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In Memory: Bonny Hamm, October 12, 2009

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in-memory

 

I did not know Bonny personally but she was an Australian  member of the Cushing’s Help message boards who rarely posted.  Her In Memory page on the boards is here: http://cushings.invisionzone.com/index.php?/topic/43923-rip-bonny/

She was only 45 at the time of her death October 12, 2009.  I’ve known far too many Cushies who have died far too young from this disease.

Bonnie’s Avatar

Bonny wrote July 1, 2009

I was sick with ALL the symptoms (about 30-40) for 5 years. Finally got correctly diagonosed and had my left Adrenal Gland and its tumour removed in June 2007. The recovery was long and hellish. The worst symptom after the operation was 3 months of constant itching literally from my scalp to my heels and every inch of skin in between. I also had pain in every single joint of my body, along with all the pre op symptoms that took a long long time to improve.

Now two and a half years on, I have a second tumour… on the same side! No idea how that can be seeing as the gland is gone. My Endo is overseas so until he comes back I don’t know much, but they are running more tests and I am waiting for a surgery date to go through it all over again!

All the symptoms are horrible, but last time I particularly hated the fractures (still have a few of those),as they made life so difficutlt and painful, but also relly hated losing half my hair, and the weight gain and moon face. Feeling awful is terrible, but when you add the things that make you look horrible too, its pretty hard to take.

As a single parent, (divorced), life is very hard with Cushings as you don’t have anyone else to do the things for you that you cant do yourself, or help you with your own personal stuff.

Before and after Cushings

Before and after Cushing’s pictures.

Rest in peace, Bonny!

Beth said it best on Facebook

(I) lost a very strong, courageous friend to the very disease she suffers from.. your pain is gone now, Bonny.. Rest well and thank you for touching my life. ♥

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.

Voices from the Past: Margaret S (Maggierose), Possible Adrenal Bio

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undiagnosed 5

Hi

I’m new to cushings and just looking for some insight into this disease. I’m 67 yrs and for the last 15 yrs I have not felt good and problems getting worse with no explanations in the past. After discussing problems with my Dr I was tested twice for thyroid but tests came back normal.

I do have other problems due to surgeries in the past, I have adhesions, scar tissue etc. I am now type 2 diabetic since last 5 yrs.

I was admitted to hospital because of stomach pain in July this year, I had a cat scan which showed I had tumours on my adrenal glands. The left being the largest. I am waiting to see the endo surgeon in November but have just finished some tests I’ve blood, 12 hr and 24 hr urine specimen. No results as yet.

My symptoms are as follows.

Sweating mainly evening time around 9pm

Can’t sleep until 3am, but could easily sleep on afternoon if I allowed myself.

Changes in face. When I look in mirror I often think this does not look like me.

I have put weight on but not a lot. I have been noticing a lot of facial hair on my face.

I had very, very thick hair and it’s now extremely thin. I have a type of rash on my face which has got worse over the years. It seems like my legs and arms are much thinner than they used to be but my abdomen is getting larger, mainly my upper abdomen. I don’t have any stria but have similar marks on my legs especially around my knees. My skin marks easily. I also seem to have a small buffalo hump on my back. Seem to have brain fog but usually put that down to age. Feel tired all the time.

Some things I can maybe put down to age.

I would appreciate any comments from members. I will let you know when I get results.

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Shannon, Pituitary Bi0

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A Golden Oldie

The pituitary gland

The pituitary gland

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

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Sue, Undiagnosed Bio

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A Golden Oldie

Hello – My name is Sue and I’m 42 years old.  Before Friday, 10/15/10, I had never heard of Cushing’s.  I went in for a physical and had routine blood work done (fasting) and then went in the next day for a cortisol and aldosterone test.

This was a new doctor who didn’t know my history… she noticed my ::blush:: beard, red puffy face, and central obesity and then started asking me some questions.  I stll had no idea why this many questions.  She said that she wanted to get an abdominal ultrasound and wanted me to seen an endocronologist.  Ummmm…. ok… still had no clue. After my cortisol came back at 23, she called me back in and explained that she wanted to get a CAT scan of my abdomen.  I asked her what this was all about, and she said that she thinks that I have Cushing’s.

I have been on blood pressure medication since 1998, and my ‘normal’ bp is 135/90.  At my physical it was 155/100, another warning sign… she doubled my meds and had me come in the next day.  BP was better 145/90, but was still high… so she prescribed an additional medication.

