Discussions By Condition: Endocrine conditions

HELP! CAH, cushing's, PCOS, or other?

Posted In: Endocrine conditions 9 Replies
  • Posted By: jamie_lynn
  • February 13, 2008
  • 06:52 AM

Here's my story: Last November I got a new job and started having (or maybe just noticing more) sleep problems. At first, I thought it was just that I was having a hard time adjusting to the schedule (6 am - 6:30 pm, 2 on, 2 off, 3 on, 3 off). After 6 months of trying everything to adjust (staying on a schedule even on days off, no stimulants afternoon, dark quiet bedroom,...)I was still having problems. I brought it up to my Dr. and he prescribed ambien. Too keep a long story as short as possible, as of today I've been treated for depression by my regular Dr. and a shrink (that's not it), did a sleep study which was "normal" (no apnea, restless leg, and so on) and finally ended up seeing an endo. The main reason I went was to find out why I have trouble sleeping, but I was also interested in getting a second opinion. I saw an endo 5 years ago to make sure I didn't have an adrenal disorder and not PCOS which my reg Dr. had diagnosed. I did an overnight dexamethasone test and that came back high enough for the endo to order another test: 24 hour cortisol in urine. I believe the results of that test were a little on the high side, but not high enough. He sent a letter saying he thought I had PCOS and nothing else, but now I am wondering if an adrenal disorder was overlooked and the endo I saw recently thought I might actually have congenital adrenal hyperplasia. So here are my full list of symptoms:
I started getting pubic hair when I was 4, grew quickly, and got my 1st period when I was 9 or 10 (possibly CAH or maybe cushing's), however I am taller than my mom and 2 sisters (unlike CAH or cushings, but could be genetic; my mom developed quickly also, but normally--no pubic hair at 4 years old!)
When I was about 1 year old I started getting sick alot, and to this day I still get numerous recurrent infections (sinus, ear, yeast, piercings that just never seem to heal), but no serious illness. (cushing's?)
As soon as I stopped growing up, I started growing out...When I was 11 or 12 I gained about 50 lbs in a year, no changed in diet or exercise and eventually became morbidly obese. At the same time my periods became irregular and eventually stopped all together; I also started growing facial hair which is now a full beard (not as thick as a man's, thank God!). I also have clitormegaly.
None of my tests (glucose, hemoglobin A1C, testosterone, cholesterol) for PCOS were really conclusive: either normal or on the high side of normal. An ultrasound of my ovaries showed they were normal--no cysts at all and not enlarged.
I lost about 100 lb after being diagnosed with PCOS by exercising and dietary changes, but I am always overweight though I exercise a lot and eat healthy. If I slip up a bit on exercise/diet, I rapidly gain weight.
And now I am sooo tired all the time, but cannot sleep. After more than a year of good sleep hygiene, 4 different (all useless) prescription sleeping pills, a couple of different antidepressants, and more Dr. vists than an otherwise healthy 24 year old should, have I still have sleep issues. I usually take a couple of antihistamine to help me fall a sleep, but after 2-4 hours I wake up and usually can't fall back asleep. When I wake up it feels like it is just time to be awake and I am ok for a couple of hours then I get very tired. I need 2 X15 mg of adderall and 3-4 cups of coffee in the morning to be alert and able to focus and remember things at work. Some days I feel like I can barely get up the stairs. I also started to have depression (sometimes I have to hide in the bathroom at work because I can't stop crying) in the last couple of months. My job is not the cause of all this. I like it, my boss, and coworkers.
I seem to have hot flashes every now and then and I am very intolerant of heat--once I get hot I have a hard time cooling down and I tend to sweat a lot, even after losing 100 lbs.
In my internet searching I have found alot about insomnia, constant tiredness, and depression being symptoms of cushing's, but not CAH. I can't really find much about symptoms of non-classical CAH other than virilism, salt-wasting, and ambiguous genitalia. If anyone has CAH I would appreciate if they would respond to this thread with any other symptoms. After reading about other people's problems getting diagnosed properly, it makes me worry that I might hear the "your results were abnormal, but not abnormal enough" response again. I really think I have some sort of adrenal/pituitary disorder, but it may be more subtle (but still ruining my life!) than the unignorable results Drs seem to need to make the diagnosis. I would greatly appreciate any advise or to hear about any similar experience.

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9 Replies:

