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Stephanie's Story

Steph’s Story

FIRST, I apologize that this is very long. But, maybe you can help me decide if I should look into this further or maybe I am just a hypochondriac. ?? :)

I have been having symptoms of "something" since at least 1997. FYI - I am 5.4 and have always been thin. I have been diagnosed with hypothyroidism, but not hashimotos (I don't have antibodies). Before treatment, I was subclinical, with TSH at low end and T3 and T4 also at low end of range. But, I have also been thinking of Cushings, or Parathyroid disease since 2003, but no doctors will look into it.

Symptoms: Fatigue, sometimes severe, periods got lighter in 97 (FYI: they didn’t start until I was 15) until they eventually stopped completely in 2001, sudden weight gain of 15 lbs in 6 weeks, depression, moodiness/irritability (very unlike me), constipation (but had this for many years prior to this), urinary incontinence and frequent and large volume of urine, very dry skin and hair, hair loss/thinning, puffy eyes and face, extremely cold/low body temp, low libido, insomnia, poor wound healing, foggy thinking, forgetfulness, hairy upper lip and dark pigment above upper lip where a mustache would be (in fact, even if the hair wasn't there, it would still look I have a mustache because of the discoloration), acne, bone pain, significant hearing loss in left ear only (also a ringing/ocean sounds) and extreme head pressure 24/7(intracranial?), lots of energy at night..... there is more I think, but I would have to look up my notes.

I had a pituitary MRI in 2001 and the radiologist said it looked liked there was a possible microadenoma, but not really and so it was deemed inconclusive. I have shown it to other doctors and they say it is fine. I have had at least 5 more MRI's in the last few years that were all normal. I had a bone density scan in 2003 for the first time (age 28) and it showed osteopenia, which I am sure didn't just develop overnight. Unfortunately, I have no idea when my bones actually started thinning. My vitamin D was checked in 2003 as was normal.

I had a couple 24 hr UFCs in 2003 and they were high normal. (One was 103 and top of the range for that lab was 105. The other one was 89).

In 2001, I did some research and learned about thyroid problems, but doctors just told me I was depressed and getting old (and I was 26 at that time). I wouldn't accept that answer so I found a doc in NYC city 4 hours away and not covered by insurance and he tested thyroid and saliva cortisol levels. He is a homeopath type, and only believes treatment with Armour Thyroid and vitamins. IN 2001 and 2005, MY CORTISOL LEVELS WERE CHECKED AND THEY WERE ABOVE THE RANGE AT MIDNIGHT AND IN THE MORNING. He gave me phosphyladtyl serine supplement pills that did nothing. In 2002, I started Armour thyroid and gradually felt better as dose was increased. Dose seemed good at 2 grains for a year or so and most symptoms improved (acne went away, energy improved, etc.) except periods never came back, bone density got worse and still have insomnia. At this time, I was also taking large amounts of magnesium to alleviate constipation that was still there, but have never taken calcium/vitamin D for longer than a month or two (I have not been a milk drinker because I have been lactose intolerant since childhood) because it seemed to make me constipated. In 2005 I was feeling my best and I love to ride my bike and after I started feeling better with thyroid treatment I was able to ride more. So, over the years I developed the ability to ride long distances and was riding a lot that summer. I did cross country skiing in the winter. But, in 2006, I started feeling very bad, and my athletic performance has been declining since. I went camping in Western NY for 3 days and for some reason my body felt worse than ever than ever and my arms and face was very swollen during this trip. I found out that I was very allergic to pollen and dust mites (I get very bad flu and fatigue symptoms from dust mites) and I thought that must be my problem. So, I started getting allergy injections. But, the injections made me feel like I had the flu surrounding the 2-3 days after I got the injection and I was getting them 2 times a week and feeling awful. I was also taking large amounts of magnesium to alleviate constipation for a few years, but have never taken calcium (I have not been a milk drinker because I have been lactose intolerant since childhood) for very long (it makes me constipated). I was having hypotension, chest pain and nausea, and muscle weakness in 10/06 and stopped taking magnesium. These specific symptoms went away. But, I was still not feeling well. Over the next two years, I had become very thin and seemed to be losing a lot of water. I was peeing so much that I couldn't bear to flush the toilet and waste that much water and so I just it accumulate for a few hours and then would flush. My skin was very thin and my legs looked green from the veins showing through.

In March 2007, I had sinus surgery to fix a deviated septum and “resection” or shave down the bony structures in my nasal passages called “turbinates” to reduce constant bad congestion and since I was sick often. I had hoped this was the cause of my head pressure and expected that to go away. My nasal passages are clear, but still have pressure in head (not sinus passages though).

In Fall of 2007, I started getting severe fatigue and having symptoms of adrenal fatigue - but, I don't know if that is what it was. I have been taking Ambien and Unisom (sometimes together) since 2003 and in 10/07 I started taking it sublingually because I was still having lots of trouble with sleeping. It worked fast, but it seemed to be causing bad things because that is when I started getting adrenal fatigue, while at the same time I was getting large doses of allergy injections. I don't know if I was allergic to it or something, but my neck swelled and then my chest felt like it was swelling, but only on the left side. I stopped taking the ambien for a week or so, and the swelling and chest pain went down. But, I developed a sort of chronic chest pain (didn't feel like a heart things, but a burning/swelling type feeling) that eventually to spread to my stomach area. I saw my family doctor 5 times from Oct-Dec, but every time, they just said I was either fine or had costochondritis. I was now having burning pain like an ulcer that radiated to my back and my left upper abdominal area was very tender. I insisted on a test for H.pylori bacteria that causes ulcers and it came back sort of equivocal. But, they put me on acid blockers and antibiotics anyway. My pain went away during the treatment, but I had side effects from the acid blockers. Then after treatment, the pain in my stomach area came back, but chest pain was gone and only came back if I took Ambien. I then read about pancreatitis and wonder if maybe I had an acute pancreatitis attack and might now have chronic pancreatitis. People told me I looked sick. I still have the burning pain, and have had oily stools for the last few months and a high heart rate (more so at night for some reason) since last fall which I have learned are symptoms of it. I didn't have my enzymes checked while I was having the acute attack, but recently they showed normal. So, who knows.

