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Voices from the Past: Kim H, Ectopic Bio

July 8, 2026

MaryO Adrenal Surgery, Carcinoid, Ectopic, Golden Oldies, Other Diagnosis, Pituitary Surgery, Treatments , , , , , , , , , , , , , , , , , , Leave a comment

 

I was diagnosed with Cushing’s in 1986. I had all the symptoms. Weight gain, purple stretch marks, severe acne, hair all over the face, balding on the head, muscle weakness, depression, no periods, moon face, etc.

I had all the blood, urine tests. Scans, x-rays and even petrosal sinus sampling. These were inconclusive as to the source. The MRI of the pituitary showed swelling and near to the optic nerve, so the next step was pituitary surgery which was done in August 1986. However the cortisol levels were still high. I still had Cushing’s. I was then given the choice of long term drug treatment while the source was located or to have an adrenalectomy. I was told that if I became pregnant on the drugs the pregnancy would not be able to continue because the effect of the drugs on a feotus wasn’t known. I felt that at the age of 24 I wanted my health back and the chance to have children if I was lucky enough. So in the October 1986 I had bilateral adrenalectomy through the back.

My Cushing’s was to all intents and purposes cured. Nearly 16 years later the ectopic source has never been found despite many more tests. It is still there because it still produces ACTH. The good side is now that I tan really easily which is amazing considering the British weather. I take hydrocortisone and fludrocortisone. I have never felt that I truly got my health back but am glad to still be here. I went on to have two lovely children, now aged 14 and 12. I was diagnosed with osteoporosis last year after years of back pain which is now being treated. I also had some problems last year and was diagnosed with angina and my steroids had to be increased due to a total lack of energy.

Up till now I have just about managed to hold down a full time job as a merchandiser for Hallmark Cards but have now taken the decision to go part-time which I am able to do with Hallmark. I have been married twice and am again a single parent. The men in my life could not cope with my health problems, so I figure I am better off with being on my own to bring up my kids. I think that’s about all. I would just like to say a huge thank-you to St. Bartolomews Hospital in London for all they have done for me over the years. Without their care and support I probably wouldn’t be here. p.s. I still suffer from depression but the old prozac sure helps.

Update: May, 2007

It is now 2007 and in 2006 they found my ectopic source in my appendix. It looked on the scan like it was in the central blood vessel but when they operated my appendix had flipped itself up and the tumour was sitting on the tip of it. After they tested it it was found to be a carcinoid tumour. Thankfully it was all taken away and the outcome was ok.

For the first time in over 20 years I can honestly say that i am much beter. for 20 years i felt ill and now i feel great. Obviously i still have bad days as I have no adrenal glands. But i will always be greatful for the immense help and support that i have received from professor Grossman and St. Bartholomews hospital in London.

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Kirsty (kirstymnz), Ectopic Adrenal Bio

June 25, 2026

MaryO Addison's Disease, Adrenal, Adrenal Insufficiency, Adrenal Surgery, Ectopic, Golden Oldies, Lung Surgery, PCOS, Treatments , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , 1 Comment

