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Barbara S (Babs1953), Adrenal Bio

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Was finally diagnosed in Feb of this year.

Had surgery mid March to take left adrenal.

Am still on 3mg prednisone daily. Lots of joint muscle aches, headaches, hair falling out, dry skin, split nails… sleeping a bit better but tired during day,can’t walk long or stand without feeling like I’ll hit the ground any minute.

Any weight lost right after surgery is back!

 

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EvE7070, Pituitary Bio

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Hi and good evening new here So im EvE7070 and oh my were do i start.

I was finally diagnosed with Cushing‘s 2015 To wich i had no clue what it was and how horrible it would change my life.

But lets start before when it first started I was a gym rat and eat very lil and would do fasting often and one day my menstrual cycle changed and I stop getting my periods and after that I gained about 60 pounds out of nowhere and I decided to see a doctor who told me that I had a hormone deficiency and they put me on something called glucophage which instead of making me lose weight made me gain another 30 lb within the few months of taking it and nobody knew what was wrong with me or how to treat me and I was very depressed for so long because every time I would see a doctor they would say you’re obese and you need to get on a diet and I would cry and tell them I don’t eat I exercise everyday and I don’t understand what is happening to my body i all of a sudden had every disease you could think of and know doctor could tell me what was wrong

i even got a allergies to peanuts which I had never had a problem with before crazy right

So finally after so many yrs i stated getting headaches to witch they said migraines and then my eyesight started to get affected and finally they said no maybe it’s just a sinus infection to where I had to have an X-ray done of my sinuses and that’s when they saw the tumor and my pituitary gland

So had surgery 2015 was on remission until the beginning of this year I started getting headaches again and my eyesight was starting to mess up and decided to go back to the endocrinologist and now they tell me that my cushing‘s is back and I’m hoping that my MRI comes out okay and I don’t have a tumor again but I don’t know what the odds of that happening again of another tumor this is the hardest thing that I’ve had to go through and I’m having a really hard time trying to adjust again to everything that’s going on with my body they say the second time around is worse than the first time and so far it’s true emotionally my depression is at its highest

I’m having problems with coordination brain fog concentration problems forgetting what i was taking about and im really scared I won’t be able to deal with it this time It took me so long to get back to wat ever normal is and now im back here again

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Lili, Pituitary Post-Op Update

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hi there…

i had the pituitary surgery.  They said i am cured (of course it could come back) but the day after surgery my acth level was 3.7 and the next day it was 1.  They consider that a cure.

it is a very painful recovery for me and i am documenting each day.

The headaches and pressure in my head were so awful and painful but have now on day 6 subsided.  They had to cut my septum to get through and i had a bone spur too so maybe that added to it…my nose was, still is i am sure, packed and i can’t blow my nose till July 12!  The nausea was bad too.  The cortisol withdrawal hasn’t been so horrible yet.  They have me on a taper program of each week taking less.

The tumor was towards the left side and the surgeon who was Dr. Van Gompel at Mayo was aggressive in the amount of tissue he took out as he said it was soft.  He wanted a “home run”.  I asked after if he got the home run and he said yes.

The whole Mayo experience was strange.  You don’t really get to call and speak to the doctor after you see them…you get a “desk” and a message gets sent.  The endocrinologist is the only one who calls back personally but I guess that is a lot.  I would highly recommend her and don’t know all her info except her name is Dr. Irina Bancos at the Mayo clinic.  Things just fell into place there.  As you know I was only scheduled for the IPSS but when she saw how symptomatic I was and all my levels she picked up the phone on a Tuesday and had me scheduled for surgery Friday morning.  A one stop shop.  I was scared and there alone but got through it.

The next 3-12 months will be difficult.  I am currently on some pain meds and muscle relaxers but in touch with my sponsor daily and we decided I don’t have to be a martyr.  I just need to check myself and get off them as soon as I get these headaches under control.

