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✍️ TikTok Saved My Life: Student Discovers Life-threatening Tumour After Self-diagnosing Rare Condition

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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/

🦓 Day 28, Cushing’s Awareness Challenge

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People sometimes ask me how I found out I had Cushing’s Disease.  Theoretically, it was easy.  In practice, it was very difficult.

In 1983 I came across a little article in the Ladies Home Journal which said: “If you have these symptoms…”

I found the row with my symptoms and the answer read “…ask your doctor about Cushing’s”.

After that article, I started reading everything I could on Cushing’s, I bought books that mentioned Cushing’s. I asked and asked my doctors for many years and all of them said that I couldn’t have it.  It was too rare.  I was rejected each time.

Due to all my reading at the library, I was sure I had Cushing’s but no one would believe me. My doctors would say that Cushing’s Disease is too rare, that I was making this up and that I couldn’t have it.

In med school, student doctors are told “When you hear hoofbeats, think horses, not zebras“.

According to Wikipedia: “Zebra is a medical slang term for a surprising diagnosis. Although rare diseases are, in general, surprising when they are encountered, other diseases can be surprising in a particular person and time, and so “zebra” is the broader concept.

The term derives from the aphorism “When you hear hoofbeats behind you, don’t expect to see a zebra”, which was coined in a slightly modified form in the late 1940s by Dr. Theodore Woodward, a former professor at the University of Maryland School of Medicine in Baltimore.  Since horses are the most commonly encountered hoofed animal and zebras are very rare, logically you could confidently guess that the animal making the hoofbeats is probably a horse. By 1960, the aphorism was widely known in medical circles.”

So, doctors typically go for the easily diagnosed, common diseases.  Just because something is rare doesn’t mean that no one gets it.  We shouldn’t be dismissed because we’re too hard to diagnose.

When I was finally diagnosed in 1987, 4 years later, it was only because I started bleeding under the skin. My husband made circles around the outside perimeter each hour with a marker so my leg looked like a cut log with rings.

When I went to my Internist the next day he was shocked at the size of the rings. He now thought I had a blood disorder so he sent me to a Hematologist/Oncologist.

Fortunately, that new doctor ran a twenty-four-hour urine test and really looked at me and listened to me.  Both he and his partner recognized that I had Cushing’s but, of course, couldn’t do anything further with me.  They packed me off to an endo where the process started again.

My final diagnosis was in October 1987.  Quite a long time to simply  “…ask your doctor about Cushing’s”.

Looking back, I can see Cushing’s symptoms much earlier than 1983.  But, that ‘s for a different post.

🦓 Day 23, Cushing’s Awareness Challenge

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bestday

I wrote parts of this in 2008, so all the “yesterdays” and “last weeks” are a little off. 

Wow.  That’s about all I can say.  Yesterday was possibly the best day of my life since I started getting Cushing’s symptoms, and that was over 30 years ago.  More than a quarter of a century of feeling exhausted, fatigued.  A quarter of my life spent taking naps and sleeping.

Last week  in this post I wrote in part:

I went to the endo yesterday.  Nothing has changed for me.  Nothing will.  He wants me to take more cortef.  I don’t want to gain weight again.  He looked up Provigil and it’s not indicated for panhypopituitarism.  So he won’t prescribe it.  My kidney surgeon probably won’t let me take, anyway, but it was worth a try.

…

He did mention that in “only” 2.5 years maybe I can go back on growth hormone.  I don’t want to live like this another year let alone 2.5.  But then, when I was on GH before it didn’t help me like it helps most everyone else.

I’m tired of catering to a kidney that may or may not fail sometime anyway, tired of being so exhausted all the time.  I feel like I’ve lost nearly half my life to this Cushing’s stuff already.

So, yesterday I was supposed to go to a conference on web design for churches.  My church sent me because they want me to spiff up their site and make them a new one for Christmas.  I wanted to go because, well, I like learning new stuff about the web.  I figured that I would learn stuff that would also be useful to me in others of my sites.

And I did!

But the amazing thing is this.  My son had told me  about a medication that was very similar to Provigil, that he had tried it while he was writing his doctoral thesis and it had helped him.

So, having tried the official doctor route and being rebuffed – again – I had decided to try this stuff on my own.

