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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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Necessary Silence, Undiagnosed Bio

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question

 

I was researching the term for the corner my spine makes (buffalo hump) because I was chronicling conditions for my Medical Adventures. This lead me into the tumble of discovering Cushing’s symptoms. So many issues began making sense.

Constantly flushed face, hair loss, heavy weight gain, slimmer limbs, rounded face, buffalo hump.

Fear of not being believed by Doctors (fat lady problem) lead me to buy an at-home test for cortisol levels. The result confirmed that something was going on. I took the evidence to my GP and was sent for a blood test and referred to the Endocrinology Clinic. “Oh my goodness. This is going to be so smooth.”

A month later and the Endo people still have not been in touch. Not even a letter!? I know that an appointment will take a while to come around, but I had hoped to be told kinda how long I would have to wait by now. More research in the interim has led me to a personal conclusion that a pituitary tumour (messing with various hormones) is the likely cause. “An MRI please”.

I’ll try to update you but in the meantime more details will be in my Medical Adventures series on https://www.youtube.com/playlist?list=PLD8MiGlEkjl3J718VsBZ3tw9YWfOYSGrv

I’ve read a lot of the bios on these Cushing’s sites. There are many accounts without follow-ups and I hope that those people are still fighting for recognition of what is going on.

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Lisa (Lisa), Undiagnosed Bio

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undiagnosed4

 

44 yo female
have been overweight for a while
always fatigue, muscle aches, pain/joint all I related to weight
only history is hypothyroid been on synthroid since 15ish
recently had UTI that was resistant to lots of abx then developed a bronchitis to pneumonia
then the UTI came back was on prednisone at start of pneumonia for 14 days then developed pain in left side and arm cardiac negative and high blood pressure out of blue
been worked up for carcinoid syndrome – neg
VMA and metanephrine – Neg
Lupus – neg
they have no idea why bp so high all of sudden i have palp with it
always notice muscle weakness I never have any strength
extremities tingle at times
but face has had horrible red butterfly redness dr doesn’t like
now wants me to be worked for cushing going to do 24 urine tomorrow
but i have had ct scans of abd and chest and one ct angio of chest showed a tiny tiny adenoma on left adrenal gland the radiologist said so small that they may not even comment on it
i do have the fat in neck/ shoulder/back
i just feel off not myself almost shaky inside i have no desire to do any activity although i know i need to

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Marcia (Marcia K), Undiagnosed Bio

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golden-oldie

 

Hello everyone! I have been diagnosed with PCOS for 15 years. I am 48 years old and have many of the cushing’s symptoms and have had them most of my life. I am on appropriate medicines for PCOS due to research I have done on blogs like this one.

I am here to learn more about Cushing’s as I believe I have this and my appointment with an endo is 6 weeks away and I want to go to this visit with much needed knowledge.

 

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Kali, Undiagnosed Bio

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undiagnosed3

 

Hi Everyone,

My name is Kali, I’m 20 years old and I’ve been on this journey for a year and a half now. Before this all started I was petite 5’3″ and 123lbs at my heaviest, I was incredibly active, I played multiple sports including soccer, ringette and swimming and I worked out 4-6 times a week. I stumbled across this wonderful website last night after becoming so frustrated with the way I have been treated and bounced around from doctor to doctor. Honestly reading some of your stories is like reading my own. I’m hoping someone will be able to reach out and send some advice my way.

This all started last year when I noticed all of a sudden my regular work out routine had become extremely difficult my legs fatigued quickly and my heart started racing just walking. I went to my GP who said I was having panic attacks while walking around. I of course said this wasn’t possible and left discouraged. 3 days later I ended up in the ER due to a racing heart rate at over 180bpm while lying down.

Now fast forward 6 months, 7 rounds of blood work and 5 appointments with 2 cardiologists and everything came back normal. I was fed up. I now couldn’t even walk up a set of stairs without becoming fatigued and working out was no longer in the picture at all. I even found getting out of bed in the morning difficult. The doctors all said it was in my head, it was anxiety, I needed to push through and everything would get better. Funny thing was I used exercise to deal with my anxiety for many years and I knew this wasn’t anxiety.

I honestly ended up no where and sort of gave up. Some doctors thought it was hyperthyroidism, 1 thought Wolff-Parkinsons White but everything came back normal and they all settled on a diagnoses of anxiety and I was prescribed multiple different anti-anxiety and antidepressant medications which my stubborn self refused to take. I accepted that I couldn’t work out or run or be who I used to be and I focused on school and tried yoga, light jogging and small sessions of weight lifting instead of intense gym work outs.