Mary, I’d like to stay active on your site.  I’ve learned so much that helped prepare me for the doctors appointments and the procedures that I’d like to give back anything I can in the way of my experience of living with the symptoms and not knowing what was wrong with me to fighting for a diagnosis to the cure.  Please let me know the best way I can do this and you may post this if you’d like.  Maybe edit out the pain meds and sponsor part as I don’t think many would relate to that but who knows.

I just know I am grateful to you and this site.

Lili

 

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Kimberly N (Bedrock Mama), Undiagnosed Bio

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For over theee years I’ve had 10-30 anxiety type attack’s a day. I break into a sweat, turn bright red and my heart races. These attacks happen immediately after I am anxious about something so I was always skeptical when people called them hot flashes.

I have a cyst on my pineal gland.

I’ve put on 30 pounds although I eat extremely healthy with limited sugar, flour or dairy. My cholesterol is up to 245. My libido is completely dead which is not the norm at all. I have a shawl of fat on my back with a fat bump on the back of my neck. My stomach is so big I’m embarrassed to go out. My legs have started getting fat on them which never happens.

I’m hyper sensitive to smoke and chemicals and mold.  I get incapacitating headaches frequently. I take feoricet, ice and have to go to sleep. I have no desire to exercise even though I grew up playing the tennis circuit. I have huge difficulty concentrating. I cannot remember even the simplest numbers. I feel like my vision is getting worse even though I wear glasses all the time.

I’m not the happy, gregarious person I once was and I rarely go out anymore. I want my life back.

I live in N.J.  if anyone knows of a Dr who might be able to help me I would be most appreciative. I wish you all good health. ❤

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Mika, Undiagnosed Bio

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I’m 16, going on 17… and I think I’m close to being diagnosed with Cushings. Quite frankly its scaring me so I’ll just do my best to get my story out there.

I’ve always kind of been on the heavier side compared to other people my age, even when I was really little. However, my weight has shot up from 60 kg to about 110 kg in 2-4 years, and my already awful confidence is basically shattered.

When I got my growth spurt I got severe stretch marks, but I thought it was nothing, and my parents attributed it to me growing so quickly or something along those lines.

I’m in constant pain, I’ve barely been to school since September 2016. I can barely move half the time due to severe exhaustion and pain, I fear for my future.

We originally thought all the pain was from gluten intolerance, which I was diagnosed with, late 2015. We completely cut gluten out of my diet, but instead of getting better, my symptoms got worse. The exhaustion lead to a diagnosis of chronic fatigue in mid 2016.

On a whim I’m guessing, my doctor ordered tests for ACTH when he got told of my worsening symptoms. It was much higher than it should’ve been, and I got forwarded to an endocrinologist, more tests, ect… I need to go back in a few days for the results, I’m becoming more and more nervous the more I wait.

My already bad mental health has taken a hit, as well. I was never really mentally okay due to a horrible string of things happening to me in my childhood, but when this popped up my illnesses got 10x worse, to the point I’ve harmed myself and attempted suicide. Even when I feel okay enough physically, I can’t go outside without being scared something will happen to me or that everyone is judging me for how I look. I was on medication for depression, but I was able to function even less when I was on it, so I was taken off of it. I have depression, anxiety, PTSD, and other disorders which have been diagnosed and they’ve all worsened in some way.

My schooling has taken an even bigger hit, I can’t think right due to disturbed sleep, general tiredness and headaches. I used to be a fairly good student and before I left, my grades had dropped significantly, my teachers and peers were looking down on me for how far I had fallen.

I used to constantly blame myself for my weight, I’ve hated it since I was very little, so at least this gives me a small bit of relief that its not completely my fault.

I just want to get my life back, I have my whole life ahead of me, but my teenage years are basically being stolen from me like I had my childhood stolen. While everyone else my age worries about tests I worry on if I can ever move out of my house or even walk to the shops again. It feels wrong and cruel. My symptoms have suddenly gotten much worse and I’ve developed new ones, and I honestly get more scared by the day.