Another Golden Oldie, Kirsty’s bio was last updated 08/18/2009.

~~~

I don’t really remember when it first started. It was probably about a year ago when I think about it.

I found myself becoming easily tired all the time. I went from being a social butterfly and life of the party to an ‘old nana’ who stayed home all the time and went to bed early. At the time, I didn’t think anything of it; I just put it down to working hard and not sleeping well. I often had disturbed sleeps because I regularly (3 or 4 times a night) got up during the night to go to the bathroom and once I was awake, it sometimes took up to 2 hours to get back to sleep.

As the year progressed, I rapidly began to gain weight. Putting it down to ‘eating to many chocolate biscuits’ and not enough exercise, I began going to the gym 4-5 times per week and basically eating ‘rabbit food’.

The obsessive cleaning habit probably began around the same time as the weight gain; it got to the point where I couldn’t possibly think about doing anything else until I had cleaned every nook and cranny.

Throughout all of this, I was having very sporadic periods, which were very painful. I never imagined they could possibly be linked. I decided to visit my GP, who sent me off for numerous tests including an ultrasound, which resulted in a diagnosis of polycystic ovaries.

My GP referred me to an endocrinologist who then requested more tests, including a 24 hour urine collection (something I became very accustomed to during the course of my illness, eventually having to do them weekly). I heard nothing as a result of the tests, so I assumed all was fine.

As the months passed, my weight continued to raise, as it did, my self esteem fell. I also began to notice bright red stretch marks appearing on my stomach.

I reached the stage where my self esteem was so low that I decided to return to my GP. The first thing she said to me when I walked into her practice was “your face looks very cushingoid.” Having no idea what she meant, I sat down as she looked through my file. As she came across my test results that had been requested by the endocrinologist, her face dropped. The level of cortisol (stress hormone) in my urine was over 2000mg (the average person needs around 30mg per day). She instantly picked up the phone in a desperate bid to contact the endocrinologist, but was unable to get hold of him. Having left a number of messages, she told me she would be in touch once she had heard back, and so I left. I wasn’t really too concerned as at this stage, I had no idea just how important cortisol really was.

The next day at work, a phone call came through for me. It was the endocrinologist. He said I desperately needed to come in to see him. I left work straight away. When I arrived, he advised me I had Cushing’s syndrome. He spent the next few minutes telling me what this was, although it all went in one ear and out the other once he told me that it is 99% of the time caused by a pituitary tumor; all I could think of once he said tumor was ‘cancer’.

The following Monday, I was admitted to hospital for 10 days of tests (including 4 hourly blood tests)during which time my food obsession began (this obsession progressed to be the worst of them and became all I could think about). These tests concluded that I did indeed have Cushing’s.

The months that followed proved to be the hardest that I have ever faced. MRI scans, CT scans, numerous X rays. The hardest of all these was what they call a petrusal vein sampling (this is where they insert a catheter into the groin through the femoral vein which goes up to the base of the brain to look at the pituitary, they do this while awake – I could actually feel them moving around in my head.)

This test concluded that my Cushing’s was being caused by a tumor somewhere other than the pituitary (this only happens in 1% of cases, and there is about a 1 in 10 million chance of getting it). The question now was “where is the tumor?” I happened to be at one of my regular appointments at the same time as the Endocrinologist was to attend a meeting with the head of CT.

lungsTogether they looked at a CT scan I had previously had of my lungs, on which they spotted a small nodule which they believed could be the cause. Numerous more tests were to follow, including one where radioactive liquid (which I had to wait for over a month for to arrive from Australia) was injected into a vein in my arm, with the purpose of highlighting any tumors on a CT scan.

After such a long wait, this test proved a waste of time as it showed nothing (it turns out it only works 50% of the time anyway). Around the same time, I started having severe anxiety attacks, brought on by several major stresses. I decided the only way to ease the anxiety was to remove all the stresses possible; I did this by moving home to my parents.

The next week, another CT scan was required to see if the nodule had grown, it hadn’t. Feeling completely stumped, the endocrinologist decided to take a risk and remove the part of my lung that the nodule was on. Because it was so small, the surgeon required a hook wire to be placed in it in order to see where it was. This procedure was incredibly painful and one of the worst things during the whole illness that I’ve faced.

Disappointingly, this surgery was a failure, leaving me in the high dependency unit for 6 days and in immense pain.

