Discussions By Condition: I cannot get a diagnosis.

HELP...Cushing's Syndrome maybe - any thoughts?

Posted In: I cannot get a diagnosis. 1 Replies
  • Posted By: mrsv33
  • December 14, 2012
  • 04:22 PM

December 14th, 2012

So I've been seeing an endocrinologist who keeps repeating the same blood work.... which is all over the place (I'll include some numbers below) but hasn't been very clear or upfront about what is going on, so I'm going for a second opinion on Tuesday.


1. Over the past roughly two years, I've gained 85lb (and it keeps going up...) despite my working out every day (40-60 min of cardio plus yoga / pilates) This is my biggest concern. I've cut out most processed foods except fiber one cereal in the morning with almond milk and the occasional out to dinner with friends (3/4 cup of cereal with 1/2 cup milk - usually with strawberries or blueberries).


2. I'm tired all the time - sluggish and can easily sleep 13-14 hours a night (most are at least 12 hours a night) and I feel sleepy during the day if I am not engaged in an activity of some kind -


3. purple marks have appeared all over my middle-section and upper body which is where I seemed to have gained all the weight (my legs and arms haven't gained much weight it seems) (the endocrinologist seemed to be particularly interested in the marks...)


4. I have developed a hump of fat on the back of my neck like a camel and I'm embarrassed about it so I won't wear my hair up very often because I'm so self conscious about it (can I do any exercises to get rid of it?)


5. My period has been absent for months on end - The last two periods were end of July and mid October, even though I seem to develop PMS symptoms around the time I should have a period, but it never comes. (its always been all over the place, but has been very absent and worse over the past two years - hence why I went for the endometriosis laparoscopy in April when they removed stage 1 endo - and I thought I'd be in the clear, but no....


6. I have had a lot of headaches that are dull and constant behind my eyes like and into my neck - and I can't seem to get rid of them... I've found myself taking tylenol everyday lately - but I'm not sure if it helps. And I can't take ibuprofen b/c I am on Prozac (40mg) and buspar (20mg) a day for severe (suicidal) depression - I only developed around the same time I started sleeping so much and gaining weight (mid 2010ish) I am 100% better on the medication, but it seems my body did not catch up.


7. Bloodwork: I'm waiting for copies of my file to come, I only have some numbers from a note from my doctor
On 10/11 -
LH-44.7, FSH-12.5, estradiol 20.3
On 10/26
LH 2.55, FSH -4.4, estradiol 42.3


I also had tests for:
prolactin levels (normal; request to repeat),
cortisol and ACTH (slightly elevated) - only had one cortisol test, and my dr wouldn't repeat I don't know why,
and Progesterone and estrogen (normal I think... I don't remember too many tests...)
Also a series of basic urine tests... (for high levels of protein - came back normal)

8.I am not on steroids nor have ever been...

9. I was in the hospital two years ago for extremely high blood pressure (141/113) that they thought was due to anxiety since I wasn't on meds at that time, they gave me a xanax and that's when I started anti-depressants regularly. Since I have taken the prozac and buspar I haven't had a problem with anxiety or the blood pressure at any doctor's appointment, so I assumed it was that, I dunno.


10. moon face - I'm not sure about b/c I have a round face since gaining weight - I always had very defined cheek bones and jaw line, and they have disappeared since gaining weight - again, my thoughts were just because I gained weight... I don't know now.

11. I also have had significant water retention - I don't know if that means anything.... but my feet, face and hands do swell and then go down again, but that was a note my endocrin doc made as well. (and traveling over the summer, I couldn't fit into shoes and was in severe pain - brought to hospital in Italy for swelling!)



I've had 5 sets of blood tests... I was advised by a neurosurgery PA (family friend) to ask for an MRI of the pituitary - and was told by my first endocrinologist- I didn't need one now because my prolactin levels were normal, but that I might need one eventually (I figure I should have one just to rule out any problems there, but she disagreed, I'll see what the second opinion dr. suggests).


Any thoughts would be appreciated. I have felt like this first doctor wasn't being straightforward with me, and she didn't explain anything, just kept saying, I want you to repeat blood work... and I'm concerned because it all doesn't make sense.... but that's all. She didn't go into detail. :-/

I have kept a journal of symptoms and taken photos of my middle with the purple marks, and buffalo hump.

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1 Replies:

  • Do a thorough medication review with your pharmacist before seeing your physician again. Before seeing your pharmacist make a written list of all symptoms. As you discuss side-affects check off the ones you find on your list of symptoms. Every symptom you described I found on the known list of side-affects for your current medications except for your missed periods. You didn't say if you have been to a gynecologist for a checkup recently. Hope you are feeling better soon.
    Grandmom 25 Replies
    • December 17, 2012
    • 08:42 PM
    • 0
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