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In Memory: Martha, October 14, 2008

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in-memory

 

StaceyH posted this on the boards:

I just wanted you good folks to know that my dear Martha and partner for 11 years passed away this evening. I’m not sure why I am posting this now, just one thing to check off my to do list and hoping that getting this in writing will help me.

Dr. F had wanted to give Martha an IPSS, but she had a problem with an EKG two weeks ago so the doctor would not release her for surgery. She went for a cardio strees test last week and was to get her results tomorrow. She was feeling “ok” but when I arrived home this evening, I found her in the bathroom. I tried to give her CPR but I really knew it was too late.

She was such a good woman, loved her horror movies and we loved to watch them together. She cared deeply for other people and would go out of her way to tell a stranger hello and learn their name. She was even known to give little old ladies that she didn’t know a ride home if they would let her.

I’m going to miss her so much. This was so unexpected, but deep in my heart – expected. Please, love your loved one like it’s your or their last breath. Push your doctors and advocate for yourselves.

Although Martha never used this forum, she told me she was grateful that all of you were here to answer our questions and accepted us with open arms.

In lieu of flowers that may be coming, I would like people to donate to this forum in memory of Martha. Do you know who to contact or who donations should be sent to via mail?

Please feel free to move this to the In Memory thread.

Thank you again you good folks….
Stacey

Read more about Martha’s story here: A tribute to Martha on Robin’s Blog.

LisaG, Ectopic Cushing’s (Golden Oldie)

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golden-oldie

 

Diagnosed April 1997 with Cushings. They figured it was about 9 years in coming to a head. Started with the weight gain then disc problems (surgery), problems with my teeth breaking, acne, facial hair all the good stuff. Kept changing my hair color as something just wasn’t right but eventually realized it was my skin color darkening.

Took a trip to NYC in Feb of 1987 and swelled up and turned yellow during the trip. Went to the Dr when I got back and they tested me for Hepititas (sp?) and AIDS. Dr asked me if I had been using steroids. Changed Dr’s due to a change in my health insurance.

I talked to her for about 10 minutes about all my symptoms and she said “You have Cushings”. She sent me to an endo at Portland Diabetes Clinic. He got me in to see Dr Cook up at OHSU (Oregon Health Science Univ) and he scheduled the Petrus Sinus Sampling. From that they determined it was an Eptopic tumor.

They started doing Catscans and MRI’s until they found a small lung tumor. I finally had surgery in Sept 1987. The months leading up to that surgery were pretty scary. I ended up being pretty heavily medicated by the psychiatrist I started seeing. I think for me the mental and emotional symptoms were as bad or worse then the physical symptoms.

I’d like to say that’s where this ended but…alas. I started experiencing the same symptoms again and went to the Dr again in April of 2005 and was again diagnosed with Cushings. I am back with Dr Cook and am awaiting the results of the second Petrus Sinus Sampling.

Update October 26, 2006

2nd Sinus Sampling again was negative so again have an Eptopic tumor. After about 4 months gave up looking and decided on a BLA. Since my surgery in Sept 2005 until today Oct 2006 I have lost 60 pounds and my Cushing look is starting to fade. I take my medication without fail and have stayed with my new healthy lifestyle. Still looking for my eptopic tumor, it hasn’t decided to be found yet.

To all those not yet diagnosed or “cured”, Hang in there. If you aren’t happy with your doctor, find a different one. Also, don’t wait for someone else to tell you about your disease. Research!! Hope my next update will be for my tumor removal.

 

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Edith T, Adrenal Bio (Golden Oldie)

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golden-oldie

 

First diagnosed with Cushing’s November 1999

Petrosal sampling confirms Cushing’s in left lobe of pituitary March 2000

Transphenoidal surgery June 2000 (not successful)

From July 2000 – September 2001 on 200 – 400 mg of ketoconazole

Lost weight from July 2000 – November 2000

Began significantly gaining weight again in March of this year (2001)

Currently reshowing all signs of Cushing’s (for a while the buffalo hump and purple striae all but vanished – oh well – they’re back, as is the mid-riff bulge – urgh!)

Still hiking, biking, swimming, and cavorting and refusing to let this whole thing get me down (yeah, right – who am I kidding)

Endocrinologist currently encouraging me to consider stereotactic radiosurgery as I have made it clear I have no desire to allow anyone to remove my adrenal glands (not that I am any more interested in having my pituitary irradiated when it’s a hit or miss deal).

