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JoAnn (Flojo3), Adrenal Bio

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After reading this website for awhile, with much interested and appreciation, I thought I should post my introduction even though I don’t have a confirmed diagnosis yet.

I am a 63 year old Canadian widow who recently retired – partly because I was finding work difficult, i.e. not as sharp mentally, fatigued, less motivated, sleepy in the afternoon, digestive problems and some days just not feeling well.

My symptoms started about 11 years ago. Acne/boils started developing on my face and I also noticed, after growing my hair longer, that it became curly after being straight all my life. About this time I also gained about 35 lbs. quickly. As I wanted to quit smoking I went on the Atkins Diet and walked at least an hour about 6 days a week. I did lose the 35 pounds in 5 months. However, when I did quit smoking some months later I gained 65 pounds in 6 months – more than I thought I deserved to gain (I am 5′ 2″). At first my doctor was not concerned as he said I had not ever been heavy and would start losing this weight. However, after three years or so he began to strongly encourage me to do so especially once I developed very high blood pressure and cholesterol. I was trying but with no success.

In addition, some of the symptoms I have been experiencing, some off and on, are: dry skin, skin tags, thinning hair on the top of my head, e, aches and pains (including repetitive strain injury), fatigue and anxious feelings. Last summer, for a short period of time, I had very dark pigmentation under my arms, under my breasts and on my forehead. I am on medication for high blood pressure, high cholesterol, thyroid and hiatus hernia.

Over the years I did mention some of these symptoms to my doctor and he said it was probably because of my overweight. I have been doing research on the computer for years and several years ago he readily agreed to send me for testing for PCOS although he didn’t feel that is what I had because I have 3 children.

Last year I had, I believe, two bladder infections and this year when I went for my annual check up on November 29th he found I had one again. (This is embarrassing!) I had no symptoms/pain though – maybe just frequent urination especially at night. As a result and because my mother had kidney cancer, he decided to send me for an ultra sound on my kidneys. My followup appointment was on December 22nd. He said my kidneys looked fine, however, there was an abnormality in my adrenal glands. I think he said they were swollen. He said they are not suspecting cancer and that is probably why I couldn’t lose weight, had high blood pressure, etc. He seemed pleased that finally there may be an explanation for my various symptoms. I must admit I did not tell him everything as I did not want to seem like a hypochondriac. My doctor ordered a CT Scan (appointment originally April 11th) and referred me to Urologist.

I had my appointment with him on January 14th and he rescheduled my CT Scan for January 28th. I recently completed lab work, i.e. 24-hour urine test, glucose, creatintine, uric acid, sodium, potassium, chloride, CBC (Hematology), urine test, serum Cortisol 8 a.m. test and a urine R4M (can’t read that writing too well). On February 15th I have a follow-up appointment with the Urologist. I have mixed feelings. In one way I am very happy at last that I am not “crazy” and something is wrong, however, I am frightened at what is ahead. Also, part of me wants to know everything and part of me wants to let things unfold a bit at a time. For the most part I do feel positive and feel that if it was cancer I would not have been having symptoms for at least 11 years. So I continue to read/research every night and have learned a lot from this board (have started to keep a journal) and am enjoying the humour as well. Sorry this is so long but it has been many years of various symptoms and frustrations. Thanks for reading my introduction and for sharing your knowledge and experiences.

JoAnn

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MizBellaTru, Undiagnosed bio

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golden-oldie

A Golden Oldie from August 12, 2007

I’m a 48-year old female who has had an awful lot of illness over the past 12 years and starting to wonder if there could be some connection to all of it even though my doctors don’t think there is. They just think I’m one of those unlucky souls who just is sick alot and doesn’t have very good genes.

Here’s what I can tell you about me health-wise:

In 96 I had to have my colon removed due to Ulcerative Colitis. This resulted in 3 surgeries.

In 97 I developed Iritis (inflammation of the eye) and one of the docs said that because I no longer have a colon and have an auto-immune disorder that now my whacked out immune systems has started attacking my eyes. I’m in remission currently but this will be something I’ll have to deal with for the rest of my life.

Things were fairly quiet for a few years with the exception of having Iritis flare-ups and don’t remember anything else going on until 2000 when I broke my left ankle (badly) and now have a steel plate with 11 bolts holding my ankle together. (This happened in 2000 and I still have problems with that ankle).

