Diagnosis: Stage 2 small cell lung cancer causing high levels of Cortisol, low testosterone and thyroid
Hi, I’m a 46 year old male academic working on US politics qlat University in England. I had 18 months of hospital referrals before my GP realised I had Cushing’s and was diagnosed in March 2020.
I went through a series of investigations and the cause of it was a small cell tumour in my lung. I am currently undergoing chemo and start radiotherapy this week.
I’m a complex case apparently and my biggest problem at the moment is my back pain both acute spasms and muscle ache.
Well I’m really sick now. I have had every diagnosis Known to man. To many Doctors.
26 years since my first symptom of excruciating unrelenting back, and neck jaw, and temple pain.
I am now seeing that these bizarre symptoms have started speeding up.
I have been off work since beginning of September. My Doctor still thinks it is my Hashimoto’s but she is testing me with the saliva tests and 24hr urin.
I am having trouble breathing. Im completly unable to do anything but go to the bathroom and one choir at a time. And tonight I feel like I have bone pain. Not to mention the heart palpatations and high then low blood pressure.
It’s so sad to be here. But I think it is were I belong.
I’ve had back pain since I was 14, and 6 years ago I went through a series of steroid injections to try to relieve the pain. I ended up with steroid induced Cushing’s Syndrome.
I gained 80 pounds in under 8 weeks, grew a huge buffalo hump, lost more than half of my hair, had a horrendous headache that hospitalized me, gained the deep stretchmarks, grew facial hair etc etc etc. You name it, I had it. All in a matter of 8 weeks after my final steroid injection.
Fast forward to today and I still have all of the weight, my hair didn’t grow back, I still have SEVERE facial flushing every single day (the flushing alone is ruining my life) and I have yet to find a good, knowledgeable Endocrinologist who can help me. I did have a plastic surgeon remove the buffalo hump so I feel much better about that. We have only caught my cortisol level high 1 time. I’m not on any meds for the Cushing’s and I’m miserable.
Just hoping to get to know some other people battling this awful disease with me. Thanks for having me.
Hello my name is Jordiyn and i have not been definitively diagnosed with Cushing as of yet. Im not really quite sure where to start so ill start at the beginning.
At the age of 19 i started to notice that I was gaining weight very rapidly for no reason. I was very active and I weighed about 120 and then within about 6 months I gained 60 pounds. Then from there I started to gain more weight every month/year. All in all iv gain over 100 pounds in the last 4 years even though i eat pretty healthy and exercise.
With the excessive weight gain I started to notice these pinkish/purplish stretch marks on my hips, stomach,arms and thighs. Plus I gained a lot of weight in my face and my upper back. And then I started to notice that I was so tired and weak all the time.
I think the worst part has been the back pain and that I always feel like I need a nap even though I have a very hard time sleeping. My moods started to change dramatically. I get irritated very fast and I can just start crying and the most random things, I also have really bad anxiety so much so its crippling. My depression is threw the roof.
Last year in October I even tried to kill myself and then 4 months later I tried again. I do have Bipolar and i’m on medication but it feels like none of the medication are working. My psychiatrist just has no idea what is going on with me but he did tell me he thinks there’s something going on that doesn’t relate to my bipolar.
Then last year in October I stopped having my period and this lasted until june of this year so about 9 months. In those 9 months I gain 25 pounds, I literally thought that I was pregnant but every test was negative. After tons of tests and blood work It later turned out that I have PSOD. While I was at my Gynecologist he told me that I look like someone who has Cushing’s and that i needed to talking to my primary care doctor and talk to her about it.
So as of now im waiting for my doctor to send me to an Endocrinologist. I am very nervous that I have Cushing’s. Last year while I was doing some research about all out my symptoms Cushing’s popped up and so I talked with my old doctor about it and all she did was dismiss it. So after I couldn’t get any doctor to listen to me I gave up. Then a doctor finally says to me you may have it and i feel like it a sign from God telling me that I maybe i do have Cushing’s.
I would love to make some friends and actually have someone to talk to about this. Ill keep everyone updated and I’ll also post some pictures too.
