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Roseglass (Roseglass), Adrenal BIo

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I have been ill for 9 years. I was experiencing severe anxiety/depression, profuse sweating, extreme hypertension, a non-stop migraine, and living in a constant state of fight-or-flight. Seven years ago, a full body CT scan revealed a left adrenal tumour. It has taken until this past year (actually just a few months ago) to finally get a diagnosis of pheochromocytoma from the medical field (no one listens to the patient – I have been telling them about the pheo and that I have Cushings for 7 years! My cousin died from an undiagnosed pheo.) Fortunately, I have wonderful long-term family doctor and more recently a great endo who have given me alpha and beta blockers to keep the symptoms more tolerable while we waited for a confirmed diagnosis.

Besides the above symptoms from the pheo, I have all the typical Cushing’s symptoms, I have also had a stroke, at least one TIA, and a heart attack. My heart has become enlarged and I can hardly breathe. After the heart attack, my weight took a huge jump. I had already become quite large but then I gained 7″ around the middle in 4 weeks. I complained to my doctors that something was terribly wrong but they kept saying I was just eating too much (sound familiar?). I also have a variety of lesions covering a variety of organs.

Due to the diagnosis of pheochromocytoma (via a MIBG), I was sent to a surgeon. The first was an idiot (don’t stand for that – ever – there are decent people out there). Then I was allowed to choose my own team. I found a team in Toronto, at Princess Margaret Hospital, who are knowledgeable and really understand this disease. When they said I had classic Cushing’s, my eyes teared up – finally someone saw it.

I have just had my 1st consultation with them, plus more tests, and am waiting for my 2nd consultation in January when I also expect to meet with the surgeon. It is looking hopeful that I may have my life back. They believe my body will go back to normal: my heart, diabetes reversal, my hair return to normal (more on head, less on chin), pain relieved (I can hardly walk and cannot climb stairs), and other delightful changes …including a normal life span.

I am worried about small lesions developing on my pituitary and right adrenal gland but no one is really looking at those at the moment. I just got word that the left adrenal tumour doubled in size recently so getting this out is the priority. It has been such a long and frustrating process that I won’t feel truly at ease until I have an actual surgery date.

Roseglass

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Patricia, Adrenal Bio

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My adrenal incidentaloma was discovered after an abdominal CT in 2011.  My doctor told me that it was insignificant, and no follow up was needed.

Late 2012 I began having symptoms which led me to believe that something hormonal was going on.  I was having extreme anxiety, headaches, insomnia, new onset hypertension, hair loss, blurred vision, memory problems, dizziness, and extremely heavy menses.  I went to the gynecologist because I thought it might be premenopausal symptoms.  The doctor started me on birth control pills to regulate the periods, which was the only symptom that improved.

My general practitioner sent me to a cardiologist for my blood pressure which was spiking as high as 194/110.  The cardiologist immediately suspected a pheo, and referred me back to the GP with a recommendation for a referral to endocrinology.  The initial round of labs were all within normal limits with the exception of plasma cortisol due to the estrogen pills.  The endocrinologist told me to follow up in one year.

A lot of people started telling me it I was just stressed out, and depressed.  I don’t buy it for a minute.  It feels like something chemically is wrong. It’s hard to explain….I just don’t feel right.  Yes, I have stressful things going on, but not anything that should make me feel like this.  Especially when things are fine, and I am going to meet a friend for coffee why on earth would I almost freak out on the way there? I started feeling better for a couple of months, then the symptoms came back.

I have had 3 near panic attacks in the last 6 months, social withdrawal, rapid abdominal weight gain, hospitalized with 24 hours of amnesia (transient global amnesia…which left lesions on my hippocampus), headaches, hypertension, amenorrhea for 8 months, increased facial hair.

My first lab test was the high dose dexamethasone which I did not supress.  Last week I did the 24 hour urine…a whopping 3650 liters!!  I will get the results on Thursday.  My endo said he will need to do an adrenal vein sampling as part of the diagnosis.

Has anyone else had to do this?  I am in Germany, so maybe it is just different protocol here, but I really don’t want to have to do it.

Thanks for any feedback!

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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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