Discussions By Condition: I cannot get a diagnosis.

Am I Just Going Crazy? Please Help!

Posted In: I cannot get a diagnosis. 5 Replies
  • Posted By: ChanelVuittonGirl
  • February 16, 2008
  • 09:17 PM

Hi all, Newbie Here. I'm stuck in a rut about my health.

It started around eight years ago. I started putting on A LOT of weight in a very SHORT amount of time (roughly sixty pounds in 18 months), and it is isolated to ONLY my middle (central obesity). My belly sticks out, almost like I'm pregnant. My arms and legs are thin. Plus, from behind, I look completely normal. I hardly eat anything and was an avid swimmer. At the same time, ugly purple stretch marks started appearing on my arms, back of my knees, thighs, stomach, breasts, armpits, buttocks and hips. I have darkening of the skin in my armpits and back of my neck. (It is quite noticeable because I'm a natural redhead and have very pale skin.) My face has rounded out, mostly under my chin and I have a hump on the back of my neck. I also have acne that is isolated to the jawline and stomach troubles.

I have a group of other strange symptoms as well. I cannot sleep AT ALL. I'm up almost ALL night. I get roughly two hours of sleep. I've tried multiple sleep aids, including Ambien, Nortriptyline, and Gabapentin. Nothing has worked. I have High Blood Pressure, severe tachycardia (187 beats resting and cannot be controlled with medication. I currently take Atenolol 100mg with no improvement.), anxiety, muscle weakness, fatigue, Type 2 Diabetes due to insulin resistance, and VERY HIGH ACTH levels, (568 points), and in the last six months, I have been diagnosed with severe Non-Alcoholic Fatty Liver Disease.

I'm 25.

I have been tested for Insulin secreting tumors and PCOS (with blood work and radiological studies; both negative). Years ago, my Cardiologist noticed the stretch marks and mentioned Cushing's Syndrome. But when I bring up the subject with my primary doctor, I'm told my symptoms are due to overeating. My Endocrinologist has told me to my face that "he has no idea what the ***l is wrong with me". I have many other specialists concur with my Cardiologist, that I most likely have Cushing's. My MRI's are normal and I do not have elevated cortisol levels. I have wanted to take a Suppression Test, but my Endo thinks there is no need to.

I don't know what to do. I am so embarrassed of my appearance that I won't even leave my house except to go to the supermarket or doctor. Looking back on photos of myself from High School to now, you see a significant, progressional change in what I look like. Most of my friends can only recognize me because of my red hair, but are shocked to see what I've turned into. I can't even stand to look at myself in mirror anymore. But because I'm in managed health care, I can't even get a second opinion due to the fact that my health care network has only one Endo.

And according to them; I have a right to a second opinion; but only if they have the facilities to do so. If you look at the attachments I uploaded, you will see a vast difference in my appearance. One is of when I graduated from High School in 2000; the other is what I look like presently.
I very much think I have Cushing's due to the overwhelming physical and internal characteristics/signs my body is presenting.

Or am I just losing my mind?

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5 Replies:

  • Hmmm... I don't think you are going crazy. I think you just need different doctors. Have they explained your elevated ACTH yet?????When they checked your cortisol, did they just do the am blood draw, or did they do another one again in the afternoon? Did they collect your urine for 24 hours and look at it there?Increased ACTH levels can be from cushing's disease, addison's disease, ectopic ACTH production (lung cancer, renal cancer, pancreatic cancer), or stress.It sounds like you need to switch doctors and go to an endocrinologist who is willing to do the suppresion test. I'd also make sure they checked your 24 hour urine for cortisol. Sorry you are going through this.
    Anonymous 42,789 Replies
    • February 17, 2008
    • 07:23 AM
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  • It definitely sounds like cushings disease.Could you go to the hospital and get tested there or isnt it possible to see another doctor?Sorry but i think your primary doctor is incompetent-could you maybe threaten to sue him for negligence if he doesnt do the tests?Isnt it possible to see another doctor?Are you sure the cortisol test was done correctly?Theres also psuedo-cushings syndromeHere are some links-maybe you could bring them to your doctor if any are relevanthttp://csrf.net/Testing.htmhttp://www.neuro-endo.org/?id=201http://books.google.com/books?id=id-AL7mFv8IC&pg=PA26&lpg=PA26&dq=high+acth&source=web&ots=3ZPtmqaCDC&sig=ugCPUv-xTm7xQoAejNakrBu-L9Y#PPA26,M1http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/cushings_syndrome.jsphttp://sciencelinks.jp/j-east/article/199918/000019991899A0703921.php
    Anonymous 42,789 Replies
    • February 17, 2008
    • 07:42 AM
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  • My thought was possibly cushing's . As for the hump on back of your neck.. this is often called a buffalo hump and other things which can cause http://wrongdiagnosis.com/sym/buffalo_hump.htm i hope you get to change doctors.
    taniaaust1 2,267 Replies
    • February 17, 2008
    • 11:31 AM
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  • Hi all and thanks for your replies!Blaze, thanks for your kind words and the all the helpful links you gave me! I have done the 24 hour urine cortisol and it was slightly elevated once; but in my Endo's opinion, it wasn't enough to justify have a supression test. And to make things worse, my insurance won't allow me a second opinion because my network only has 1 endo!No, no one can explain the elevated ACTH. I've tried going to the hospital, but I am just turned away.I'm trying to save up enough money to see a rather prominent endo who sspecializes in abnormal Endocrinology. In addition to the ACTH, I have high blood glucose as well as high insulin.I hope he can shed light on the situation! UGH!
    ChanelVuittonGirl 1 Replies
    • February 17, 2008
    • 10:20 PM
    • 0
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  • "Cushings Disease: This syndrome is caused by tumors on the ACTH secreting cells of the pituitary gland. patients with this problem develop fat deposits in strange places , spontaneous scarring of the skin along the belly that looks striated, pimples in adult, high blood pressure and elevated body temperature. These tumors are usually so small that the surgeon might have a difficult time finding the little "bad pearl" in the gland during surgery. This is the one time when small can be bad, especially if the surgeon is unable to locate and remove the tumor! ACTH secreting tumors, although small and troublesome, are readily cured by surgery alone" Pituitary adenomas have been known to make levels of ACTH rise and fall, Thus making cortisol do the same.I'd would be asking for another MRI of the Pituitary gland. Or possibly Ectopic ACTH syndrome or Ectopic CRH syndrome where the tumor is elsewhere in the body.
    TerryG 120 Replies
    • February 18, 2008
    • 00:56 PM
    • 0
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