Discussions By Condition: Endocrine conditions

Dx ***l...need to know what to ask for next

Posted In: Endocrine conditions 1 Replies
  • Posted By: Anonymous
  • October 4, 2008
  • 02:19 AM

Hi all...

I'm sooo glad to find this place. I've been on the dx roller-coaster since 2005, with the lastest episode being an ER trip last night that turned up nothing *sigh*

My next goal is to get my primary care doctor to give me a referal to an endo and hope that they can figure it out. Here's the scoop...

1. I get what my doctors all now agree are anxiety attacks, by my therapist hubby disagrees as the 'episodes' as he calls them come on when I'm doing stupd, quiet things (like last night...watching 'Dodgeball' and having a laugh!)

My usual 'episodes' run a normal pattern...I feel a slight flutter in my chest, then feel a bit 'buzzy' or jittery. Then my hands and feet go ice cold, I may feel a bit lightheaded, and then after about 15 minutes of this, I'll start getting an incredible urge to go to the bathroom and will run for the loo every 5 minutes or so for anywhere up to 2 hours. Xanax helps with these episodes, and they seem to come more frequently around my period. But my hormones have been out of whack for years, and lately I figure they must be more outta whack as they are coming on all the time.

2. Have 'high BP' that is well controlled on drugs and exercise. Used to have high cholesteral, but now it is beautifully normal. I have had everything done except a heart cath, and my heart is apparently perfectly healthy - which considering my lousy family history is a freaking miracle.
3. I eat well, exercise 3-7 days a week (I'm training for a 1/2 marathon next March). I was doing really well exercising, but lately I find that I'm okay while exercising, then afterward I totally CRASH. Can hardly move...even if all I did was walk a couple of miles...afterward my arms feel like lead, my hips and legs feel like gravity has increased and all I want to do is sleep.
2. VERY dry scaly skin...especially on my cheeks and forehead.
3. Hair breaking off and what isn't breaking is falling out. I get globules of it when I have a shower, to the point of only getting my hair wet 3 times a week to try to minimize things.
4. I have PCOS and all the fun that comes with it.... hair growing under my chain in a complete forest, on my breasts, belly, etc... Estrogen dominance, too little progesterone...I'm not on birth control pills as I have a progesterone IUD due to a cancer scare 3 years ago. Oh yeah...and insulin resistance, etc...
5. My body temperature is usually on the low-ish side...96....I REALLY feel the heat, but am not too crazy about being cold. That said, i keep my home set at 65 because if it is any higher than that I find that I get short of breath or 'air hunger' as they call it.
6. Have trouble getting to sleep....and even when i've slept a full night, I'm sooooo tired the next day. I always fall in a heap around 2pm...even when doing Atkins/low carb (yeah...I've tried that too to find relief...no good...and too expensive in the current economy).
7. I eat, exercise and still can't shift any weight. Tried adding metformin in to help with that and it hasn't done anything (doesn't work for everyone). I have times when I will gain 5 pounds over night...and other times when I'll lose 10 in a week without doing anything.

I have been to doctor after doctor and everyone just says "it is in your head"..."you are lying about exercising and eating right...if you do that you WILL lose weight", etc... *sigh* I spent time when I got home from the ER tonight crying because I'm sooo frustrated and tired of being treated like I'm nuts. I'm really thankful that my husband is supportive and doesn't buy into the "it's in your head, take benzos and it will all go away and you'll be a happy girl again".

SO...other than wanting to vent my spleen about what has been going on. I'm wondering specifically what tests I need to ask for when I see the endocrinologist. As I'm thinking this is hormonal (or thyroid related) would a reproductive endo be able to deal with both issues, or do I need a generalist?

Thanks in advance for your responses...I'm just sooooo thrilled to know that I'm not alone in all of this. I'm tired of the roller coaster and want my life back.



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  • hi,i know how you are feeling. i have been going through this for years. when i had insurance i couldn't get a doc to run a test to save my life. i have my period once a year or less since i was 15. when i don't eat much and exercise, i gain weight (10-30 lbs rapidly). when i am ravenous and don't fight the urge to eat, i stay the same weight. i have headaches, loss of scalp hair, a few hairs at random on chin, breasts, belly. my face is red and dry most of the time, but sometimes i get so hot it's ridiculous, and my face gets oily. i can sleep like a baby for 3 days and then i sleep on and off for a month. sleep a couple hours, then up, then crash. one day i can exercise for two hours, the next day i can't get up the stairs. just the last couple of weeks i have started passing kidney stones, and it is really hard to stay hydrated. one of the worst symptoms i have is thin stretch marky skin-especially on my abdomen. in the morning my skin looks high, tight and smooth on my abdomen and legs-by the afternoon i have to put on a size bigger jeans and this skin is just hanging down. this is very depressing to me.i am going to force my doc into doing some tests. if he refuses again, i'll keep searching until i find a doc that doesn't think i'm a fat pig looking for an excuse. the sad part is in all this time i've had miscarriages and am getting to an age where it would not be healthy to get pregnant with all these pre-existing conditions.1)24 hour free cortisol2)low dose dex test3)4 day dex test with urine collection and crhi feel that i may have cushings, even though they tell me i have pcos.i hope you find help
    Anonymous 42,789 Replies
    • December 2, 2008
    • 04:11 AM
    • 0
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