And that’s my history.

Edith T
from Squamish, British Columbia, Canada

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Rox (Rox) Undiagnosed Bio

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undiagnosed2

40yo female, in the process of diagnosis, high cortisol confirmed by UFCC (4x) & saliv cort (2x) & serum, high ACTH, DHEA, & MSH; did not suppress on DST (0.5mg dose), suppressed on high dose (1.0mg), 7mm pit tumor by MRI. Waiting for decision point from endo, considering IPSS or transphenoid. Aware of BLA as an alternative but that seems to be roundly not recommended as first-line treatment from all the reading I’ve done.

Primary question is if anyone has experience with Dr. Daniel Kelly in Santa Monica? He works with my endo and was recommended. I am open to nationwide if necessary, but if he ranks at the top anyway then would go with him.

Is QOL typically worse after surgery? If so, what’s the point?

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Michelle B (Mshelle), Cyclic Cushing’s Bio

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Hello all, I’m Michelle mother of 3 beautiful children, I work part-time, 33yrs young, non-smoker, non-drinker, overall health is good for the most part…..Where do I even begin.

I just recently received the diagnosis of cyclic Cushing’s. I’m not really sure how long I have actually had Cushing’s because I have had a diagnosis of PCOS since I was 17 yrs. old ( I’m now the ripe young age of 33). However looking back through labs with my endocrinologist who I see every 6 months, my ACTH levels have been elevated for a bit over 1 yr. It was not until recently January of 2015- things were going terribly wrong.

Starting in January I started to feel genuinely unwell, on a regular basis. I cant really explain all my symptoms there were so many different sensations and feelings that were seemingly different daily. However the red flag was I was having blood pressure spikes from really high, to very low back to back. I never had any blood pressure issues so this was a concern that led me to see a cardiologist. Upon tons of testing the cardio MD felt that something was telling my otherwise very healthy heart to do this and I should see a endocrinologist. (thank goodness for him) I contacted my endo and let him know…. the testing began.

I did every test: the midnightcortisol saliva test, dex suppression, 24 hr urine test, CRH stimulation testing. And I did them more than once. Each time it was a different response either, inconclusive, normal high, or high. I was then referred to the head of the Cleveland clinics pituitary department Dr. Kennedy. He said he is having a hard time believing when he looks at me that its Cushing’s. However all my labs say it is. I will say I do fit the mold of PCOS to a tee- which symptoms of that do coincide with Cushing’s but he still said we have to be sure its Cushing’s. To add to the mix I did have a normal MRI as well.

Dr. Kennedy started me on a 2 week midnight cortisol saliva test- Upon completion we noted levels of cortisol all over the place, some Normal, normal on high range, high, and really high. He confirmed with all the other tests this is Cushing’s. Now we are trying to figure out what is next…. and where is this damn little tumor at. he feels that it is most likely in the pituitary from my test results, but we still are not ruling out else where. He is thinking that the next step would be exploratory neurosurgery or the IPSS. I’m not sure what to think of all this, except I want to hope for the best like everyone- and just be cured!!

On a side note during all of this I also had episodes of severe pain in my chest and nausea. I went to see a GI who did an upper endo scope. They found I had eosinpphilic esophagitis. I also have never had any GI problems until now; and they came on suddenly. Im also having pain in my pancreas area- not sure if any of the two are related at all to Cushing’s. But once again I was fine until recently with all these issues at once it seems.

wish me luck on further testing, treatment, and ultimately a CURE!!

interview

Michelle was our guest in an interview on BlogTalk Radio  Wednesday, May 13, 2015

The archived interview is available now through iTunes Podcasts (Cushie Chats) or BlogTalkRadio. There are currently 83 other past interviews for your listening pleasure!

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Steve, Pituitary Bio

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golden-oldie

 

I am a 43 year old man from South Carolina who has been a “big boy” most of my adult life and have been pretty healthy until early 2003 when i started noticing marked weakness in my legs. At the time I was on a diet and thought I was just deficient in something and started trying all kinds of supplements but nothing helped. I was kinda checking my bp here and there and it was very high so I decided to go to my gp because I was due for a physical anyway. He saw me and I told him about my leg and arm muscle weakness and he started asking lots more questions about my moods, vision, looked at my stretch marks and felt my noticable hump and said that it looks like cushings but probably isn’t because it’s so rare. He sent me to an endo “just in case, to rule it out”.

