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In Memory of Gregory J. Bart Jr. ~ May 7, 2016

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in-memory

Greg died of a presumed heart attack at the age of 55.

September 19, 2015 he said “I was diagnosed hypertensive way back when I was 20. The condition remained for years, and became more acute with my cushings pit tumor. I still have high blood pressure, partially teated with three meds. I’ll have to consult my doc and see if this (Primary aldosteronism) may also be an issue.”


He wrote this about a year ago: On your daughter’s wedding day, you wouldn’t go down to the swap meet to pick out some second hand, ill-fitting dress, would you?

You would not.

If you were a baseball team manager getting ready for the World Series, you would not make a call down to your minor league affiliate and ask them to send up their 3rd best pitcher for the 7th game, would you?

You would not.

If you were being audited by the IRS, you would not go to the local high school and ask for assistance from the remedial accounting class, would you?

You would not.

And so, why would you not insist on, in fact demand, the very finest MRI equipment for your pit scan? A false negative is an invitation for massive bills down the road (for the blue pencil people in your insurance carrier’s claims dept.) and years of misery for you, the patient.

And you would not settle for a myopic tailor for that dress, would you?

You would not.

So, make sure your pit scan is done under the proper protocol, and looked at by an experienced hand. Without that, your time in the machine may be wasted.

You deserve the best. This disease will try to do it’s worst. Don’t let it, and don’t let your case be the one that falls in the cracks in the machine, or the system.


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Sheara (sbailey), Pituitary Bio

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golden-oldie

 

I started back in Jan 08 with a heart arrythmia that ultimately put me through weeks of cardio testing. All cardio came up negative, including passing the stress test at 110% for my age. I went back to my PCP and she was deadended with answers.

I started to advocate for myself asking if it could be endocrine since I had been diagnosed with Hashimoto’s Disease(a type of Hypothroidism) in 2002. In particular I asked her if she thought my adrenal system was the culprit. My doc said well let’s check cortisol levels. I did a salivary cortisol test that, according to the endocrinologist my doc spoke with said, was the highest he had seen.

They ordered up an MRI and confirmed a Pituitary Tumor on June 27th. My doc reacted quickly and had me go for an emergency eye exam that day to check visual fields…they were fine. Then my doc had me do urine and dexamethasone testing to see if cortisol levels could be duplicated.

Early July I had a phone call from my doc stating that since the other tests for cortisol came back normal they felt I had a non-functioning tumor but still wanted me to meet with a neurosurgeon. Finally on Aug 5th I met with the surgeon.

In the meantime I had been reading whatever I could get my hands on. I was prepared with many questions to the surgeon. Before I was in the room talking with him for 15 min. he mentioned Cyclic Cushing’s as a possibility. He had me repeat the salivary testing for 5 days…all came back normal. So the opinion remained that I may have Cyclic Cushings or can watch the tumor and symtoms or I could have the tumor removed for peace of mind.

I opted to have the surgery. to remove the tumor. Last Mon. Sept 29th I had Transsphenoidal surgery to remove the tumor. On Fri. Oct 3rd the neurosurgeon called with the pathology report results being that it was an ACTH(aka Cortisol) and Prolactin Tumor. He was vague to make a formal statement to agree that it was Cyclic Cushings.

So I am home on the mend 1 week post op…glad I made the decision to go forward with tumor removal. The medical system is curious though how they appeared almost afraid to make any formal opinions. Although the surgeon did state that Cyclic Cushings is difficult to diagnose. In my opinion, the evidence is in the pathology report!

Maybe it is my imagination, but I already feel like my “old self” back 10 yrs. ago. The other bit of history for me is that after my hypothroidism was diagnosed and I was stabilized on Synthroid and Cytomel I could never get weight off and in less than 6 months in 2005 I gained 40+lbs. No matter what I tried to do for weight loss I could not budge more than 5 lbs. I am now anxiouis to see how I do. I meet with the neurosurgeon in 5 weeks. He and possibly an endocrinologist will be following my health. Time will tell but I do feel I am on the right track.

Thanks for listening!

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Necessary Silence, Undiagnosed Bio

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question

 

I was researching the term for the corner my spine makes (buffalo hump) because I was chronicling conditions for my Medical Adventures. This lead me into the tumble of discovering Cushing’s symptoms. So many issues began making sense.