I don’t want to make this too lengthy, but I have several other symptoms too…  I am currently disabled due to depression/anxiety, and I have even gone through ECT treatment twice for it.  I take meds for depression, anxiety, sleep and psychosis.  I have to take a potassium pill every morning to maintain a healthy level and some mornings I can’t even move for a while due to joint pain.  Hot flashes and night sweats are not frequent, and I thought I was going through the beginning of menopause.  At times I would have sweat dripping off of my forehead.  If someone would look at a picture of me and see if maybe I resemble a Cushie??  I am waiting for the appointments, but the more I read about it, the more it sounds like me.  Thank you.


Sue also submitted a second version of her bio:

Hi!  My name is Sue, I am 42 and I live in Central Massachusetts.  During my physical with a new doctor, my blood pressure was found to be high, even though I have been on Hypertensive meds since 1998.  She doubled my dose, and it was still high.  She then put me on an additional medication, and that took it down a little bit. She then noticed my razor stubble on my neck and chin and asked about that.  Prior blood work showed that my cardiac inflammation was 5X’s the “high” limit (2 years ago) and the doctor at the time told me to take 1 adult dose asparin a day.  I had severely low potassium and she told me to take a supplement.  I am 5’5″ and weigh 224 pounds an it’s literally ALL in my stomach and cest and back.  My face is all puffed out and red and splotchy.  I suffer from sleep apnea and I lose my breath if I lay down flat on my back.  I thought I was having hot flashes, because I have been having night sweats and during the day I sometimes get so flush and hot that the sweat literally drips onto the table.  I have rosacea and I flush easily.  I am disabled due to depression/anxiety/psychosis and I have even undergone ECT treatment for it (electroconvulsive therapy-shock treatment)

I was reading some of the bios and started to cry…  I could see me in so many of the stories and pictures.  Could it be possible that all of my issues are related to this disease that I had never even heard of before?  I do not want to be sick, but if it is Cushing’s that I have, I will have hope that I haven’t let myself go. 🙂  You all seem to be very loving and supporting.  Thank you for being here.

There are other symptoms I have, but these are the most bothersome.  My blood cortisol level came in at 22 and my aldosterone was high also.  I am waiting for an appointment for an abdominal CAT scan and a referral to an endochronologist.

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Roberta “Bert” P, Undiagnosed Bio

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Hello Everyone,

Like all of you I am in pain, gaining weight, have moon face, etc. I have had Fibromyalgia for over 4 years and am lucky to have a very good doctor for that who is a specialist in his field-Dr. Pelegrino.

However for the last year or so I have had pain that is more than the tender points and general fatigue you get from Fibro. We started giving me cortisone shots every 5 weeks or so for the “bad” areas, but the “bad” areas are worse now and have enveloped my muscles to where I don’t know what to do. My fingers are aching just typing this. Does anyone else experience this? Do you use the thing that you can talk in and it types? I have so many questions but will have to ask more later.

My main question is about this horrible tightness and pain to turn my head-is this a symptom? I have had it for more than 2 weeks it is from the base of my skull to my shoulder blades. Any suggestions to help ease this would be welcome. I take Vicodin now but it is not affecting it and can’t take steroids because I am having the test next Monday to see how high the cortisol is. I had a saliva test and it was pretty high on that so now they are trying this.

I also have elevated blood sugar, lowered thyroid, higher blood pressure and the purple stretch marks on my stomach. My face has officially become “moon” so is this pain from the “hump” forming that I have read about? See how scatterbrained I am-my memory is totally gone-if you tell me something and I have not written it down it is forgotten, which is bad especially for my job.

Thank you in advance for your support and helpful advice.

Bert

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Voices from the Past: Desirae (Desirae805), Undiagnosed Bio

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I am a 24 year old newly graduated registered nurse (dec 2011). Who is currently undergoing testing to confirm or r/o cyclic cushings at UCLA.

I have always struggled with my weight and self esteem and I finally had enough in april when I went to see an endo to see what was going on I mean how could I not be losing weight netting 1100-1200 calories aday and doing spin class and 5k walks! I have done every diet known to man and ws even anorexic for a while.

I had elevated urine test at UFC of 69.7, not high enough to confirm cushing but is very suspect because of my s/s. I have round, face, abd obesity (most people think I am pregnant), stria, hair loss, fatigue, anxiety, tachycardia, muscle cramps (low potassium), buffalo hump, and so on and so on. I am so frustrated I just want to cry all the time, I just want to know what is wrong.

Curently I am to see my doctor in 6 weeks and have 10 24 urines and 12 salivary cortisols to do. I am a nurse and doing a 24 urine at work is hard. I am supposed to get married next year and I want to feel beautiful not sick, not tired, not neck pain, and not heavy.

