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Kristin T, Undiagnosed Bio

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undiagnosed4

Currently undiagnosed but I am a medical professional, and not stupid.

All through my adulthood (age 21ish to now at 43) I have had the following symptoms: B12 deficiency, Vitamin D deficiency, the depression/anxiety/irritability, major loss of emotional control (I can cry at the drop of a hat, sometimes in very inappropriate situations (like at work).

I can gain weight like no tomorrow (60 pounds over about 8 months. The only way I’ve been able to lose it is either gastric bypass (which created a whole other set of issues and had to be reversed) or an entire month on IV nutrition (TPN), in short abject starvation.

I have stretch marks all over the place, a fat abdomen (in spite of a tummy tuck), fat upper arms, fat thighs, back fat (oh yes, the ubiquitous hump between my shoulders and fat pads above my clavicles). I am weak to the point that a two mile walk has me in bed for the rest of the day. Forget working out, I drop from exhaustion. my back hurts, I have horrendous posture and get muscle spasms and a backache when I try to remind myself to stand up straight. I am always thirsty, and subsequently pee nonstop, I have a seemingly insatiable appetite usually for carby type stuff (although I really try to pay attention to what I eat).

I’m a total klutz and oh yes, the crowning glory: I have hair on my inner thighs, heavy hair on my lower arms and I can win a beard growing contest with a bunch of guys, although testosterone levels have been tested and are unremarkable. I’ve got a bit of hypertension (although also a little decreased kidney function, which may explain that.) I had a total hysterectomy for the heavy bleeding and constant ovarian cysts (but not the string of pearls pattern indicative of PCOS. Libido?, yeah right. I have the sex life of a nun and am frankly not interested. This is not genetic because I am the only one in my family that is like this.

Over the years I have been diagnosed with PCOS, major depressive disorder, and more recently some kind of unspecified eating disorder (apparently just because I’m fat). I have been treated as such over the years with totally no change. Birth control pills just made me bitchy, the cocktail of antidepressants seem to help minimally (I can still cry over nothing), and this is now having a huge impact on my professional life (like nearly destroying my career).

If all this crap isn’t a good reason to at the very least, look at Cushing’s, then I don’t know what is. Incidentally I had a doctor, some 13 years ago start the workup for this (had 24 hour urine, dexamethasone suppression test and a brain MRI) but this was pre-nursing school and I did not realize the seriousness of what he was suspecting, so I never followed up.

I finally have a primary care doctor who has immediately referred my to an endocrinologist. I appointment in 2 weeks and well…to be continued….

Updated January 9, 2016

still searching for a doctor who gives a ***. I’m quite peeved. It’s been a while since I updated because, well, just busy.

I went to the appointment and the doc pretty much just blew me off. i said that in my opinion, it was worth at least running the tests. I could be wrong but please humor me and run them. Well, he sent me off to the lab and all he did was a one-time single cortisol level. It was normal. His diagnosis, “weight gain due to excess calories” and recommended a medication that costs $1200 per month and was NOT covered by my insurance!!!!! Seriously????? Jerk!! I came into some money, so I ponied up for 2 months worth of the medicine and thus far I’ve lost 12 pounds and now I am plateaued. My new insurance covers it, so i’ll keep at it, but I’m finding a new doc. How hard is it to just run the bloody tests!!!

Have to go now, it’s time to shave the hair on my chin and go to my therapy session for depression. Someday, maybe someone will believe me, hopefully before I die!!!!!

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Jason, Adrenal Bio

1 Comment

adrenal-medulla

 

Growing up, I was always quiet and withdrawn. I struggled in school with memory issues and was always embarrassed by my excessive sweating. I continued to have issues growing up and then something happened in 2001. I would have fits of rage, massive sweating, psychotic episodes, periods of major highs and periods of massive lows.

In 2003, a psychiatrist labeled me bipolar, schizoaffective, ADD, ADHD, and major drepressive. I took their cocktail of meds to only get worse. I would end up in a mental hospital (5 times).

In approx. 2005, I was done with them and I stopped everything and I just hid behind closed doors so to speak. Also in 2003, I just found records(2015) of bloodwork I had done in 2003 which showed high Hemoglobin and also high Hematocrit levels with high WBC count. Nothing was mentioned to me about this. I keep struggling to get answers.

