IPSS | Cushing's Bios

Voices from the Past: Rox (Rox) Undiagnosed Bio

July 20, 2025

MaryO Pituitary, Undiagnosed cortisol, Dr. Daniel Kelly, IPSS, pituitary tumor, transsphenoidal, UFC 1 Comment

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?

Archived Interview: Rebecca D (Rebecca D), Pituitary Patient

May 14, 2019

MaryO Interview, Pituitary, Pituitary Surgery, Success Stories, Treatments 24-hour urinary free cortisol, BlogTalkRadio, Blood test, CT scan, dexamethasone suppression test, endocrinologist, hydrocortisone, interview, IPSS, MRI, Mystery Diagnosis, neurosurgeon, pituitary, podcast, weight Leave a comment

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

Listen at http://www.blogtalkradio.com/cushingshelp/2014/05/14/rebecca-d-rebecca-d-pituitary-patient

Archives are available at this same link after the interview and in the Cushie Podcast at http://itunes.apple.com/podcast/cushingshelp-cushie-chats/id350591438

Margaret (Margaret), Pituitary Bio

June 25, 2017

MaryO Golden Oldies, Pituitary Blood pressure, cluster headaches, Dr. John Jane Jr., fatigue, Golden Oldie, IPSS, kidney stones, migraines, osteopenia, osteoporosis, pituitary, shingles, UVa, Weight gain Leave a comment

Originally from December 22, 2008

I have recently been diagnosised with Cushing disease.

I began having problems about 5 years ago with high blood pressure and weight gain medication brought blood pressure under control and diet pills helped me to lose a little weight.

Then just in 2008 started having stress fxs of feet for no reason bone densitiy test revealed osteopenia but with fxs osteoporsis. Blood pressure kept going higher but would not respond to more medicine. Started having kidney stones. Diagnosised with migraines/cluster headaches but mediciations not working very well, pain mainly on left side behide eye always. Had shingles. All this before I was 40. I always said “I am too young to be so old” now I know why. When blood pressure wouldn’t respond to meds I started investigating and asked PCP to do 24 free urine. I read her notes she put in there “patient thinks she has cushings” Well when first 24 free urine came back 141 range 3-50 She wouldn’t even talk to me just sent me straight to endocrinologist. He did cortisol total am (did it later than should cause of lab problem 10:30 am) it was still high 42.8 Second 24 free urine was 339 this time 1 mg dex suppression was 25.7 saliva was high too but hasn’t gotten numbers yet.

Waiting for MRI with contrast reults but 8 mg dex supp did suppress so we know it is pituitary.

It kinda has been a whirlwind cause first test was done in October 2008.

Oh did I mention the 60 lbs I put on in like 7 months!!!!!! I look 7 months pregnant!!! ANd fatigue I get sooo tired just cleaning house. I went to my GYN a few months ago and was told in a round about way that I was overweight and of course overweight people have less energy and excessive sweating. So she said eat less exercise more.

I am in touch with Dr Jane at UVA in Charlottesville VA and as soon as he reads reports, sees films etc he will schedule me for IPSS if needed and surgery.

I am scared and excited. Scared about what lies ahead the next year Excited that one day I may be “normal” again. Looking back at pictures from a few years ago makes me cry (something else I do more of lately) There are 2 different people then and now.

I am 41 years old now, married, mother to 3 girls (ages 14,9,and 8). I have a great job as a surgical tech doing just cataract surgery with 3 great doctors.

I am very scared and excited.

jackie m said…

my thoughts are with you margaret .I have had pit surgery and radiotherapy
it can be a long a drawn out process but keep positive jackie m from uk

Jennifer, Undiagnosed Bio

April 2, 2017

MaryO Golden Oldies, Undiagnosed, Update abuse, anxiety, back, Buffalo hump, cycle, depression, Dr. John Jane Jr., Dr. Taher, Dr. William H. Ludlam, Dubai, endocrinologist, Golden Oldie, hair, heart, hypothyroidism, Inferior petrosal sinus sampling, infertility, insomnia, IPSS, MRI, obesity, palpitations, pituitary, Qatari, Seattle, Sleep apnea, stomach, Toprol XL, tumors, weight 2 Comments

Hello, I am a 33 yearl old female who has been living a nightmare for the last 5 years as I have seen my total health delcine before my eyes.

I have gained massive amounts of weight with no medical reason, my monthly cycle has left me, insomnia, severe depression and anxiety for no reason, infertility, allmy obesity is in my stomach and upper back, I have developed sleep apnea from having a thick neck, I have the infamous buffalo hump, hair loss of 50% of my hair, I cannot lose weight no matter what I do, I take these weird week spells where I cannote even get out of bed, hair has literally stopped growing on my legs and other areas of my body, except on my chin and abdomen where I do not want it to grow, my face is round and red and people who see me cannot believe this transformation my body has undertaken and I then have to hear how could have let myself go? If you would just stay on a diet longer than 2 weeks? I am glad that my children are not fat? I could go on and on the emotionally abuse I have had to enudre the last 5-6 years.