In 2001 I was diagnosed with Diabetes. This had run in my family (my great-grandmother had been diabetic and I had been borderline diabetic as a child). I started out taking oral medications but after a couple of years this wasn’t enough and it resulted in me being on insulin now for the past 3 years. (Sugars still aren’t under control).

Also in 2001 I had some kind of seizure. Was taken to the hospital and after a lot of blood tests they thought it might be due to a calcium deficiency and recommended I go see an Endo. However, when I wen to see an endo he didn’t think my calcium was deficient enough to cause what had happened and recommended I go see a neurologist. The neurologist thought it was some kind of seizure too and ran some preliminary tests on me but he wouldn’t return any calls for me to find out what other tests should be run. I gave up on him and still never had an answer about what had caused this very weird episode. (What had happened was that I had been at work and all of a sudden my jaw started to tighten up and my head cocked to the side and I started making all these weird grimaces. My mouth became locked up so could barely get any words out. I couldn’t turn my head – it was as if it was locked in place. This is what led the ER (after running blood tests) to determine that they thought my reaction was due to low calcium. To get my rigidity to loosen up, they gave me several shots (can’t remember now what it was) but it finally had allowed my body to loosen up enough that I could finally leave the hospital. This event lasted several hours and moved in to my arms where they became so rigid that it felt like someone was turning my arms inside out. I was completely exhausted after that had happened.

As time went on I would have periodic episodes of what was thought to be a seizure and I just started to learn to live with it. Sometimes only my face was affected and sometimes my whole body would become very rigid and after several hours these episodes would pass but I was always left feeling completely worn out.

Throughout all this time my Diabetes has been almost impossible to get it under control. My insulin doses would be increased but I never could get my sugars to stabilize.

In the spring of 2006 I developed some type of wound on the top of my left foot. It spread and ulcerated and I went to several types of doctors and a couple of them thought it might have been a spider bite of some kind and due to the diabetes it wasn’t healing. I was put on various types of strong antibiotics but nothing was helping. I finally was referred to an infectious disease expert and he said I had some type of serious strain of staph infection and he finally was able to get me on an antibiotic that started to help me heal. I’m now left with some horrible scarring on my left foot but at least I didn’t lose my foot which is what I thought might happen.

In August of 2006 I developed Bells Palsey on the left side of my face. I went to a neurologist (different one from the one I had gone to for my “seizure”). He was the one who diagnosed me with Bells. In the process of seeing him I had one of those episodes in his office and he watched me very closely as it evolved and told me that he thought I had a form of “Dystonia” which is a movement disorder. After a couple of months my Bells resolved although I do have some permanent nerve damage in my face which affects how I smile but it seems to only be really noticeable to me.

In late fall of 2006 I noticed my right ear was hurting quite a bit and was draining. I went to this ear doc and she determined I had a ruptured eardrum with a huge hole that might require surgery. She also determined (after some tests) that I had an infection in the mastoid and said it was imperative that I not let any water get in my ear so that the ear could dry out enough and the infection to clear up before I have surgery. She said it could take a couple months before my ear might be dry enough and told me to come back in a couple of months. During that first visit she also did a hearing test on both ears to establish a baseline. I came back to see her in Jan 2007. When she looked at my ear she said it looked like the eardrum was starting to show some signs it was trying to heal itself (because originally she thought the hole was too big for it to ever heal on its own). She told me to give it some more time and come back again in a couple of months. I came back to see her in April 2007 and the hole was still showing some progress in trying to repair itself so she said she didn’t want to operate if my body could heal the hole. In June of 2007 my left ear started producing a very high pitched ringing sound. I’m not talking a little ringing sound but a sound loud enough it kept me up at night. I had noticed my hearing had diminshed quite a bit in that left ear. I then developed some dizziness and a sense of fullness in my left ear and noticed that when the barometric pressure changed my head felt like it was going to explode. When I went back again to the ear doc she surmised that she thought I now had developed Menieres. She put me on a diuretic and a steroid as this is supposed to help with Menieres but it didn’t seem to do a thing for me. The ear doc ran another hearing test and found that my hearing in my left ear had diminished since it was first baselined last December.

So, a little over a week ago my right ear (the one with the perforated eardrum) started hurting quite a bit and the ear started draining. Again I went back to the ear doc and she determined I had a sinus infection and an ear infection so she put me on an oral antibiotic and antibiotic ear-drops. It’s been a full 7 or 8 days on this antibiotic treatment and my hearing in my right ear has diminshed considerably to where I can hardly hear a persons’ voice on the phone. I’m to stay on this present course of antibiotics for another week. In the past I’ve always responded to antibiotics but it doesn’t seem to be helping this time. My right ear has been draining for a whole week and it’s never done that before.

