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Laurel's Story...

For the last few years I've had some health problems. My skin has been quite red and I've had loss of muscle tone along with stretch marks and squiggly purple veins on my skin. In addition, I've been getting "the hump." My arms and legs are weaker and thinner...but unfortunately my belly's large. These symptoms are always there, but the muscle loss and progression seem somewhat episodic. My results on my last trip to endo were normal. Since then I've had a mildly elevated cortisol level. I go to a new endo soon. I find what's going on confusing because I've had some other problems as well: joints cracking, increased shoe size, and lots of skin tags. For whatever reason, I have tons of freckles & moles everywhere! My skin is darkening in places.

I'm hoping my new endo can help me. I've been sort of lurking on this site because I feel until I have some confirmation of what's going on...it's really hard to talk about or be sure of what's going on. The people on this site have been really super though.

Update August 6, 2003

An Overly Long Story of Insanity, Lies, Betrayal, and Hope (?)

About Me

I love to cook. I lived in France for a few years when growing up and really enjoyed their emphasis on savoring life. I enjoy running, reading, and sometimes like writing.

The Label

Not long after graduating from journalism school and the death of my father and grandmother, I experienced a set back when I had an episode of mania 12 years ago. I was diagnosed as having bipolar disorder and did have one episode of depression a few years later. It has been over 8 years since that time and I have had few, if any, problems. Sometimes I've wondered if the diagnosis was correct, but the medicine does seem to help me so I take it.

The Illness(es)

• I have been having problems with fatigue for a long while (ten years). I mostly avoided going to the doctor, because they couldn't really figure out a cause. I very much questioned myself and decided the problem must be in my head or an effect of my medication. One time I saw a doctor who was notoriously bad (I found out later) who accused me of faking because I didn't say verbatim the same thing to him that I said to the intake person (it was essentially the same). I turned out to have mono.
• Approximately 3 years ago was when I really knew there was something wrong. My skin was turning really red, swelling up, my blood pressure was up, and my belly was bloated. It turned out not to be normal swelling (like edema) but my muscles were turning to squishy fat. I got purple marks. My doctor didn't understand and told me I had uticaria and prescribed a diuretic. However, he also did do some (serum cortisol) tests--negative.
• At this time I was seeking an endo. because I had had 2 prior thyroid surgeries (one in high school, one as an adult). The endo. did do one round of testing for Cushing's and nothing turned up.
• The Cushing's symptoms continued over the years (the results stuck--striae, hump, but sometimes they would be much worse--belly very extremely bloated, etc.). However, I also had symptoms of acromegaly (I concluded after research) including hands & feet were getting puffier, my fingers became the classic "spade shaped," and my joints cracked and seemed awkward. There are more…but this is too long already.
• I told my endo. I thought I had acromegaly and he said "you don't look acromegliac" and would not test me for it.
• Three years have gone by and now my symptoms are definite and it appears that I may have Cushing's and acromegaly. Weirdly enough, I suspect that I have Carney Complex as it is associated with the thyroid adenomas/cancer I have and current medical history/problems (freckles in certain spots, lipomas) and family history. I did not come to this conclusion lightly and recognize that a medical expert can only diagnose me.

Recent Medical "Care"

• Two years ago I decided to get a master's degree in a different, helping profession. Unfortunately the pcp I had to see took a long time to understand my problems (she was a little strange in her approach, too). She finally referred me to a radiologist who deals with thyroid cancer--even though that wasn't my problem. This radiologist said he couldn't get my path reports (I believe they really just never read the second page or who knows? They knew where to get report (3) locations.). His office person was really mean to me because they thought I was making up thyroid cancer (due to their bias against me for bipolar). They said they'd resolved the problem…but months later hadn't. This caused major problems regarding not getting field of vision test. The doctor eventually apologized and situation was corrected by my going to the hospital and obtaining the path report with cancer, adenoma, Hashimotos dx.
• When I finally was referred to an endo., turns out he had the wrong information about me. I just found this out! The endo. had information in the chart that this radiologist put together from pre-thyroid surgery files I had given him. Unbelievable! Therefore, the endo. didn't even feel I needed to be seen for thyroid because he thought I had (prior treated) Hashimotos and not also thyroid cancer history which was his specialty (and also adenomas). I wasn't even concerned about thyroid cancer--just about current illness--but the radiologist's error had several serious repercussions. I asked the endo. about Cushing's and brought a list--but I only got out one, specific symptom and he said "you're symptoms are vague" and that I couldn't have Cushing's due to negative UFC.
• I had waited 6 months to see this endo. & he told me to go back to my pcp if I wanted to see him again. I went back to pcp (& didn't ask to see specialist), but she said why don't you see another endo.? She said if it's a long wait, you can see an out-of-network person (for one visit) in between.
• I did see out-of-network endo. & they said to adjust my thyroid meds & wait. They were confused about the one visit.
• I waited another 5½ months to see the third endo. in the same office as the first. She was nice & later said I probably had Cushings. She acknowledged skin tags & foot growth. I was very prepared for meeting, but decided not to ask for tests to give her time to think about what was needed & because my tests are very confusing so far.

  Also, she was the first person who had tried to help me…

Currently:

• Got episode of being very sick prior to and after recent visit. Doctor said "make an appointment when you think is necessary (change it from 3 months wait). I was very sick and tried to make it for fairly soon (would have preferred not to so I could look good with the doctor--but that's what I thought I needed). Doctor said no. Went to pcp and she called doctor (after first telling me to contact head of clinic--but I called her bluff). Was given appointment with 2 weeks wait.
• My pcp said to my doctor she may not necessarily do testing when I come in. She wants to "see how my symptoms have developed." I had agreed with her last time that I wanted to be select the wisest approach to testing (because of complicated nature..ex. interaction between gh & cortisol, possibly episodic Cushings), but want tests done eventually.
• Without going into detail am not only very sick but very sure that I have acromegaly & Cushing's (I know that's totally weird and have really, really, questioned myself). I believe my type of Cushing's is consistent w/PPNAD (Carney Complex). I have been afraid to participate on the board or meet people because I don't have the same extreme weight gain that others have suffered from due to Cushings. My arms particularly & muscles are wasting away. I am hardly eating at all, but do have extreme swelling and weight gain in thighs and abdomen only. I definitely can relate to others who say it doesn't matter what they eat, they gain weight. I guess there are all types of Cushings. I really don't want to "diagnose myself"…but feel somebody has to…I know I will have help soon. I've also decided to quit school for next year (too difficult with memory loss/fatigue). Will have to find job/insurance and this will have a bearing on who I see for help.