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Catie, Possible Steroid-Induced Bio

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A Golden Oldie

Hi.  My name is Catie.  I am 49. I am asthmatic and have COPD.  I am tired of being sick and no one listening to me and knowing that something is wrong.

I have been pretty sick since November 1999.  I am constantly on steroids of one kind or another because of my lungs being pretty bad.  I have to use steroid inhalers daily and I have an updraft machine that I use daily also.  I had a complete hysterectomy in January 2000.  The doctors all told me that was what the problem was.  I was still sick afterwards.  I started having stomach issues in 2001.  I was vomiting all the time.  My primary doctor of 23 years would not listen to me when I would tell him that something was wrong, that the pain in my stomach was horrible, that I was vomiting bile all of the time.  He told me flat out that couldn’t possibly be true because I wasn’t loosing any weight.

I had a heart attack in 2002 and while in the hospital my heart doctor ordered an endoscope done.  I was then told that I had acute gastritis and GERD along with gallstones.  My gallbladder was removed.  I was still sick most of the time and now on even more medicines to calm down the gastritis.  I was becoming so tired and so weak that my heart doctored ordered a sleep study in 2003.  I am now using a CPAP.  It has helped my sleep and the GERD, but I still felt so bad all of the time.

The weight kept piling on, mainly in my stomach, neck, face and shoulders and what is that bulging fat pad between my shoulders?  I just cry when I have to look in a mirror at myself.  I am not a vain person but I used to have such pretty eyes, now my eye lids are red all of the time.  I wear sunglasses whenever I go anywhere and I never wear any low cut blouses because my chest is red all of the time.  I was becoming so depressed about not being able to loose any weight at all no matter what I did and no one really listening to me when I would tell them that something was wrong.  Why was my face so red all of the time?  Why couldn’t I loose any weight, even a pound?  Why am I so tired and weak all of the time?  I have to have my glasses replaced every 6 months because my vision is so distorted.

One doctor gave me antidepressants that almost killed me.  I am so allergic to medicines now that if a doctor gives me a new one I am afraid to take it, especially all of the new and improved medicines.  I basically gave up on going to any doctors because no one would listen to me.  I am constantly getting pneumonia no matter how careful I am and in 2009 things became worse and I found a new doctor.  He ordered a complete blood test and told me that I was diabetic.  I was put on meds to try to control it but nothing worked.

It doesn’t matter if I eat carbs or not, my sugar is uncontrollable, so I was sent to a specialist.  On my first meeting, a month ago, he sat down with my blood test results and told me that I had abnormal liver levels and my AC1 was 14.8.  Yeah, way high, it should be below 5.  Then he said that just by looking at me he was 95% sure that I had Cushings disease and that is probably the reason for all of my sugar problems that are going on.  I was put on insulin immediately and I had to do a 24 hour UT.  I am supposed to go back this week on Thursday 10/21 for the results.

Nothing has been said about the abnormal liver levels that are pretty high, so I don’t know if or when that will be talked about.  Will the UT show what that is all about?  I had never heard of Cushings and started looking it up to see what all it entailed and I found this site.  I have been reading through the posts and it sure sounds like a lot of my complaints.  I know this sounds awful but I really feel like it would be a relief to say, “YES, this is what is wrong with me!”  Does that make sense?  I do not take hormones, there is too much cancer in my family for me to take them.

I have a horrible time with stress issues and I try to avoid any stressful situations but not knowing what is wrong with you is stressful in itself.  I do take 2 high blood pressure meds, blood thinners because I have 3 stents.  I have 2 arteries that are 50% blocked but they won’t do anything until they are 60% or you have another heart attack.  How awful is that?  I was put on a diuretic and potassium and boy they give me leg cramps that are out of this world but it has helped the pitted edema in my legs.  I take 3 stomach meds when I have flare ups but not all of the time.  I do not drink alcohol or smoke.  I can not exercise much because I just don’t have the energy or the air to do much.

I basically am stuck until someone somewhere decides to try to find out what the problem is and doesn’t just pat me on my head and tell me to not worry and here take this pill.  I am so frustrated and tired.  I have a good family support system but even they get tired of hearing that I am not doing well.  I don’t go anywhere or do anything anymore.  I used to do needlepoint, sew time period clothing for rennaissance fairs and oil paint but I can’t see well enough to do it anymore and my hands shake too bad even if I could see to do it.  Boy, talk about a pity party.  Sorry.  I collect Tonner dolls, Barbie, love to read even if I have to use a magnifier over my glasses, take animal pictures, watch movies, cook and I adore cats.

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Jeannine, Pituitary Bio

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A “Golden Oldie” from 2008.

Hi everyone. My name is Jeannine and I am an old member of this site. I haven’t been on it since 2003 because I thought my problems were over. Obviously, this is not the case.