I have since found out how blessed I am to have had this gp and to be referred on the 1st visit. My endo agreed and started lots of tests (I never gave so much blood or peed so much in my life!) and even though after a CT and MRI they couldn’t see any tumors, he referred me to Drs. Vance and Laws at UVA Medical Ctr. who are wonderful! After an IPSS I was diagnosed and it was caused by a tumor on the pituitary.

I had transphenoidal surgery on Feb. 7, 2004 and after no change in my cort levels in 4 days they decided to go back in and operate on the other side which resulted in complete removal of the pitiutary. I never did “crash” so they sent me home saying I definitely would in a few days. It is now March 2005 and I am still waiting to crash. I never had to take steroids due to my levels being near normal and although I am due for another check-up in a month, I feel pretty good, having gained 90% of my strength back along with most other symptoms getting better. The wierd thing is that Dr Vance thinks that I am in remission from cushings but I am a rare case (I guess that makes me rare among the rare!). One year post-op and I am only on bp meds and thyroid replacement and testosterone replacement, that’s all.

I am a lurker here and was during my darkest days and appreciate all the help this site has given.

The recurrence of this disease seems to be high, among posters here anyway, but I am optimistic that I am through with cushings for good and just have to deal with hormone replacement.

 

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Teresa G (HB), Pituitary Bio

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pituitary-location

 

I am a 47 year old woman diagnosed with Cushings Disease June 2014. I have always been one of those girls who was curvy, but was a yo-yo in the weight department.

About 1o years ago I was diagnosed with PCOS. I had extra facial hair, extra weight, irregular periods, infertility problems. Boy did I feel good about knowing what was wrong with me!

Then a couple of years after that I had a stress fracture in my right foot. I seemed to take forever to heal, but finally did. I had several uneventful years. I did have pain in my pelvic area for quite sometime before deciding something had to be done. Four years ago, after visiting my gyno, it was decided that I should have a hysterectomy due to fibroids. That is when the fun really started for me.

I really didn’t noticed, but sometime after that my skin became really oily, I had acne (for the first time in my life), and the weight had come on. My hair became quite wavy. And the stress factures started.

First my left foot, the 2nd metatarsal, then the 3rd metatarsal. All in all I have had four different instances of stress fractures in my feet, and one on my ankle. What got everyone’s attention though, was when my hip broke.

I had been seeing a chiropractor for back problems I figured were due to wearing a boot for my fractures on and off for years. My back did not seem to be getting any better. As a matter of fact my hip area seemed to hurt worse. Then, early the morning of January 8, 2014, I was trying to make my way to the bathroom, when I heard this awful noise, felt an even worse pain and down I went. Later the doctors figured I had had a stress fracture that had started to heal in the femoral neck of my hip, but broke.

All of my doctors were scratching their heads. But that was about all. My PCP ran some blood and urine tests, but really did not find anything out. I FINALLY asked every one of my doctors, since they did not know what was wrong, where did they suggest I turn. Each one said and endocrinologist. Of course my next question was “What is an endocrinologist?”.

That was in February 2014. I was referred to Dr. Ferries, one of the few endos in Wyoming. It took a while to hear from her, but when I did, I was disappointed to hear that the soonest I could get in to see her was in June.

In the meantime, I had refractured my ankle. April 1, 2014 I had the ankle repaired. April 7, 2014 I passed my first kidney stone. I let Dr. Ferris know about it. Shortly after that my appointment got moved to May.

My appointment with Dr. Ferries last about 2 hours. After asking all the questions, listening to my story and an exam, she told us she thought it may be Cushings, but needed to do several tests. She let us know that it was something that would take some time.

I did the urine tests, the blood tests, and an MRI. My cortisol levels were way out of the norm. The MRI showed a 6mm microadenoma on my pituitary. I was ecstatic! After deciding to have my little friend removed in Denver, Co, Dr. Ferries sent my referral to Dr. Lillehei at University Colorado Hospital.