Just the night before I had written a response on Robin’s wonderful blog that reads in part:

I hate this disease, too.

I was just talking to a friend today about how I’d try nearly anything – even if it ruined my one remaining kidney – to have a few days where I felt good, normal, where I could wake up in the morning rested and be able to have energy for the day.

I want to go out and have fun, to be able to drive for more than 45 minutes without needing to rest, to be have people over for dinner, whatever. I hate being restricted by my lack of energy.

My endo says to cheer up. In two and a half years I can try the growth hormone again. Whoopee. Didn’t work the first time and maybe gave me, or contributed to, cancer growth. Why would I want to look forward to trying that again?

I want to feel good now. Today.

I hate that this disease kills but I also hate that it’s robbed me of half my life already.

I wish doctors would understand that even though we’ve “survived”, there’s no quality of life there.

I hate Cushing’s. It robs so much from so many of us. 🙁

As I said earlier, I have a history of daily naps of at least 3 hours a day.  It cuts into everything and prevents me from doing many things.  I have to schedule my life around these naps and it’s awful.

rockford-2006-sue 12-18-2006 2-09-18 pmA few years ago I went on a Cushie trip to Rockford.  I’ve been there a few times and it’s always so much fun.  But this first year, we were going to another Cushie’s home for barbecue.  I didn’t drive, I rested in the back of the car during the drive.  We got there and I managed to stay awake for a little while.  Them I put my head down on the dining room table and fell asleep. Our hostess kindly suggested that I move over to the sofa.

So, I have a long history of daily naps, not getting through the day, yadda, yadda.

So, I was a little nervous about yesterday.  I really wanted to go to this conference, and was afraid I’d have to go nap in my car.

I got up at 5:30 am yesterday.  Before I left at 7:15, I took my Cortef and then I took my non-FDA approved simulated Provigil.  (Although it’s not FDA approved, it is not illegal to possess without a prescription and can be imported privately by citizens)

I stayed awake for the whole conference, went to a bell rehearsal, did Stacey’s interview, had dinner and went to bed about 10:30PM.  NO NAP!  I did close my eyes a little during the 4:00PM session but it was also b-o-r-i-n-g.

I stayed awake, I enjoyed myself, I learned stuff, I participated in conversations (completely unlike shy me!).

I felt like I think normal people feel.  I was amazed.  Half my life wasted and I finally (thank you Michael!) had a good day.

My kidney doctor and my endo would probably be appalled but it’s about time that I had some life again!  Maybe in another 25 years, I’ll take another pill.  LOL

Well, the energy from the Adrafinil was a one day thing.  I felt great on Thursday.   Friday and Saturday I slept more than usual.  Saturday, today, was one of those days where I sleep nearly all day.  Maybe if I took the drug more it would build up in my system, maybe not.  But it was still worth having that one day where I felt what I imagine normal to be.

While I was being a slug today, my husband painted the entire house.

I’m not sure if I would have been this tired today or if I was somehow making up for the nap I didn’t get on Thursday.  Whatever the case, I’m glad that I had the opportunity to try this and to experience the wonderful effects, if only for one day.

Information from a site that sells this:

Alertness Without Stimulation

Adrafinil is the prototype of a new class of smart drug – the eugeroics (ie, “good arousal”) designed to promote vigilance and alertness. Developed by the French pharmaceutical company Lafon Laboratories, adrafinil (brand name, Olmifon) has been approved in many European countries for treating narcolepsy, a condition characterized by excessive daytime sleepiness and other unusual symptoms.

Non-narcoleptic users generally find that adrafinil gives them increased energy and reduces fatigue, while improving cognitive function, mental focus, concentration, and memory. It has been reported that quiet people who take adrafinil become more talkative, reserved people become more open, and passive people become more active.

Of course, many stimulant drugs, ranging from caffeine to methamphetamine, are known to produce similar alerting/energizing effects. Adrafinil has been described by some users as a “kinder, gentler” stimulant, because it provides these benefits but usually with much less of the anxiety, agitation, insomnia, associated with conventional stimulants.

