Discussions By Condition: I cannot get a diagnosis.

Help? maybe cushing's syndrome?

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: mrsv33
  • December 14, 2012
  • 05:04 PM

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 (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) but not asked to repeat,
and Progesterone and estrogen (normal I think... I don't remember too many tests...)
Urine tests for proteins
I only had one cortisol test and it was the one you take a pill (I think to suppress) at 11pm and have blood taken at 7am - not sure what that means, but I only had one. The other urine tests were to test the protein levels and they came back normal.

8. I bruise so easily that almost always when I get blood drawn from my arm, I have a large purple bruise for weeks on end....

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

10. 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, they gave me a xanax and that's when I started anti-depressants. Since I have taken the prozac and buspar I haven't had a problem with the blood pressure at any doctor's appointment, so I assumed it was that, I dunno.

11. 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.

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 photos and a journal of symptoms - that have progressively gotten worse over the last two-three years. I'm at a loss... and nothing I do seems to help - I feel exhausted and fat - period.

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