In July of 2014, I started massive pains in my stomach with rectal bleeding and major flank pain. I went to the doctor and he ordered a CT of my abdomen. The CT showed bilateral Adrenal masses(left was 2.2cm and right was 3cm). He said these were “incidental Adenomas”. I am waiting two more weeks to have my low dose cortisol test performed. When I did the 24h urine to rule out pheochromocytoma , all was fine except plasma metanephrines which was slightly elevated and the doctor said there was a “near zero” chance of me having a Pheo.

I am still having these symptoms: weight gain (20Ibs. since 2014), “moon face starting (2015), thinning, fragile skin that bruises easily, slow healing of cuts, bites and infections, decreased libido, Fatigue, Muscle weakness, Depression, anxiety and irritability, Loss of emotional control, Cognitive difficulties and worsened high blood pressure and pulse.

I now have a new mass in my right armpit. An ultrasound was inconclusive.

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Katrina (Coloradokat), Undiagnosed Bio

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undiagnosed6

Hello,

I am not going to repeat the standard history here. I have been reading other bios and I am excited to read that so many others have the same issues I have and I am sad to note that they have received the same dismissive response from doctors (especially endocrinologists!). It really is like reading about your own life. It seems most of us have had to fight to get anyone to listen and like so many of you, I have already been through the “see a nutritionist,” routine.

Rather than repeat a story that reads just like so many others on this site, I will just share that I too have had years of trouble and recently my troubles have become exacerbated to the point that my lack of energy, weight gain, lack of focus, and cognitive issues have interfered with my ability to earn a living. As I am fighting that fight (you know, trying to get doctors to believe test results they actually took in their own facilities, or believing that you have real biological issues despite the fact that the current test shows normal results) as I fight, I am trying to find ways to address medical issues as best I can through natural means.

I have an MRI scheduled for later this month and I pray they will see something there because I am tired of fighting endocrinologists who repeatedly ignore my high cortisol test results with one excuse after another. More importantly, I have to get my health back in order to work and support my family. Right now, I have to find a way to lose some of this weight. You see, I have two jobs. One of my jobs is with US Army Reserves. I cannot stay in the army if I exceed a defined weight, and after serving two years in a war zone, I am not ready to lose my retirement benefits because I am over weight despite regular exercise and a healthy diet. I need to address many aspects of this disease, but the weight gain issue has to be resolved first.

Like so many of you, I am frustrated with the symptoms of this disease and I am angry with the endocrinology field for being so narrow minded and caring more about their reports than they care about their patients. When I am at war and the enemy does something different from their normal, reported, or expected routine, do you think I just give up? No, of course not, we have to find a way to protect ourselves, our troops, our bases, and civilians. We have to look at the situation and access it for what it is, not what it was supposed to be. Why are endocrinologists so stupid that they cannot think outside the box like that? UGH!

I guess you can tell that I am frustrated like the rest of you and I am thankful to find this site if only to know I am not alone. I wish all of you speedy diagnosis and healthy recovery. Once I achieve better health, I plan to do my part to help spread awareness. We can make changes in how patients are treated. It will not be easy and it will take more and more biographies, but I believe in the power of the people to make change. I have to believe in that. I have put my life on the line twice to defend it.

My best wishes and prayers to all.

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Kari W (karialeen), Pituitary Bio

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pituitary-gland

 

I am a 37 year old female.

I had a 6mm tumor removed from my pituitary on May, 7th that was causing me to have cushing’s disease.

I also have hypothyroidism.

I am now in recovery and I had no idea what I was in for. Some days i wish for my tumor back. 😦

 

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Melissa, Undiagnosed Bio

3 Comments

undiagnosed3

 

Im currently 24. In 2008 I was diagnosed with PCOS because of my very absent periods, an ovary full of cysts and acne. At that moment the gyno only gave me contraceptive pills.

In 2013 another gyno started giving me also metformin 2x500mg. Also because all these years my cholesterol and triglicerides were always high even though I have been vegan and vegetarian for over 7 years.

In 2010 I fractured one ankle and in 2014 I fractured the other ankle and Ive had multiple surgeries to try to fix that. Ive had continuous weight gain all these years even though I watch my diet and I exercise all the time.

