs, memory issues, thinning of skin, irregular periods, oily skin, acne, puffy face etc.
Please respond here or on the message boards at http://cushings.invisionzone.com/topic/54396-i-have-a-strange-question-may-even-be-a-dumb-question
Thanks for your help!
This question was originally posted on Facebook.
I responded with a quote from this book: Harvey Cushing: A Life in Surgery
“Dr. Harvey Cushing, who is the one responsible for discovering our disease, found some of his patients in circuses.”
Other responses so far:
OP: Thank you for sharing this Mary Kelly O’Connor… as sad as this is… that our past cushing’s friends were on display as freaks in circuses, i am happy he was able to find them and help them and further his research.
Mary Kelly O’Connor: I remembered from reading this book many years ago.
For a long time, I was “mad” at circuses until I realized that they were the only people offering jobs to Cushies and others who should have had a better chance at life.
I know the circuses were exploiting the “freaks” but at least they could find a place in society.
I am so thankful to Dr. Cushing and the work he did…for all of us. I hate the disease but I am so glad that I’m alive after it was discovered and I didn’t have to run away to join a circus, too.
OP: Mary Kelly O’Connor i also am thankful to dr harvey cushing… even though i did read he was sorta an asshole arrogant jerk. Lol. I guess when you are the father of neuroscience you are entitled though…
Mary Kelly O’Connor: My first “real” endo, the one who diagnosed me was that description. But he got me into NIH for surgery and I’m thankful to him, too. (But I never went back after I found another endo. LOL)
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
A guest on the Cushing’s Help message boards asked:
I’ve been searching every possible alternative explanation. I really hoped I just had a Lipoma but GP was pretty confident no.
I’ve gained about 40lbs in the past year, I bruise easily and I have a Buffalo Hump. Cycle is regular, my mood is good, well ya know pandemic, home schooling, owning a business … Lol I don’t think I’m suffering any unusual stress or anxiety though. I am anxious over the time it’s taking to get any info.
I had blood drawn and an upcoming sono, date TBD, but don’t see my GP for 5 wks!
Can I get blood results over ph and skip right to Endocrinologist if Cortisol is high? Any input of speeding this along?
Anyone else with only a few symptoms?
Thanks!
Can you help Ellie out? Please respond here or on the Message boards.
Thanks!
I remember someone on the House TV series trying a stunt like this on the episode titled Deception.
At a betting parlor where House happens to be, a woman collapses and House makes sure she gets to the hospital. He thinks she has Cushing’s syndrome while Cameron starts to think she has Münchausen syndrome, a syndrome at which the patient creates the symptoms of a disease, guaranteeing them attention and sympathy.
Rare Case of Woman Manipulating Saliva Tests to Support Cushing’s Diagnosis
Late-night measures of cortisol levels in saliva may not be all that helpful in diagnosing Cushing’s syndrome, a group of physicians discovered upon learning that a difficult to diagnose patient had manipulated the samples.
Although this behavior is extremely rare, the research team from the University of Calgary in Canada, argued that — when a diagnosis becomes difficult — it may be advisable to confirm suspicions using another and more reliable method that can distinguish natural from synthetic glucocorticoids.
The study, “Factitious ACTH- dependent, apparent hypercortisolism: the problem with late night salivary cortisol measurements collected at home,” was published in the journal Clinical Endocrinology.
The case report described a woman who was admitted to a specialist clinic after two endocrinologists had failed to diagnose what they suspected was cyclic Cushing’s syndrome.
The woman had complained of fatigue and weight gain over the past four years despite weight loss banding surgery, and declined taking steroid medications. The examination did not reveal particular Cushing’s symptoms.
Physicians started an investigation, including overnight dexamethasone suppression tests and late-night salivary cortisol tests, which indicate increased levels of cortisol likely caused by abnormal functioning of the ACTH hormone.
Imaging did not show any suspected lesions in the pituitary and adrenal gland, and all further examinations did not reveal any disease changes that might have contributed to the increased cortisol.