I am a 49…soon to be 50. I’ve been married for 29 years and have two sons(26 & 20) and one daughter-in-law. After 3 long years of being told I was crazy and lazy, and searching for answers for my rapid weight gain, fatigue, and lots of other weird symptoms, an adrenal adenoma was accidentally discovered when having a CT scan before my hysterectomy.

After initial testing, I only had very mild elevations in a few tests and negative results in most others. I was told to wait and watch. As the year progressed, I became sicker and heavier. I begged, demanded and finagled tests, still only to be told I just “wasn’t sick enough.” One year and 100 lbs. later, my 24 hr. urines were finally high enough to convince the dr. to do surgery.

My test results were never very clear and I was never given a diagnosis, even after surgery. The weird part about my test results were that I tested positive for a pheochromocytoma as well as for a cortical adenoma. I had my left adrenal gland removed in April of 2003. It was not a pheo and the pathology listed “adrenal cortical adenoma”.

I never had to have any hormone replacement, and aside from not losing the weight and becoming insulin resistant, I was cured. I couldn’t lose the weight on my own, so I joined Optifast, the medical liquid diet program. Over the course of about 6 months, I lost 60 lbs.

Unfortunately, as I started to re-enter normal eating patterns, the weight began to return. There was a steady weight gain almost every week for the past 12 months. I have now gained 50 lbs back. Aside from gaining weight, A few months ago, I started to feel badly again. I immediately had my endo send me for 24 hr. urines and basic blood work, but everything was negative.

Then, a few weeks ago, I went to a new opthamologist to have my eyes examined. I mentioned to him that I sometimes got weird visual symptoms with blurry lines in my eyes. I had first noticed them a few months after my adrenal surgery four years before and they had continued to occur sporatically ever since. I had my eyes examined twice during these last 4 years and nothing was ever shown to be wrong. The new dr. suspected occular migraines, but because of my history with the adrenal tumor, he decided to do a cranial MRI. Lo and behold, I was just diagnosed with a 3-4mm pituitary tumor. So…..here I am, back on the boards looking for answers. I have an appt. in three weeks to see my endocrinologist and the testing will begin.

While I really don’t want to be here, it’s nice to be able to come “home.”

 

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Mickey D (MickeyD), Adrenal Bio

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adrenal-location

I am now 65 years old. I was first diagnosed with Cushings Syndrome in 1995 after 2 years of weekly doctor office visits stating that “my blood tests came back ok, so it must not be anything serious”.

My blood pressure shot up to stroke levels daily, my hair was falling out, I gained about 8 lbs in 6 months, had the moon face, buffalo hump, etc.,etc..

Every possible test imaginable was done to find the problem except a CT scan. The CT scan I had (after 2 years) revealed that I indeed had a tumor on my adrenal. I went to surgery and had the tumor and adrenal removed.

In fact, if I may interject, I was the “guinea pig” for the Laparoscopic Adrenalectomy performed by the doctor who invented the procedure. I was subjected to hundreds of observations while I was in the hospital for 2 days by student doctors and other Endocrinologists who wanted to see the outcome of the new procedure. Anyway, I went home after the surgery, returned to work in a week and was told I would not have to worry about ever getting this again.

I have had problems of various natures since the surgery. They have not required surgery but have been very emotionally upsetting. I can not seem to lose weight no matter what I try and I have tried it all. I did lose about 50 lbs shortly after surgery but I am still overweight and cannot seem to get it off.

I know my age isn’t helping but I am very physically active even with my age. My middle section is fatty, my breasts are enornous which is not a family trait, and I had had a total hysterectomy in 1994 at the age of 46 and I suffer daily with extreme hot flashes and mood swings.

The hot flashes are affecting my life. I am miserable. I have talked with my doctor about the weight, hot flashes, irritability but he doesn’t think it is caused by the Cushings from before. I DO!!! I have not been to an Endocrinologist since I was diagnosed back in 1995 so I have not had my levels checked. I don’t know what to do. I’m starting to think like I did back in 1995, that this is all in my head and it’s my fault that I cannot get relief for these symptoms I still have. I do not have a OB/GYN because my old one retired.

So, I am hoping that there is someone who has advice for me . I didn’t know this resource was here but I sure am  glad I found you.