Constantly flushed face, hair loss, heavy weight gain, slimmer limbs, rounded face, buffalo hump.

Fear of not being believed by Doctors (fat lady problem) lead me to buy an at-home test for cortisol levels. The result confirmed that something was going on. I took the evidence to my GP and was sent for a blood test and referred to the Endocrinology Clinic. “Oh my goodness. This is going to be so smooth.”

A month later and the Endo people still have not been in touch. Not even a letter!? I know that an appointment will take a while to come around, but I had hoped to be told kinda how long I would have to wait by now. More research in the interim has led me to a personal conclusion that a pituitary tumour (messing with various hormones) is the likely cause. “An MRI please”.

I’ll try to update you but in the meantime more details will be in my Medical Adventures series on https://www.youtube.com/playlist?list=PLD8MiGlEkjl3J718VsBZ3tw9YWfOYSGrv

I’ve read a lot of the bios on these Cushing’s sites. There are many accounts without follow-ups and I hope that those people are still fighting for recognition of what is going on.

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Elizabeth, Pituitary/Adrenal Bio

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golden-oldie

 

Originally posted September 24, 2008

Hi my name is Elizabeth (Liz or Lisa). I am a 32 year old who has possible cushings. In October of 2005 I was diagnosised with an adrenal tumor on my left adrenal gland. At the time I contacted my PCP to get a referral to an Endo doc. I was then seen by an endo doc who had ran some tests to meassure my cortisol levels which, of course, came back normal.

I then continued to gain more and more weight and was getting more and more stretch marks as well as facial hair. I have suffered from headaches for years and had begun to suffer from extreme fatigue and body/limb weakness.

This time last year my mom was reading a Weight Watchers magazine and read a story from a lady that had the same signs. She thought that she was gaining weight and getting stretch marks due to a pregnancy but had a hard time believing thats all it was. So this lady went to a specialist and they tested her for cushings and ended up finding out that’s what she had and of course the tumor. They performed the surgery to remove her gland and she immediately lost 20 lbs and felt so much better. So my mom and I began to research this disease online and discovered that this sounded exactly what I have and was going through.

I then took this information to my endo who began testing me more and more. We had finally found an elevated reading of cortisol from my urine in December 2007. He then send me for a MRI to rule out the pituitary tumor in January 2008. With surprise to everyone, I ended up having a pituitary tumor as well.

At this time, my doc decided to send me to the Mayo Clinic in Minnesota to see a Cushings specialist. With a lot of time and money, the doc at the Mayo advised that he was unable to diagnosis cushings based off of one elevated reading. None of the tests that were performed at the mayo clinic came back elevated. I then went home in tears and disappointment. I have been continuing to go through 24 hour urine testing and pretty much everything else and no luck but just 1 more elevated reading.

This has been one of the hardest things that I have ever gone through in my life. I used to weigh 125-135 lbs and had a beautiful body and such confidence in myself. Now, I am almost 100 lbs more and have a body that is a cross between a zebra and railroad tracks with facial hair like a man. My mental health has gone completely down the drain and I am on the verge of tears everyday all day long. My dating life has gone from having someone in my life for years to nothing due to my moods and self confidence. There are times that I feel like I am going to loose it. Like I just can’t take this any more. I try my very best to watch my diet and exercise and I still gain the weight.

My endo doc here at home just this week consulted with the doc at the mayo and they just can’t figure out why the readings aren’t coming back elevated. They definately say that my physical appearance is cushings. So we just continue to test and test until, hopefully, that day comes to end this horrible disease.

It has been so great to know that they are other people out there feeling and going through the same things as I am. It does help to know that I’m not the only one going crazy over this. With luck and prayers, hopefully the next time i am writing is to say that I have to go ahead for surgery. For everyone out there, try to keep positive thoughts!

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Kathleen (ForegoneLegacy), Pituitary Bio

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golden-oldie

 

Originally posted November 20, 2008

Hi, my name is Kathleen. I’m 24 years old and live in southern pa.

I had my two pituitary tumors removed 8/22/08 and I’m still not feeling any better really.

Over the last decade I have been diagnosed with cushings, Lyme, lupus, endometriosis, sinus
tachycardia, fibromyalgia, arthritis, asthma, the list seems to go on and on.