The woman was put on a dopamine agonist. This treatment triggered a loss of eight kilograms (almost 18 lbs) over six months, and the woman said she was satisfied with it. But two late-night cortisol measurement showed continuing high cortisol levels.
When the clinic started using a new type of analysis to measure cortisol, however, findings changed. The new test, which was more sensitive, indicated massively higher doses of cortisol in re-analyzed saliva samples compared to the older results.
The new test could detect synthetic glucosteroids, but could not indicate if synthetic steroids were responsible for the higher levels seen in the retest. So the team used a method called liquid chromatography-tandem mass spectrometry. This technique can identify specific molecules, and revealed that the women had manipulated the samples using prednisone.
The woman’s physician also paid a surprise visit to collect a new saliva sample, which turned out to have normal cortisol levels.
The woman neither denied or confirmed manipulating the samples. And the team was contacted two months later by her new physician, requesting confirmation of her Cushing’s syndrome and details on her case.
The researchers believed the woman most likely has what is known as Munchausen’s syndrome, a mental illness that leads patients to feign physical disease. A 1995 report by the National Institutes of Health showed that 0.7 percent of all people investigated for too high cortisol had this syndrome.
Despite the rarity of this case, the team argued that chemical analysis is a valuable tool for both determining sample manipulation in difficult Cushing’s syndrome cases, or a different potential problem.
They also cautioned against putting too much trust in very elevated late-night cortisol, particularly when the symptoms do not match the cortisol increase.
I would love to take one of the surveys mentioned in this news article. My Cushing’s went into “remission” just over 31 years ago but I still feel the effects of having had it.
Pre-Cushing’s I had no problem working a full day, having a piano studio overflowing with students, going out at night, cleaning the house, being a normal mom.
I could do as I chose – if I wanted to go somewhere, or do something, I just did.
Now, I work part-time and my studio is much smaller. Everything I do is to accommodate my nap schedule. I have to plan everything carefully so I can take my meds on time and be ready to sleep.
Even going to regular doctors is harder, explaining why I take cortisone and growth hormone, why I can’t take whatever meds they want to prescribe.
Discussing with a sports medicine doctor why I should (or shouldn’t) have a cortisone shot in my knee. (I went for it September 12! Now I’ll have to explain to my endo.)
Unfortunately, I also haven’t lost all my Cushing’s weight (probably at least partly my own fault LOL) and I still have to shave my chin every day.
I honestly believed that my kidney cancer was due to my taking growth hormone, which I take because of my pituitary tumor. Now, since I’m back on it, I’m not entirely sure – but who knows what else might be growing? Or maybe the different brand is better for me. Who can say?
What about you? How has your life changed due to Cushing’s?
Info from MaryO
Luckily, AIU posted something on Facebook that gave me the perfect information to share:
They also shared this information, which I already knew and put into good use just yesterday:
Feeling overwhelmed? You’re not alone.
Managing adrenal insufficiency during extreme stress can feel like carrying the weight of the world — but tiny steps rebuild your strength.
We created this simple guide to remind you:
• Rest before exhaustion.
• Stay hydrated and balance your electrolytes.
• Breathe deeply to calm your nervous system.
• Celebrate every small win.
• Listen to your body if you need to stress dose or inject.
You are healing, even now. You are not alone.
Learn more and find community at www.aiunited.org
As a person with secondary adrenal insufficiency, I find often find myself in a situation when I need to stress dose and balance the electrolytes. Many Cushies I know eat salt for this purpose but I don’t like salt. If I’m eating pretzels or something else with removeable salt – i take it off.
I don’t know if I found it by myself on amazon or someone recommended it but I always have a product called – TaDa! – SaltSticks nearby.
Writing this post today, I actually looked at the directions and found that I’m supposed to take 2 at a time. Oops! One does help somewhat. I’m sure that 2 will be even better.
To keep these and my hydrocortisone nearby, in addition to the actual bottles, I got some waterproof pill containers and keep them on my keychain. The wider ones hold 2 of the SaltSticks exactly.
