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Matt, Undiagnosed Bio

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Hello, my name is Matt. I am extremely desperate for answers as I simply do not want to live anymore in this condition. I have been suffering for years with something that I strongly believe was caused by continued use of inhaled corticosteroids (Azmacort asthma inhaler, and Fluticasone nose spray). I used these inhalers for about twenty years. 2 puffs of Azmacort every morning and every night for over 20 years.

From 1996 to 2007, I began to develop several health problems. These included severe neck pain, eye twitching, tremor, heartburn, aching teeth, vertigo attacks, peeling skin from my lips and inside my cheeks, a lower eyelid “cyst” that I had removed, an episode of thrush, depression, daily headaches, insomnia, and low energy.

In 2007, I took my inhalers and threw them out. I was trying to figure out if the inhalers were contributing to my health problems. Within months of discontinuing the use of the inhalers, a few of my symptoms went away, but most of them got worse and I developed more worsening problems- brain fog, crawling skin, constant eye pressure, a feeling of sand in my eyes under my eyelids, constant crying, strange pulling feelings in my eyes, cheeks forehead and scalp, muscle atrophy in my neck, face, and shoulders, withdrawl/hangover feelings, concentration/memory problems, suicidal tendencies.

I always assumed that the problems were caused by the inhalers and figured they would subside with time, and I still think that they may. I have always been optimistic for some reason that I am getting better, but the symptoms have still not gone away. It has been ten years now since I instantly quit the corticosteroids and like I said earlier, I am getting desperate. I have talked to dozens of doctors over the past ten years, and they ALL dismiss the idea that the inhalers caused my problem.

In fact, since my symptoms are all invisible, my MRIs are unremarkable, and my blood work is always in range, most of my doctors I am pretty sure think that I am crazy. Funny thing about that is that I have no reason to make up symptoms that I am suffering with. I have already distanced myself from all of my family and friends. I do not tell any of them how much I suffer, because it is so humiliating when people say that I am depressed, or need rest, or should cut down on stress.

In other words, nobody believes that I am truly sick. I am sure that if I killed myself tomorrow because of the pain, people would say that I was a lost soul, or lonely. I have trouble being around other people because I always feel like I need to cry and decompress. I had to resign from my teaching position because of my insomnia and lack of ability to concentrate. It was the one last thing that I loved. I tried to hang on as long as I could, but I felt that the pressure to be at work and perform well daily was not benefiting my health and probably harming it.

Anyway, here is where I stand right now–


I do seen an endocronologist. I found out years ago that my cortisol levels and most other hormones other than my testosterone are normal (my testosterone level was at 100 for God knows how long). I was shocked when I found that out. I was sure that my cortisol would be through the roof, but here is the thing– I NEVER had any blood tests done while I was taking the corticosteroids. Only years after discontinuing them.

In my opinion, my cortisol levels were elevated (or depressed) while I was on the steroids. I believe that the inhalers poisoned my body. 99% of my symptoms are in and around my mouth, neck, throat, head and eyes (right where the spray was going). I believe that my cortisol levels are normal now because I am no longer taking the inhalers and my body is making the correct amount. What happens, however, to all of the cortisol that was building up in my body if this was indeed happening?

I believe that my symptoms post-inhaler are due to my body trying to get back to normal. But ten years is a long time. I was sure that I would be better by now but I really dont know how long it takes to recover from what I did to my body with those corticosteroids. After all, I used Azmacort shortly after its inception and beyond the time that it was discontinued in the US, when I was ordering it online from the UK. There probably are not many if any people that used that inhaler as diligently and for as long as I did. I have always been thin my whole life, so I cannot say that I ever had a ton of fat on my body that would indicate Cushing’s.

In the past several years though, I have noticed that I am losing mass in my neck, face, and shoulders. My face is becoming more angular. The spot between my shoulders where a camels hump would be is becoming more and more concave. It seems like this is kind of the opposite or reverse of Cushing’s. Could this be because my body is trying to recover and slowly melting away the fat deposits on my face and neck?