I recently read an article in the NY Times magazine about Cushings, and a light bulb went off. I have an appt with an endocrinologist in March, but I’ve been to a renowned large clinic near my home in the early 1990s and was diagnosed with PCOS yet had no cysts on ovaries. I had abdominal striae, rapid wt gain in belly only, facial hair. They also found I had hypertriglyceridema – 1000+ when fasting. They could not put me on estrogen for the PCOS because of the lipid disorder, which they figured was genetic tho I never had any tests to find out why. So I went on Lopid, went on to grad school, shaved and plucked, wondered when the period would come.
I’m 53 now, got married in the mid 90s and we tried for years to have children, finally got pregnant in late 1998 and had a son in 99. Then I got hit with a terrible insomnia, sweating and anxiety and was treated for post partum depression. I did not feel depressed, just could not sleep despite my 9.9 baby sleeping through the night almost immediately. Didn’t sleep the two nights I was in the hospital after delivery. I stopped breastfeeding at 3 weeks and began a tragi-comedy of errors of regular health/mental health treatment, finally Zoloft did the trick as well as Valerian root instead of Ambien (which never worked for me) for sleep. The toughest point was when I hadn’t slept at all for 3 days. But that is another story. Anyway to make this already bad story worse, at 4 months postpartum, my mom died of stage 4 leiomyosarcoma, which she’d had in 1995 in her leg and it had metasticized to her lungs. She was a tough old bird and I think maybe had Cushings come to think back. (And thinking of my family history there may be something there with genetics, ie., MEN, with a sister with uterine fibroids, and two brothers with neurofibroma on their foreheads that were removed). Anyway, she refused all medical treatment after the leg surgery and elected to only have radiation in the leg area and never went to get checked out after that.
My son is now 14 and I’m apparently in menopause. I’ve had the return of the awful insomnia and the rapid heart rate at night. So I’m back on Zoloft and valerian root immediately and made this endo appt today after reading about cushings here for two weeks. My other conditions are hypertriglyceridemia (never determined if primary or secondary) for which I take Lovaza and Niacin and it’s down to about 300-400, which is not good. I tried Pravastatin but makes my muscle aches and constantnback aches worse.
In 2005 I had a terrible loose cough that the renowned clinic diagnosed as GERD after being misdiagnosed as asthma for 2 years by the community clinic. I can’t tolerate steroids as they make me an angry insomniac but took them as prescribed when they thought it was asthma. The big clinic diagnosed that as GERD (aciphex immediately worked on the cough) and I was also found to have NAFL (fatty liver), an enlarged spleen, and stil the high triglycerides.
In 2011 I had an uterine polyp (removed) and endometrial hyperplasia for which I get checked every year because I don’t want to/can’t take the progesterone. I would really prefer a hysterectomy to end that but obgyn is reluctant.
This year I’ve had a number of new symptoms: lactose intolerance, all over tendinitis (phy ther prescribed), incontinence and needing to go alot, leg and feet cramps, horrible back aches (member at the massage place), super fatique and muscle weakness (couldn’t even snap down the buckle on my ski boots last weekend and only lasted a couple of hours on the hill, and I love to ski) and blurred vision, eipscleris and early cataracts. I also have suffered from what is diagnosed as vasomotor rhinitis for YEARS, I keep lotion tissue companies in business. It’s been so bad this winter that I went to the doctor this week and was prescribed a steroid. Then I didn’t sleep last night. Oh and if I drink alcohol I get the same rapid heart beat and insomnia too, to add insult to injury. I still have the facial hair despite oh maybe a dozen laser treatments.
Oh, and since my 20s when this all started I’ve always considered myself “round shouldered” which looks to be a buffalo hump. :0
In reading all these stories I am worried that I’ve had Cushings my *entire* life not unlike some other folks here. I don’t trust doctors all that much becuase I had so a horrible time with “postpartum depression” treatrment. I was so angry after that that I spent several years on the board of a women’s reproductive mental health organization fighting to get the Melanie Stokes Act passed. I am too old and tired to do advocacy again but thanks for doing it and being here. I am reading about all you folk fighting for a diagnosis and I fear that I’ll be in the same boat. God bless you and hugs for all. Hang in there. I have. Sometimes barely.