Adrafinil’s effects are more subtle than those of the stimulants you may be used to, building over a period of days to months. They appear to be based on its ability to selectively stimulate 1-adrenergic receptors in the brain.2 These receptors normally respond to norepinephrine (noradrenaline), a neurotransmitter linked to alertness, learning, and memory. This is in contrast to conventional stimulants, which stimulate a broader spectrum of brain receptors, including those involving dopamine. Its more focused activity profile may account for adrafinil’s relative lack of adverse side effects.

There’s more info about Adrafinil on Wikipedia

It’s interesting that that snipped report that people become more talkative.  I reported that in the original post, too, even though I didn’t realize that this was a possibility.

A good quote that I wish I could relate to better:

“Time is limited, so I better wake up every morning fresh and know that I have just one chance to live this particular day right, and to string my days together into a life of action and purpose.”

Lance Armstrong (1971 – )
Cyclist, seven-time Tour de France champion and cancer survivor

2011 stuff starts here:

Awhile ago I went to a handbell festival. I took a bit of adrafinil on the main day to try to stay awake for the whole day. It didn’t seem to keep me as on as it did before. I can’t be used to it already. Maybe I’m just that much more tired than I was before.

Our son lives in New York and every few years he gives us tickets to see a Broadway show.  A couple years ago we took the train to NY to see Wicked.  Usually my DH wants to go out and see sights while we’re there.  I usually want to nap.

This time we got up on Saturday morning, went out for breakfast.  I wanted to take in the whole day and enjoy Wicked so I took some Adrafinil.  We got back to the hotel and got ready to go to a museum or other point of interest.

But, DH wanted to rest a bit first.  Then our son closed his eyes for a bit…

So, I found myself the only one awake for the afternoon.  They both work up in time for the show…

Sigh  It was a great show, though.

A recent Christmas I was going to get my son some Adrafinil as a gift.  The original place we bought it didn’t have any more stock so I tracked it down as a surprise.  He was going to give me some, as well, but couldn’t get it from the original source, either.  So he found something very similar called Modafinil.  GMTA!

And 2016..

Saturday, 4/23/16 really was one of the best days I’ve had in a long time.

I’ll be writing a longer post about that later on my travel blog but here’s the original plan: https://maryoblog.com/2016/04/23/busy-saturday/

Suffice it to say, we arrived at the Tattoo and I got no nap at all, all day!

IMG_0936

IMG_0940

2021, I had the bestest ever day…


and, surpassing that:

Myth: “All Cushing’s patients have the exact same symptoms

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Myth: “All Cushing’s patients have the exact same symptoms and the level of illness is the same for everyone. If you do not have ALL of the classic symptoms of Cushing’s, then you must NOT have Cushing’s Syndrome/Disease!”

myth-busted

Fact: Everyone does NOT have the exact same symptoms. Not all Cushing’s patients are exactly the same. This is one mistake that non experts tend to make in terms of categorizing patients by whether they meet the exact same classic symptoms or not. Experts have come to learn that each patient should be treated individually. Though there are symptoms that are more prominent in the Cushing’s population, not every patient has to meet every single symptom in order to meet criteria for Cushing’s.

For instance, not all Cushing’s patients become overweight. Everyone does not gain the same amount of weight. There are various theories as to why. One issue is that different patients are diagnosed at different stages of the illness. We know that patients tend not to be diagnosed at the onset of the illness because of doctors’ misconception that Cushing’s patients must be extremely obese to have the disease. So, patients who have not gained as much weight may not be listened to until after the weight has gotten out of control. However, there ARE patients who are diagnosed early enough where there has not been a tremendous amount of weight gain.

I (Karen Ternier Thames), for one, started trying to get help after gaining my first 30 pounds because I KNEW that something was wrong with my body. Had I received an appropriate diagnosis, I probably would not have gained the 150 pounds I ended up gaining in 5 years.

Regardless of the reason, it is a myth that all Cushing’s patients gain the same amount of weight. The following are other additional reasons that an endocrinologist gave me for supposedly not meeting the criteria for Cushing’s when I was misdiagnosed: “1. Your stretch marks are not purple enough”, 2. “Your buffalo hump is not large enough”, 3. “You are not THAT fat!”, 4. “Cushing’s patients do NOT have children”, and 5. ” your face does not look like a classic moon face”. These are some of the reasons why, 2 years earlier, this same doctor dismissed apparently high cortisol levels, and didn’t even tell me, leading to several more years of suffering!