In 11/07, I had a full blood work up done and my LH, FSH, Progesterone and Estradiol are all low to non-existent. My testosterone is normal. My vitamin D was checked was low (18). My ionized calcium was high. I had another bone scan which now showed osteoporosis (I am 33). I also did another saliva cortisol test which showed normal at midnight, but too high in morning and high normal during day with total cortisol burden that was still elevated above normal. Now I wonder if I am cyclical (if I have it all). I was wondering if I needed to look into parathyroid disease since I had a high calcium level and an inappropriately high PTH hormone level. But, my doc wanted to me to take vitamin D for my low levels and osteoporosis. She prescribed 50,000 units once per week for 8 weeks which is standard protocol. Vitamin D is supposed help your calcium levels go up. I took one pill at the end of November, and for the next 4 days experienced severe symptoms of tetany/arthritis in my right hand, extreme muscle weakness, joint pain and stiffness and cracking noises and extremely dry hair and skin - my hair looked and felt like straw. I read later that these are symptoms of low calcium. I didn't go to the doctor so, I don't know what my calcium levels were. I didn't take another pill, and the symptoms eventually went away. Also, I during this episode, my urine output dramatically decreased, was cloudy and sometimes pink.

In February of this year, I started taking vitamin D3 - 1,000 units per day (way less than what I was prescribed) to see if my reaction was just a fluke before. I had the exact same symptoms as before except not as severe. After a month, my calcium levels were checked and they were 8.8, which is the bottom of the range and way lower than they have ever been in my life. I think there is something wrong with my parathyroid. But my levels are still in range and the calcium dropping after taking vitamin D makes no sense so doctors will not even try to figure it out because they have never heard of that phenomenon.

Also, in February, I started taking prometrium and estradiol, hoping that it would start my periods and eventually help my bones. I have never felt so bad in my life. My hypothyroid symptoms intensified, I gained 5 pounds overnight, and acquired new ones, like constant choking sensation, extremely dry eyes, heart palpitations. My fatigue and symptoms were so intense that I thought whatever was happening may kill me - but slowly. I decided at this time that is could be low thyroid and my doctor in NYC agreed. I stopped taking the HRT and increased the Armour. I started feeling better.

Also, in February when I was feeling my worst, I took some licorice root to see if that would help my burning pain naturally. It has an ingredient that can increase cortisol that was supposed to be removed, but maybe it still had the ingredient, because I was not able to sleep much at all and my arms legs swelled up for days. I read that later that the licorice root can make your body hold on to cortisol and it is helpful in those who have adrenal insufficiency. Unfortunately, I had requested a 24 hr UFC at this time and was not peeing much and the result was normal. I have not been peeing nearly as much or as often since February - a good thing I guess, but a dramatic change from years of excess.

In February, I also had an EGD and the Gastro doctor found a benign polyp at the end of my esophagus. Not a problem, he said. He also found mild gastritis, but no ulcer. So, it is hard to believe that my burning pain was from an ulcer since I still have it.

In April, I had a CT scan of my abdomen and all was well except there was “stranding in the fatty tissue” in my right hip area.

In May, I moved to a dry climate (Utah) which has helped my allergies and I found a local doctor who specializes in thyroid. He increased my Armour again and added a little Synthroid. And I feel MUCH better. And, my fatigue went away, although I have it sometimes. However, I still have the hairy discolored lip, acne (which came back after taking HRT), hoarse voice, insomnia, osteoporosis (of course), hair still thinning, no libido, head pressure, hearing loss, depression/moodiness (though I think it is induced my taking lunesta sleep aids), burning pain in stomach/pancreas, no periods, energy at night etc.....

FYI: I have recently been diagnosed by a new ENT with silent acid reflux (that goes into your vocal chords).

In July, I had another 24 hr UFC and it was normal. They did two levels, and one was normal and my cortisol level with creatinine was high. My doc said that just meant that I was dehydrated. This could be true - I peed half as much as usual that day and overall, my urine volume has decreased since my problems in February and I have had symptoms of dehydration this summer (in dry Utah) since I also exercise in hot weather. Also, I was very calm and fairly sedentary that day. Two days before that, I felt like I had energy to spare and I barely slept. I wish I would have tested that day.

Question: Would my levels have shown higher if I was peeing more? I am confused about this.

I have been wondering if MEN 1 syndrome is involved since I seem to have abnormalities in the thyroid, parathyroid, cortisol, and pancreas which can be affected in this syndrome. MEN 1 runs in families, but my mom was adopted and she cannot get any medical history for her side of the family including her biological parents. My brother has similar endocrine symptoms, but has severe hypoglycemia and low growth hormone. I just read that low growth hormones shared similar symptoms to Cushing’s syndrome. My insurance won't cover the gene test, but I found a lab who can do it for $1000. I don’t know if it is a good idea to spend the money or not.

Does any of this make any sense to anyone?? I think if I pursue this, I am going to have go to a doctor like Dr. Friedman or something. I can't seem to get any doctors to do further testing since my UFC's are normal. They ignore the saliva results that I have.

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