I’m wondering about my situation. I haven’t been diagnosed with Cushing’s but I had my thyroid removed (Hashimoto’s with goiter, family history of thyroid cancer), concluded menopause, had two car accidents (rear-ended)…all in the space of a few years, around 2003-2006. Up until 2003 (the first car accident,) I was a very energetic, upbeat, even-tempered, fit, active, mother of two, and holder of three part-time jobs including teaching high school. I was 50.
Following the car accidents, I developed chronic disabling low back pain. Following the thyroidectomy I developed all kinds of symptoms involving almost all body systems. I’m now bedridden to housebound for great swaths of time. Up until now I’ve been haunting thyroid and adrenal boards, and plowing my way through endocrinologists, MDs and naturopaths looking for answers.
Starting in 2006, I began experiences episodes I call “tizzies” which have baffled all concerned. They last from 6-8 months, building up, reaching a peak, slowly subsiding. They are extremely debilitating and involve many, many symptoms mental and physical. After six or seven of these, I’m convinced they are episodes of extremely high cortisol and I do have some labs to support that, though they are from alternative type laboratories. The saliva ones take four samples spread throughout the day and the 24-hour urine ones are as they sound.
During a trough I have a saliva lab showing mostly low cortisol values. During a different trough I have 24-hour urine results from which the ND pronounced I had Addison’s-like adrenal function. During a recent peak I have both a saliva and 24-hour urine showing off-the-charts high levels of cortisol. Coming down from that peak, I have saliva results showing cortisol low in the morning moving up to extremely high at night.
I’m 31 years old and feel like I’m 80. I’ve been ill for so many different things over the past couple of years.
In the past year alone I’ve seen 5 doctors who couldn’t tell me the time. They made me feel like I was crazy. Even when I got double vision in my right eye and had to wear an eye patch for 3 months. No one could figure out why. I still have vision disturbances but after two med packs of steriods the double vision went away.
I came across this web site last week and connected with so many things from other people. I printed off the sheets and took them to a new neurologist I was scheduled to see. To my amazement he completly agreed with me! He said it was very likely I did have cushings and/or PCOS.
He scheduled an appointment for a Endocrinologist that specializes in this area and I am to see them Tuesday. I will update from then but I want to say I’m grateful for this site because it gave me some hope of an answer. I’ve been so miserable. I felt like my soul was trapped by my body and I didn’t even have the energy to make it better.
If you’re doctor makes you feel crazy, find another one. I know even with insurance it’s expensive but help is imperative.
Here’s a list of my symptoms:
-hump on my neck (have had for a while and thought it was from bad posture!)
-cyctic acne
-hair loss
-hair growth where it should not be
-loss of libido (I’m 31 this is so not right)
-fatigue
-muscle weakness
-back pain
-fat in the middle
-moon face
-horrible stretch marks
-no period for over a year (my last gyno told me I was just lucky)
-vision disturbances
-depression
-anxiety
-hypertension
-extremly low cholesterol
-hard to breathe, like there’s somthing heavy on my chest
-reoccurent kidney stones
-cyst on ovaries
-frequent bathroom visits
-terrible constipation
-swelling of legs and feet
-water rentention
I am in a pickle, and i feel its time to take my head out of the sand and get this Cortisol thing sorted. So here goes.. My son is 7 – i breastfed for 2 weeks as only a tiny drop would come out and we just could not get it to work…. But 7 years on i still have white/milk like discharge from right breast, and clear from left. Mainly right breast. I informed my doctor for the last 7 years everytime i went that it was odd it was still coming out- and that i was literally tired ALL the time. I was also depressed – so i was put on medication for this, and each time i mentioned this, it was always put down to depression. Or how is your diet? etc. I grew tired of this old answer because life was good- i had nothing to be depressed about- and my lifestyle and eating habits are really good.
So the doctor ordered several blood test, a full looking over. And scan for my breasts- which were normal. But the blood test came back with high cortisol.
I do bruise easily yes, lower back pain, sever fatigue- but the doctor said bec i didnt not have the swelling etc it could not be cushings.