The next step which was seen as a definite cure was to remove the adrenal glands (this really was a last resort, as once these are removed; hydrocortisone replacement is required for life in order to stay alive).

After this surgery, I spent another 6 days in the hospital, during which time, I experienced mood swings, dizziness, nausea and much more while my body adjusted to lower cortisol levels. I was sent home on morphine as I was still in so much pain from the surgery, however when I went in for a checkup 5 days after being discharged, the endocrinologist couldn’t believe I was still on it. In total I had been on it for 6 weeks, resulting in severe withdrawals when I stopped taking it (why anyone would voluntarily take drugs I will never know after going through this).

I am now 5 weeks down the track. I am not going back to normal as quickly as I had expected, physically; I am constantly tired and am still in pain from the lung operation which was 2 months ago, I’m told this could last up to year.

However, on a positive note, I have lost around 5 of the 15 kgs gained during the illness. I am also mostly back to normal mentally.

My Cushing’s disease is cured now, however I am now labeled as being a sufferer of Addison’s disease (where there are no adrenals, or the adrenals don’t work).

There is a long road ahead still, including reconstructive surgery of my legs, arms and torso, but I sure am glad to be out the other side of the worst of it.

Magdalena, Food-Dependent Cushing’s Bio

June 23, 2026

MaryO Adrenal, Adrenal Surgery, Ectopic, Food-Dependent Cushing's, GIP-Dependent Cushing's, Treatments , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , 8 Comments

Magdalena is from Windsor, Ontario (Originally Poland). She has Food-Dependent / GIP-Dependent Cushing’s Syndrome. This means that genetically, she has cells on her adrenals that are only supposed to be in her intestines. They respond to a polypeptide hormone (GIP) that is produced in response to food. So when she eats, the hormone triggers her adrenal glands and they produce cortisol. It is an ectopic response that is ACTH-independent.

A Golden Oldie last updated 01/22/2008.

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Hi, I am 22 years old now, at diagnsis. I have a rare form of cushing’s syndrome called food-dependant cushing’s syndrome. Sometimes it is referred to as gip-dependant cushing’s syndrome. This means that genetically, I have cells on my adrenals that are only supposed to be in my intestines. They respond to a polypeptide hormone (GIP) that is produced in response to food. So I eat, the hormone triggers my adrenal glands and they produce cortisol. It is an ectopic response that is acth-independant.

I am writing this bio because it was very hard to find this disease, and it was like nothing else, even normal cushing’s fit rather loosely.

I began having problems at age 12, but the disease did not “blow up” till I was 19. When i was 12, I started having stomach pains. First, the doctors said it was apendicitis, then my period, then lactose intolerance. This was on and off, and I kept eliminating foods that I thought i might be allergic too.

When I was 15, the problem intensified. I lost my period and my stomach aches grew worse; I noticed that my stomach was quite swollen after a normal meal, and everyone elses was not. I assumed that it was my fault and I should eat healthier.

Unfortunately, the stomache aches grew worse till my stomach swelled even below my breastbone and I could barely breathe. I started eating very little and very thought out proportions of food, often feeling that I was doing this to myself and then feeling that this couldn’t be normal.

At 17, I started getting really annoyed that my face was so swollen all the time and my skin so bad; I thought i was just ugly. I was quite thin at 5’5″ and 105lbs, but with a very swollen face and stomache. This was getting out of control, the pain was worse, and I was getting thinner. My yelled at me in class because I wasn’t jumping high enough and I told her it hurt cuz of my stomach, she told me I was too thin and that I probably had an eating disorder.

I was in so much pain, I would have gone to a doctor for a monkey growing out of my head. I went to the eating disorder doctor, I told her my stomach hurt. She told me I had an eating disorder (no kidding.) I was put into a group where they would feed me. Over the next two years, I was put on many antidepressants, fed weight gainers, but the pain grew worse and I grew thinner.

Eventually, they put me in the hospital where the problem grew much worse. I couldn’t even lay down because the food would come back up to my throat and I started having a problem with constipation. Nausea became a problem; thank God I only threw up once in my life, when I was five and I had the flu. I have never had a high temperature since, or thrown up since. This should have been a sign that something was wrong with my immune system, but no one listened. For some reason, my cholesterol was very high and I had a fatty liver. Needless to say, there was no improvement and I signed myself out after 6 weeks.