I recently asked my GP to test for cortisol, also because now I’ve been almost a year without any libido. It turned out that my AM cortisol was high, and she repeated it a month later and it came out even higher. Now she referred me to an endocrinologist.

I have the appointment with the endocrinologist in three weeks. Im very nervous about this appointment, and I really just want to figure out what is wrong with my body. Wish me luck 🙂

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Rox (Rox) Undiagnosed Bio

1 Comment

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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Zoann M (Zoann), Steroid-Induced Bio

1 Comment

steroids

 

In July 2010 I was rushed to the hospital by a friend who was convinced that I was dying. Having had asthma for many years, I kept telling her I wasn’t having an asthma attack, I was just so tired I could barely hold my head up. The ER doctor was a brand new resident, she took one look at me and said “You’ve got Cushing’s.” I had no idea what she was talking about, but because I was too tired to care, I agreed to be admitted to the hospital for testing. Five days later I walked out with a confirmed diagnosis of exogenous Cushing’s Syndrome caused by massive doses of prednisone I had been taking for more than 10 years for the asthma.

Five years later I have had Adrenal Insufficiency added to the long list of conditions caused by the prednisone overdoses. I am steroid dependent now; 15 mg of prednisone daily keeps me from being admitted to the hospital for asthma attacks. Taking the drug that almost killed me in order to stay alive is one of the hardest things I have to do.

I am fortunate in that I have an excellent endocrinologist who works well with my primary care doctor to manage the multiple medications I take to cope with my various chronic conditions. Right now the thing I struggle with the most is the pain – muscle pain, feet pain, joint pain, nerve pain. Trying to find medications to deal with the pain is almost impossible; I can’t take most narcotics, even if I could find a doctor to prescribe them.

My endocrinologist told me at our last visit that there was nothing else he could do for me except monitor my condition. My primary care doctor has said the same thing. It is very discouraging to be told that there is nothing else that can be done.

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Louise (Louise), Iatrogenic Cushing’s disease Bio

4 Comments

steroids

 

I am a 52 year old wife and mom of 4 who has had strange symptoms which will be a year this coming August.

My first symptom that I noticed as something strange was brusing beneath the skin on my left arm and then noticing that the skin easily tore. My doctor ran some bloodwork but still couldn’t figure anything out.

Later my best friend researched my symptoms and suggested I ask my doctor, which I did at my next appointment. Oddly at that next appointment the nurse checked my vitals and everything seemed ok. When the doctor came in I was leaning on my husband’s arm and my systolic # was 92.

From there he referred me to an endocrinologist. We discovered, after many blood test, that my issues were caused due to ACTH issue with my adrenal glands and that was caused due to taking varying amounts (usually 9 mg) of Entocort for around 12 years.

Now that I have been researching some of the symptoms I realize I have had them for at least a year. I have weaned down to 3 mg and want to get off of the Entocort but the doctor says that I will die if I just stop the medicine. I am due to have bloodwork July 13, 2015 and meet the doctor to discuss the results on July 23, 2015.

My FEET are killing me! I have felt SO alone and I am very thankful to find this support group….now I just need to learn how to use the message boards, so please pardon me if I flub.

Any help and advice is appreciated! Can this go away? I am PRAYING that it does!

