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Gina, Pituitary Bio

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The pituitary gland

 

 

PCOS and I have a 2mm pituitary microadenoma

Some salivas high most are normal. I went to Dr. Findling and he was beyond rude and a waste of time.

I need a doctor close to Illinois.

 

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Amanda, Undiagnosed Bio

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golden-oldie

 

I have been battling sickness for about a year and half now. It started with my gaining weight pretty rapidly (about 20 lbs. in a month-month and a half). I’ve never been super strict about my eating or exercising but I don’t eat a lot of junk food – don’t buy any chips, soda, cookies, etc.) I also do remain pretty active in the work that I do as an elementary teacher. I’ve never had a problem with my weight before and this particular summer I was teaching 3 sections of dance so I was getting plenty of exercise.  I told my family practioner about the weight gain and he told me that metabolism slows down as you age. Ok. I was 26 when he said this and my metabolism must have went down to 0 for me to gaine so fast! I decided to just be more concious of what I ate and did.

As the months went by, I went on a business trip to Boston. During this trip I was inrcedibly fatigued and felt awful. I thought perhaps I was coming down with something and was put on antibiotics that did nothing to help. In August of 2010 I began to have debilitating headaches. I could not get the headache to go away with any over the counter pain reliever and ended up going to a doctor who diagnosed me with migraines. I tried a few migraine medicines with no luck and had a CT scan that showed nothing abnormal. I was then referred to a neurologist.

I mentioned the weight gain to the neuroogist who thought it was odd that I would gain weight so rapidly, but he pretty much dismissed it as a symptom and said I was getting headaches from overuse of medication. I knew that could not be right, but thought I’d try just taking nothing for a while to see if it helped. It did not. The same neurologist then recommended physical therapy, which helped ease the pain but did not take away the headaches. His final thought was that I was depressed and put me on depression medication.

During this time I was working as a teacher and missing work quite often. I felt awful every day. I continued to gain weight, feel fatigued and weak, have mood swings and began developing stretch marks and acne. I always had wonderful skin and it seemed no matter what cleanser I used, I couldn’t control the breakouts.

I saw another neurologist that was recommended by a parent at my school. She scheduled me for an MRI and a lumbar puncture. My pressure came back a little high during the lumbar puncture and the MRI was fine so she diagnosed me with Pseudo Tumer Cerebri. I took medication for this condition, but ended up with no relief.

I ended up spending a week in the hospital because I couldn’t stand the pain in my head and I was so emotional over the whole experience of not having any answers. They pumped me full of pain medication and migraine drugs. At the end of the week when I still had no answers, I ended up going to see a neurologist that was a headache specialist.

The headache specialist diagnosed me with meningitis. No tests but I got a diagnosis based on my story. She put me on steriods. I began to feel better for a few days. I returned to work and thought I had finally found my answer. Then everything came to a screeching halt and I began to feel awful again. The headache specialist was still convinced it was meningitis and said I was just more susceptible to migraines from the meningitis. I again went through a whole gamot of migraine medications to no avail.

I ended up leaving my job and moving close to my family so I could have support and people to help care for me. I returned to my family doctor who decided to do some blood tests. After running the blood tests, my doctor said that my cortisol level was high and I might have cushings which would explain all my symptoms. I had never heard of Cushings so I began researching it. Once I read the symptoms and others’ stories of how they felt and what they went through I was so sure that here FINALLY was my answer. The doctor did a low dose dexamethasone test which came back with normal levels and it was decided I did not have Cushings.

I was devestated. Not that I wanted to have this illness, I just wanted an answer and thought for sure this was it! I even asked my doctor to retest me which she would not do.

I went to see another doctor. I began going through migraine medications again, acupunture, chiropractor, etc. to find some relief. I finally brought the idea of Cushings to this doctor. She ran some blood tests again. Everything came back with normal levels except my potassium was low. Even though my blood didn’t show it, I’m still convinced I have Cushings and my doctor agreed to send me to an endocrinologist.

I have an appointment on Monday with Dr. Findling in Menomenee Falls. I found him on this site as one of the ‘helpful doctors’. I’m hoping that he can finally diagnose me and I can get on the road to recovery.

I miss my life. I’ve lost friends due to this illness. My marriage is suffering. I cannot work. I basically have no life at all because I rarely feel well enough to do anything and no one understands. Not to mention the psychological toll being sick with no answers has on a person as well as watching my body change so much and not being able to do anything to control it! I want an answer and I want to finally know what I can do to help myself get better.

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Susan W, Pituitary Bio

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A Golden Oldie

After 2.5 yrs of testing, I was diagnosed with Cushing’s (which was un-diagnosed for over 20 yrs).  My Pituitary Tumor was removed on 10/20/11.

My surgeon has recommended Radiation/Gamma Knife treatment which will be discussed at my post srgery checkup 1/10/12.  I also have noduals on both my adrenals.

Other symptoms:  obesity, diabetes, high blood pressure, high cholesterol, muscle weakness, sleep apnea, fatigue and depression.


Susan submitted a second version of her bio.