I took a few days, but they called to make an appointment. July 31, 2014 was my appointment with the brain surgeon. I was so happy to be on my way to feeling better! I had to tell my story again to Dr. Lillehei, the brain surgeon. He did not see the tumor, so he wanted me to see his endocrinologist. Then I had to tell my story yet again to Dr. Wierman. She told me she was not impressed by my previous tests and MRI. She would like me to do them all again. She told us they had their protocols, and when they did not follow them, they usually got bit. I was disappointed, but understood.

Those results of those tests were inconclusive. My cortisol was not nearly as high. So the next step was IPSS. The petrosal was scheduled for August 18, 2014. The results of the that test were quite definitive. There was an ACTH secreting tumor on the right side of my pituitary. Hooray!! My surgery was scheduled for September 5, 2014.

The surgery went off without a hitch. Colin, Dr. Lillehei’s PA, then informed me that the surgery was the easiest part. He said I would pretty much feel like sh@%. He was right. I am feeling better and better. My skin is not a grease pit any more. I am loosing weight. My appetite sucks and sweets make me even more nauseated. I can manage to make it to aquacise several times a week, though. I am looking forward to the days when I have energy!

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Traci’s Daughter, Undiagnosed Bio

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My 11 year old is currently at NIH, undergoing 2 weeks of diagnostic tests.

Her main symptoms have been stunted growth and weight gain. She doesn’t have some of the other classic symptoms.

She undergoes the IPSS tomorrow, so hopefully we’ll know more then.

 

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Tina H (TinaHardenMississippi), Pituitary Bio

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Hi everyone! I’m 41 yrs old, I live in Mississippi with my hubby & our precious 14 yr old daughter.

I have suffered with so many health problems since I was around 16 yrs old.

I was just diagnosed with Cushing’s in Sept. 2013, I found out it was from a pituitary tumor in Nov. 2013. I had an IPSS in April 2014 and surgery to removed pit tumor June 13, 2014.

Contact Tina here.

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Interview May 14 with Rebecca D (Rebecca D), Pituitary Patient

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Hi Ladies and Gents, my fellow Cushies!

I am a currently mid 20s student living in Toronto, ON, CAN, with big dreams and a big heart. I have been part of this network for a while now and although I’m not always active on the site, I am always eager to spread the word, the love, the support for any of you!!! Just contact me, anytime!

As for myself, I began gaining weight and not being able to control it when I was in my late teens/early 20s.

In 2007/2008 I began trying to figure out what was going on with my current family Doctor with no success. My mother (xoxox) was the smart cookie who saw an episode of “mystery diagnosis” and said “THAT’S MY LITTLE GIRL IN A NUTSHELL!”

Ironically, my family MD at the time AND the one after that said that was a ridiculous idea and it couldn’t be that and simply DID NOT TEST ME.

Luckily, in 2009 when I moved to Toronto for my new degree, I met with a new Doctor who is an admitted “over tester”, however she did help steer me to my Endocrinologist for the diagnosis. It took nearly 2 years of testing, Dex-suppression tests, IPSS, vials of blood gone, MRI’s, CT’s, and too many jugs of 24-hour urine tests we had it narrowed to a pituitary cause but could not locate it on imagine or by approximate location (right, left, etc).

So the wait began as I was referred to my neurosurgeon and the Pituitary Clinic and their hospital until the day came and I went under!

After 6 months of excruciatingly long and painful recovery (which I know any of us who have gone, are going through, or are awaiting to go through where they mess with our signalling organs can understand) I was finally feeling back to myself, my cortisol was in its normal range after tapering off of oral hydrocortisone (oh the irony) and have been feeling pretty great since, Some weight has come off, my stripes have faded (don’t worry, if you look hard enough you can still see them) and I hope to stay on a positive road of recovery! *knock on wood*

I must say, I never expected to the one in a million… and it wasn’t the “one in a million” I expected to be…  You can’t change the past but you can make the best of your future. I’m proud to be a Cushie, I’m grateful to have you all as my “family”, and you are all “one in a million” as well 🙂

Be Proud, Be Strong, Be Fierce… but most importantly, Be Happy

Stay Beautiful xoxox

If you   have questions for our guest, the call-in number is (347) 843-4703
Archives will be available at this same link after the interview and in the Cushie Podcast at http://itunes.apple.com/podcast/cushingshelp-cushie-chats/id350591438

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