I knew there was something wrong. I was 19 and the pain was worse. I left my eating disorder doctor with the same complaint that I had come with. So she said that I had IBS. I knew that couldn’t be it, because it never went away, it only got worse, and it had nothing to do with stress or the type of food I ate. To the day of my diagnosis, I thought IBS was a bullshit diagnosis- we don’t know what’s wrong yet…

At 19 something odd happened, i started gaining weight very fast and my ankles and knees started hurting. I was pushing through the pain to eat because life was hard, but I started gaining weight too fast. I went off to a musical theatre conservatory in Feb 04 and disaster struck. I blew up like a balloon, my face looked awful and my stomach would hurt to the point I would become paralyzed. It hurt to breath and I could barely walk upright sometimes. I came home and we went through the diagnosises; pancreatitis, ibs, psychosis, eating disorder, lupus, diabetes, thyroid and celiac disease.

It looked like celiac disease so I eliminated bread, but little changed. It was winter and I could barely shower and comb my hair because I had so little energy. The weight would come on so fast that my skin hurt to touch, and my eyes were swollen shut. I also thought i was psycho, but a little voice said I couldn’t be.

The next october the same cycle occurred, really quick weight gain, fatigue, sweats, and blurry vision. Independant university study was hard, but I got through it. That May and everything started going down, I could exercise again. However, the fatigue, nausea, stomach pain and occasional flareups were a rollercoaster. I know now that these are signs of adrenal insufficiency because my acth was still suppressed. The flareups made me feel crazy, that i was doing this to myself by eating.

The third time this cycle happened was much more painful. It was sept. 06 and I was going to university again. The bachelor of design was tough and I had to focus so much on staying healthy. Going to the gym everyday to sweat so that my swelling would go down. Watching what I ate, doing an IBS diet. I realized I couldn’t digest fruit or vegetables. I kept going to endocrinologist because I had no period and my dhea was high (which worried my gynecologist), but they all said it was nothing. My stomach aches occurred after eating, and even drinking water. The doctor at my school told me that I should know how to stop eating and drinking (He was a really fat, sweaty guy too). I had constipation for 10 days straight and laxatives barely worked. I had such swollen lymph nodes that I tasted raw blood in my throat and could barely swallow. Needless to say, I came home.

I ended up in the hospital at Christmas. The ER doctor and gastroenterologist both said there must be a endo problem because I had been constipated for 10 days, colonoscopy laxatives weren;t working, and my intestines and bladder was so full they couldn’t see on the Ct scan.

I finally went to an endocrinologist in Toronto, Dr. Rosario Briones-Urbina. I suggested Cushing’s, she said I was too skinny. Though I had just gone from 110lbs to 130lbs in two weeks. She agreed to test me in Jan. The test came out 550 out of a max of 250. She waited three months to do the dexamethasone and it was too late, it was march and my cortisol had gone to 90 (the min. was 60). She said she had never seen such a quick cycle.

I wanted to show her just how fast the cycle was; I took a UFC one day that came out 90, the next day I had a party, ate just like everyone else, but got a paralyzing stomach ache and sweats. I did a UFC the next day and it came out 350 (max 250). She was shocked. She said my symptoms fit an extremely rare form called food-dependant cushing’s. Unfortunately, the testing is not standard and I am waiting for it. After it is done, I will have a bilateral adrenalectomy.

If you got this far in my story, thank you for baring with me. I haven’t found a story like mine and wanted to share it, cuz I spent so much time looking. Over two years, I saw 24 specialists. I don;t know how I got through it, I must of been quite a witch with a B. However, I kept pushing. I studied at home independantly to keep me going and have now been accepted to medical school.

The most important advice i have to give is this:

    1. GO TO A TEACHING/RESEARCH HOSPITAL!!!
    2. If you have kids, think twice before eating disorder treatment. I went into the program with pain and a method of coping. I came out with an eating disorder psyche, bad experiences, and a truckload of pills that were making me crazy.
    3. IF YOU THINK YOU HAVE FOOD DEPENDANT CUSHINGS, HERE IS HOW I COPE;
      • the cortisol goes up with too much of any protein, fat or carbs. I eat small turkey/cheese sandwiches at every meal (enough to be full, but well balanced).
      • I use stevia instead of sugar because its natural (health food isle.)
      • alcohol really hurts now, so only a little wine occassionally.
      • lots of yogurts.
      • every couple days a mixture of senna laxative and stool softener (not too often)
    4. Remember the squeekiest wheel gets the grease.

Lee B, Ectopic (pituitary and lung tumor) Bio

June 21, 2026

MaryO Adrenal Insufficiency, Ectopic, Empty Sella, Golden Oldies, Pituitary, Thyroid , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , Leave a comment

Another Golden Oldie, Lee had both pituitary and lung tumors.  This bio was originally posted 06/07/2008.

