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April (April), undiagnosed bio (PCOS)

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Originally posted December 28, 2008

 

My name is April…I am 34 years old and recently started having some issues that led my family Dr. to do some bloodwork. My cortisol levels came back very “very high” according to him, with regular female hormones “slightly out of whack.”

I am so condufused at have no idea where to turn. I found this board and in reading the bio’s it was like reading “my story”. I have felt like I am going crazy and no one understands…including my unsupportive husband.

My history…
2 children…premature (they re 15 & 16 now)
2 miscarriages in past 5 years
hemmoraghed 3 times, hospitalized -D&C
Heavy abnormal periods w/severe back pain
Diagnosed with PCOS 2 years ago after trip to emergency room with what i thought was appendicitis
anemia
Underwieght (5’2…100 lbs) but have “spare tire” around mid section
Have very large Lipoma on shoulder blade near neck
Adult onset acne and boils
RLS
Severe shoulder neck pain
Went to family Dr. recently because I had a 9 day crying jag over something trivial, to the point i couldn’t work!
Dr. prescribed Zoloft and Xanax,for depression,which stopped the crying, but i feel like i may be abusing the xanax.
I feel sad and alone. I just want to stay in my house and hide!
I also have always had anxiety.
My blood pressure has always been low, but Doc has always said that’s normal for person my size.
No sex drive.
Don’t like people touching me.
I smoke, like a frieght train.
I CANNOT SLEEP more than three hours! I can take 15 mg of melatonin and 2 mg xanax and still be up after 3 hours sleep.
I only urinate about 3 times a day which is dark and cloudy and funny smelling. (sorry if TMI)
I am always thirsty!
i could go on and on…

I just want to know if I am crazy or if something is really wrong with me. this is affecting my realtinship with my husband and friends.

my insurance company shanges after January 1st , so i will be making an appt with the surgeon to have the lipoma removed.

Should I see an endocronolgist?
when i talked to my Dr. about my bloodwork, I was so overwhelmed, i didn’t ask any of the right questions.
all I remember him saying is that a norml cortisol range would be 200-300, high 500-600, mine 823.

Does this make sense to anyone?
Thanks for listening!

Any advice would be a god send…
April

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Elizabeth, Pituitary/Adrenal Bio

1 Comment

golden-oldie

 

Originally posted September 24, 2008

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

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

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

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

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

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

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

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

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Sam in the News

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Sam is Jackie’s daughter.  There is more info about their family’s Cushing’s experiences here: https://cushingsbios.com/2013/06/23/jackie-samsmom-adrenal-bio/

Sam and her mom also participated in a Cushing’s Help interview which you can read here: http://www.cushie.info/index.php/cushing-s/about-us/interviews/207-sam-and-her-mom-jackie-february-2-2005

And one to listen to on BlogTalkRadio at http://www.blogtalkradio.com/cushingshelp/2008/05/15/interview-with-jackie-samsmon-jordan

This article was posted by long-time message board member Samsmom about her daughter Sam.

AIM senior Samantha Edgar doesn’t let health issues hold her down

superkidedgar

SNOHOMISH — Samantha Edgar, 17, has faced limitations with serious health issues, including Addison’s disease and osteoporosis. But the AIM High School senior is overcoming them in amazing ways.

Question: Your school administrator says you come to school every day with a smile despite some serious health challenges.

Answer: I’ve had adrenal deficiency since I was 4 years old because my adrenal glands were infected with a lot of tumors. The guy who diagnosed me (Dr. Constantine Stratakis) I’m actually doing an internship with this summer at the National Institutes of Health. It’s pretty nerve-wracking. It will be fun.

Q: Wow. How did you end up with that?

A: (My mom and I) were talking about asking for an internship, and joking that he’d probably just say apply, like he normally does. … I asked “if I can maybe shadow you this summer and, um, hang out?” He was like, “Of course.” All the interns just stared at me. (Most of them are in medical degree programs) who’ve applied five times.

Q: What do you hope to get from it?

A: I’m hoping to understand my own thing a little bit more afterward, and then have opportunities after that stem from it. It’ll be interesting at least.