Next test was 24 hour urine collection and dex suppression (not sure if thats spelt right) test.
Still cortisol came back high. but prolactin was not high?
My doctor then refered me to a endo – which gave me an appointment almost 9 months away- (major shortage in endos where i lived- and i was not considered a risk)
IN this time i seperated from my partner and just got stuck into work- put my head in the sand and when i wasnt working or looking after my son i slept. Not normal.
I went back to the doctor again finally a year later – ready to sort this out- breast scan again- still fine. Blood test- cortisol still high, little higher than last two tests she said, but not alarmingly high.
I cant take any contraceptive pill etc as they make me crazy. Something is up with my hormones. I had a miscarrige 2 months ago, followed with severe abdo pain- for a month and a half. I am not one to make a fuss and very high pain tolerence so no ultra sound was given at first just antibiotics and assumption it would cure it.
I lived with it for one more month- then went to doctor again- scan done- ovary bleeding and other in wrong place- shrugged off and told come back in 8 weeks to see if on going problem.
Arhhhh
And now i have to get back into Endo and be placed in another waiting list to be seen. Because i am 28 – i think they do not see me as a person who needs help the quickest. Its just i dont carry on about my symptoms and moan- i get on with it, i have to, i am a mum- i am so frustrated now tho- something is not right.
Any advice. I dont know- any reassurance or explanation – help anything would be appreciated greatly.
I feel like i am some kind of person to the doctor who is one of those ones who is looking for an illness. But i am looking for an answer to my symptoms.
My Comments: Onset symptoms: headaches, low back pain, diarrhea, fatigue, muscle/joint pain, memory loss, weight gain in abdomen, bloaded red face, & blurred vision.
Ongoing symptoms: right flank pain (just underneath ribs), stretch marks on stomach and back of upper arms (not purple), impotence, blurred vision, dry/itchy eyes, insomnia, fatigue, muscle joint pain, memory loss, fat around abdomen & face.
Jordy is a British man who has been dealing with Cushing’s and many surgeries.
He finds rollercoasters boring, barely broke a sweat zip-wiring off the Tyne bridge and even a parachute jump did not raise his heart rate.
Just a few years ago even the thought of daredevil exploits would have terrified him, but now Jordy Cernik is frightened of nothing.
While that might sound an ideal scenario, the 38-year-old’s new-found bravery is actually the unexpected side-effect of surgery for a rare condition.
Cushing’s Syndrome resulted in the dad-of-two having an operation to remove the gland which produces adrenalin, the hormone which makes us feel scared.
He says: “I would never have had the guts to do any of this, but now nothing fazes me. I’m up for anything – I’m even thinking about doing a wing-walk on a plane too.
“I nearly did a bungee jump a few years ago, but I just couldn’t do it.
“Now I just take whatever is thrown at me and if a challenge helps me raise money for charity, the more daring the better.”
Over the past four months he has completed the parachute jump and zip-wired from the top of Newcastle’s Tyne Bridge and now he is getting ready to complete the last of a trio of challenges – next month’s Bupa Great North Run.
“The doctors didn’t tell me this could be one of the side-effects of the operation,” says Jordy. “But then the condition is so rare I don’t think they know everything about Cushing’s yet.
“Doing the skydive was the ultimate test. I thought that if I was ever going to get scared again then that would be the moment.
“But as we took off in the plane I felt nothing, and when I edged towards the door to jump I felt nothing, and even when I leapt out and pulled my parachute, I didn’t feel scared at all.
“It can be quite frustrating as well though.
“The first time I realised I had changed was when I went on the rides at a theme park with my kids and I just didn’t feel a thing. I just sat there, bored.”
However, the last of his hat-trick of challenges, the Run, will require him to push through the ever-present pain which he has endured for years as a result of Cushing’s.
Britain’s biggest mass participation event, for which The Daily Mirror is a media partner, takes place over a 13.1 mile course from Newcastle to South Shields.
But the syndrome has left Jordy, from Jarrow, near Newcastle, with arthritis, back problems and brittle bones. Worse still, the absence of adrenalin means he now lacks one of the body’s natural painkillers.