So, not all Cushing’s patients are obese, not all Cushing’s patients gain the same weight at the same rate, not all Cushing’s patients have the same size buffalo hump or the same round moon face. There are variations in these symptoms. IF you are experiencing extreme changes in your body regardless of diet and exercise and its not influenced by external factors, then it is time to speak up!

It is important to raise concern with your doctor if you do have ANY Cushing’s symptoms. Please do not be inhibited if you do not show every single symptom!

🦓 Day 13, Cushing’s Awareness Challenge

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UVA 2004
Cushing’s Conventions have always been special times for me – we learn a lot, get to meet other Cushies, even get referrals to endos!

As early as 2001 (or before) my pituitary function was dropping.  My former endo tested annually but did nothing to help me with the symptoms.

In the fall of 2002 my endo refused to discuss my fatigue or anything at all with me until I lost 10 pounds. He said I wasn’t worth treating in my overweight condition and that I was setting myself up for a heart attack. He gave me 3 months to lose this weight. Those 3 months included Thanksgiving, Christmas and New Years.  Needless to say, I left his office in tears, again.

Fast forward 2 years to 2004.  I had tried for a while to get my records from this endo. He wouldn’t send them, even at doctors’ or my requests.

I wanted to go see Dr. Vance at UVa but I had no records so she wouldn’t see me until I could get them.

Finally, my husband went to the former endo’s office and threatened him with a court order. The office manager managed to come up with about 13 pages of records. For going to him from 1986 to 2001 including weeks and weeks at NIH and pituitary surgery, that didn’t seem like enough records to me.

In April of 2004, many of us from the message boards went to the UVa Pituitary Days Convention. That’s where the picture above comes in.  Other pictures from that convention are here.

By chance, we met a wonderful woman named Barbara Craven. She sat at our table for lunch on the last day and, after we learned that she was a dietitian who had had Cushing’s, one of us jokingly asked her if she’d do a guest chat for us. I didn’t follow through on this until she emailed me later. In the email, she asked how I was doing. Usually I say “fine” or “ok” but for some reason, I told her exactly how awful I was feeling.

Barbara emailed me back and said I should see a doctor at Johns Hopkins. I said I didn’t think I could get a recommendation to there, so SHE referred me. The doctor got right back to me, set up an appointment. Between his vacation and mine, that first appointment turned out to be Tuesday, Sept 14, 2004.

Just getting through the maze at Johns Hopkins was amazing. They have the whole system down to a science, moving from one place to another to sign in, then go here, then window 6, then… But it was very efficient.

My new doctor was wonderful. Understanding, knowledgeable. He never once said that I was “too fat” or “depressed” or that all this was my own fault. I feel so validated, finally.

He looked through my records, especially at my 2 previous Insulin Tolerance Tests (ITT). From those, he determined that my growth hormone has been low since at least August 2001 and I’ve been adrenal insufficient since at least Fall, 1999 – possibly as much as 17 years! I was amazed to hear all this, and astounded that my former endo not only didn’t tell me any of this, he did nothing. He had known both of these things – they were in the past records that I took with me. Perhaps that was why he had been so reluctant to share copies of those records. He had given me Cortef in the fall of 1999 to take just in case I had “stress” and that was it.

The new endo took a lot of blood (no urine!) for cortisol and thyroid stuff. I went back on Sept. 28, 2004 for arginine, cortrosyn and IGF testing.

He said that I would end up on daily cortisone – a “sprinkling” – and some form of GH, based on the testing the 28th.

For those who are interested, my new endo was Roberto Salvatori, M.D.
Assistant Professor of Medicine at Johns Hopkins

Medical School: Catholic University School of Medicine, Rome, Italy
Residency: Montefiore Medical Center
Fellowship: Cornell University, Johns Hopkins University
Board Certification: Endocrinology and Metabolism, Internal Medicine

Clinical Interests: Neuroendocrinology, pituitary disorders, adrenal disorders

Research Interests: Control of growth hormone secretion, genetic causes of growth hormone deficiency, consequences of growth hormone deficiency.