Also I want to point out that I gained a lot of weight over the last 15 years and I’m now about 120 lbs overweight. I gained 12 of those pounds in just less than 2 weeks recently and my eating hasn’t changed. This is what made me start looking on the internet about rapid weight gain when I came across Cushings and started wondering if I could have this.

At this time I’m waiting on some results from a urine test to see if I’m starting to have a problem with my kidneys because I’m dealing with a lot of edema lately. I don’t know if all the problems I’m having such as the poor wound healing, edema, diabetes, developing high blood pressure are all separate things or more related to my Diabetes.

So at this time I can’t claim that I’m a “cushie” because that’s not been identified yet but I’m thinking that I should get tested for it.

Anyway, that’s what’s going on with me right now.

Thank you for reading this very long bio.

MizBellaTru

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Joanne (Mojo1973), Steroid Induced Bio

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steroids

 

Hello Everyone,

I will try to keep my introduction short. I am a 43 year old wife, mother, and certified freak of nature. I was diagnosed with steroid induced Chushings in October of 2015.

Since I was a child I have had random medical issues but over the Over the last 20 years I have become a connoisseur of the medical arts. Funny because the I worked in the medical field for 15 out of the 20 years. I seem to collect diagnoses like a girl scout collects badges.

At 17 years old I collected my first big badge after months of being sick, Chronic EBV. In my 20’s I received the badges for Hashimoto’s Thyroidism, Fibromyalgia, and Adenomyosis.

As I moved into my thirty’s my badges were getting bigger and better; they included Sjogren’s syndrome, Raynaud phenomenon, Hemiplegic migraine, Meniere’s disease. It seemed every time I needed to go to the doctors they wanted to test me for something new. All I wanted was relief because my symptoms were getting more aggressive. They have caused me to several surgeries’ not limited to Hysterectomy (by 28years old), Splenectomy, Smart plugs in my lower eye lids, EGD’s and Colonoscopies.

My hemiplegic migraines have caused multiple visits to the ER and the hospital’s Neuro floor. With these Migraines I have TIA’s so I have trouble walking or talking for days after. As the years have gone by my illness has gotten worse and it all came to a head in June 11th 2015.

I felt awful and I had for several months. My new doctor was very confused because my blood work kept coming back normal for the most part, but I kept having random fevers (up to 105 degrees Fahrenheit) joint swelling and body aches/pains.

On June 11th my family couldn’t take it, they had watched me be in pain for too long, so they took me to the doctor in the morning. When the doctor saw my whole family there at my appointment in tears, he decided to do more blood work. After the appointment he sent me home and said I should hear from him in the next few days with the results. So, we left feeling defeated and like their would never be any help. About two hours after I got home the doctor called and said to get to the hospital that something was wrong but he was unsure what it was. My blood work showed my inflammation markers at 174 and my WBC 28,000. In addition to that my kidneys and liver were fighting to staying the game. This was the start of the current medication roller-coaster, and prednisone was the main med in this cart I’m riding in.

It took three months to get the inflammation and WBC down but I took 1 month at 80mg then 3 months of 60mg of steroids. My taper is going very slow and painful. I’m currently down to 4mg and it will take till October to ween all the way off. But because of the steroids I gained 70lbs in four months. This brought my 5 foot frame to 211lbs. I have all the best signs of Cushings and for the most part I’m dealing ok. Until I can’t bend over to put on my shoes or I have to use my vpap machine to breath at night.

I guess I should tell you what my current badges are narrowed down to. I have a rare auto immune auto inflammatory disease called Hypergammaglobulinemia with Familial Mediterranean fever. To have have name gives me a direction. I would rather I do this then one of my children. I just want the information for my family so they can have early diagnoses and live a long life without pain.

 

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Tiffiny D (Tiffiny 3), Pituitary Bio

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Hi! My name is Tiffiny.  I am 34 years old. I was diagnosed with anxiety and depression back in May because of weird pains in my back and on the right front of my stomach. I thought something was wrong with my kidneys and sciatic nerve. I kept getting weird tingling in my legs and face. I was told it sounded like anxiety attacks, which I am sure they were. I am stressed all the time and I don’t know why. I am also very short tempered. I was prescribed meds but I didn’t think I was depressed or have anxiety, so I didn’t take them.