Again, I am extremely desperate for answers and help. I look forward to being a part of this forum and eager to find out if anybody else out there has had a similar experience to what I have been going through. I have researched Cushing’s and other diseases for years. One thing I have never been able to find online is how long does it take to recover from Cushing’s. If I did, indeed, have Cushing’s, it would have been building up for nearly 20 years. What kind of recovery would be involved with unknowingly having Cushing’s for that long? I really need to find out if it is possible that I could still be recovering after 10 years off of the corticosteroids. I still have some faith, but that faith is definitely waning.

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Elizabeth, Pituitary/Adrenal Bio

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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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Wanda G, Undiagnosed Bio

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undiagnosed2

 

I’m 44 years old and I have always been around 130 pounds but now weigh 283.

When I was around 25 I started having joint pain and started gaining weight and that is when I first started noticing my small buffalo hump. As the years went on it started gaining more weight, irritability, couldn’t fall asleep til 3am and very tired and week all the time and doctors couldn’t find anything wrong.

After my last baby I started having chronic hives, headaches every day, body aches, muscle tightness, numbness and tingling in my left foot, hand and upper lip. Most of that finally passed or slowed down. I could keep going but but fast forward a bit.

My buffalo hump is pretty large now, all my weight is in my middle and my arms and legs are thin. With my weight as high as it is you would think they would be heavy. My face is round and solid red, few red stretch marks on my stomach, telangiectas, memory loss, concentration problems, headaches.

Three years ago for almost a year I had severe weakness in legs and arms, trouble breathing and swallowing. I was diagnosed with lupus 5 years ago and polymyositis(all of my lab has come back normal & emg on my muscles that there is no damage so I doubt this dx)

Now I don’t stay up til 3 but my usual bedtime is midnight. Sorry for rambling but there are so many things that go on with my body it’s hard to get it all out.

I would like to know if anyone in Oklahoma City area know of a endocrinologist that knows a lot about Cushings because if I have it I think I’m cyclical.

 

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Susanna N (Susanna Nolt), Pituitary Bio

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pituitary-gland

 

Hello! I am a 30 year old single lady diagnosed with Cushing’s in summer of 2015.
I am a Natural Health Consultant and through the grace of God and lots of research, I basically diagnosed myself. My primary care was familiar with Cushing’s and when she saw all the Labs I had ordered on myself, she sent me for an MRI which showed a 6mm pituitary tumor.

I was so excited that at last a REASON for all my symptoms was found! But I had no idea at that point how long and hard the journey would be.

My Cushing’s was fast progressing and I gained 1 lb a week for the last 12 weeks prior to surgery. Plus, I had gained 20 lbs prior to that over the last 2-3 years. Not too mention all the other symptoms of Cushing’s: depression, PCOS, fatigue, weak muscles, thinning skin, hair loss, mental confusion, headaches, etc.

I was referred to Johns Hopkins Hospital in Baltimore MD and I met one of the best pituitary surgeons in the nation, namely, Dr. Gallia. He has a 90% success rate for Cushing’s to date.

After the surgery on Nov 13, 2015, I went thru all the normal cortisol withdrawal symptoms….shaking and twitching, incredible pain and weakness everywhere, headaches, depression and irritability, etc I spent 6 weeks at my parents home after the week I spent in the hospital for recovery from the acute phase.

After moving back to my house, I went back to work part-time the first week in January 2016. Now this May 2016 will be the 6 month mark, and I am discouraged at how bad I still feel most of the time….easily stressed and depressed, pain everywhere (esp spine, shoulders, and neck), forgetfulness, and lots of headaches.

I am still on 7.5-10mg of Prednisone every morning. I was on 15mg when I left the hospital, but every time I lower it, I have another crash. I tried the Hydrocortisone, but that wasn’t strong enough for me. My Dr said that my cortisol levels were unusually high prior to surgery, so my recovery may be longer than average til my adrenals start producing cortisol.

So I’m trying to be patient…The good news is that I’ve lost 13 lbs and 4″ around the waist, so I need to be grateful for that when I feel depressed. I am anxious to hear from others who are on the “Cushing’s Journey”. It seems that in some ways I am worse now than I was a few months ago. I have days when I just feel like crying and the pain is intense!

Do others have migraine headaches several times a week? Are your menstrual cycles crazy and debilitating? Hopefully we can learn from and encourage each other!!