Everyone else’s posts give me a tiny bit of hope for the future, I just hope I can one day live like everyone else does and not be weighed down completely by illnesses. It will be a slow road, but I just hope I can get there in the end.

Thank you for reading this to the end if you have, sorry if its just a jumble of words. ^^;

 

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Ren, Undiagnosed Bio

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Hi there. 27 year old female, never had kids. It’s been an awfully long couple years and I’ve been researching and reading all you lovely people’s bios on pituitary tumours, Cushing’s disease and Acromegaly for about that long.

My symptoms onset at a time where my lifestyle was out of control. I was drinking heavily, using drugs and didn’t have a care in the world. Or so I thought. At the time of my heaviest use (cocaine) I started having strange laundry list of symptoms.

Pressure headaches
Pain in my abdomen
Acid Reflux
Excess hair growth (abdominal, face)
Purple stretch marks on my abdomen
Weight gain of approximately 30lbs in a month (distributed in only my trunk/abdomen)
Swelling of arms, face (around eyes too) sore jaw, enlarged tongue (ridges on the sides, from my teeth)
Swelling of hands, feet & legs (increased foot size from size 7 to 8)
Exhaustion
Hair loss on scalp
Itchy, sensitive skin that looks very thin (see-through almost, blue veins very prominent all over body) skin redness as well, large pores. Dull eyes.
Fatty deposit on the back of my neck
Collar bones no longer visible
Diagnosed with anxiety, bipolar disorder and ADHD
Memory loss, brain fog
Irregular menstrual cycles and increased pain
Tunnel vision at times and blurred vision. Sensitivity to sunlight.

At the time, I was so messed up my perception of reality was pretty skewed. The combination of my lifestyle and all the symptoms mentioned above motivated me to get clean (a year and a half so far woohoo!) I knew something was wrong and I needed to figure out my baseline without substance abuse to get to the bottom of it. At my lowest point I met up with my parents who I hadn’t seen in a month and they commented on how different I looked. One of my friends from narcotics anonymous hooked me up with a great physician as I didn’t have a family doctor. I was determined to get to the bottom of all this.

When meeting with my new family doctor (after getting sober) all of the focus was put onto my recovery and mental health. Seeing as she didn’t know me beforehand she didn’t know the petite, energetic person I used to be. I voiced my concern about my physical changes as well as my mental ones. I was referred to a psychologist. Diagnosed with bipolar disorder, depression and anxiety and prescribed meds for all of the above. The interesting thing is I didn’t have these problems before the physical symptoms onset. This was followed by countless ER visits for panic attacks, being dismissed countless times for strange physical symptoms that every medical professional attributed to my history of drug use and mental health. I believed them at the time. I was also diagnosed with TMJ disfunction and started seeing a chiropractor and massage therapist with no improvement.

The year that followed was the most challenging of my life. I thought I was going crazy. I tried eating an extremely healthy dairy free, wheat free, exercising constantly with no change. Seeing various doctors, explaining my symptoms only to get basic bloodwork done and sent on my way. It wasn’t until I decided to get off my psychiatric meds and focus on finding a diagnosis for my physical ailments that things started to change. I visited the ER and the doctor on call actually listened, he referred me to a rapid assessment internist. To date I have had a thyroid panel, hormone panel, all basic bloodwork, thyroid ultrasound, abdominal and pelvic ultrasound, cortisol 8am test, 24 hour urinary cortisol- all came back within normal range. I have been tested for angioedema, (neg) referred to an allergist, dermatologist and endocrinologist.