~~~

Whee1 where to start!. During 2002 noticed that I had extreme daily hair loss, weight gain even while on diet, depression and general feeling of not being well and decreased sleep and change in sleep pattern. Went to a psychologist who said I was “sane” and diagnosed me with depression related to organic disease.. but what? the fatigue increased – looked like a walking zombie and could barely make it through the day. I worked in a very high powered job. Started experiencing rapid heartbeat – and landed up twice in the ER. Before going to the cardiologist I had a chest xray and saw a shadow on my lung. As an ex-smoker I was concerned and ordered a CT with contrast. I am an RN with a background in Oncology. to cut a long story short, landed up at the oncologist who agreed with me regarding the need for a biopsy. I had to fire my GP who told me to wait another 6 months and do a repeat. I diagnosed myself with a carcinoid tumor, had the upper part of my right lung removed.

I kept on complaining of increased symptoms – moon face, fatigue, headaches, joint pain etc. Got diagnosed with sleep apnea. My oncologist pooh poohed everything but further staining of my lung tumor indicated that it was secreting ACTH – Cushings!

Had a brain MRI – my sella is totally empty and I have a 7mm tumor – not sure what even after 3 MRI’s. Had a full endocrine workup – the endocrinologist siad everything was fine! HA! Turned out I have Hashimoto’s with thyroid cancer – just had that removed. My thyroid was so swollen including the lymph nodes which made me suspicious for metastases- that they could not visulize the Recurrent Nerve – so now I have permanent vocal cord damage and cannot work.

Before this I decided to go to see Dr Friedman. What a blessing. I have adrenal insufficiency, he thinks intermittent Cushings from another carcinoid tumor, who knows where and extreme growth hormone deficiency. I need to have the pituitary tumor removed but am awaiting recovery after my thyroid operation.

I feel terrible – cannot really function, cry all the time, have severe headaches, joint aches, nausea etc. I hope and pray that the pituitary operation will fix up my problems.

ORKitty, Pituitary Bio

June 14, 2026

MaryO Adrenal, Adrenal Surgery, Ectopic, Golden Oldies, Pituitary, Pituitary Surgery, Thyroid , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , Leave a comment

Another Golden Oldie, this bio was originally posted 01/22/2008

Hi, I’m ORKitty. I live in Portland, OR, with my wonderful husband and kitty. I just turned 50 in 2005.

I began this journey quite possibly 17 years ago when I had some isolated panic attacks and then suddenly had panic 24 hours a day. I also kept crying and didn’t know why. I was eventually put on Xanax and then found a psychiatrist who put me on the anti-depressant imipramine and weaned me off the Xanax. It worked well for both the panic and depression for about 10 years. I gained some weight which I attributed to the anti-depressant. During this time I was still able to work and ran my own home-based business for 3 years. About seven years ago my anxiety worsened and my psychiatrist added Klonopin to deal with it. About this time I began gaining even more weight.

Due to a terrible (and terrifying) experience with a doctor, I developed a real phobia about seeing doctors. I managed to overcome this in early 2003 and have a large lump on my neck examined. An ultrasound showed normal tissue, but while I was there the doctor took my blood pressure at 160/100 and then decided to do an EKG. She found an abnormality and sent me to a cardiologist who diagnosed me with severe cardiomyopathy (next step dead). I was put on medication and had regular echocardiograms every few months and each one showed more improvement.