My testing -> diagnosis -> surgery journey took 2.5 years.  I have always had a weight problem.  All my Doctors ever asked if I was interested in a liquid diet, liposuction, gastro bypass or go to Weight Watchers, and eat less.  But when I reached 375 lbs I knew something had to be done.  Things were way out of control.  I could no longer handle this by myself, I needed HELP.

I had seen comercials on TV which talked about excess Cortisol leading to excess belly fat .   So, I asked my Primary Care Doctor if she could test my Cortisol level.  She just laughed and said I would have to go to an Endocrinologist (Endo).  She did not even provide a referral.  Through my insurance company I found an Endo.  On 7/3/09,  my first appointment with the Endo, she agreed to test me but felt I just had a fatty liver.

When the test results came back, they showing excess Cortisol.  This started a series of saliva, blood test, 24 hr urine, MRI, and CAT Scan tests.  Then I was referred to another Endo Dr Findling in WI (I live in IL) for another opinion and the IPSS test..  (Dr Findling said I looked like I had Cushings for over 10 yrs.)  This was followed by Ostrascam and PET Scan.  Armed with the diagnosis of Cushing’s Disease we were off to get a surgeon.  The first doctor I seen in IL was a bust.  Then I was referred to Dr Oldfield in VA, who performed my surgery on 10/20/11.

Now in recovery, I still get weak, tired and sleep a lot.  I have been using a walker and cane to get around.  Interesting to see that other Cushings also have problems with mobility, aches and pains.  I hope this gets better.  I have follow-up appointment 12/21/11 and 1/11/12 with the Endo and surgeon.  I am off my High Blood Pressure and 2 of the 3 Diabetes meds.  I have lost 30 lbs in the 7 wks since surgery.   I can;t wait, 1 more wk before I can start swimming again.

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Laura (Loves2Cruise), Adrenal Bio

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The adrenal glands sit atop the kidneys.

The adrenal glands sit atop the kidneys. (Photo credit: Wikipedia)

I was diagnosed with Cushings over 14 years ago and really thought it was over and done with. After seeing several doctors while starting in high school and into college, primarily to explain why my cycle had completely stopped, I was given various responses from the typical, “oh, it’s probably just stress” to “let’s just put her on birth control and it will start right back up.” And while the latter may have been true, it certainly didn’t explain the weight gain round my midsection, especially when I was eating so little while in college because I just couldn’t figure out why my pants wouldn’t fit anymore. It also didn’t explain the “buffalo hump” at the base of my neck, or why my hair seemed to be falling out. Or why my blood pressure was high all the time. Or why I had constant headaches. So only after my mom refused to accept “stress” as an answer, she turned to Dr. Google, and started looking up my symptoms. She finally convinced a doctor to test my cortisol levels, which were off the charts.

Luckily, I went to college in Milwaukee, and saw Dr. Findling who immediately diagnosed me with Cushings. After dealing with this for several years, Dr. Findiling diagnosed the disease, located the tumor (left adrenal gland), had it removed, and was on my way to recovery in a matter of a few months. By the time I returned to college in the fall, after having the turmor removed over spring break, people did not even recognize me, my appearance had changed so drastically.

Well, fast forward to today, and I am wondering if the one adrenal gland could have anything to do with what my husband and I have dealt with for the past 2 years. We conceived 2 children easily with no problems who were born in 2006 and 2009. When we tried to have baby #3, two years ago, something was different. We practice natural family planning, so I was very aware of my cycles. But after a surgery and terrible cold, things changed. No longer could we get pregant. I saw several different doctors who all said again, “it’s stress” or “there’s nothing wrong with you.” One even gave me a brochure on how to have a baby. Really! Anyway, I started myself on an “adrenal fatigue” diet last fall, started taking Maca root (because I read it was good for adrenal health), and we got pregnant last November after trying for over a year and a half.

Unforunately, at a 13 week ultrasound, we discovered that the baby stopped growing at 9 weeks. We figured we were just a statistic, and 1 in 3 pregnancies ends in miscarriage. We did not have any testing done because we figured we were just one of the odds. We conceived again in May, only to find out at 12 weeks that our little peanut stopped growing at 11 weeks. We opted for testing this time and are awaiting the results to determine whether or not there was a chromosomal abnormality. Although I am sure it happens, to lose 2 babies, after confirming heartbeats multiple times, seeing it move around, and find out it has passed is devestating. I won’t forgive myself if this happens a third time without ruling out the role my one adrenal gland may have played in this.

One doctor did test my thyroid during our efforts to get pregnant, and my RT3 was very high, especially in relation to my T3. He just put me on T3 and said I was “stressed.” I am now wondering if yes, I was stressed, but my one remaining adrenal could not handle the necessary work required to sustain a pregnancy. Or affected our efforts to even conceive. I have read (though don’t completely understand) the relationship between the RT3 and adrenal glands. I am going to return to Milwaukee to have my remaining gland tested to see if it is indeed working at an optimal level.

I guess my point in joining this board is to not only share my story with Cushings, but also to see how patients have fared after the Cushings was resolved. Has anyone had any long-term affects from only having one adrenal glad? Specifically as it relates to fertility? Curious to hear from others who have gone through this experience. I know there are not many of us. I can’t tell you how many times I have heard, “wow. I have never met a cushings patient before” from various doctors. But I am glad to find others who have shared this experience.

 

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