When I saw the endocrinologist he basically said “I see people with your symptoms all the time and there is never a diagnosis, so you’ll probably have to live with this” I was instantly worried and heartbroken with that response. He ordered some tests, ACTH, another 24 hour urine, T3 T4, DHEA-SO4. I’m waiting on these results now. Saw my internist again after the endocrinologist as he also ordered a prolactin and ACTH test which I hadn’t obtained the results from yet. ACTH was slightly elevated as well as prolactin. (High) not by very much. He ordered a CT scan of my head which I have to wait a month for (he said possible hyper prolactinoma of the pituitary). I’ve asked to have my growth hormone (IGF-1) levels checked, endo says “nope you don’t have Acromegaly”

I am trying to stay strong but I’m on the verge of losing home based my business as I’m a hairstylist and am starting to develop tremors in my hands, I can barely get up in the morning, I feel as though no one understands what I’m going through. I have a sense of urgency within me to find a diagnosis, my body is screaming at me that something is very wrong. My symptoms above increase in severity by the day. Have any of you diagnosed with Cushings out there experienced only slightly elevated ACTH results or prolatcin? I was also curious if anyone has an enlarged/ swollen tongue as a form an ACTH secreting tumour, I’ve tried to find information on it but only points to an acromegalic symptom. Something inside of me is telling me this is either pituitary or adrenal related. I can’t help but wonder if my drug use somehow stimulated my pituitary.

My personal life is non existent, I have isolated myself from my friends who no longer reach out or accept me (even though I have attempted to confide in them). I feel as though everyone but my family thinks I’m completely out to lunch. Just want to thank everyone on this site for sharing their stories, when I’m feeling hopeless and at a dead end, reading your bios are the only thing that is keeping me going and pushing for a diagnosis!

 

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Danielle, Undiagnosed (Cyclical Cushing’s)

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May-Aug 2013 Age 17-18

I started noticing that i was losing weight. My arms and legs looked like toothpicks and i had bruises everywhere. i was fairly active i would run and lift weights everyday minus some weekends. Till i couldnt no more. I became very very weak, i was tired and fatigued all the time no matter how much sleep i got. I would wake up 5-8 times a night to pee, i was constantly hungry. Omgsh never not hungry i could eat and eat and eat but i still wasnt big. I was “too skinny”. My hair started to fall out in clumps , i would get these attacks where i would have insane blurry vision, i would become super pale and my stomach would blow up like a balloon. i would have terrible back and stomach pains , ringing in my ears.I would started shaking,my speech would become slurred and all over the place. I would not be able to walk straight or think clearly. I was very scared and i hated everytime these would happen. They usually hit the more active i was. so if i would run or even jog/ walk for more than 15 min it would hit. i became scared of doing anything

More symptoms: Constipation
drooling
Muscles felt like they were eating them selves
terrible headaches
no period
thirsty!!!!!
Constant! urination
muscle twitches
muscle spasms and jerks
waking up every hour
terrible acid reflux! it would wake me up

SEPT 2013
weight 115-120lbs

I started working for my father at his shop in sept 2013.I did not last very long. I got to the point where i was dying. I was sick every week, my periods had stopped , i would spot every day. I couldnt think AT ALL i felt so stupid. Like i was in a haze , i started getting really bad hypoglycemea ,which made things even worse. Despite eating so much food it would not go away.
I should mention my moods, I have always been more aggressive and loud happy go getter, i noticed that i was extremely irritable.. and jumpy all the time. I would cry for no reason and my anxiety was getting worse and my anger was like never before. One day after days and days of struggling to work, i went to the grocery store with my father , and i was not able to push the shopping cart, i almost fainted and had to have him take me to the car. Mind u my whole family knows me as “the strong one” . I was benching 220 lbs at 14, now i couldnt push a shopping cart. He couldnt believe it and i stopped working a week later. I had too many things going on i knew i had to get them sorted before i could go back to work and then go to collage.

I went to the doc who sent me to an Endocrinologist. She tested me,
LOW GH
LOW FSH
LOW THYROID
HIGH URINE OUTPUT
LOW LH

At this point i just wanted to get fixed. She told me i had to gain weight in order for my sex hormones to bump up and maybe id feeel a bit better. So i docs orders and started to eat, when ever i was hungry.. which was alot.
i came back to see her a month later, and i had gained 35 lbs!My skin was not as dry, still bruising,and terrible headaches but i had way more energy. I thought i was getting better. Little did i know my tests did not show that. I had cortisol levels 7x the normal limit, my urine out put was very high. I did a 24 hour urine test an filled 3 jugs. She suggested maybe diabetes insipidus and also.. a brain tumor. I was kinda freaked when i heard the word tumor but i just wanted to feel normal . As long as i could get help i didnt care.