Q: Your mom is planning to rent an apartment and live out there with you.

A: I’m still her baby. … If anything, though, it’s the best place to have an issue.

Q: Your last life-threatening experience was when you were 10. You had the flu and were unable to keep down your medications, which you need to take three times a day. What other issues are you susceptible to?

A: If I am to break a bone or something I could go into what’s called adrenal crisis. (The body) goes into shock.

Q: And yet …

A: I do mounted archery, which is horseback archery. My mom is pretty much nervous every time I go down the course because I’m probably going around 30 (mph) and shooting an arrow at a target or five.

Read the rest of the article here: http://www.heraldnet.com/news/aim-senior-samantha-edgar-doesnt-let-health-issues-hold-her-down/

samhorse

 

Lynn M, Adrenal BIo

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golden-oldie

Hi everyone!

My name is Lynn M. I am a 39 year old with adrenal Cushing’s. My left adrenal gland was removed on Nov 29, 2000, in Portland Or. 24 hours after surgery, I went into adrenal crisis and was in a crisis for three days due to sodium and potassium crash.

My tumor had been present for about 5 years but it took three years of different doctors to diagnose me with Cushing’s. Now one year post op I have lost 45 lbs on weight watchers but still taking 35mg of cortef and 50 mg potassium and diabetic. My other glands have not started to function yet now I am at home recovering from ankle surgery scared to death of infection or not healing because of the steroids…Has anyone else had surgery while still on high doses of cortef?

Please help me with any info you can…Thanks Lynn

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Tammy, Adrenal Bio

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adrenal_glands

 

My name is Tammy. I am a Wildlife Biologist and Professional Licensed Snake Trapper located in Maryland.

I was just diagnosed with Cushings in the past week. I am so overwhelmed and confused and have been sick for quite awhile.

I do have to have a surgery as my right adrenal gland is dead. I have always been a very active and healthy person.

Right now I feel very alone and do not even know what to add to my bio.

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Ryan C (Awesomenatious), Pseudo Cushing’s and Chronic Fatigue

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undiagnosed2

 

I am trying to find help and an answer. I have had urine tests and a suppression test using Dexamethasone. This text was done twice because the first time I still had high cortisol. The second time a larger dose was given and suppression occurred.
Interestingly for a couple of days after the test I felt great. But then I crashed and felt terrible and then levelled out again at my usual fat, sweaty self.

No investigation to my pituitary, no further tests other than a picture of my adrenal gland (which was taken because I was being treated for diverticulitis and issues with my digestive tract.

So here I am. No doctor is willing to take on my case, I still have hyper cortisol levels. But I’ve been told it’s because I’m fat. And

I’ve also been told that high cortisol causes weight issues. So currently I feel like I’m being told I’m fat because I’m fat. How is that helpful?
I have been to the dietician like I was advised. Weight loss occurred but was super super slow.

I have been to CBT cognitive behavioural therapy because that’s apparently something you HAVE to do when diagnosed with Chronic Fatigue.

So here I sit with a Pseudo Cushings and chronic fatigue diagnosis and no help and STILL high cortisol levels.

I did visit an Osteopath, who said he though I had Adrenal Fatigue. And adrenal supplement under his supervision for a few months which helped slightly but I had to stop because it’s dangerous to use for prolonged periods.

But hey, isn’t Having excessive cortisol for a prolonged time even more dangerous ?

I just don’t understand why I have to become an expert in cushings and hypercotisol before any GP doctor will listen to me and help me.

I felt frustrated and let down.

Ryan

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Niamh (niamhiblog), Adrenal Bio

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adrenal-medulla

Full link to my blog: https://niamhiblog.wordpress.com/

I will never forget the day my hair loss went from “God, don’t I leave a lot of hair around the apartment” to “F***!!!! ”. I’d always considered my hair as one of my best features, it was long, wavy, strong, shiny and I loved it! When I started to see handfuls coming out in the shower it was terrifying. I was like a chemotherapy patient, it was unstoppable and devastating. I saw up to three GPs (Family doctors) who all only seemed interested in the level of stress in my life. Not one of them really took me seriously, I did a couple of blood tests, out of my own persistence that something was wrong, but nothing jumped out of these results to my doctors. I kept being told that my hair was falling out because I was stressed but I was stressed because my hair was falling out!