And I guess I had it in my head that once I had this surgery that I would magically get better and move on with my life – go to college, get an apartment, get my license, and hopefully lose all the weight so maybe one day I could be confident enough to start dating again.

Its been nearly 3 months and I seem to be losing hope. My neurosurgeon says that the pathology reports showed “essentially” nothing (still not sure what that means) and that he doesn’t need to see me again.

The ENT who did the surgery was wonderful but can’t really help with anything but making my
nose/sinuses/gums ok. 🙂 And endocrinologists – I have been seeing them for ten years, and never met one whom I liked or who was helpful. Right now I’m getting a full cardio workup to try to fix my weird rhythm.

All of this is being done at Georgetown in D.C, but I’ve been all over the east coast. I don’t know, I guess I hoped maybe you’d have some insight or hopefulness to latch on – cause I put all my eggs in this basket and I feel like I’m about to drop the basket.

Thanks for listening,
Kathleen

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In Memory of Jenni Moore ~ January 25, 2016

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in-memory

 

A young woman struggling with ill health after developing a tumour died from an overdose after “illicit insulin” was brought into the Norfolk and Norwich University Hospital last year, an inquest heard.

Jenni Moore passed away at the intensive therapy unit on January 25, more than two weeks after sustaining brain damage while an inpatient at the hospital.

The 26-year-old from Halesworth had been admitted in December with complications from two unsuccessful operations to remove a tumour of the pituitary gland.

A Type 2 diabetic since 2002, Miss Moore suffered from emotionally unstable personality disorder and an abusive relationship, before a diagnosis of Cushing’s disease as a result of the tumour.

Consultant physician at NNUH Dr Franscesca Swords said Miss Moore had been exhibiting “alarming symptoms”.

“Cushing’s can cause Type 2 diabetes and needs much higher levels of insulin for it to work,” she told Norfolk Coroner’s Court.

“She was having incredibly low sugars, which is consistent with too much insulin. We had been reducing her dose steadily.

“We were giving her a fraction of the insulin she had been taking but her blood sugar was still low. Eventually the realisation came to ward staff there was something else at play here.”

Staff then began to discover insulin pens hidden in her room. During an investigation Norfolk Police interviewed Miss Moore’s partner Derek Soanes, who admitted he had brought her insulin pens at her request. No further action was taken.

Sarah Kennard, a lead health officer with Norfolk and Suffolk NHS Foundation Trust, said in a statement that during a risk assessment in March 2014 Miss Moore said she “thought she was insulin resistant” as a result of her Cushing’s.

Assistant coroner for Norfolk Nicholas Holroyd recorded a narrative verdict.

“Jenni suffered significant and unhappy health conditions for a number of years,” he said. “Cushing’s exacerbates the diabetic condition to make the patient yet more vulnerable to sugar or hypoglycemia so higher doses of insulin are needed to correct the situation, which made her resistant in a sense.

“There has been evidence insulin was being brought to her in the hospital she should not have had. I do not believe she intended to take her own life. Nothing had occurred to drive her to an extreme act.”

After the inquest Miss Moore’s brother Joe said: “I loved my sister and so did the rest of my family, and we miss her every day.”

From http://www.edp24.co.uk/news/diabetic_died_after_overdose_from_illicit_insulin_brought_into_norfolk_and_norwich_university_hospital_1_4614300

Deva, Pituitary Bio

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From the February, 2022 issue of Reader’s Digest:

 

readers-digest.jpg

 

Read the original article at readers-digest-misdiagnosed

 

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Amber D, Pituitary Bio

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Adapted from https://www.stuff.co.nz/business/money/130677664/woman-loses-home-after-insurer-turns-down-brain-tumour-claim

 

 

When Amber Denney​ bought life and critical condition insurance from Bank of New Zealand, she thought it would help pay her mortgage, if she ever fell so seriously ill she could not work.

But when she contracted a debilitating and life-threatening brain tumour, BNZ’s insurance proved worthless.

Denney was diagnosed with a pituitary tumour in 2020​, and underwent brain surgery, several years after symptoms emerged, including rapid weight gain, muscle loss, brain fog, fatigue, depression and severe headaches.

But despite her neurosurgeon saying Denney fitted the criteria to succeed in her $52,000​ claim, BNZ Life Insurance declined the claim, after taking six months to come to a decision.

