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Voices from the Past: Margaret S (Maggierose), Possible Adrenal Bio

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undiagnosed 5

Hi

I’m new to cushings and just looking for some insight into this disease. I’m 67 yrs and for the last 15 yrs I have not felt good and problems getting worse with no explanations in the past. After discussing problems with my Dr I was tested twice for thyroid but tests came back normal.

I do have other problems due to surgeries in the past, I have adhesions, scar tissue etc. I am now type 2 diabetic since last 5 yrs.

I was admitted to hospital because of stomach pain in July this year, I had a cat scan which showed I had tumours on my adrenal glands. The left being the largest. I am waiting to see the endo surgeon in November but have just finished some tests I’ve blood, 12 hr and 24 hr urine specimen. No results as yet.

My symptoms are as follows.

Sweating mainly evening time around 9pm

Can’t sleep until 3am, but could easily sleep on afternoon if I allowed myself.

Changes in face. When I look in mirror I often think this does not look like me.

I have put weight on but not a lot. I have been noticing a lot of facial hair on my face.

I had very, very thick hair and it’s now extremely thin. I have a type of rash on my face which has got worse over the years. It seems like my legs and arms are much thinner than they used to be but my abdomen is getting larger, mainly my upper abdomen. I don’t have any stria but have similar marks on my legs especially around my knees. My skin marks easily. I also seem to have a small buffalo hump on my back. Seem to have brain fog but usually put that down to age. Feel tired all the time.

Some things I can maybe put down to age.

I would appreciate any comments from members. I will let you know when I get results.

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Kimberly, Undiagnosed Bio

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A Golden Oldie

What can I say in this bio?

Well,  I started to get sicker and gained a lot of weight of age 7 years old. in the mean while, this concerned my parents.Another issues started to occure which happen to be I got sick one night and went to the hospital, and they dianoised me with diabetes.

From the time I was 10 years old through my teenage years. My parents tried to get me on a eating right plan, but they realized I still could not loose the weight, and I still was sick. My parents decided to dump the endro I had, and find a doctor. This doctor happen to be one of the best doctors because he told my parents she looks like she has cushings.

Well, I had to leave my doctor that I love because I turned 18. He was not a adult doctor.  My parents had to find me another, and they did. But the doctor i seen for a short period time died of a heart attack. Than we ended up with the doctor I have now, and he dianoised me with thyroide issues. He even said this is whats giving me the symptoms.

4 years have gone by and nothing has changed. I found out I was not converting to T3, and my thyroide has gotten a lot worse. My thyroide is 4 times larger and it is gaining a lot of water. My parents see I am not getting better, and my doctor is dragging his feet. We are going to see another doctor for a diffferent opinion.

My parents are thinking that I could have thyroide issue that the doctor is passing up that is causing cushings like symptoms, or this could be cushings in itself. We are still testing and fighting to get answers.

We are excited about getting a second opinion, and my PCP was delighted to give me a referral to see a doctor outside my county. Not to mention, my PCP is getting concerned.

 

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Sylvia, Undiagnosed Bio

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A Golden Oldie

Sylvia submitted two versions of her bio:

1)

Hi , my name is Sylvia. I’m a 36 years old mother of two.

I am not one to go to doctors. Usually I go about every 4 or 5 years. I last went to a doctor in 2008 and had a battery of test. To this day the only dx i got was anemia. I had lab,ct,mri,lumbar puncture, and other tests with no answers.

Recently I went to an urgent care due to feeling bad. Thought i had a kidney infection. Had trouble urinating, feet swelled up, and burning in my sides. They told me I had high blood pressure no kidney infection. Also my lab came back high whiteblood count. I’ve never had high bp but elevated white blood counts for several years. Every time I have lab its high. They had me repeat the lab 2 days later and it was higher. So then i did a 24 hr urine test and my creatine level was high.

So they sent me to a kidney specialist now he is  wanting to rule out cushings. I had never even heard of it before, I went today for a renal ultrasound and in 3 weeks i will do a 24 hr urine cortisol test. Then i will see him the next week.  so 1 month till I hear anything.

Let me just give you my history of symptoms:  elevated white blood counts when i have no cold or infection  recent high blood pressure  swelling in feet, legs, face, and hands gained 50lbs this year  have battled weight for years unable to lose more than 30lbs ever and that is with extreme diet and excerise  mood swings very irratable depressed extreme anxiety  sleep deprivation  can go for days without sleep never really noticed the hump on the back of my neck as abnormal thought i was just fat and that was part of it but reading about cushings makes me wonder if its a symptom.