The narrower ones have hydrocortisone and Tylenol. The hydrocortisone is in the red pill container.
All 3 are on one ring which goes onto my larger carabiner clip so that they can be easily moved if necessary.
In my backpack, I have an adrenal insufficiency emergency kit of sorts that I got off ebay. This also includes a bee sting kit. If you want to know why, check out this post. there is also information about my doctor, more hydrocortisone, benadryl, tylenol.
Both the keyring and the emergency kit have MedicAlert tags which include my member number so medics can find out just what I need, my DH number and my doctor’s number.
This info is also on my MedicAlert bracelet. I bought this one years ago to honor Natalie’s memory – this is the same style she wore.
More on MedicAlert bracelets:
Shared with permission from https://aiunited.org/medicalbracelets/
My name is Jeannie, and I have been diagnosed with Secondary AI since March of 2015. To make a long story short, I was diagnosed with a pituitary adenoma in Feb of 2015. It was apron 8mm x 10mm at the time wit was found. On April 25th, 2015 I was getting ready for work in the early morning hours.. I passed out in my bathroom and was immediately rushed to the hospital by my husband. They did a secondary MRI and found that the tumor had tripled in size to 23mm x almost 41mm. My Cortisol was also so low it was undetectable by the lab. I was taken by ambulance to Emory University hospital in Atlanta where the Neurosurgeon I had been in consult with was. I arrived there on Sunday and was in Surgery Wednesday Morning. The surgery took 9 hours and recovery was close to 6.
Prior to this all taking place I was a volunteer firefighter, and had worked EMS for almost 16 years. I have been in nearly every situation possible. I see so many people that have our condition asking about Medic Alert bracelets, What kind they should have, what it should say on it, etc. So I have put together a short list to help out a little bit. This is coming from both someone who has this extremely rare disease, and also from the Emergency Medical Side of me. Knowing what We as medics look for in the field, How quickly things move, what we ask or need to know, etc.
Please know that this IS NOT Professional Medical advice, But this is advice coming from someone who can shed some light on how to potentially save your life if you should ever be alone, or without anyone who knows your condition and you fall unconscious or are unable to the the responders what your condition is.
First off if you are looking for a medic alert bracelet or wondering if you should get one.
Here are some of those reasons and some pointers on what they should look like / what they should say.
#1– If you are found unconscious, and there are not bystanders around to tell emergency crews what is wrong with you, You will go longer without your steroids. If we see on your bracelet that you are steroid dependent, it dissolves the ENTIRE guessing game of why you’re unconscious.
#2– It should have on there your emergency contact and a GOOD telephone number. That way if nothing else. We can call them. NOT EVERY EMS AGENCY HAS ACCESS TO THE “CLOUD” BASED SYSTEMS THAT STORE YOUR INFO. Please be sure that if your emergency contacts number changes.. You change it on your bracelet. There is nothing worse than wasted time calling a number that doesn’t belong to the person we NEED to talk to.
#3– DO NOT MAKE IT “PRETTY” OR “NOT SO OBVIOUS”. I can not stress this enough. Ladies I know that you want the cute ones that look like normal bracelets, and have pretty charms, etc on them… THE ENTIRE point of a medical alert bracelet is that someone needs to see it and know that they should look at it. If it looks like a regular bracelet or regular necklace and it isn’t obvious within the first 3 seconds once we get to you and look in the obvious places (neck/wrist). it will NOT get seen. I promise you, we are too busy trying to play the guessing game of why you are not responding, than to take a look at every single piece of regular jewelry and see if it might have a really small inscribing of what is wrong with you. Once again. Make it noticeable. We will see that we need to look at it. Once we do. The guessing game is more than likely OVER. and we can begin to treat you appropriately.