To be fair, this was a particularly stressful time in my life. I had just finished a year working abroad, in Portugal, which I’d found very lonely and isolating. I’d just returned home to Cork but things didn’t pan out the way I had hoped they would on my return. I was living on my own and trying to reacclimatise to something which wasn’t the same. Around the week leading up to the extreme hair loss I’d found myself in a particularly stressful situation. After about two weeks the hair loss settled down from terrifying to worrying. Since no one seemed as bothered by it as I was, I let it take a back burner. The doctor told me it was normal, the hairdresser told me it was common, I fell into accepting that there wasn’t a problem.

Flash forward five months and I’m sitting in my bosses’ office for a meeting. I look down at my arm, both my arms are covered in purple spots. It’s not itchy. It looks like a rash. I run a glass over it. The spots don’t disappear. I let out a loud exhale “phew it’s not meningitis. I’m fine”. I go to carry on with the meeting. My boss is having absolutely none of it. She knows that whatever is on my arm is weird. So she bundles me into a taxi and sends me off to an urgent care clinic. Since I was working as a chemist at the time for a pharmaceutical company, the obvious questions were “were you in contact with any chemicals?”, “are you allergic to anything you’re working with?”. I knew I hadn’t been exposed to anything so I decided to tell the nurse about my hair loss. I can’t thank this woman enough for the next question she asked me. This was a moment, although I didn’t know it at the time, that went onto change my life. She asked me “has the shape of your face changed?” To this I went ABSOLUTELY!

I’d put on weight in the previous year. It had started when I was living in Portugal. I’d put it down to a diet of beer and white bread. I hadn’t known, but any friends who’d come to visit me had thought that I’d put on a very noticeable amount of weight in a very short time. But this hadn’t made sense to me. I was working out at least 5 days a week and even up to 7 days a week. I was lifting weights and getting weaker not stronger. My diet was excellent (except for the booze and cigarettes) but my face and middle just kept ballooning while my arms and legs were turning into sticks. My clothes weren’t fitting. I was ashamed of my face and belly. I wouldn’t let myself be photographed. I was disgusted by my own body.

So, this nurse spotted something which no one had spotted before. She believed me, she knew that something was wrong and she (along with my wonderful boss) started me along the road to diagnosis and recovery.

Next comes a tremendous mistake from me. My attitude of “era it will be grand” nearly ruined my life and landed me ill in a very serious way. If I’d done what I was supposed to do at this point my disease would have been diagnosed and treated before it started to run away, with me dragged along behind it. I know why I didn’t pursue diagnosis. I was lazy about doing the testing, the hair loss had calmed down, I still just thought I was fat and I didn’t realise how sick I was because I had so many symptoms which came on so gradually that they just became normal to me.

I had my first appointment with an endocrinologist in April 2015. Turns out she knew from one look at me what was wrong. She recommended a 24 hour urine test but I had to be at least 6 weeks off of oral contraceptives for the test. I went off the contraceptives but by the time the 6 weeks had passed I just didn’t bother. I didn’t want to carry around a pee bottle for the day and besides the hair loss had settled down and I wasn’t sick was I?

How did I not realise I was sick?

I’d almost gone bald
I was constantly covered in bruises for no reason which didn’t heal
I never got to the bottom of my strange rash
I was swimming in a constant brain fog
I couldn’t sleep at night but I was tired all day
I put all of my symptoms down to sessioning too hard, being hungover all the time and injuring myself when I was drunk.