I have exercised and exercised to no improvement other than I feel exhausted, I eat a very strict diet, my Mother had to move over here with us because I no longer can care for my children and need her help. I have medical bills back in the states that are like science fiction.

I finally got diagnosed with hypothyroidism and still feel horrible, I have to take Toprol XL for heart palpitations without no explanation from where they are coming from it is so much easier for some physicians to keep just giving you pills instead of trying to figure out what is the root problem.

I now live in a foreign country where it is even harder on me, but I do have an appointment after 10 months with an Endocrinologist here in Doha tomorrow and on November 9th I have an appointment to go see a Cushings Expert in the UAE in Dubai his name is Dr. Taher so I will give an update after theses two visits.

Jennifer
Doha, Qatar

Update December 30, 2007

Hello My name is Jennifer and I am a 33 year old American living in Doha, Qatar (Middle-East), I was finally sent to Dubai and seen an Endocrinologist and he did an MRI and i have two pituitary tumors and he believes that I do have Cushings so he referred me to see Dr. Bill Ludlam, MD in Seatte in January 2008 to get further testing.

I know that there were something worng with me a long time ago but I never knew it was something as stealthy as this disease possibly, I have all the classical symptoms. Also the tesing is so so expensive in the States so I am waiting for the Qatari Governments approval for my medical expenses in Seattle.

I will giva another update soon.

Update May 28, 2008

My current update. I did go see Dr. Ludlam with no avail since my insurance would not pay for him but he did state that I needed further testing so after I left Washington I went to my friends house in Alaska just to have time to think since my husband and I are seperated.

I decided to go back home to West Virginia to be with my family for support and see a Doctor there bringing all my reports and scans to him from the Dr. in the Middle-East and Dr. Ludlmas suggestions.

I seen Dr Yakub and they did tests and all of them came back positive for Cushings my urine, salivory and blood several times came back positive and high for Cushings , also my MRI in January showed that my pituitary tumors are still there.

He is a good doctor and is located in Huntington West Virginia and he not only practices Endocrinology but he is also a Professor of Endocrinology at Marshall University School of Medicine. I will keep all of you updated and thank you so much for your support through this trying time in my life and I pray that all of the Cushies on this board get diagnosed, treated and healed.

Update July 10, 2008

I have finally got my diagnosis and I am heading to the University of Virgnia in Charloettesville on July 23rd! I will update what happens from there. I would also like to say thank you to Christi who has helaped me and talked to me through this difficult time.

Update September 19, 2008

Hello Everyone I am so sorry that it has taken me son long to get back with you I had my Inferior Petrosal Sinus Sampling done this week at the University of Virginia in Charlottesville and it is confirmed I have pituitary dependent Cushings and I am scheduled for surgery the first week of October with Dr. John Jane Jr. They are great at the University of Virginia and I am so thankful for them. I am hoping that someone will take me under their wing while I am getting ready for surgery and give me some advice. I would really appreciate the help.

Michelle B (Mshelle), Cyclic Cushing’s Bio

April 24, 2015

MaryO BlogTalkRadio, Cyclic, Interview, Other Diagnosis, PCOS 24-hour urinary free cortisol, ACTH, BlogTalkRadio, Blood pressure, cardiologist, Cleveland Clinic, cortisol, CRH stimulation, Cyclic, cyclical, cyclical Cushing's, dexamethasone suppression test, endocrinologist, eosinpphilic esophagitis, guest speaker, interview, IPSS, midnight cortisol, MRI, pain, pancreas, PCOS, pituitary, podcast, Polycystic ovary syndrome, saliva, tumor, UFC 5 Comments

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!!

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!

Steve, Pituitary Bio

April 1, 2015

MaryO Golden Oldies, Male, Pituitary, Success Stories Buffalo hump, diet, Dr. Edward Laws, Dr. Vance, gamma knife, Golden Oldie, high blood pressure, IPSS, medication, moods, pituitary, Stretch marks, supplements, transsphenoidal, weakness, weight Leave a comment

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.

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

May 1, 2014

Hi Ladies and Gents, my fellow Cushies!

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

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.

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!

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

Stay Beautiful xoxox

Listen live at http://www.blogtalkradio.com/cushingshelp/2014/05/14/rebecca-d-rebecca-d-pituitary-patient

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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Cushing's Bios

Voices from the Past: Rox (Rox) Undiagnosed Bio

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Archived Interview: Rebecca D (Rebecca D), Pituitary Patient

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Margaret (Margaret), Pituitary Bio

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