2014
i did another dex which came back positive for cushings, i had to do one more and my tests suddenly dropped again. After a few more dexa tests coming back neg she ended up dismissing me and told me that i do not have cushings.

Note: I Did have a neg Pituitary mri
and adrenal

I was heartbroken . i thought that this was my way out to finally feel normal or at least ok.
She sent me to another endo who refused to see me. So i started seeing a naturopath, i spent 800$ the first day of seeing her and all those natural supps, dieting recommendations she gave me did not do a thing. TMI I also went to get a colonic and colonoscopy around this time because i just could not go . And i was pooping out blood.They said everything was okay and that it may have been hemmeroids.

2015
Specialists:
ENDO
E.N.T
Nephrologist

My family doctor suggested maybe i have fibro.. then celiac.. then hashimotos.. then maybe MS? She finally sent me to ANOTHER Endo after those tests were NEG , who said he could not help me the first day of meeting him. During this time i was devloping social anxiety .It was very hard for me to talk to people which isnt like me at all. Seeing as i was a social butterfly.My face would go beat red after any little stress i had. i hated it! i had been seeing and E.N.T because i was coughing out blood. They told me i had cysts in my nasal passages and it was nothing to worry about. And that i also have damage in my esophagus due to the acid . She prescribed me Tecta.I even saw a nephrologist because i was constantly thirsty and constantly urinating. He was the worst doc i have ever seen. He told me i knew too much and i walked out because he could not help me.My energy levels were erratic. Some days i would have so much energy and clean clean clean want to run and do everythiing! , other days i would get out of bed and crash very quickly.This was becoming a burden.

2016 Aged :21
Still trying to get help
moved
weight: 165 (gained)
Specialists: Sleeping
Neuro

I became very frustrated and sad of always being let down and disapointed by all these doctors. I kind of gave up for a bit.i saw two last specialists which were sleeping specialist and a neurologist . which did nothing but prescribe me sleeping pills for my insomnia.The neuro did tell me that the symptoms i am having were not caused by cushings, so he started me on topiramate. An antiepileptic drug.

I finally contacted a pituitary specialist downtown toronto. And thank the heavens ! i got an answer! CYCLICAL cushings. He told me im 99% to have cushings i just need one more biochemical confirmation. He have me a T3 MRI of my pituitary which show an enlargment right side pituitary. “One more test and we can go in there and operate” i was ecstatic! so happy to have finally found someone who can help me.

i tested and tested but my results came back Neg, or just a little bit higher. a few months later He told me that he will keep testing me but he does not think it is cushings anymore. Another heartbreak 😦

2017
moved again
aged 21
Specialists:ENDO

I now have another dexa test and a 24 hour urine.I need this last one and they will operate . during this i am trying to move out to ANY cheap apartment because my father does not help me at all. He makes me much worse and i have no where to go other than his place. He is a big burden and does not understand what im going through at all, i have had two hospital visits this year due to overdose. This is something that i thought i would never do in my entire life, but it happened. I can not handle living like this especially when i have someone putting me down and denying my disease everyday. I am seeing a therapist now and a psychiatrist but the pills they give me do not help when i cannot live my life or work through any of my problems. I have gone to a shelter but this disease does not make it easy for me to live there.I only have my partner helping me right now . ANY donations would be greatly appreciated. !!!!!!!

this is my go fund me to help me get out of here in the mean time.
Thank you so much for reading my story and anyone,, feel free to email me or ask me questions.
i am i gona keep this updated when i go to docs or get any new info

 

Please email Danielle for the URL to her GoFundMe Page

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