That was until I woke up one morning at my friend’s house, admittedly after a night of drinking, without the use of my arms, legs or hands. I woke up really early in the bed with stiffness in my limbs. When I got out of bed my legs were no good to me. I dragged myself to the bathroom on my hands and knees and sat in the shower to wash myself. I went down the stairs on my bum, got into my car and tried to drive home to my mam’s house. It took me about an hour to do a 10 minute drive. I couldn’t get out of second gear because I couldn’t press the clutch, which was just as well because my right leg was no good for using the brakes. Once I got home, naturally I was a bit concerned but I’d loosened out after a bit of movement and strangely wasn’t all that bothered by my period of paralysis!

Once I walked in the back door of my house, with my mother behind me she spotted one of the oddest things! It was like someone had thrown a cup of coffee at the back of my head and it had dried on the back of my neck. At this stage my hair was so thin that the only way I wore it was in a bun at the back of my head. This strange staining was there for all the world to see! I’d no idea how long it had been there given it’s not a part of my body I spend much time looking at. Turns out it had been there about a week and I could even see it growing and spreading up into my hair line and around the front of my face.

Mam wanted me rushed to the emergency unit. I wasn’t so keen on that, so we compromised. It being a Saturday we went to the on call doctor. Now starts the saga of doctors prescribing me steroids, steroids and more steroids. Little did I know that my problem was having too much steroids. I hadn’t heard mention of the term “Cushings Syndrome”. Nobody had brought this up. I took the steroids I was prescribed. I went downhill. I wasn’t experiencing the paralysis but I was having horrendous joint pain. I would watch as my hands, elbows knees and ankles swelled to size of large oranges. I couldn’t use a pen with my swollen fingers. Stairs were a struggle with my swollen knees. I hobbled around like an old woman. I didn’t understand what was going on with my body. I was panicking. I went to my GP in Cork, she prescribed a higher dose of steroids. It was only worse I got. She prescribed higher doses of steroids again. I felt this doctor wasn’t helping me, she wasn’t listening to my concerns and her only idea was to keep upping my dose of corticosteroids. What a disaster!

Luckily, my aunt is a docotor in the major hospital in Cork. She got wind of my problems, pulled some strings and had me admitted to the acute care clinic in her hospital for the following day. This was the first of my “holidays to CUH” as I started to call them. Here I saw what I can only call a plethora of doctors. Consultants that take months to years to get appointments with were calling to check on me willy nilly. I saw emergency consultants, rheumatologists, dermatologists, radiologists and finally the endocrinologist. We were all working to the assumption that I had some strange sort of viral arthritis which was causing my joint pain and swelling.

face

It was here in hospital that someone got to the bottom of the strange coffee stain on the back of my neck. It was merely a fungal infection (tick off the symptom of persistent infections).

After having received a very stern talking to from the endrochronolgist I proceeded to do a battery of tests including 24 hour and 48 hour urine samples, dexamethasone 24 hour and 48 hour, several trips and “holidays to CUH” all culminating in a MRI to confirm that I had an adrenal tumour producing far and above the natural and required levels of cortisol. This was the answer to everything.

After my diagnosis I started reading up on the symptoms of Cushing’s Syndrome. I realised that I had every single symptom on the list. Things that I hadn’t even realised were wrong with me until I gave myself permission to be ill.

I had the stretch marks on my arms, sides and legs. I’d though these were from my weight gain but who gets stretch marks on their arms? Turns out my skin was so weak it was tearing.

The cognitive deficiencies. I am someone who had always prided themselves on their intelligence, ability to think on my feet, to understand things rather than learn them. I’d always been a high achiever. I’d noticed myself getting stupider. I would be looking at someone talking to me and I’d be trying to figure out what day of the week it was. I found holding a conversation extremely difficult and very stressful. I wasn’t able to engage with people.I wasn’t able to listen, concentrate or respond. My memory was non-existent. Trying to think was like trying to swim through a thick, gloopy soup. I had put this drop in mental ability down to the partying and finding out that maybe I wasn’t as capable as I thought I was in the working world.
Bio, Continued: The bruising. I was bruising my arm from putting my handbag on my shoulder. The purple dots were actually tiny bruises. My legs were constantly just purple. I couldn’t heal. I was doing so many blood tests that the skin on my arms was constantly purple and wouldn’t heal.