Although I have this wonderful doctor, a specialist in growth hormone deficiency at Johns Hopkins, in November, 2004, my insurance company saw fit to over-ride his opinions and his test results based on my past pharmaceutical history! Hello??? How could I have a history of taking GH when I’ve never taken it before?

Of course, I found out late on a Friday afternoon. By then it was too late to call my case worker at the drug company, so we had to appeal on Monday. My local insurance person also worked on an appeal, but the whole thing was just another long ordeal of finding paperwork, calling people, FedExing stuff, too much work when I just wanted to start feeling better by Thanksgiving.

As it turned out the insurance company rejected the brand of hGH that was prescribed for me. They gave me the ok for a growth hormone was just FDA-approved for adults on 11/4/04. The day this medication was approved for adults was the day after my insurance said that’s what is preferred for me. In the past, this form of hGH was only approved for children with height issues. Was I going to be a guinea pig again?

The new GH company assigned a rep for me, submitted info to pharmacy, and waited for insurance approval, again.

I finally started the Growth Hormone December 7, 2004.

Was the hassle and 3 year wait worth it?

Stay tuned when all will be revealed.

Thanks for reading 🙂

MaryO

Myth: Cushing’s Syndrome/Disease can be healed or cured

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Myth: Cushing’s Syndrome/Disease can be healed or cured through change in diet or exercise.

myth-busted

Fact: NO! Caloric intake or lack of exercise has NO impact on weight gain and/ or loss in persons with Cushing’s.

Saying that someone “cheated” on their diet may seem reasonable to some as a reason for weight gain but I assure you that a candy bar or a piece of pie does not make a person with Cushing’s gain weight or get sick. Excess cortisol is the reason for Cushing’s symptoms. Treating the disease is the only way to alleviate symptoms.

The first line of treatment with the highest rate of remission is currently surgery to remove the tumor (s) from the pituitary, adrenal gland, or ectopic source.

Behind High Blood Pressure and Anxiety, a Hidden Diagnosis: The Overlooked Rise of Adrenal Disorders

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April marks Adrenal Awareness Month, a national initiative focused on a group of hormonal disorders that are frequently overlooked, often misdiagnosed, and in some cases life-threatening if left untreated. Many adrenal disorders present with symptoms that mimic common conditions—such as high blood pressure, anxiety, weight gain, or fatigue—leading patients to go undiagnosed for years.

Adrenal Awareness Month expands its focus to spotlight a broader range of adrenal disorders, including Cushing’s syndrome, pheochromocytoma, Conn’s syndrome, and adrenal cancer. Each condition will be featured throughout the month, offering targeted education, resources, and increased visibility for these complex and often overlooked diseases.

Cushing’s syndrome results from prolonged exposure to elevated cortisol levels, often caused by adrenal or pituitary tumors. Symptoms can include rapid weight gain, particularly in the face and abdomen, thinning skin, muscle weakness, and high blood pressure—features that frequently overlap with more common conditions, delaying diagnosis. Pheochromocytoma is a rare but potentially life-threatening tumor of the adrenal glands that causes excessive release of catecholamines, including adrenaline. This can lead to sudden episodes of severe high blood pressure, headaches, rapid heart rate, sweating, and anxiety or panic-like symptoms. Because these episodes can occur unpredictably, diagnosis is often challenging. When properly identified, however, pheochromocytoma is highly treatable, particularly with specialized surgical care. Conn’s syndrome (primary hyperaldosteronism) is a leading but often unrecognized cause of secondary hypertension. Studies suggest that up to 10% of patients with high blood pressure may have an underlying hormonal cause such as Conn’s syndrome—yet many remain undiagnosed. The condition occurs when an adrenal tumor produces excess aldosterone, causing the body to retain sodium and lose potassium. This imbalance can lead to persistent high blood pressure, fatigue, muscle weakness, and increased cardiovascular risk. Because these symptoms often overlap with more common conditions, Conn’s syndrome is frequently overlooked or misdiagnosed.

“Adrenal disorders often present with symptoms that overlap with more common conditions, which is why they can go unrecognized for years,” said Tobias Carling, MD, PhD, FACS. “The challenge is that these are not just complex conditions—they can be serious and even life-threatening if missed. The good news is that many are highly treatable, and in some cases curable, when diagnosed early.” Early diagnosis and expert surgical treatment can be life-changing—and in many cases, curative.