I am tired of hearing you probably don’t have that it’s rare when obviously something is going on. AND I HATE hearing your YOUNG you can lose weight when ever you want.

Voices from the Past: Heather P (Heather), Undiagnosed Bio

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undiagnosed 5

 

This is about my husband…2010 diagnosed with rheumatoid arthritis (one day he was fine, the next day he was in agony type onset). Was placed on methotraxate, prednisone, humera, actemra, etc. for the next 4 or 5 years. None of the bilogics worked for more than a month. Pred and pain meds became a mainstay for about 5 years. I started to question the accuracy of the diagnosis and was patted on the head and basically told to forget it and go my merry way and accept it. We were always told the bloodwork “was fine. no issues with the exception that when Neal hurt, his inflammatory blood factors were low..which was odd but it is his body”. It was left at that. We basically gave up the Rheumatologist in 2015 as it was getting us nowhere and nothing was changing. Something was still wrong.

Late 2015, his weight gain went crazy. He developed moon face, the traditional hump on the back of his neck, huge adbdomen with tons of stretch marks everywhere, no energy, listlessness, severe pitted edema, paper thin skin, spots all over his legs, rash on his chest, pressure on his chest and lungs when laying down, sleeping all of the time (as in 2 seconds after he hit is recliner), sleeping solely in the recliner, lower extremety severe weakness, nausea, etc. This led to congestive heart failure in Jan 2016 due to the extreme fluid retention. Placed on lasix, indomethacin, blood pressure meds. Cleared by heart doc two weeks later to return to work.

Still no results…..still spiraling downhill. March 2016 Get steroid injection in the knees as he cannot walk due to the weakness, swelling and pain. Vision issues are now added to the list of continuing issues.

June 7, 2016. Go to another doctor out of state and get more bloodwork done as we cannot take it anymore. They take more blood. Doc does comment on his paper thin skin and mentions that is usually from steriod use. Neal passes out and has to be taken out of the office in a wheel chair as he cannot walk due to the extreme weakness and pain. Increase lasix to 2 a day and get prednisone.

I have finally had enough. I cannot stand seeing my once vibrant active husband just laying there…just existing….just barely…. I make a comprehensive list of all of his symptoms, make a graph of his blood work results from 2010 to present…what I found was astonishing…his results were NOT ok. I took him to the local doctor and pleaded and begged for him to figure out what is wrong with my husband. I initially go thte ole “I don’t want to step on anyone’s toes” etc. as we had just gone to the new rheum. doc a week ago. He ordered a new echocardiogram and it was clear. Added new drug. Neal had an allergic reaction and was put on high dose (50 mg daily) of prednisone combined with zantac and zyrtec for 3 days.

A week later, his bloodwork came back…gout, hypothyroid (based on symptoms), severe internal infection. Add more meds.

Go to eye doc and get the diagnosis of cateracts in both eyes. Doc felt it was due to prednisone due to the rapid onset. Surgery scheduled for next week.

In the meantime, Neal has gone even more downhill….now he feels like he periodically fractures a rib, a finger, etc. Even more stretch marks are present. He is listless and cannot function. He cannot walk. Add decreased urine output even on the lasix). He just lays there stuck in a shell. He has missed so much work in the past 2 weeks. He lives as one would in a nursing home…I take care of his daily needs. He cannot.

I go back to doing my research online. Cushings Syndrome pops up…OMG….Between all of the biologics, the up and down on the prednisone, zyrtec, steroid injections , etc. has sent him into the major downward spiral that he is experiencing…..Steroid induced Cushings along with hypothyroidism (might even be hashimoto’s..too soon to tell). We came to this conclusion at 2 am this morning. To further prove this, he took an additional 10 mg of prednisone immediately. I know…he refused to go to the er…he wanted to prove it one way or the other. (I did tell him that I was gonna invoke my medical poiwer of attorney and have him taken out by ambulance on tuesday if not sooner if this didn’t have some impact). Well…he can WALK this morning. He actually went to the bathroom to use the toilet….THAT is a huge deal to us. He is in pain but he can MOVE!!!! He went to work this afternoon as well. He has to have his cateract surgery so he can see to work (we will lose our home…company house…and everything else if this is not done asap). That is his priority. Once the surgery is done, we will be headed back to Nebraska to approach the doctor there about our findings relating to Cushings Syndrome.