God bless each of you!

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Kate N (Kate NC), Steroid Induced Cushing’s

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steroids

 

Hi everyone! My name is Kate and I am 32 yrs old.

I’ve had back pain since I was 14, and 6 years ago I went through a series of steroid injections to try to relieve the pain. I ended up with steroid induced Cushing’s Syndrome.

I gained 80 pounds in under 8 weeks, grew a huge buffalo hump, lost more than half of my hair, had a horrendous headache that hospitalized me, gained the deep stretchmarks, grew facial hair etc etc etc. You name it, I had it. All in a matter of 8 weeks after my final steroid injection.

Fast forward to today and I still have all of the weight, my hair didn’t grow back, I still have SEVERE facial flushing every single day (the flushing alone is ruining my life) and I have yet to find a good, knowledgeable Endocrinologist who can help me. I did have a plastic surgeon remove the buffalo hump so I feel much better about that. We have only caught my cortisol level high 1 time. I’m not on any meds for the Cushing’s and I’m miserable.

Just hoping to get to know some other people battling this awful disease with me. Thanks for having me.

 

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Elaine, Pituitary Bio (Golden Oldie)

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golden-oldie

 

I am 51. I was diagnosed hypothroid 25 years ago.

I was diagnosed with empty sella this year – by a neurologist analyzing my migraine headaches. He has ordered a prolactin test which I will have done when I see an endocrinologist in a about a month.

My weight had been pretty stable for years, now I seem to be gaining steadily and my breast are getting huge … I know … but it’s not funny to me because I can’t wear most of my clothes any more.

Also I am having anxiety attacks, my speech and vocabulary seem to be affected, my ankles are swollen. My internist has been attentive to my concerns and has been providing referrals to specialists. I feel as though I am losing my mind, my thinking is not sharp and I feel like crying all the time.

What happened, where is the real me? … and is this Cushing’s or something else?

 

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AllisonChained (AllisonChained), Undiagnosed Bio

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undiagnosed2

I’m becoming increasingly concerned I may have Cushings and I dont know where to start.

In 2006 my health suddenly took a dive. It started with my mental health. I had severe anxiety and depression and panic symptoms. I am currently disabled due to agoraphobia. My fight or flight response was on a hair trigger. My brain would give me sudden urgent DO THIS RIGHT NOW MESSAGES, as though if I didn’t I would be in danger. But the things it was telling me to do was things like jump out of the moving car, put my hand on the stove. I was hospitalized eight times in impatient mental health. I feel like I’m on high alert all the time.

In 2007 I developed insomnia and it’s been very severe ever since. I sleep on average three to five hours a night no more than five nights a week. This past October I didn’t sleep for 9 straight days aside from two one hour naps. I have circadian rhythm disorder and when I do sleep, it’s usually between 8-11am. I also have diagnosed sleep apnea. I take Trazodone, it doesn’t help enough.

I’ve been being treated for the past four years for Fibromyalgia. I was seeing a PT for massage therapy twice a week for two years because I am in serious pain all the time. Every day I have sinus headaches and headaches behind my eyes. I have pain in my lower back/hip/IT band and then in my neck, shoulders and arms. My shoulder joints are so painful I wake up with my arms dead more often than not and I just feel incredibly weak during the day. I take 2700 mg of Gabapentin/day. I am 60.5 inches in height and weigh 297lbs but I have never had high blood pressure. I have a pendulous abdomen and keep getting yeast infections under it. I have tons of stretch marks, adult onset acne cysts/boils and mosquito bites that just wont go away. In the past year I’ve been losing my hair by the handful.

For a while I thought I might have a sex addiction because my hormones were just out of control but then my sex drive abruptly disappeared. My menstrual cycles disappeared as well. I’ve had three in the past five years. And I don’t know if it’s sleep deprivation or what but my vision has gotten so bad lately. I had mild double vision so they put prisms or something in my glasses to raise the vision in one eye slightly and lower it in the other. I used to be able to get by without them but now I feel like I cant see hardly at all without my glasses and I have trouble tolerating light.

I have an appointment with my primary on Tuesday but I frankly do not trust him and I dont know how to bring this up and request to be screened.

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