In fall of 2003 I was diagnosed with hypothyroidism and began taking Levoxyl, increasing by very small doses because it seemed to increase my anxiety every time I upped the dose. At the same time I was taken off the imipramine because there was some concern that it may have contributed to my heart problems. As my thyroid meds increased I began to lose weight and began having serious digestive problems including constant diarrhea. I had burning sensations in both arms, edema in both legs and my periods stopped. After some misdiagnoses and some doctor abuse I was finally found to have gallstones and had my gallbladder removed in April of 2004. I had hoped this would clear up the digestive issues, but that wasn’t the case.

After the surgery I noticed that my depression was getting much worse. By July I found that I couldn’t stand to listen to music or watch TV without getting anxious and upset. I was also feeling like I was in a fog and had racing, looping thoughts. I had trouble with reasoning and memory. My psychiatrist began prescribing a variety of medications, none of which seemed to help any of my symptoms. Things were so bad that I became suicidal for the first time in my life.

I finally persuaded my doctor to do a CAT scan to see what was wrong with my digestive system. Nothing showed up there but they found a uterine/ovarian mass and an adrenal adenoma. My doctor didn’t tell me about the adenoma until a later visit when she mentioned it in passing, saying it was nothing to worry about.

Oregon Health Sciences University.

Oregon Health Sciences University. (Photo credit: Wikipedia)

That was when I saw my first endocrinologist hoping to get help with my thyroid and an explanation of what was going on with my adrenal gland. He did a 24-hr. urine collection and my cortisol was high (200). He did an 8mg Dex test and I didn’t suppress completely so he sent me to Dr. Cook at OHSU who did a CRH/Dex test. The results were somewhat ambiguous, but he decided that the most likely source was the adrenal adenoma and recommended having the gland removed. I had that surgery in December of 2004. The day of the surgery I developed phlebitis in my right arm starting at the site of the IV. My arm became red and swollen from wrist to shoulder and all the superficial veins in that arm clotted up and disappeared. Ten months later I still can’t have blood drawn from that arm.

In the months after my surgery my heart went back to normal and my cholesterol and blood pressure improved, my periods came back and the burning sensations lessened. My legs were still swollen and suddenly became very red and hot. Doctors suggested it might be cellulitis or vasculitis. After 10 days of antibiotics the redness went away and a few months later the edema did, too. An ultrasound of my legs showed a thickened vein in my right leg that suggested there might have previously been a blood clot there. The mental fog slowly improved but I’m still not back to where I was. The anxiety and depression did not improve and have even gotten worse.

I planned to have the uterine mass removed after the adrenal surgery. This would be a total hysterectomy and my surgeon feels that my blood clotting problems need to be treated before the surgery. He is 99% certain that it is not cancerous since it hasn’t changed in over a year so I have the option of having the surgery when and if I choose. Of course there is a very slight chance that this mass could be the ACTH source.

Dr. Cook wants to do the IPSS before the MRI of my pituitary but this clotting problem needs to be dealt with before we stick 3-foot catheters in my veins. Plus I am running out of arm veins for the IVs.

Right now I’m waiting for my doctors to decide how to deal with this clotting problem before I can get the IPSS done.

I had a follow-up visit with Dr. Cook in September of 2005 and he ran all the tests again including the CRH/Dex. Since we thought the adrenalectomy had cured the problem, we were both surprised when my ACTH did not suppress. Dr. Cook wants to do an IPSS to see if the source is ectopic or pituitary. As I mentioned above, there is a slight chance that the growth on my uterus and right ovary could be the source of the ACTH. Neither my Gyn surgeon nor Dr. Cook feel that this is very likely, but it does make having the IPSS even more important than it would normally be.

Gina M, Ectopic Bio

May 9, 2026

MaryO Addison's Disease, Adrenal, Adrenal Surgery, Ectopic, Pituitary Surgery, Thyroid, Treatments , , , , , , , , , , , , , , , , , , , , , , , , , , , , 3 Comments

I was diagnosed with Cushing Syndrome in June 1999.  At that time my urine cotisol level was 342.