Now we fast forward another 2 months or so. I started craving sugary foods, I had never had a sweet tooth before I never even used to like chocolate and all of a sudden it was all I wanted. I developed a lot of back pain between my shoulder blades and I just assumed this was all because of upcoming exams, bad posture and just life. I really shouldn’t have.

4 more months go by and I went home after school finished. My mom immediately said I had gained weight. I mean I had noticed some of my clothes were tighter but I figure I just accidentally put them in the dryer. 2 weeks later. Nothing fit. I had outgrown all of my clothes in just over a month. When I stepped on the scale I thought it was broken. I had gained over 30 pounds in less than a month. 123 – 156lbs. My face was puffy and red with acne, I had a huge hump between my shoulders. My breasts doubled in size, my stomach was huge but my arms and legs were normal. I immediately went to a new doctor recommended by a friend and she agreed something wasn’t right and sent me straight out for some bloodwork. But of course…. everything came back normal. I even did a dexamethasone suppression test which too came back normal.

I have all the trademark signs of cushings syndrome. Round red face, buffalo hump, bruising easily, unexplained weight gain primarily in the face and abdomen, purple stretch marks on breasts and thighs, muscle weakness, tired all the time, heart palpitations, increased thirst and sweating. But I cannot get a positive diagnoses to save my life. I don’t know what to do. Not 1 doctor has been able to make 2 + 2 = 4 and I’m so upset. I hate looking in the mirror, I hate waking up with 0 energy and no clothes to wear everyday. I’ve seen 3 doctors, 2 cardiologists a nurse practitioner, an endocrinologist who didn’t even give me the time of day with my normal results and I’m scheduled to see an Internist in about a week. Should I just ask him to send me for an MRI? I feel like that is my only option left.

If anyone has any suggestions of what direction I should pursue that would be much appreciated. It’s hard to fight for yourself when you’re the only one on your side.

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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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Mae, Undiagnosed Bio

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golden-oldie

 

Originally posted Sunday, October 26, 2008

I am now 34 years old and have recently moved to a new state. I really don’t know when I started to show the signs. I have had migraines since I was in junior high. I used to have dark stretch marks and major mood swings in high school. My periods were so very painful and heavy I would bleed through a sanitary napkin every hour and a half. Once I graduated I went to the health department and asked to be placed on BC pills. I was eighteen, planning on having sex, and wanting to be safe about it. Within the next three months I put on about 60 pounds.

When I first moved to Virginia I was weighing about 135 pounds on a 5’6″ frame ever so happy in a size 8. By the following January I was almost 200 pounds and in a size 20. I went from wearing form fitting clothes to wearing sweat pants and t-shirts as large as I could find them. When I asked the health department about this, I was told that you have to expect to gain weight when you first start on the birth control pills. I was an active 18 year old, I didn’t over eat, and I was a personal nanny to a very active child. I took her on walks daily for at least an hour.

Things happen, as they always do. My fiance and I broke up, I moved to another part of the state, and pretty much ate only enough to make sure I was getting some nutrients into me. Depression set in, and my whole being seemed to change. I went from being an outgoing, happy center of attention to an brooding and depressed loner. I didn’t even want to be around my family (whom I lived with at the time). I went to the doctor again. I wasn’t planning on doing anything, so I stopped taking the birth control. When I asked the doctor about the weight loss, I was told it would fade within time as long as I worked at it.

Two years go by and I worked at it, and 20 pounds went on their way. The depression was starting to ease, I felt some of my old self returning. I decided to move it along and branch back out on my own again. I vowed to take back two years of my life. I was out going again, I WAS ME! I was eating healthy, only getting fast food at the most, once a week. Eating more salads than anything, and county line danceing three to four hours (non-stop) about four times a week (one day a week was for a demonstration team). I wasn’t loosing any weight. As a matter of fact, I had started to slowly gain it again. I also had my first bout with kidney stones. I met my soon to be husband almost two years to the day of vowing to get back my lost years.

Since My husband I have married (9.5 years now), my weight has been a large roller coaster ride. I have never been back down to the 180 I was when we first met. I haven’t been below 200 since then. I have maxed out at 260 so far. Each time I feel almost like my old self, I pick up the hard dieting and working out 4-5 days a week. I love weight training. Not the body building kind, but the lean muscle building kind. I will start out loosing weight and I will keep it up. I will loose about 10 pounds before the gain starts. Then I will tell myself that the gain is muscle and it is to be expected. 20 pounds later, when I am 10 pounds more than when I started, the depression starts to set in. I keep working at it with tears in my eyes and I no longer enjoy it. Finally, when the next 5 pounds hit, I just give up. All of this takes place over about a 4 month period. The only time there was a repreve was when I was pregnant with my daughter. I went back to feeling like myself again when I was pregnant. I also lost 25 pounds while I was pregnant. I was pregnant for 6 months (she was 12 weeks early due to pre-eclampsia).