I haven’t been dx with cushings yet but all signs point to it. I feel weird saying this because i don’t want this but for years i’ve not had an answer and in a weird way it would be a relief to know why i always feel bad, fatigued, no energy. I’ve always just said well its because of the weight. Obese people don’t have energy. But now It’s affecting my whole life.I can’t do things with my kids or be close with my husband who i love to peices. I just want an answer so i can be better.  sorry thisis so long but its a decade of issues and hard to get it all out .

thanks for reading my story.

~~

2)

My name is Sylvia i’m 36 married for 17 yrs with 2 great kids.

I’ve never been one to go to the doctor.I have to be about dead to go. I haven’t seen a dr. since 2008.

Last month i started having some kidney problems and decided to go to a urgent care clinic thinking it was probably a kidney infection. I had went on a trip over the labor day holiday and went about 8 hrs from where we live.

i have noticed when i ride for a long time or walk long distances my whole body would swell up. by the time we got home my feet were 3 times the size and i couldn’t pee. so the urgent care did test i didn’t have a kidney infection but my bp was high and whiteblood count high also.

i have had a high white count for years and nobody could ever figure it out other than anemia. two days later the dr called me to repeat the lab and the whitecount was even higher. i also had a 24hr urine test that came back abnormal high creatine level. so they referred me to a blood specialist and kidney dr. went to the blood dr. first which i had already seen in 2008 for the anemia, they said i was ok probably just a person who runs a high whitecount naturally. so that didn’t help me. but i did ask for them to order a mamogram and found a nodule so i go for a biopsy next week. so maybe it was a higher plan to go there. hoping for a good result.

then i went to the kidney specialist and he is the one who brought up cushings. i had never heard of it before. and at the time i was so overwhelmed that i didn’t even ask any questions went today for a renal ultrasound and in three weeks i redo the 24hr urine to check the cortisol levels. i didn’t know about cushings till i got on here.

i have just about all the symptoms. i’ve gained about 50lbs this year and have been under an extreme amount of stress. had a family tradgedy and figured all the anxiety and depression was from that but i’ve had bouts of depression in the past. i also have swelling in my hands feet legs and stomach. headaches, joint pain, recent high bp, mood swings, irriatability, no sex drive, panic attacks and severe fatigue. and i never noticed the hump on the back of my neck as abnormal till i read about it. i thought it was from the extra weight. i have gotten up to 315lbs. i can’t find clothes to fit anymore and my stomach makes me look pregnant. my self esteem is low and i’ve always been very social and now i don’t want to be around people at all.

i’m really hoping i can find out whats wrong with me. i just thought i was obese and fat people don’t have energy so they feel bad. i don’t want to have cushings but i’ve felt bad for so long it would almost be a relief to just get diagnosed so i wouldn’t feel like it’s all in my head.

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Trent, Undiagnosed Bio

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A Golden Oldie

My Comments: Onset symptoms: headaches, low back pain, diarrhea, fatigue, muscle/joint pain, memory loss, weight gain in abdomen, bloaded red face, & blurred vision.

Ongoing symptoms: right flank pain (just underneath ribs), stretch marks on stomach and back of upper arms (not purple), impotence, blurred vision, dry/itchy eyes, insomnia, fatigue, muscle joint pain, memory loss, fat around abdomen & face.

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Dalygirl, Undiagnosed Bio

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A Golden Oldie

well, hmm, after years of wondering whats wrong with me, I came across this thing called Cushings on the net, and low and behold it explains everything… now I am on the quest of getting a dx.  But my husband works for the local goverment and here they send us to a “free” dr.  I really think that this “free” dr is paid to NOT find things wrong with us….

Wish me luck, I just did my first 24 hour urine, (waiting on the results) and after I get those results based on if they find anything I will pay for a REAL dr. out of my own pocket….. HELP!!!!!!!!!!!!!!!!!!!

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Sharon, Undiagnosed Bio

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A Golden Oldie

Hello. My name is Sharon. Im 42 years old from Saskatchewan, Canada. I’ve been lurking on this site for about 3 weeks now, and finally decided to add my story. I appologize now if  I get carried away, but here goes.

As a youngster, I was always a healthy kid, seldom sick. Always active, very athletic. Sports were my life. But I did always have very heavy periods, and painful ones, right from day 1. Doctor said it was Mother Nature, and was told to live with it.