Prior to being diagnosed I suffered for over 7 years with severe migraine headaches. I also had gained 80 lbs, had a moon face, buffalo hump, mood swings, severe fatigue (could sleep 20 out of 24 hours a day), aweful sweats day and night, weak muscles, thyroid disease.

I had pituitary surgery at Mass General because my state didn’t do that type of surgery.  After surgery, my levels were still elevated and I was diagnosed with diabetes insipidus.

When I returned home I underwent more tests ie. blood work, 24 hour urines. This continued for another year and during that time my endo put me on Ketakonazal in an attempt to lower my cotisol level to no avail. The medication just messed up my stomache.

In 2000 I had surgery again this time I had both adrenal glands removed. still no tumor had been found. That’s when the worst news of all came. I was told I had Ectopic Cushings Syndrome and had 5 years to live. The reason for this if you my not know is 50% of ectopic tumors end up being small cell lung cancer.

I was also diagnosed with Addison’s disease because of no more adrenals. Today it has been 13 years since my adrenal surgery and I am still alive and no cancer!

Cleo, Ectopic Cushing’s

May 6, 2026

MaryO Cancer, Ectopic, Other Diagnosis, PCOS , , , , , , , , , Leave a comment

Did’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/

Share Your Experiences with Cushing’s

May 4, 2026

MaryO Adrenal, Ectopic, MaryO, Pituitary, Recurrence, Success Stories, Treatments , , Leave a comment

 

The popular website “How Stuff Work”s is doing a survey of all kinds of diseases and Cushing’s is one of them!

Share your information and help get the word out to the world in general.

(I’m MaryO on there and I shared about my pituitary surgery and its aftermath.  I hope this info helps someone else like these boards and related websites have)

The idea is simple. Everyone shares their experiences with different treatments. StuffThatWorks automatically transforms these experiences into data about which treatments work best, and for whom

The questionnaire is here: https://stuff.health/s/u0A9djA5

Together, we’ll figure out which treatments work best for Cushing’s syndrome.

 

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Final Diagnosis: ACTH-dependent Cushing’s syndrome • ectopic ACTH syndrome

December 16, 2025

MaryO Ectopic, News Items , , , , , , Leave a comment

Final Diagnosis: ACTH-dependent Cushing’s syndrome • ectopic ACTH syndrome

Symptoms: Edema • general fatigue • recurrent mechanical fall

Medication: —

Clinical Procedure: —

Specialty: Critical Care Medicine • Endocrinology and Metabolic • Family Medicine • General and Internal Medicine • Nephrology • Oncology

Objective:

Unusual clinical course

Background:

Adrenocorticotropic hormone (ACTH)-dependent Cushing’s syndrome (CS) secondary to an ectopic source is an uncommon condition, accounting for 4–5% of all cases of CS. Refractory hypokalemia can be the presenting feature in patients with ectopic ACTH syndrome (EAS), and is seen in up to 80% of cases. EAS can be rapidly progressive and life-threatening without timely diagnosis and intervention.

Case Report:

We present a case of a 74-year-old White woman who first presented with hypokalemia, refractory to treatment with potassium supplementation and spironolactone. She progressively developed generalized weakness, recurrent falls, bleeding peptic ulcer disease, worsening congestive heart failure, and osteoporotic fracture. A laboratory workup showed hypokalemia, hypernatremia, and primary metabolic alkalosis with respiratory acidosis. Hormonal evaluation showed elevated ACTH, DHEA-S, 24-h urinary free cortisol, and unsuppressed cortisol following an 8 mg dexamethasone suppression test, suggestive of ACTH-dependent CS. CT chest, abdomen, and pelvis, and FDG/PET CT scan showed a 1.4 cm right lung nodule and bilateral adrenal enlargement, confirming the diagnosis of EAS, with a 1.4-cm lung nodule being the likely source of ectopic ACTH secretion. Due to the patient’s advanced age, comorbid conditions, and inability to attend to further evaluation and treatment, her family decided to pursue palliative and hospice care.