As a result of her illness, Denney was unable to work, and lost the home she bought when she was 21. She wonders to this day, if the insurance money would have allowed her to save it.

At a time Denney, now aged 26​ and renting in Hamilton, was losing her home, banks were working to make sure people did not lose their homes in the economic disruption of the Covid-19 pandemic.

BNZ refused to comment on whether the insurance it sold had failed Denney in her time of need. But Partners Life, which bought BNZ Life Insurance after her claim was decided has promised to take a fresh look at her case.

Denney has yet to concede defeat to her insurer, and may take a claim to the Banking Ombudsman claiming service failure by BNZ, and the Insurance and Financial Services Ombudsman over the decision by BNZ Life to decline her claim.

But she says she is speaking out to warn others that their insurance may be much more limited than they think, and fail them at their time of direst need.

Her cluster of debilitating symptoms resulting from the pituitary tumour is called Cushing’s Disease.

“I’m not the only Cushing’s person who has had this trouble with the insurance companies,” she says.

“The endocrinologist told me about all the other people who have been struggling,” says Denney, who before her illness was fit enough to climb mountains and shear sheep.

There were several critical failures of the critical condition insurance BNZ sold her, according to Denney and insurance lawyer Tim Gunn, who is helping Denney pro bono.

While the BNZ Life policy did cover pituitary tumours, there were two caveats.

First, it had to produce neurological damage, and functional impairment, which a specialist considered to be permanent.

Second, it had to be removed by a craniotomy, surgery that requires cutting through the skull.

Gunn says the requirement for a craniotomy is unreasonable, unfair and outdated.

In recent decades the primary surgical option for pituitary tumours was not a craniotomy, but keyhole surgery, which was used to save Denney’s life.

“The method of surgery to remove the tumour was the most current and accepted method,” Gunn said, and was now used in 95% of pituitary tumour surgeries.

Craniotomy surgery carries a higher risk and was not as effective, he says, and requiring it was unreasonable.

But Denney and Gunn say the policy was also fatally flawed because it could not do what she was sold the policy for in the case of a policyholder contracting a pituitary tumour.

It takes so much time for medical specialists to conclude that damage is permanent after an operation, that paying a claim in time to help save a policyholder’s home is not possible, Denney maintains.

One communication from BNZ Life dated September 2021, told Denney that despite her being diagnosed in July 2020​, operated on in September 2020​ during the level 4 lockdown, proof of permanency had still not been established.

Denney says she has been left with permanent memory loss, severe headaches, and other symptoms of Cushing’s Disease, and can’t understand why BNZ Life is not paying.

“It’s blatantly obvious. I’m struggling. I just don’t get it. It’s extremely unfair,” she says.

“BNZ has failed in their responsibility to ensure that Ms Denney was adequately protected,” Gunn says.

Denney says one horrified BNZ worker told her not to let the bank win.

“She advised me, it was her exact words, ‘If you have the energy to fight, fight them until the end’,” she says.

BNZ would not answer the allegations, saying only that all BNZ Life’s records had moved to Partners Life, though Denney remains a BNZ customer.

BNZ had sold the business to Partners Life, which has in turn been sold to Japanese insurer Dai-ichi Life.

Partners Life has promised to review the decision taken by BNZ Life to turn Denney’s claim down.

It said BNZ Life’s conclusion was that while the condition Denney suffered was most certainly traumatic, it was not covered under the definitions in the policy wordings.

Critical condition (often called critical illness) insurance was not designed to cover every possible health emergency, it said, but did not comment on the specific allegations Denney and Gunn have made, as it had only been alerted to them by Stuff.

It said it would contact Denney about the review of BNZ Life’s decision to decline her claim.

Partners Life says its claims philosophy is that, “if it’s grey, we pay”, and “where the medical information is unclear or conflicting, we will remove the uncertainty and simply pay your claim”.

Denney said her surgery saved her life, and her weight has dropped by 35kg​.

Doctors told her in 2020 that without the surgery she would have two years to live.

“I’ve passed that two years now, so every day’s given to me now,” she says.

At its worst, Denney’s symptoms were so bad, she was unable to work for nearly two years, though her life is on the up, and she is once again dreaming about buying a home.

She has landed a job at a supportive employer in Hamilton.