Dr. Carling and his team operate at the Hospital for Endocrine Surgery, home to the highest-volume endocrine surgery program in the world.Adrenal conditions are frequently overlooked, leaving patients to manage symptoms such as hypertension, fatigue, anxiety, or metabolic changes without identifying the underlying cause. Increasing awareness and encouraging appropriate screening are critical steps toward improving diagnosis and treatment outcomes.

Individuals experiencing persistent high blood pressure, unexplained weight changes, episodic anxiety, or abnormal potassium levels are encouraged to speak with their physician about further evaluation. Direct-to-consumer testing options, including specialized adrenal panels, are also available through providers such as Any Lab Test Now.

To further elevate awareness and bring a human perspective to these conditions, former patients of the Hospital for Endocrine Surgery are invited to share their personal stories. By visiting:
https://hospital-for-endocrine-surgery.boast.io/form/conns-awareness-day
patients can contribute their experiences—helping others better understand symptoms, treatment journeys, and life-changing outcomes associated with adrenal disorders.

“It is our hope to amplify the voices of those who have experienced these conditions firsthand,” Dr. Carling added. “By sharing these stories, we can help others recognize symptoms earlier, seek appropriate care, and ultimately improve outcomes for patients worldwide.”

Throughout April, patients, providers, and advocates are encouraged to participate, share information, and help bring long-overdue visibility to adrenal health.

About the Carling Adrenal Center
Founded by Dr. Tobias Carling, a global leader in adrenal gland surgery, the Carling Adrenal Center is an international destination for the surgical treatment of adrenal tumors. After nearly 20 years at Yale University—including seven years as Chief of Endocrine Surgery—Dr. Carling founded the center in 2020. Today, it performs more adrenal operations than any other hospital in the world. Learn more at www.adrenal.com or call (813) 972-0000.

About Hospital for Endocrine Surgery
The Hospital for Endocrine Surgery, a campus of HCA Florida South Tampa Hospital, specializes in the diagnosis and surgical treatment of thyroid, parathyroid, and adrenal tumors. The hospital is dedicated to compassionate, patient-centered care and is recognized as the nation’s highest-volume center for endocrine tumor treatment. Learn more at www.hospitalforendocrinesurgery.com.

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From https://www.registerguard.com/press-release/story/51335/behind-high-blood-pressure-and-anxiety-a-hidden-diagnosis-the-overlooked-rise-of-adrenal-disorders/

🦓 Day 2, Cushing’s Awareness Challenge

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The Seven Dwarves of Cushing's

So, these are only seven of the many, many symptoms of Cushing’s.  I had those above – and I often felt like I looked like one of those little bearded dwarves.

Cushing’s affects every part of the body.  It’s not like when I had kidney cancer and only the kidney was affected.


Here are some of the many areas affected.

  • Progressive obesity and skin changes
  • Weight gain and fatty tissue deposits, particularly around the midsection and upper back, in the face (moon face) and between the shoulders (buffalo hump). Some symptoms such as sudden weight gain, are caused by excess cortisol. The excess cortisol in the body does not increase protein and carbohydrate metabolism. It slows or nearly disables metabolism function, which can cause weight gain (fat accumulation) in the buttocks, abdomen, cheeks, neck, or upper back.
  • Loss of muscle mass. Some areas of the body, such as the arms and legs, will remain thin.
  • Pink or purple stretch marks (striae) on the skin of the abdomen, thighs, breasts and arms
  • Thinning, fragile skin that bruises easily
  • Slow healing of cuts, insect bites and infections
  • Acne

Women with Cushing’s syndrome may experience:

  • Thicker or more visible body and facial hair (hirsutism)
  • Irregular or absent menstrual periods

Men with Cushing’s syndrome may experience:

  • Decreased libido
  • Decreased fertility
  • Erectile dysfunction

Other signs and symptoms include:

  • Fatigue
  • Muscle weakness
  • Depression, anxiety and irritability
  • Loss of emotional control
  • Cognitive difficulties
  • New or worsened high blood pressure
  • Glucose intolerance that may lead to diabetes
  • Headache
  • Bone loss, leading to fractures over time
  • Hyperlipidemia (elevated lipids – cholesterol – in the blood stream)
  • Recurrent opportunistic or bacterial infections
Think you have Cushing’s?  Get to a doctor and don’t give up!