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Robyn N (Robyn), Adrenal Bio

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A Golden Oldie

~~~

Hi!  My name is Robyn and I am a 48 year old wife, mother, daughter, sister, aunt, 1st grade teacher and a recovering Cushing’s patient.

My story is so very similiar to the others on this site but because they helped me so tremendously, I felt that I needed to add my own.  Until I was 40 I was extremely healthy and extremeley thin (92-100lbs. on a 5ft. frame)  My menstrual cycle had been like clockwork.  I had normal periods every 26 days.  I had had no problem getting pregnant and was the proud mother of a daughter and a son.  I had never had PMS or pain with my periods.

This all changed around 40.  My periods started becoming very irregular, I had severe cramps, crazy PMS (my husband said it was like Linda Blair with her head spinning around), and heavy bleeding.  I was diagnosed with fibroid tumors.  Dealt with that with hormones but by the time I was 45 I had Premature Ovarian Failure and the pain had become incredible and the bleeding was almost to the hemorraging point.

I had a hysterectomy in July of 2007 (I was 45).  One month later in August of 2007) I was getting out of my bathtub, slipped and fell and broke my acetabulum (hip socket).  I spent 14 weeks non-weight bearing in bed and walking to the bathroom with a walker and in horrible pain until it was decided that I would have to have a total hip replacement.  It was another 9 months before I recovered from that.  By that time my weight had steadily increased.  I thought it was due menopause that I had gone through as a result of the hysterectomy and not being able to walk much less exercise in the last year and a half.

In December of 2008 I decided to have a tummy tuck and a breast reduction because of the weight gain.  In January of 2009, when I went for my post op appointment with my plastic surgeon, I was told that breast cancer had been found in the tissue removed in the reduction.

In March of 2009, I had a mastectomy.  At that time, the plastic surgeon started my reconstruction by putting in a tissue expander.  I had poor healing and all the incisions opened so I had the expander removed.  Since then my weight has increased dramatically.  I got the moon face, the red chest and neck, the buffalo hump and stomach that looks like you are 9 months pregnant.

During this time my primary care physician just left her practice with no forwarding address.  I waited for several months to see if she would resurface in another practice and when she didn’t I had my oncologist recommend another internist.  I saw her in Feb. 2010.  She asked me what my biggest complaint would be and I told her it would be my weight gain in my stomach and how my face and neck looked.

My mother has Multinodular adrenal hyperplasia and I told my doctor that my mother thought I had Cushings.  She told me she thought my mother was right.  She did blood tests and called me to tell me that my cortisol levels were sky high and that she was referring me to an endocrinologist.  She also had me do a 24 hour urine test and a 1mg. dexamethasone suppression test.  Both were indicative of Cushings.  The first time I saw Dr. Rolbands he looked at me and said I was a classic Cushings case and sent me for a CT scan.  I had the scan and I had a tumor in my left adrenal gland.  I went swiftly down hill with symptoms.  The leg pain and fatigue became overwhelming.

By the time I had my surgery, I could hardly walk across the room and my blood pressure was 168/110 taking 2 blood pressure medications.  I had my left adrenal gland taken out on June 29th, 2010.  I am now recovering.  Dr. Rolband is very pleased with my progress in 2 weeks.  My blood pressure was 90/70 and took me off one medication.  I have lost 6.1 lbs. and the pain in my legs had gone away.  All very positive.  I started weaning from the prednisone and that has not been pleasant.  I went from 10 mg. to 7.5 yesterday and I had diarrhea, nausea, body aches and pains.  I’m better than I was before the surgery but I’m ready to feel “normal” again.

Contact Robyn

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ORKitty, Pituitary Bio

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Another Golden Oldie, this bio was originally posted 01/22/2008

Hi, I’m ORKitty. I live in Portland, OR, with my wonderful husband and kitty. I just turned 50 in 2005.

I began this journey quite possibly 17 years ago when I had some isolated panic attacks and then suddenly had panic 24 hours a day. I also kept crying and didn’t know why. I was eventually put on Xanax and then found a psychiatrist who put me on the anti-depressant imipramine and weaned me off the Xanax. It worked well for both the panic and depression for about 10 years. I gained some weight which I attributed to the anti-depressant. During this time I was still able to work and ran my own home-based business for 3 years. About seven years ago my anxiety worsened and my psychiatrist added Klonopin to deal with it. About this time I began gaining even more weight.

Due to a terrible (and terrifying) experience with a doctor, I developed a real phobia about seeing doctors. I managed to overcome this in early 2003 and have a large lump on my neck examined. An ultrasound showed normal tissue, but while I was there the doctor took my blood pressure at 160/100 and then decided to do an EKG. She found an abnormality and sent me to a cardiologist who diagnosed me with severe cardiomyopathy (next step dead). I was put on medication and had regular echocardiograms every few months and each one showed more improvement.