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Hannah Cushing’s Bio (News Item)

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When Hannah Richards noticed she’d put on weight in 2023, she put it down to her comfortable lifestyle with her boyfriend, Nathan Baker.

The ‘happy and content’ pair had been enjoying date nights and cheeky takeaways together since meeting the year before. Really, a few extra pounds were no big deal.

But when the 28-year-old hit three-stone heavier and a healthcare worker told her she had a puffy ‘moon face’, the Norfolk local began feeling really ‘horrendous’.

Unable to stop the spiralling changes in her body, she sought help.

In March this year, Hannah was diagnosed with Cushing’s disease – a rare condition that can cause weight gain -and doctors suspect a benign brain tumour is the cause.

‘When they diagnosed me, I cried. I didn’t feel upset or shocked, I just felt really relieved,’ Hannah says.

‘It’s been going on for so long and I was like “I finally have answers and I know what’s happening to my body now”. I wasn’t just going crazy.’

Cushing’s is a rare condition caused by having too much cortisol hormone in your body and can lead to increased body fat and mood changes.

When Hannah first met Nathan, 33, everything had been going well. ‘During the early stages we were having more takeaways and doing nice things together,’ she explains.

‘You know when you get into a new relationship and you go out for food a lot and get takeaways a lot and you get comfortable.’

As she began to get a little heavier, people told her it was ‘comfort weight gain’ from being in a comfortable and loving relationship, but any attempts at losing it were futile.

‘I went back to the gym and ate healthier but nothing was helping, I just kept gaining,’ Hannah, a healthcare assistant, explains. ‘I started swimming. No matter what I was doing I wasn’t losing the weight.

‘It got to the point where I’d look back at old photos and I looked completely different. If I put that online on a dating app people would probably think I’m like a catfish.

‘I looked in the mirror and I’d get really teary, depressed and upset thinking “it’s just not who I am anymore”?’

She adds that her hormones were all over the place and she felt like she was going through menopause and all the changes that come along with it.

‘Everything changed, my body, my mental health and my personality. It’s really tough,’ she adds.

‘I started to get quite a lot of breathlessness and heart palpitations,’ she says.

She felt like she was gaining all her weight on her chest and belly, and got stretch marks between her thighs, as well as other symptoms.

‘I had a lot of hair growth on my arms and side burns, they come through quite dark. My knuckles get quite dark and swollen, too. I get a lot of dark circles under my armpits and round the back of my neck,’ she says.

Hannah even shares how she had what a medical colleague referred to as a ‘moon face’, referencing the weight gain in her face, and her ‘buffalo bump’ where she gained weight in her upper back.

It was this colleague who pushed Hannah, from Cromer, to get checked.

‘One of my colleagues actually said to me “have you heard of Cushing’s syndrome?” I was completely oblivious to it,’ Hannah recalls.

‘She said “I’m not being rude but your face has got puffier and you’re tiny from the back but from the front you’re on the larger scale. You should go to your GP”.’

It was then her GP referred her to an endocrinologist, and she was finally diagnosed with Cushing’s disease. Doctors suspect a benign tumour in her brain is to blame, and Hannah is awaiting an MRI scan to see if it’s in her pituitary or adrenal gland.

‘It turns out my pituitary gland is sending signals to my kidneys and it’s producing too many steroids, which affects your cortisol levels and your body and your hormones,’ Hannah explains.

They need to take a blood sample from [my pituitary gland] to just confirm it’s 100% Cushing’s. They need to confirm it’s from my pituitary gland and not my adrenal gland.’

Once this is confirmed, the healthcare worker will have to have brain surgery to remove the pituitary gland from her brain, and following that, she’ll have to be on steroids for the rest of her life.

‘After that, I’ll never get Cushing’s again, which is a really good thing,’ she says. ‘Even now I feel horrendous considering what I was before. I used to be quite petite and fit and active.’

This diagnosis hasn’t affected her relationship though, with her and Nathan now getting married in September 2026, after meeting back in 2022 on Tinder.

‘There’s so many things people are unaware of. It’s quite scary really,’ she adds. ‘You wouldn’t have thought something so small in your brain can change your body so much. It’s so important that people know about it.

‘Even if you do have the symptoms and you don’t have Cushing’s it could lead to something else you never thought it would be.