Conclusions:

This case illustrates that EAS is a challenging condition and requires a multidisciplinary approach in diagnosis and management, which can be very difficult in resource-limited areas. In addition, a delay in diagnosis and management often results in rapid deterioration of clinical status.

Read more at https://cushings.invisionzone.com/topic/56339-final-diagnosis-acth-dependent-cushing%E2%80%99s-syndrome-%E2%80%A2-ectopic-acth-syndrome/

Margaret D (MargaretD), Pituitary Bio

December 3, 2025

MaryO Adrenal Surgery, Ectopic, Pituitary, Pituitary Surgery, Success Stories, Thyroid, Treatments , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , 7 Comments

Original Bio:

My story spands over 20 years and may sound familiar to many with Cushings who read this. The first clue came when I was diagnosed at 19 yrs old with a thyroid tumor. The tumor turned out to be both solid and cystic… Cushings is a cystic disease.

Shortly after my thyroid surgery, I developed difficulties with having regular menstrual cycle. I was diagnosed with PCOS… Cushings is a cystic disease.

In the following years, I went up and down with my weight until I finally was 80lbs over and unable to lose any; I slowly lost my hair; I developed stretch marks in my abdomen and chest area; and I developed hypertension, diabetes, and bad cholesterol problems at a young age. I went to my doctor for help and was told I just needed to lose weight.

My symptoms kept getting worse with time.

In July of 2003 changed jobs and was hired by Dr Johnny Delashaw, Neurosurgeon @OHSU. This was a day of blessings in more way than one. Accepting this position brought changes to my professional career and BIG changes to my life.

As part of my job, Dr Delashaw asked me to work with the Pituitary Diseases Clinic and Dr Bill Ludlam. I was more than happy and very enthusiastic as my professional background is in Internal Medicine.

In the beginning, I was interviewing patients to get them ready for surgery and I would also see them for their 2 week post-ops. Soon after that, I got involved in conducting endocrine testing with Dr Ludlam. This was my information gathering stage.

Not long after that, I came to the realization that I may have Cushings and the thought scared me. It took me a month or so to gather enough courage to talk to Dr Ludlam and discuss my fears. (If anyone out there knows Dr L, you know how funny my last statement is since he is the most kind and caring of doctors). He LISTENED to me and did not make me feel like a fraud. I felt legitimate.

We ran the tests and did the MRI and – BOOM – I had a very large pituitary tumor and high cortisol levels. I was surprised but then not surprised.

I have undergone 2 pituitary surgeries with the second one resulting in a complete hypophysectomy. Despite no pituitary, I continued to have symptoms along with high levels of ACTH and cortisol and eventually had a BLA in Sept 2004.

I struggled through withdrawals after my BLA but like a trooper, I returned to work within a month. Thank God I worked for Dr Delashaw who was very understanding. I was doing well for a few months but then in March 2005 I started to have symptoms again. Recent tests show ectopic cortisol production so now I’m waiting to go through the work-up to find the ectopic tissue.

I believe, as well as my doctors, that I’ve had Cushings for at least 20 years if not more. This disease has caused me to develop other conditions that increase my mortality and morbidity. Ironically, as I was going through Physician Assistant school… I jokingly (halfway) thought I had Cushings Disease as we studied it in class. I should have pursued it more but people with Cushings understand how this disease plays with one’s mind.

I am not sure when or if I will get over this disease, but I can tell you….
I am grateful… I am blessed… but most of all, I am hopeful…

Update December 12, 2013:

It’s been 10 years now since I had my “cure” for Cushings.  I am one of those rare people who have had both a complete hypophysectomy and bilateral adrenalectomy.  I have had my ups and downs over the years but can honestly say I am in a good place now both physically and mentally.

I just wanted people to know that I am back in the Pacific Northwest working at Swedish Neuroscience Institute with Dr. Johnny Delshaw again – the team is back!  Please don’t hesitate to ask me questions. As a healthcare provider and patient, I can be honest with what to expect and I will do what I can to help you through it.

Many thanks to my family and friends who have put up with me and helped me while I rediscovered myself after Cushings.  God Bless to all!

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