Got married, had 2 children. In between the 2, I had to have my gallbladder removed, unfortunatly it was an unsuccessful surjury. I still get attacks till this day. A hernia operation, 3 months later, a hysterectomy. (due to endemetriosis) a year later, the removal of one of my ovaries. I must admit I never felt right after the hysterectomy, but chalked it up to being in early menopause.

Then a year ago, my husband had to rush me to the ER. My heart was palpatating so fast I could feel it in my ears. A second visit to the ER for more of the same. The Doctor on that visit seemed annoyed, and said, get your thyroid checked. I thought, why not. I’d been suffering from freezing cold hands and feet anyways. Tests came back normal, and after a holter test, they told me my heart had an electrical problem. I was put on pills to regulate it.

At this time, the weight gain started to elevate. Being thin my whole life, I was startled by this. I’ve always eaten healthy. We are not an eat out type of family, I prefer to cook at home. But I decided to become more strict with what I ate. I always walked for excercise, now I added a half hour of core workouts and a half hour of abdominal workouts, 6 days a week. Plus my daughter, who was a health coach at Herbal Majic, put me on a plan.(minus the herbs, just the menu) Weight loss after 2 months was zero. She said, Mom, this plan works, why is it not working for you? Good question.

Im also into alternative methods to maintaining health as well. I purchased a chi machine and far infrared hothouse. While it has helped with my constipation issues and seems to have kept the gallbladder attacks away, it had done nothing to help aid in weight loss. (my friends and family however, have all lost weight in it)

Then more puzzling symptoms appeared. Always covered in bruises, major hair loss. Feeling very tired. And it showed in my face, because I have countless people who tell me I look tired. Yellow eyes from time to time. (could be from the gallbladder issues) This went on for a year . And in that year, I gained 25 lbs, 5 of that was literally overnight. .

Then 2 months ago, my heart medication stopped working. The palpitations are back, as well as a very low heart rate at times. And a shift from freezing cold hands and feet, to not being able to tolerate being hot. Noticed facial hair, my normally straight hair if full of waves and curls. Wake up drenched in sweat (chalked that up to menopause too) While I have maintained my weight at 142 lbs (115-120 lbs is my norm) my belly continues to grow. If it wasn’t for the hysterectomy, I’d swear I was 6 months pregnant. Then I developed a burning pain in my right shoulder. The pain is always there, makes it hard to use my arm at times. Some days its severe, at times during the day, the pain is tolerable. I thought maybe I dislocated something excercising. After a bath I decided to have a look in the mirror, and discovered a hump on my back I never knew I had. I think the hump and shoulder pain are related. I lay on a far infrared heating pad for the pain and it helps. Pain medication does nothing for it.

But not only is my belly growing larger, I noticed my face and neck growing larger as well. And my once smooth skin has turned rough, and red. Acne breakouts that leave scars and even a couple of skin tags on my face. This is all new to me. After careful examination of my neck, I realized I had a few lumps on the right side, and a fatty pad under my right collarbone. And when I press on that fatty pad, I feel the pain in my shoulder. Im exhausted most days now, from the pain, and not sleeping through the night for the past 2 months. I get up 2 to 3 times a night to pee. The other day I noticed that my pee had a really foul odor.(sorry for the TMI)  But it never burns.

Well, the final straw was a rash that appeared on my back. Even though I had a Doctors appointment in a week, I decided to go to the ER as the rash had me freaked out. I made the mistake of telling the nurse I thought I might have cushings. (had been reading the patient bios. It all seemed to add up) She smirked, and took me to another room. The Doctor came in and in a condecending tone, asked me,”what does google have to say about cushings” I should have told him that I leaned more from actual patients who had been diagnosed than I did from google. But we ran through my symptoms. He assured me he thought I didn’t have it. It was probably all menopause. He asked to see my drivers license and told me he thought I looked no different. I asked him if he could feel the lumps in my neck, he said no. (at this point I knew I was wasting my time)

He asked if I had used a heating pad, I lied and told him No.(Because he ticked me off) That may have been my saving grace. He called in another Doctor to have a look at this rash and neither one could figure it out, so he ordered alot of blood work. (odd though, i’d been using this same heating pad for years, and never developed a rash until now) They took blood sugar (a little high) urine, shoulder x ray. I was told to follow up with my Doctor. A week later my Doctor informs me that my blood sugar  in the ER that day was very high. And a large amount of sugar in my urine. He never said a word to me about my urine that day. She told me that one of the blood tests that came back showed abnormal for lupus.