Kidney stones started happening more frequently. UTI’s (which I had never had before being pregnant) started happening about every 6 months. I had been diagnosed with endometreosis, and the ovarian cycst I had been diagnosed with at 17 had come back. I was diagnosed with depression, and was always being told by the doctor that I needed to loose weight. No matter now many times I told him that I tried only to gain it, it was like he never heard me.

My break through came about a year and a half ago. I was reading one of my mother’s Reader’s Digest’s she had left at my house. I was shocked. It was almost like reading my own story. That night I hopped on line and came to this website. There was a diagram hand drawn of what a body could look like with Cushings. While I was reading the symptoms, my husband walked in. He asked when I had posed for the drawing. I broke down in tears. My wonderful husband came over and held me while I cried it out. Then listened as I explained it to him. I still didn’t have the courage to ask my doctor about it.

The following month, the recurring UTI’s started. I was getting one every two -three weeks. Then my mind started to go. Like one of the bio’s I have read here, it felt like there was an alien in my head. I could see myself acting in ways that weren’t me. I couldn’t even interact with my daughter without having flashes of anger. The depression medication pretty much stopped working, and there were times I couldn’t even stand myself. I finally found the courage.

I made an appointment to see my PCP. Since there was nothing ‘wrong’, the earliest they could see me was a month away, I agreed. I nearly called back to cancel the appointment at least three times. I kept it. He wasn’t very supportive. I was overweight and fat people like us have to find a way to loose it was pretty much what he said. But he would order and 24 hour UFC test. and we would go from there. Guess what? It was high. He refered me to an Endo. Wonderful Endo. I hated leaving him.

I went to see Dr. Barnes and he listened to me. I took pictures of me for every year since I was 18(which took a while to gather since I haven’t really had any pictures taken of me for the last 8 years). He asked me questions. He listened to me. He made me feel as if what I had to say was important and needed to be heard. Then we did the exam. He talked, measured, asked, and explained the whole time. He looked at the hair loss, the hair that was growing where it shouldn’t, even the stretch marks that have long since faded to white (but once in a while flair red). He ordered a dexa test. Then he put me on blood pressure medication (my blood pressure had been creeping up for about a year), started me on Fortamet to help ease some of the symptoms, and ordered me back in two weeks. The test came back only slightly elevated. Enough to be over the norm, but not eoungh to confirm a diagnosis. He ordered a midnight cortisol test (it was now about almost 2 months since I first saw him). The results were on the high side of normal. He wanted to keep an eye on me. He couldn’t diagnose me, but he felt that my concern was warrented. He wanted to keep on eye on me. I was to see him every three months. If my symptoms were to come back, then I was to call him immidiately.

Four months ago I had to say good-bye to Dr. Barnes. I moved with my husband when he retired from the military. I am now back to the drawing board. I have a wonderful PCP now (which I didn’t before). She listened to me and refered me to an Endo. I left the new Endo’s office very exasperated. She walked into the appointment and didn’t even shake my hand. Strike one. Next came the physical exam. She felt my thyriod, one point in her favor. That was all she checked, strike two. Then, right there told me that I was diabetic (go figure that the last blood test I got said my sugar levels were excellent) and I had PCOS. The woman had only known me for ten minutes, if that, and was diagnosing me without seeing blookwork results or anything else. Third and final strike. I am still so put off by this experience, I haven’t gotten the nerve to go back to my PCP and ask for another referal. The Endo did do a dexa test, and said that according to that test, there was no way that I could have Cushing’s and that was the end of it.

Since then, I have had my gall bladder removed after having a gall stone pains for the last 4 years that no one could find. I also have two new kidney stones. One of them about a half an inch in diameter (again). The fatigue has returned. Insomnia is hitting again. Depression is setting in. My temper is starting to flare for the slightest wrong. My concentration is failing. When I changed the chanel and found the Mystery Diagnosis on about Cushing’s, I felt that was God’s way of pushing me. So, when the week starts, I will be calling my PCP and see if there is another Endo she can refer me to. As the song goes, ‘Here I go again on my own”.

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