         

🦓 Day 1: Cushing’s Awareness Challenge

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April is always Cushing’s Awareness Challenge month because Dr. Harvey Cushing was born on April 8th, 1869.

30-posts

Thanks to Robin for this wonderful past logo!  I’ve participated in these 30 days for Cushing’s Awareness several times so I’m not quite sure what is left to say this year but I always want to get the word out when I can.

As I see it, there have been some strides the diagnosis or treatment of Cushing’s since last year.  More drug companies are getting involved, more doctors seem to be willing to test, a bit more awareness, maybe.

 

April Fool's Day

How fitting that this challenge should begin on April Fool’s Day.  So much of Cushing’s  Syndrome/Disease makes us Cushies seem like we’re the April Fool.  Maybe, just maybe, it’s the doctors who are the April Fools…

Doctors tell us Cushing’s is too rare – you couldn’t possibly have it.  April Fools!

All you have to do is exercise and diet.  You’ll feel better.  April Fools!

Those bruises on your legs?  You’re just clumsy. April Fools!

Sorry you’re growing all that hair on your chin.  That happens as you age, you know.  April Fools!

Did you say you sleep all day?  You’re just lazy.  If you exercised more, you’d have more energy. April Fools!

You don’t have stretch marks.  April Fools!

You have stretch marks but they are the wrong [color/length/direction] April Fools!

The hump on the back of your neck is from your poor posture. April Fools!

Your MRI didn’t show a tumor.  You couldn’t have Cushing’s. April Fools!

This is all in your mind.  Take this prescription for antidepressants and go home.  April Fools!

If you have this one surgery, your life will get back to normal within a few months. April Fools!

What?  You had transsphenoidal surgery for Cushing’s?  You wasted your time and money. April Fools!

I am the doctor.  I know everything.  Do not try to find out any information online. You could not have Cushing’s.  It’s too rare…  April FOOL!

All this reminds me of a wonderful video a message board member posted a while ago:

 

 

So now – who is the April Fool?  It wasn’t me.  Don’t let it be you, either!

Basics: What Is Moon Face?

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Medically reviewed by Daniel More, MD

You may notice that your face appears puffy or more round on certain days. This can happen as your weight and hormones fluctuate or when you experience allergies or a temporary illness. However, if the puffiness persists or if your facial swelling is severe, this may be a sign of moon face—a condition that causes your face to become rounder due to fluid buildup.

Symptoms

Moon face causes swelling in your face as a result of excess fluid buildup. You may notice extra puffiness in your cheeks, forehead, and chin. When your facial features enlarge, it creates a round shape that mimics the look of the moon—hence the name, “moon face.”

It’s important to pay attention to the way your face feels. Sometimes, moon face is mild and not easily noticeable. But other times, moon face can be painful or affect your breathing. Keep track of any pain and swelling you’re experiencing. Before seeing a healthcare provider, it can also help to document the following:

  • What pain you’re feeling
  • Where the pain is located
  • When your swelling began
  • What improves and worsens your pain and swelling
  • Any other symptoms that accompany puffiness

These notes can help your healthcare provider understand the severity of your symptoms and recommend appropriate treatment options.

Causes

A variety of factors can cause moon face—ranging from mild everyday reactions to more serious conditions.

Infections

Underlying infections and medical conditions can cause facial swelling and increase your risk of moon face. These include:

  • Conjunctivitis, or “pink eye”
  • Infection in your salivary glands (the glands that produce saliva)
  • Sinusitis, or swelling of your sinuses
  • Styes that cause swelling around your eye
  • Tooth abscesses, or infections in your teeth that cause a pocket of pus
  • Cellulitis, a type of bacterial skin infection

Cushing’s Syndrome

Among the most common causes of moon face is Cushing’s syndrome—a condition that occurs when your body makes too much cortisol, which is commonly referred to as the “stress hormone.” One of the most common symptoms of Cushing’s syndrome is moon face, but you might also experience darkening of the skin, weight gain, and muscle weakness.