#4– Most EMT’s and Paramedics Don’t Understand or know about Addisons or the treatment involved. If nothing else, carry a letter from your doctor explaining what is wrong with you, etc. It is very rare, and NOT covered in most Paramedic courses. So please, for those of you that put “ADRENAL INSUFFICIENT” on your bracelet and NOT “STEROID DEPENDENT” please keep in mind that you may end up with the Paramedic that just graduated, is nervous, and will mistake adrenal insufficiency for Adrenaline insufficiency.. and try to give you epinephrine. Please understand that I have seen this almost happen. It is something that is easily misunderstood in the heat of the moment.
#5– If you have an emergency injection that you carry with you all the time, on your person, or somewhere close. PUT ON THERE THAT YOU HAVE IT! MOST ems agencies have standing protocol that they can assist with emergency medications (Don’t jump in here if you are one of those states that doesn’t allow it.. I said most) That way if we find you down, and look at your bracelet, AND see that you have emergency meds with you… guess what now, not only is the guessing game over, You’re ALSO getting the RIGHT EMERGENCY MEDS, instead of us having to either give you what we carry, or you having to wait until you get to the ER and the ER doc has to go through your file and figure out that you need the medication that’s been in your pocketbook the ENTIRE TIME.If you are unsure if your state allows this, or if you Local EMS agency can do this. Contact their local medical control and ask. If they do, Please offer to give a small talk on what the disease is and how to use the emergency kit. Most will know once they see the acto-vial, but if they do not, Please educate them. Explain to them that it can be the only thing that could save your life.
Please take the time and make sure that you have correct information on your bracelet. Secondary or Primary, the treatment in an Emergency situation is the same. So there is NO need for you to spell out if you are secondary or primary. Both get the emergency injection in case of a crisis. Both get fluid bolus, heart and blood pressure monitoring. Nothing is different when it comes to an emergency situation. If you have any questions on the wording or what to get on it. Be sure you at least have an emergency contact, That you are steroid dependent, and where your emergency injection is located.
IF you know that your local EMS agency uses the “cloud” for stored emergency info, you can spend the money to get it. But I worked for service that covered a county with over 100 sq miles, and we didn’t use it. It is unreliable and takes too much time to log in to the system, try to read the small number on your band, type it in, etc. When you can simply put the information on the band itself.
The image below sure looks like it was made by Sandra Boynton but I got it from another page on Facebook.
These tips are good for anyone who needs a little self-care – not just people with adrenal insufficiency!
What do you do for self care? Please tell me in the comments.
Didn’t we all do this?
A young woman saved her own life after successfully self-diagnosing cancer/Cushing’s that doctors had missed because she researched her own worrying symptoms on TikTok.
Cleo Lambert, from Tring in Hertfordshire, had been unknowingly living with a cancerous tumour growing behind her liver for years.
Her life started to fall apart two-and-a-half years ago when her GP was unable to provide answers to the painful symptoms she was suffering.
However, this all changed when the prospective fashion student undertook a TikTok scrolling session in the summer of 2024 and noticed a post which told her she may have a rare condition called Cushing’s Syndrome.
The 21-year-old undertook a TikTok scrolling session in the summer of 2024 and noticed a post which told her she may have a rare condition called Cushing’s syndrome.
Her findings prompted doctors to order an X-ray, which revealed a 17cm cancerous mass had been growing inside the 21-year-old.
It was surgically removed and she immediately began life-saving chemotherapy.
Due to the size of the growth, medics told her that without the operation that year, she would not have survived.
Cleo’s findings prompted doctors to order an X-ray, which revealed a 17cm cancerous mass had been growing inside her.
“Doctors told me the tumours are ‘usually between 3-4cm, 5cm is more serious.'”, she told the Female Lead.
“They told me that mine had likely been growing for years and there was a chance it could even be cancerous.”
“A doctor also told me I’d probably saved a year of time based on how long a Cushing’s diagnosis could typically take. I think if I’d waited another year, with the size the tumour already was, I’d be dead.”
In the two-and-a-half years prior, Cleo had suffered from painful bouts of bloating after eating and had been putting on weight.