Thank you in advance! Louise

~~~

update

Updated based on Louise’s comment.

My name is Louise. I am NOT a technogical person and cant seem to figure out how to get the most out of this forum, and I KNOW it is a good one. I desperately need contact with others who understand because they are going through this. Someone please tell me how? I just need some help. My bio says that I am “undiagnosed” but that is not longer true. The end of June I was officially diagnosed with “Iatrogenic Cushing’s disease”. I felt badly for 3 days, one of which was Father’s day and I was NOT going to the ER on that day. The second day I packed up a necessary bag, but still did not go to the ER. The third day I’d had all I could take and asked my husband to take me to the hospital. My stomach and my head hurt and had been hurting. The ER doc told me that my potassium and my sodium levels had bottomed out and that it could cause neurological damage and / or seizures. Scared me. I was admitted to the hospital for 4 days.

My Cushing’s was caused by long-term use of Entocort, or budesonide. No one could make sense of my “crazy bloodwork” because my cortisone level was “non descernable”, yet how was I alive? The second visit with my endocrinologist, just as she walked out the door, it hit me and I asked her if it could be the budesonide. She immediately recognized what was causing my Cushings. No one had picked up on the medicine because it was listed under the generic name and did not have a “cort” in the word of the generic. I have weaned completely off of the Entocort and it was not easy but I was determined. I have been on a maintenance dose of Cortisol beginning at 20 mg per day and I am not down to 15 a day. I want to go to a lower dose but need surgery on my thumb and so I know I will have to go back up to 50 mg for a while as I deal with the surgery. It will be the second surgery on my thumb, a surgery to correct the first surgery. Long story on the thumb, which I will skip….however, I originally messed up by thumb because I could not sleep. I asked my dr about Ambien and he said that would be good. I wanted to be sure it would not cause crazy behavior in any way, but once I took it, within 5 minutes (because I knew after taking the medicine I had to go immediately to bed within 10 minutes. I had a HORRIBLE fall and remember none of it. Once diagnosed with Cushings I realized that not sleeping, like for a day and a half being wide awake, was a result of Cushings.

My GI dr who prescribed the Entocort was kind and professional, truly caring but he didn’t ask me about ANY side effects, saying this drug was “the best” and that it really never had any side effects. I went in with skin on my arms so thin, brusied and bleeding, but he was only interested in the GI issues, even after I TOLD him I had Cushings. I finally had to tell him flat out that the Entocort he prescribed for me beginning 09/26/07 was what CAUSED my Cushings.

I ACHE, my lower back and feet, often my hands. It is hard to feel like an attractive woman when I am shaped like an apple with a moon-shaped face, but I decided I’ll just say heck with that…..there are other worse parts I am dealing with, yet, not being vain, that still matters to me self-esteem wise.

As I weaned from the Entocort my blood pressure went crazy up and down, but mainly high, which was some to begin with. Now it drops down and I feel like a wet rag. I am sleeping a LOT and when I get up during the night or in the morning I feel like I walk like Herman Munster. It is getting to me because it is hard to do things with my kids because I don’t have the energy or the ability to do things with them (the youngest 2 are 17 and 15 and they live at home. We also have a 22 year old and an almost 20 year old who are living on their own working, or on their own in college. I miss some things because I just “fall out, or hit falldown as I call it”. Maybe someone here can understand what I mean when I say I “hit falldown”. Others don’t understand. I have not told people in my community about my condition due to a former friend who is just plain nosey and called other friends to find out why I was in the hospital. I am not ashamed of the Cushing’s, but I don’t want to be gossip fodder either.

I did break down and asked my dr for a handicapped tag so that I don’t have to walk so far. I still have swelling in my legs, but hopefully that is better, but the pain is not. My balance is off and I have to steady myself when I stand up.

My cortizol levels have gone from “non descernable” to 2.4 to 4.3, so at least I am heading in the right direction. It is baby steps but I am thankful that it is going in the right direction, however slowly.

I would appreciate anyone getting in touch with me and have checked the “notify me of new comments via email box”. It is hard because people don’t understand and those I DO tell in confidence, I have a hard time describing it.

I don’t know that I used this forum correctly, but I am trying. Does anyone else have those “fall down” got to lie down NOW, moments where you lie down for hours? Somedays I feel like I get nothing done.

Thankful to have a place to voice my feelings. God bless each one of you. Louise.

 

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Emily B-C (EmilyBC), Undiagnosed Bio

1 Comment

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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Leah C, Undiagnosed Bio

4 Comments

undiagnosed3

 

Hi there!
Basically writing my story on here just for support.

I have suffered from major depression, no periods for two years, irregular hair growth, moon face, aches and pains especially lower back and also severe acne. My face is so swollen I no longer smile. I feel like I am losing my mind.

I recently had a late-night cortisol test and it came back double what it should be. My acth is very low but my cortisol is high. I suffer from aniexty and have recently started having aniexty attacks.

I feel like the doctors could care less and actually have one laugh at me. I used to be a happy 115lb 18 year old girl and have gained 25 pounds in less than a year although I have continued eating as healthy as I can even thought I am hungry all the time but I workout daily.

Any advice would be amazing. I don’t know what else to do.

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