Corticosteroids

If your body doesn’t produce enough cortisol, your healthcare provider may prescribe corticosteroids. These anti-inflammatory drugs can also help treat several conditions such as arthritis, severe allergies, multiple sclerosis, lupus, certain kinds of cancer, and other conditions related to your lungs, skin, eyes, blood, kidneys, thyroid, stomach, or intestines.

One of the most common corticosteroids is Deltasone (prednisone). Excess amounts or long-term use of corticosteroids can cause moon face to occur.

Medical Side Effects

Besides corticosteroids, other types of medication and medical treatment can also cause moon face. Specifically, you may develop moon face as a reaction to a blood transfusion or a range of medications, such as Bayer (aspirin) and certain types of antibiotics. You can also experience moon face after head, nose, or jaw surgery.

Weight Changes

Both severe malnutrition (not eating enough to get the nutrients you need) and obesity may lead to moon face. Some people with malnutrition develop kwashiorkor—a condition that can lead to swelling of your arms, legs, and face. This can happen because not eating enough food or drinking enough water can cause low levels of fluid and force your body to retain excess salt, which can cause swelling.

People with obesity may also be more likely to develop moon face. It’s estimated that approximately three out of every four people with Cushing’s syndrome experience obesity. When Cushing’s syndrome causes excess weight on your body, you may also be at an increased risk of developing fat deposits in your face.

Other Causes

Other common causes of moon face include:

  • Allergic reactions
  • Burns or injuries to the face
  • Angioedema—a condition that causes swelling under the skin due to an issue with your immune system functioning
  • Myxedema, which is a severe form of hypothyroidism—a condition that occurs when your thyroid gland doesn’t make enough thyroid hormone and causes symptoms like skin changes and weight gain
  • Superior vena cava (SVC) syndrome—a condition that causes facial and neck swelling because your SVC (a type of vein in your body) becomes compressed and isn’t able to drain or pump blood back to the heart

How to Get Rid of Moon Face

Because moon face is a symptom of other underlying health conditions, it’s best to consult a healthcare provider to understand what’s causing your facial swelling and learn about treatment options.

For example, if your moon face is the result of an injury, you might try using ice to reduce the swelling. In addition, propping your head up with extra pillows while you sleep may help improve fluid drainage and reduce swelling. But, if a condition like Cushing’s syndrome is causing moon face, medication or surgery may help improve facial swelling.

How to Prevent Moon Face

There isn’t one surefire way to prevent moon face—mostly because a variety of factors can cause symptoms to develop. If you are at risk or concerned about a particular cause of facial swelling, speak with your healthcare provider about your options. If you’re prescribed a corticosteroid, there are particular steps you can take to reduce your chances of developing moon face.

When taking a prescribed corticosteroid like prednisone, pay close attention to your symptoms and let your healthcare provider know early if you are developing any symptoms of Cushing’s syndrome, including moon face. The earlier they are able to recommend alternative treatment, the better your chances of preventing long-term swelling.

When to Contact a Healthcare Provider

It’s important to seek care from your provider if you have specific symptoms associated with moon face, including:

  • Swelling that comes on suddenly, causes pain, or is severe
  • Long-lasting swelling
  • Signs of infection, including fever, redness, or tenderness

What To Expect at Your Appointment

If you seek medical care for moon face, your healthcare provider will likely begin your appointment by taking your medical history and performing a physical exam. They may also ask about:

  • How long your face has been swollen and when it began
  • Things that improve or worsen your symptoms
  • What allergies you have
  • Which medications you take
  • Any recent facial injury, medical test, or surgery
  • Additional symptoms you’re experiencing

Once they gather this information, your provider can order the necessary testing, understand the underlying cause of your symptoms, and offer treatment options for moon face.

A Quick Review

Moon face is a condition that occurs when fluid builds up under your skin and causes facial swelling. Several factors can cause moon face, like reactions to medication or surgery, allergies, infections, weight changes, and underlying health conditions. If you have symptoms of moon face or notice your face getting puffy without a clear reason, talk to your provider. They can help you pinpoint the underlying cause and recommend treatment.

Adapted from https://www.yahoo.com/lifestyle/moon-face-180000163.html