About a year ago I started having weird things going on with my tongue.  Every time I would eat anything my tongue would burn and wouldn’t quit bothering me.  I noticed that I had white, longer looking taste buds too. I thought it was something I was eating so I kept cutting out foods. Nothing was helping, is it anxiety, is it my imagination, what is wrong with me? I googled burning tongue and lots of things came up, geographic tongue, burning mouth syndrome, and thrush. I decided on August 17, 2014, to go have a doctor take a look at it. He diagnosed me with thrush. I was treated for two weeks. The meds seemed to help but the burning was still there.  A month later, one of my kids had a doctor’s appointment. At that appointment, I asked the doctor then if he thought the thrush went away. He said “no it looks like you still had it.”  I mentioned to him that I also have major peach fuzz on my face, lots of darker hair on my belly, and darker pigmented spots on my face. I thought I had too much testosterone. He thought my body was for sure out of whack because of the thrush and ordered a bunch of hormone tests. I came in the next day and had my labs done. This is when I found out I had high cortisol!! My results were 28.5 should be between (6.2-19.4). Okay, what the heck is cortisol?? He referred me to an endocrinologist to have it checked out.

The endocrinology appointment was scheduled for November 3, 2014, three months later, really! I put myself on the cancelation list and got in rather quickly, September 30. Thank goodness because I am a severe stress case! At the endocrinologist visit, the doctor walked in and said “wow, you are not what I was expecting.”  He started talking about the symptoms of Cushing’s syndrome.  I am 5’3, 110 pounds, an avid runner and I eat pretty well. I do have very thin arms with bulkier muscles.  My veins do poke out on my lower arms and are very visible, very dry hands and red fingers. The red hands/fingers started about two or three years ago which I was told it was Reynold’s disease or some skin condition. The red hands bother me very much, they look very old for my age and it is embarrassing.  The doctor then ordered me an ACTH test and two 24 hour urine tests because my blood cortisol results were very concerning to him. Both tests have confirmed Cushing’s.  My ACTH levels indicated that it most likely is a pituitary tumor. I was ordered to have an MRI a week later and they found a 6.5mm to 7mm. tumor in my pituitary gland. At this point I was referred to a neurosurgeon.

I met with the neurosurgeon a week later. Their pituitary clinic happened to be the following Friday and they only do it once a month, which happened to be on Halloween.  He ordered two more night time saliva tests, a week a part, and the results where two and three times past the limit. I am now scheduled for surgery on Dec. 9th and I am totally freaking out. I do notice weakness in my muscles and have an achy body sometimes. My hair on my head has been falling out a ton for many months. I thought it was from nursing and a bad hair coloring! I keep finding more symptoms I really didn’t notice. Face is getting rounder on one side, I am shaky, cold all the time and believe I am losing feeling in my fingers. It is very hard to distinguish between hot and cold, I have to use my arm. My memory is horrible! I do get acne under my chin and on the sides of my jaw. I get obsessive about everything! I am very antisocial, think everyone is judging me or looking at my face hair, hands, etc. I feel so bad for my girls and husband! My obsession with my tongue and peach fuzz has hopefully saved my life! Trying to be POSITIVE for the steps forward!!

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Lajla, Adrenal Bio

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Hi!

My name is Lajla, born 1967, in Umeå, Sweden. In August 2012 I was diagnosed with Cushings Syndrome (adrenal). My health status by this time was terrible, with almost every part of My body affected – i.e. Heart, lungs, kidneys, brain, skelet, muscles, skin and a heavy weight. The very first time, I believe, I had symptoms fr.o.m. Cushings were in 2004, with adrenal pain and kidneys that reacted in a strange way. Tests results gave no clue. After that I’ve seen a doctor for several times, with new symptoms every time. The doctor didn’t believe me.

Summer 2012 I was in a very bad shape, with anxiety, fractures, insufficiens in both lungs and circulatory. I went to see another doctor, and that saved My life! In september 2012 My left adrenal gland (and the adenoma) was taken away. The result is called “very successfull”. Many of My problems are gone (or at least nearly). The weight is now normal, after the loss of about 92 lb. I still suffer from pain due to the many previus fractures and from the atrofia of the muscles. I also have adrenal insufficiens and fatigue. I can now do some easier work (that not needs muscles). For the first time since the ectomia I’ll have a real vacation! In about a week I’ll visit New York, something that I never thought would be possible!

Feel free to correct My english!

This site is the best for me to get information about Cushings. In Sweden there is none!

Thank you! 🙂

Lajla L

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