Cleo was seeing her usually thick locks of hair thinning at a rapid rate.
GPs initially told her she had polycystic ovary syndrome, a common hormonal disorder affecting women that was not curable but manageable through lifestyle choices.
But Cleo’s health continued to decline further and new symptoms – such as irregular periods, exhaustion and unexplained bruising – left her unable to leave her own house.
Desperate to find out what was wrong with her, Cleo managed to get a endocrinologist appointment booked in, but had 12 weeks to wait until she saw them.
It was during that period that Cleo undertook some research on the social media platform and found she had Cushing’s Syndrome – a rare condition caused by prolonged exposure to the stress hormone cortisol in the body.
“I saw a video that said: ‘Do you have these symptoms?’ and it listed extra weight around the stomach, a puffy face, exhaustion, hair loss, excessive hair growth in unusual places. I was reading a checklist of my life,” Cleo told the Female Lead.
“In the comments, people mentioned something called Cushing’s syndrome. I Googled it and immediately knew: this was me.”
Cleo ended up going down a “researching rabbit hole” into a “corner of health” she had never heard of before.
Armed with a mountain of research, Cleo went to her appointment in July 2024 and presented her theory, which the doctor agreed with.
Tests showed her cortisol levels were absurdly high, measuring at 1,334 nmol/l on one measure, where the normal level is around 135 nmol/l.
But more shockingly, X-rays revealed that Cleo had a 17cm tumour, the size of an aubergine, pushing up against her stomach and growing into her liver.
Cleo’s symptoms first started appearing after she returned home from travelling around Australia in the summer of 2022.
Despite being a regular gym goer and healthy eater, she was gaining weight easily and seeing her usually thick locks of hair become a lot thinner.
After being told she had PCOS, Cleo started to make changes to her lifestyle to see it it would help.
“I blamed the contraceptive pill and stopped taking it, but nothing changed,” She said.
“The doctors told me I had PCOS which I could manage it with diet and lifestyle changes. I cut out coffee, reduced carbs, stuck to low-impact exercise.”
But Cleo’s symptoms only got worse and things started to spiral in February 2024.
“My periods were irregular, I felt exhausted all the time, and I was getting strange new symptoms,” she said.
“I was getting nosebleeds, unexplained bruising, stretch marks spread across my body, appearing even from stretching after workouts.”
Alarm bells began to sound even louder when Cleo’s freshly inked tattoo left her arm with bruising on it for weeks, something which had never happened before.
She had been hoping to start university that summer, but her rapid health decline had left her not wanting to leave the house.
“The most frustrating part was not having any answers,” she said.
“No one said I looked different except my older sister, and I appreciated her honesty.
“I was desperate for answers. I felt like I was in someone else’s body and I knew there was something wrong, but felt helpless not understanding what it was.”
But thanks to her TikTok diagnosis, Cleo’s chemo treatment finishes this month and she is hopeful of going on holiday this summer and potentially go to university this September, a year later than planned.
As well as being grateful to the helpful content regarding her symptoms, Cleo also praised TikTok for enabling her to connect with other young woman and girls who were suffering from Cushing’s Syndrome.
“TikTok has played another role in my health journey. It helped me connect with a girl who’d been through almost the exact same thing – first misdiagnosed with PCOS, then later discovering she had Cushing’s too.
“Finding people my age going through similar experiences has been incredibly reassuring.
“While the UK’s National Health Service website is helpful, nothing compares to hearing real stories from creators on TikTok who are living it.
“I’d often reach out to them directly with specific questions, and those conversations gave me reassurance that medical information alone couldn’t.
“If you’d told me everything I was about to go through, I would’ve shit myself. But going from diagnosis to operation in two months meant there was no time to overthink, which was a weird kind of blessing.
“So, if you think something is wrong, trust your gut. You know what is normal for you. Keep pushing for answers. And keep scrolling on TikTok.”
For photos see: https://www.lbc.co.uk/news/health/tiktok-saved-my-life-student-life-threatening-tumour/