Although she feels I am neither diabetic, or have lupus, it lets her know that there is something definatly not right. But the affirmation I got was from my Doctor who took one look at me and told me I did in fact look different. She could see the lumps without actually touching them. I guess Im not crazy after all.

She set me up with a specialist who told me flat out that he did not think I have cushings, because he sees the worst of the worst. I then showed him a picture of what I normally look like, and took a pause. Well, he’s looking into plenty of things, he has included cushings after all. And assured me if the tests come back normal, we will retest, and retest. Im also scheduled to have a thyoid ultasound in April. I feel like there is now hope that we might find an answer to all of this.

I went from being a shy person, to someone who is outspoken. I felt I needed to be, because I wasn’t being heard. Im angry at being dismissed over the years, and to the Doctor in the ER, i know i must have bruised his ego by telling him what I felt was wrong with me. Although I have alot of things wrong with me, there was nothing wrong with my hearing that day, when I over heard the Doctor and Nurse making fun of me.

I feel for each and everyone of you who’s stories I have read the past 3 weeks, who have had to endure way worse hardships than myself. I read how often you are mistreated by Doctors, and the horrible situations that you have gone through.

It breaks my heart. But each of those stories have given me the courage to fight for myself and for that, I can’t thank you enough, for being so open in sharing your lives with us.

God Bless You All!

Update May 18, 2012

Since my last post, there has been some developements, I’ve had a thyroid ultrasound and cat scan on my neck. They discovered 3 thyroid nodules the size of a pea. My Internist says that it does not explain my symptoms. An incidental finding was arthritis and disc degeneration in my neck. I am also newly diagnosed as active hypoglycemic.

Another 8 lb weight gain in 2 weeks. During those 2 weeks I lost my appetite and got the flu twice in 1 week. I barely ate enough to stay alive in those 2 weeks and still gained weight. My Internist told me he is at a loss. The swelling in my neck is now on my left side as well, and a chunk of thigh muscle in my left leg has all but disappeared. I ended up spending Mother’s Day in the ER. I woke up that morning with a burning pain in my chest and was so dizzy I couldn’t walk a straight line. Stayed dizzy for the next 5 hours. The heart checked out fine. The ER Doctor listened to my history and wished me luck, he had no idea either. I have had 3 Doctors tell me that if it is cushings, “do you know how hard that is to diagnose?” Meaning it’s to hard for them to figure it out, so they won’t bother. My Internist who tested me for cushings took a blood test, and told me that the 24 hour urine test, is old school. We don’t test for it that way anymore. Just a blood test. Of course mine came back normal. All my tests seem to be coming back normal, however I decided to document my findings as NO ONE believes me, except my Primary Doctor. But she knows nothing about cushings, she just sees the physical changes in me. I video taped the yellowing of my eyes, took pictures of my expanding belly, the hump on my back, the loss of muscle in my leg. And these strange muscle twitches that are happening throughout my body. The only thing my Doctor can do for me is to refer me to an Endo, which she is now doing.

My husband grows increasingly frustrated, and has told me that, you’ll be dead before they find out what’s wrong with you. I feel the same way. Knowing my Birth Mother died when she was 49 years old from a massive heart attack, but had the same physical symptoms as me, is scary. I am almost too tired to fight anymore but my Husband and kids keep me going. It’s been a battle, and I am far from winning yet. Will keep you posted.

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Sue, Undiagnosed Bio

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A Golden Oldie

Hello – My name is Sue and I’m 42 years old.  Before Friday, 10/15/10, I had never heard of Cushing’s.  I went in for a physical and had routine blood work done (fasting) and then went in the next day for a cortisol and aldosterone test.

This was a new doctor who didn’t know my history… she noticed my ::blush:: beard, red puffy face, and central obesity and then started asking me some questions.  I stll had no idea why this many questions.  She said that she wanted to get an abdominal ultrasound and wanted me to seen an endocronologist.  Ummmm…. ok… still had no clue. After my cortisol came back at 23, she called me back in and explained that she wanted to get a CAT scan of my abdomen.  I asked her what this was all about, and she said that she thinks that I have Cushing’s.