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Voices from the Past: Jestina (jestina902), Pituitary Bio

2 Comments

Hello there! My name is Jestina and I’m 16 years old. I just recently found out that I have Cushing’s from an endocrinologist in Washington D.C. It has taken three years to find a diagnosis. I have struggled with hormone issues ever since I was thirteen and my old family doctor originally diagnosed me with diabetes and PCOS. I didn’t think that it was unusual, especially because my mom has PCOS and diabetes runs in my family. My doctor told me that I was going through treatment for PCOS by giving me a pill to take. When I would take it, I would become very sick and I had unbearable stomach pain. It got to the point where I stopped taking it because it was hurting so badly. I was also not having any results. I still had unusual hair growth and I was starting to gain weight. This went on for a year.

About a year later, I started to face horrible back pain. I have scoliosis and my family, along with my specialists believed that it was caused by my spinal fusion. I started physical therapy when I was 15. I started to develop the “buffalo hump” and my physical therapist believed that it was the cause of spending too much time online. I thought that it was very strange though because I didn’t go online very much. I didn’t even have Facebook or any other type of social networking account. So, I went through about six months of therapy and I saw a small improvement but it didn’t last very long.

When I turned 16, I started to face even worse pain than before in my upper back. I went through multiple rounds of X-rays and spent two months home from school while my specialist was trying to find what was wrong but each time, he could never think of a reason for why I would be facing so much pain. I ended up going through a round of pain injections and it eased the pain enough for me to be back in school for the remainder of the school year. On my follow-up appointment after having the injections, my specialist suggested that maybe my pain had been caused by a hormonal problem. My mom decided to change family doctors and we went into her office less than a month ago. When my new doctor reviewed the medicines that I had been taking, she then informed us that the medicine that my old doctor gave me was actually for my diabetes and that it was the reason why I hadn’t seen any results. After I described my symptoms, (buffalo hump, moon face, unusual hair growth and weight gain, etc.) she left the room for about forty minutes to research. When she returned, she suggested that I had Cushing’s and that I should see an endocrinologist. She ordered a few rounds of blood tests and gave a referral to a doctor in Washington D.C.

My endocrinologist reviewed the blood tests and agreed with my family doctor that I most likely had Cushing’s. He ordered more blood tests and a 24-hour urine collection and they came back the way that he expected. I am now awaiting a CT scan for my surgery which should happen sometime in the next few weeks. I am hoping for great results. Apparently once my surgery is finished, I shouldn’t see anymore problems with diabetes, PCOS, or the symptoms that come along with Cushing’s.

Thank you so much for reading my bio!

Voices from the Past: Emily B-C (EmilyBC), Undiagnosed Bio

2 Comments

undiagnosed3

 

Hi.  I am a 40 year old female who has been feeling “not quite right” for almost 10 years.  I have been tested on and off for many different things and have been diagnosed with Epstein Barr, Adrenal fatigue, and h.pylori during these years.  I continually have vitamin D deficiency issues.  I have a rash on my lower legs that never really heals even with the most powerful of steroid creams.

This year, I started feeling worse than usual.  I have zero energy and my brain is in a perpetual fog.  My muscles and body ache, my face is round, and I have gained 40+ lbs over the years.  There are days that I physically cannot get out of bed.  I have fainting spells and a racing heartbeat at times.  I crave carbs and salt.  There is not enough water in the world to drink and I have to run to the bathroom frequently.  No matter how hard I try the weight will not come off.  When I get massages my therapist tells me that my adrenal glands are swollen and I feel very nauseous every time she runs her hands over that spot.

I was an avid equestrian- 3 day eventer.  I was riding and showing no less than 3 times a week.  I was getting fit.  Now I am just a useless blob that can’t do anything.  I have been pushing to go to the barn to just groom and be with my horse as much as I can.  

My doctor found that I have an unusually high blood cell count a couple of months ago.  I was sent to a hematologist to find out why.  We did so many tests I quit counting.  The conclusion was that I am not sick enough to be sick.  So many tests were coming back normal or high normal.  No lupus, no leukemia, no answers.  I finally asked about Cushing’s because I have a majority of the symptoms listed.  My doctor was skeptical, but agreed to let me do a 24 hour urine test.  It came back high.  This has allowed me to move to an endocrinologist.  I also have high levels of reverse T3.

So far I feel like a complete lab rat.  I have now done 2 salivary Cortisol tests and have another urine test this week.  One of the 2 saliva tests came back very high.  My doctor said we have to do yet another saliva test to test the last results.  After all of this we will do a dex suppression test.   

At this point I am very depressed that I am unable to live my life.  Riding is not an option because I just get “floppy” and risk falling off.  I was studying to get my vet tech license, but the brain fog prevents me from remembering anything I read.  

I am so lucky to have a doctor that believes my symptoms are real.  She does not gloss over the fact that it may take a long to diagnose what is going on, but she wants answers as much as I do.  For now, I am just a good lab rat.

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