Lack of libido. What libido?!

Irregularities with my period. I wasn’t getting periods at all since I’d stopped using oral contraceptives. I knew I wasn’t pregnant, see the point above and thought that I was just skipping some periods.

Brittle bones. I was diagnosed with osteoporosis at 24.

Joint pain. I wasn’t able to bend my knees to get up or down stairs. My bedroom is three flights of stairs from the kitchen. More than once I ended up stranded in the kitchen, not able to get back upstairs to lie down on my bed and feel sorry for myself.

The swelling wasn’t confined to my joints. There were days my face was so swollen it was hard to see out my eyes as my cheeks inflated and rose to meet my brow bone.

Sleep. I’d turned into an insomniac who wandered the house late at night not awake enough to do something but still unable to sleep.

Body hair. I was managing to grow a beard despite going bald! I started to get my cheeks waxed thinking this was a normal cosmetic procedure that other girls just didn’t talk about.

Stress. The choice between two different types of cheese could cause me so much anguish as to leave me in tears.

Up until the point where I was diagnosed, I hadn’t allowed myself to be sick. After the diagnosis I never let myself feel sorry for myself. I just got on with it. Planned for surgery and that was it.

In October 2015 I underwent a full left adrenelectomy to remove a tumour from my adrenal gland.

After the surgery I’d a whole new condition to learn to deal with. My right adrenal had been suppressed while my tumour was active. This left me with no natural cortisol in my body. A 180 deg turnaround from being pumped up on steroids 24 hours a day. I was on replacement steroids but my body was readjusting. I slept most of every day. I couldn’t pick up a carton of milk. If I didn’t take my medication I was in serious trouble.

I was back at work the week before Christmas. This was much too big a leap! I’d been frustrated by the speed of my recovery. I recovered from surgery quickly but the recovery from Cushing’s was slower. I’d expected everything to just go back to normal after the surgery and hadn’t anticipated the gradual decline in symptoms. I ended up getting very sick with a virus and really thought my family would have me admitted to hospital. There are two days that all I can remember is lying on the couch sweating. I lost 8 lbs in a day! I’d pushed myself too far.

And yet I still didn’t learn! I’m not someone that likes to be inactive. I also just wanted life to go back to normal. I returned to work again in January on half days and gradually built myself up to working full days.

Slowly but surely, I was taking less and less medication. I was able to stay awake a little bit longer every day. My mind was coming back to me. I was losing the bright red colour from my face. One day I woke up, looked in the mirror and suddenly had cheek bones again. I looked like my old self. By January I’d gone from a dress size 14 to a 6 with hardly any weight loss. It was just like someone had stuck a pin in me and I was deflating back down to a regular size. My hair was growing back but still had horrible wispy ends so I chopped all the sickness out of my hair. By April I wasn’t taking any steroids. I’d again pushed myself to the limit and instead of tapering slowly had gone down in major jumps. Weeks where I was doing a major jump involved lots and lots of tears. And then some more tears.

By June I noticed that I hadn’t had a day where my joints were sore since I couldn’t remember when.

Things like falling down the stairs because my legs couldn’t support me won’t be forgotten. Standing at the top of the stairs and knowing I can’t get down. My hands turning into claws. Or accidentally going into steroid withdrawals a few days post surgery (I was the crazy patient running up and down the hospital corridor screaming and crying in the middle of the night). These won’t be forgotten but they will fade in importance. The things that won’t are my little brother coaching me through all the tubes I woke up with after surgery, my friends bringing me bottles of diet coke and fancy hummus in hospital, the friend who came to see me every day in hospital, the one who picked me up and took me home, my mam who told me I was brave and that I’d gone through a lot, and the boy who listened to me cry when the pain still hadn’t gone away.

As of today I have been declared fully recovered bar one more hurdle. My repeat bone density scan. In two weeks’ time I have to repeat this to see if I still have osteoporosis. Whatever about having a tumour at 23, being diagnosed with osteoporosis at 24 just isn’t on! I’ve been drinking plenty of milk and tons of cheese though so fingers crossed.

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