In fall of 2003 I was diagnosed with hypothyroidism and began taking Levoxyl, increasing by very small doses because it seemed to increase my anxiety every time I upped the dose. At the same time I was taken off the imipramine because there was some concern that it may have contributed to my heart problems. As my thyroid meds increased I began to lose weight and began having serious digestive problems including constant diarrhea. I had burning sensations in both arms, edema in both legs and my periods stopped. After some misdiagnoses and some doctor abuse I was finally found to have gallstones and had my gallbladder removed in April of 2004. I had hoped this would clear up the digestive issues, but that wasn’t the case.

After the surgery I noticed that my depression was getting much worse. By July I found that I couldn’t stand to listen to music or watch TV without getting anxious and upset. I was also feeling like I was in a fog and had racing, looping thoughts. I had trouble with reasoning and memory. My psychiatrist began prescribing a variety of medications, none of which seemed to help any of my symptoms. Things were so bad that I became suicidal for the first time in my life.

I finally persuaded my doctor to do a CAT scan to see what was wrong with my digestive system. Nothing showed up there but they found a uterine/ovarian mass and an adrenal adenoma. My doctor didn’t tell me about the adenoma until a later visit when she mentioned it in passing, saying it was nothing to worry about.

Oregon Health Sciences University.

Oregon Health Sciences University. (Photo credit: Wikipedia)

That was when I saw my first endocrinologist hoping to get help with my thyroid and an explanation of what was going on with my adrenal gland. He did a 24-hr. urine collection and my cortisol was high (200). He did an 8mg Dex test and I didn’t suppress completely so he sent me to Dr. Cook at OHSU who did a CRH/Dex test. The results were somewhat ambiguous, but he decided that the most likely source was the adrenal adenoma and recommended having the gland removed. I had that surgery in December of 2004. The day of the surgery I developed phlebitis in my right arm starting at the site of the IV. My arm became red and swollen from wrist to shoulder and all the superficial veins in that arm clotted up and disappeared. Ten months later I still can’t have blood drawn from that arm.

In the months after my surgery my heart went back to normal and my cholesterol and blood pressure improved, my periods came back and the burning sensations lessened. My legs were still swollen and suddenly became very red and hot. Doctors suggested it might be cellulitis or vasculitis. After 10 days of antibiotics the redness went away and a few months later the edema did, too. An ultrasound of my legs showed a thickened vein in my right leg that suggested there might have previously been a blood clot there. The mental fog slowly improved but I’m still not back to where I was. The anxiety and depression did not improve and have even gotten worse.

I planned to have the uterine mass removed after the adrenal surgery. This would be a total hysterectomy and my surgeon feels that my blood clotting problems need to be treated before the surgery. He is 99% certain that it is not cancerous since it hasn’t changed in over a year so I have the option of having the surgery when and if I choose. Of course there is a very slight chance that this mass could be the ACTH source.

Dr. Cook wants to do the IPSS before the MRI of my pituitary but this clotting problem needs to be dealt with before we stick 3-foot catheters in my veins. Plus I am running out of arm veins for the IVs.

Right now I’m waiting for my doctors to decide how to deal with this clotting problem before I can get the IPSS done.

I had a follow-up visit with Dr. Cook in September of 2005 and he ran all the tests again including the CRH/Dex. Since we thought the adrenalectomy had cured the problem, we were both surprised when my ACTH did not suppress. Dr. Cook wants to do an IPSS to see if the source is ectopic or pituitary. As I mentioned above, there is a slight chance that the growth on my uterus and right ovary could be the source of the ACTH. Neither my Gyn surgeon nor Dr. Cook feel that this is very likely, but it does make having the IPSS even more important than it would normally be.

Lisa (sagrae), Undiagnosed Bio

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Im a mother of 4 use to work full time till I got to sick and very tired.  Not sure what I have been to alot of drs. My tish flucuates my t4 is always in low range of normal, my cortisol tends to be very low in am and through the day. Ive done saliva test blood tests and urine tests. Im either boarderline or below and its been almost 2 years, 2 surgeries and alot of stress and financial hardship to my family. I had sleep apnea surgery first, then my ovaries removed (that proved the pcos i knew i had). Ive now been told I have reactive hypoglycemia. Been put on many different anti depressants to control my moods, since I never know from one minute to the next how I will be.

saliva test   reference range

1.6               7.0-10.0

1.9               3.0-6.0

.9                  2.0-4.0

.9                  <1.5

serum cortisol tested 1 month later

.6                 4.0-22.0

free testo

3                  2-45

 

t4 tested 1 year ago

5.0               4.7-13.3

t4 tested 2 weeks ago

1.11            0.8-1.8

tsh tested 3months ago

1.94            .40-4.50

tsh tested 1 year ago

4.14             .35-4.94

my acth test

20                6-50

lh test

58                10-54.7  keep in mind ive had a total hysterectomy 6 months ago

 

Im wondering how a dr can figure out what is wrong with me if everything flucuates all the time, and im wondering what is wrong with me? please anybody out there please shed some light on what this could be . Theres days i really feel out of my mind. Current medications started 3 months ago lithium 900 welbutrin 150 estradial 1mg provera 5mg

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