“I’m always in pain,” he says. “I’ve just had to learn to zone it out day-to-day and I’m going to have to do that even more when I’m on the run.”
Cushing’s affects around one in 50,000 people in Britain.
It causes a malfunction of the adrenal and pituitary glands which means increased amounts of corticosteroids are produced – often leading to massive, irregular weight gain.
In just three years 5ft 8in Jordy ballooned from 11st 5lb to almost 17st.
While his limbs remained slim, the former Territorial Army recruit saw the pounds pile around the major organs in his torso and head.
“I went through years of hell and I can only describe it as living in someone else’s body,” says the part-time radio presenter and events host.
“I developed this big round moon face and really quite large man boobs, which was so embarrassing.
“But there was absolutely nothing I could do about it. I could go to the gym six days a week and still couldn’t lose any of the weight.
“One of the worst things was that people would stare.
“Sometimes they’d take the mickey – often to try and make me feel better, by making light of things – but it would almost always hurt my feelings.
“And my career as a presenter suffered. I tried to play up to the character of being a big, jolly chap but I always felt I was too fat for TV, which is what I would have liked to do a lot more of.”
But it was the effect on his home life with wife Tracy, 43, and daughters Aimee, seven, and four-year-old Eive that for him was far worse.
“I had other really difficult symptoms which included profuse sweating which meant I couldn’t even hold my kids without wrapping them in towels first,” he says.
“Anyone who has children knows how hard that is, not to be able to do normal things. I often used to be in tears.
“Another symptom was extreme grumpiness, so I would find myself suddenly getting really angry and just exploding at them, plus I was always too exhausted to play with them. It was terrible.”
Jordy believes he can trace his symptoms back 15 years although his Cushing’s was only diagnosed in 2005.
He had visited his local surgery with a string of complaints, but by chance saw a different doctor one day and the syndrome was diagnosed.
“I don’t have any ill-feeling about that,” he says, “because the syndrome can be tricky to spot, partly because it is so rare.”
He went on to have both his pituitary and adrenal glands removed but needed a total of seven operations between 2005 and 2010 and not all went smoothly.
During one to remove his pituitary gland, which is inside the skull, the lining of his brain burst due to the stress of repeated surgery.
And while removing a rib to access the adrenal gland in his torso, his lung was punctured.
That wasn’t the end of the complications. He later developed severe meningitis and ended up on a life-support machine.
“But I still consider myself lucky,” he says. “The doctors told me, ‘You died twice really, you shouldn’t even be here’.”
Things have begun to look up in the past few years, however. The Cushing’s is in remission and Jordy has lost four stone.
His life hasn’t returned to normal entirely – he still has to take 30 pills a day, a cocktail of painkillers and hormones, plus drugs to slow the corrosion of his bones.
He has also been diagnosed with another rare condition, sarcoidosis, which creates nodules of irregular cells in the body and can cause serious complications. He’s convinced he has always had it but it has lain dormant until his body was at its most vulnerable.
At present the nodules can only be found on his skin and he’s being monitored to ensure that it doesn’t spread to his internal organs.
Thanks to the surgery, his life has improved enormously since 2010.
In July he had a breast reduction op which not only improved his appearance but also removed the dangerous accumulation of fat around his heart.
Part of this new chapter involves taking part in the Great North Run and raising money for the Cash for Kids appeal run by his local radio station Metro Radio.
The appeal aims to help children and young people in the North East who are disabled or have special needs, or those who suffer from abuse or neglect.
Jordy’s fundraising goal is a relatively modest £1,000, but for him joining the half marathon’s 56,000 participants on September 15 will be as rewarding as hitting his target.
“I really don’t know if I’ll be able to complete the course.” he says. “But I’m looking forward to it and I’m going to give it my best shot.
“Not feeling fear may feel like the power of a superhero, but what I really need for the Great North Run is superhero strength.”
The Bupa Great North Run is Britain’s biggest mass participation event and is organised by Nova International.
It will include world class athletes Mo Farah, Haile Gebrselassie and Kenenisa Bekele – plus 56,000 other runners.
The event is live on BBC One on Sunday 15th September between 9.30am to 13.30
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