‘Get checked out because it’s your body you know what’s right and wrong. Don’t let anybody tell you differently because they are not in your body and they don’t know what’s normal to you.’

From https://metro.co.uk/2025/10/07/gained-weight-comfortable-relationship-thought-24350005/ (lots of ads, a couple typos and some misinformation.  “Cushing’s Disease” suggests that Hannah has been diagnosed with a pituitary tumor already – this article suggests that it could be either pituitary or adrenal.  She has been diagnosed with Cushing’s Syndrome so far.

If diagnosed with Cushing’s Disease, Hannah would have pituitary surgery NOT brain surgery.  She may not need to be on steroids for the rest of her life, either.)

Katelyn, Pituitary Bio (News article)

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WHEN Katelyn Bonacasa’s face got “red and burning hot” and became a “complete circle”, it was dismissed by doctors as “adult acne” and “postpartum changes”.

After being repeatedly fobbed off for months on end, she decided to do her own research – and was able to get to the bottom of what was really going on.

The first symptoms Katelyn, then 29, noticed was red, bumpy irritation across her chest.

A dermatologist said it had been hormonally triggered and gave her a wash and cream, which cleared it up.

But soon after that her face started to change.

She said: “Moon face was the first major symptom I noticed.

“My face lost all shape and became a complete circle. On top of that, it was red and burning hot all the time.”

Within weeks her hair began falling out and she lost nearly a third of it, while new hair sprouted across her face, from forehead to chin.

Acne erupted across her skin, her body bruised easily, and even the smallest cuts would take months to heal.

“I was literally unrecognisable to myself,” Katelyn admitted.

“I gained 30lbs so quickly, I couldn’t keep my eyes open from fatigue, but I also couldn’t sleep.

“I was depressed, anxious, angry, and constantly on edge. I felt like I was losing my mind.”

Her periods stopped, her thyroid became enlarged, and blood work showed her body wasn’t responding as it should to insulin.

Katelyn recalled: “The hardest part was watching how everything kept getting worse and just hoping it would be reversible one day.”

Yet for eight long months, doctors dismissed her insisting symptoms were “postpartum changes” or “normal for women”.

“I couldn’t even get a sentence out before my first endocrinologist interrupted me to say, ‘You’re fine’,” Katelyn claimed.

“He told me it was probably just postpartum. He ordered the most basic thyroid test, nothing comprehensive, and wrote in his notes that he had ‘no suspicion of anything’.”

Another doctor brushed her skin changes off as adult acne. An OB/GYN told her to try running on a treadmill.

“These things are normal as a woman,” one endocrinologist said flatly.

So Katelyn, from Long Island, New York, began doing her own research.

“I realised the only thing I hadn’t been tested for was Cushing’s disease,” she said.

When repeated blood tests showed cortisol levels three or four times higher than normal, and a urine test came back at 720 when the normal range is 3 to 45, her suspicions were confirmed.

“From the very first time I had blood work done, I never once had a normal cortisol reading,” she said.

“That’s when I knew it had to be Cushing’s.”

Cushing’s disease is caused by having too much of the hormone cortisol in your body and can be caused by a small, non-cancerous growth in the pituitary gland.

Katelyn was sure she finally had an answer and found a neurosurgeon who specialised in pituitary and skull base tumours.

“I asked for a consultation before I even had the MRI, because I was so sure this was what I had and I was right,” she said.

When an MRI confirmed a 1.5cm tumour, she sent her labs and scans to his office. Within eight weeks of that first phone call, she was in surgery.

Katelyn says: “I was the one who connected the dots and pushed for the right tests.

“I trusted myself, and that’s what saved me.”

Now 30, Katelyn has detailed her symptoms and repeated dismissals by doctors on TikTok, reaching thousands of people.

“Since posting my videos, I’ve had hundreds of people messaging me with questions about my journey,” she said.

“It makes me sad that people have to dig through external sources and fight so hard for answers when something as simple as a blood test could change everything.

“A 1.5cm pituitary tumour absolutely wrecked me. Nothing will humble you more than living as a version of yourself you don’t recognise, with zero control over it.

“But this too shall pass. It gets better.”

From https://www.thesun.co.uk/health/36966323/moon-face-dismissed-adult-acne-cushings-disease/ – lots of pictures. And ads.

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