I have been on blood pressure medication since 1998, and my ‘normal’ bp is 135/90.  At my physical it was 155/100, another warning sign… she doubled my meds and had me come in the next day.  BP was better 145/90, but was still high… so she prescribed an additional medication.

I don’t want to make this too lengthy, but I have several other symptoms too…  I am currently disabled due to depression/anxiety, and I have even gone through ECT treatment twice for it.  I take meds for depression, anxiety, sleep and psychosis.  I have to take a potassium pill every morning to maintain a healthy level and some mornings I can’t even move for a while due to joint pain.  Hot flashes and night sweats are not frequent, and I thought I was going through the beginning of menopause.  At times I would have sweat dripping off of my forehead.  If someone would look at a picture of me and see if maybe I resemble a Cushie??  I am waiting for the appointments, but the more I read about it, the more it sounds like me.  Thank you.


Sue also submitted a second version of her bio:

Hi!  My name is Sue, I am 42 and I live in Central Massachusetts.  During my physical with a new doctor, my blood pressure was found to be high, even though I have been on Hypertensive meds since 1998.  She doubled my dose, and it was still high.  She then put me on an additional medication, and that took it down a little bit. She then noticed my razor stubble on my neck and chin and asked about that.  Prior blood work showed that my cardiac inflammation was 5X’s the “high” limit (2 years ago) and the doctor at the time told me to take 1 adult dose asparin a day.  I had severely low potassium and she told me to take a supplement.  I am 5’5″ and weigh 224 pounds an it’s literally ALL in my stomach and cest and back.  My face is all puffed out and red and splotchy.  I suffer from sleep apnea and I lose my breath if I lay down flat on my back.  I thought I was having hot flashes, because I have been having night sweats and during the day I sometimes get so flush and hot that the sweat literally drips onto the table.  I have rosacea and I flush easily.  I am disabled due to depression/anxiety/psychosis and I have even undergone ECT treatment for it (electroconvulsive therapy-shock treatment)

I was reading some of the bios and started to cry…  I could see me in so many of the stories and pictures.  Could it be possible that all of my issues are related to this disease that I had never even heard of before?  I do not want to be sick, but if it is Cushing’s that I have, I will have hope that I haven’t let myself go. 🙂  You all seem to be very loving and supporting.  Thank you for being here.

There are other symptoms I have, but these are the most bothersome.  My blood cortisol level came in at 22 and my aldosterone was high also.  I am waiting for an appointment for an abdominal CAT scan and a referral to an endochronologist.

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Roberta “Bert” P, Undiagnosed Bio

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Hello Everyone,

Like all of you I am in pain, gaining weight, have moon face, etc. I have had Fibromyalgia for over 4 years and am lucky to have a very good doctor for that who is a specialist in his field-Dr. Pelegrino.

However for the last year or so I have had pain that is more than the tender points and general fatigue you get from Fibro. We started giving me cortisone shots every 5 weeks or so for the “bad” areas, but the “bad” areas are worse now and have enveloped my muscles to where I don’t know what to do. My fingers are aching just typing this. Does anyone else experience this? Do you use the thing that you can talk in and it types? I have so many questions but will have to ask more later.

My main question is about this horrible tightness and pain to turn my head-is this a symptom? I have had it for more than 2 weeks it is from the base of my skull to my shoulder blades. Any suggestions to help ease this would be welcome. I take Vicodin now but it is not affecting it and can’t take steroids because I am having the test next Monday to see how high the cortisol is. I had a saliva test and it was pretty high on that so now they are trying this.

I also have elevated blood sugar, lowered thyroid, higher blood pressure and the purple stretch marks on my stomach. My face has officially become “moon” so is this pain from the “hump” forming that I have read about? See how scatterbrained I am-my memory is totally gone-if you tell me something and I have not written it down it is forgotten, which is bad especially for my job.

Thank you in advance for your support and helpful advice.

Bert

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Patricia’s Daughter, Undiagnosed Bio

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My daughter (15) since Jan 2018 all signs from cushing!!

But Doctors still not sure !!

My child , my daughter (15) has pain allover , she needs help!!

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Jennifer P’s Daughter, Undiagnosed Bio

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Mom to a beautiful 13 year old girl who has struggled with her weight for years.

After slowed growth doctor diagnosed her as growth hormone deficient and she has done injections for almost a year. She has grown some but still has truncal obesity and other symptoms that point to Cushing’s.

Her endo blows me off bc she doesn’t have the purple stretch marks but my fut tells me we are missing something.

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