  • Here's my story: Last November I got a new job and started having (or maybe just noticing more) sleep problems. At first, I thought it was just that I was having a hard time adjusting to the schedule (6 am - 6:30 pm, 2 on, 2 off, 3 on, 3 off). After 6 months of trying everything to adjust (staying on a schedule even on days off, no stimulants afternoon, dark quiet bedroom,...)I was still having problems. I brought it up to my Dr. and he prescribed ambien. Too keep a long story as short as possible, as of today I've been treated for depression by my regular Dr. and a shrink (that's not it), did a sleep study which was "normal" (no apnea, restless leg, and so on) and finally ended up seeing an endo. The main reason I went was to find out why I have trouble sleeping, but I was also interested in getting a second opinion. I saw an endo 5 years ago to make sure I didn't have an adrenal disorder and not PCOS which my reg Dr. had diagnosed. I did an overnight dexamethasone test and that came back high enough for the endo to order another test: 24 hour cortisol in urine. I believe the results of that test were a little on the high side, but not high enough. He sent a letter saying he thought I had PCOS and nothing else, but now I am wondering if an adrenal disorder was overlooked and the endo I saw recently thought I might actually have congenital adrenal hyperplasia. So here are my full list of symptoms:I started getting pubic hair when I was 4, grew quickly, and got my 1st period when I was 9 or 10 (possibly CAH or maybe cushing's), however I am taller than my mom and 2 sisters (unlike CAH or cushings, but could be genetic; my mom developed quickly also, but normally--no pubic hair at 4 years old!) When I was about 1 year old I started getting sick alot, and to this day I still get numerous recurrent infections (sinus, ear, yeast, piercings that just never seem to heal), but no serious illness. (cushing's?)As soon as I stopped growing up, I started growing out...When I was 11 or 12 I gained about 50 lbs in a year, no changed in diet or exercise and eventually became morbidly obese. At the same time my periods became irregular and eventually stopped all together; I also started growing facial hair which is now a full beard (not as thick as a man's, thank God!). I also have clitormegaly.None of my tests (glucose, hemoglobin A1C, testosterone, cholesterol) for PCOS were really conclusive: either normal or on the high side of normal. An ultrasound of my ovaries showed they were normal--no cysts at all and not enlarged.I lost about 100 lb after being diagnosed with PCOS by exercising and dietary changes, but I am always overweight though I exercise a lot and eat healthy. If I slip up a bit on exercise/diet, I rapidly gain weight. And now I am sooo tired all the time, but cannot sleep. After more than a year of good sleep hygiene, 4 different (all useless) prescription sleeping pills, a couple of different antidepressants, and more Dr. vists than an otherwise healthy 24 year old should, have I still have sleep issues. I usually take a couple of antihistamine to help me fall a sleep, but after 2-4 hours I wake up and usually can't fall back asleep. When I wake up it feels like it is just time to be awake and I am ok for a couple of hours then I get very tired. I need 2 X15 mg of adderall and 3-4 cups of coffee in the morning to be alert and able to focus and remember things at work. Some days I feel like I can barely get up the stairs. I also started to have depression (sometimes I have to hide in the bathroom at work because I can't stop crying) in the last couple of months. My job is not the cause of all this. I like it, my boss, and coworkers.I seem to have hot flashes every now and then and I am very intolerant of heat--once I get hot I have a hard time cooling down and I tend to sweat a lot, even after losing 100 lbs.In my internet searching I have found alot about insomnia, constant tiredness, and depression being symptoms of cushing's, but not CAH. I can't really find much about symptoms of non-classical CAH other than virilism, salt-wasting, and ambiguous genitalia. If anyone has CAH I would appreciate if they would respond to this thread with any other symptoms. After reading about other people's problems getting diagnosed properly, it makes me worry that I might hear the "your results were abnormal, but not abnormal enough" response again. I really think I have some sort of adrenal/pituitary disorder, but it may be more subtle (but still ruining my life!) than the unignorable results Drs seem to need to make the diagnosis. I would greatly appreciate any advise or to hear about any similar experience.Hi there:Have you had your pituitary checked? Sounds like it could be a growth hormone issue or something of that sort. If your insurance covers it, get an MRI of the pituitary and get blood work.However, this can be very tricky and complicated to pin down so you have to have the right doctor. Cushings can be cyclical and can give lots of false negatives when you actually have the disease.There is a doctor named Bill Ludlam in Seattle Washington at Swedish Hospital who is doing some very good work with these types of patients. I am his patient as well, and he is very throrough.Good luck!Carole
    Anonymous 42789 Replies Flag this Response
  • You should also go to an endo who specializes in Cushings. I have had the same issue with a false PCOS diagnosis due to elevated androgens. No positive results for LO-CAH. I was on dexamethasone for 10 yrs and seemed to help up to a point. Get checked for Cyclic/Intermittent Cushing's. Have the doctors check your blood (am/pm, CAH Stimulation, Dex Suppression), urine and 2+ saliva tests for cortisol. Get off all your meds, so they don't interrupt your HPA, including all meds for anxiety and sleeping...they will affect results. Best of wishes and I hope your health issues are resolved!
    Anonymous 42789 Replies
    • September 16, 2008
    • 07:20 AM
    • 0
    Flag this Response
  • I might be able to help you with the sleep...I had really bad insomnia for 2 years. I tried everything to get rid of it - including the sleeping medications (some of which made it worse) - but it wasn't until 6 weeks ago that I realised it's probably linked to PCOS. I made some dietary changes and started taking a whole lot of supplements... and now I sleep well virtually every night.Here's what worked for me:1. diet changes - I cut out sugar and refined carbs and eat more protein. I find if I slip up and have a chocolate bar, dessert etc during the day I sleep badly at night.2. I'm taking a whole lot of supplements - glucolin, inositol and others.I set up a blog which explains it in more detail.Check out: http://sleepingwithpcos.blogspot.com/I really hope it helps you.
    Anonymous 42789 Replies Flag this Response
  • You are not alone... Check out www.cushings-help.com and join the boards there. They are extremly helfpul! Kiera
    Anonymous 42789 Replies Flag this Response
  • You are not alone... Check out www.cushings-help.com and join the boards there. They are extremly helfpul! KieraIf you can, go see a reproductive endocrinologist in Melrose Park, PA. His names is Jerome Check. 215.635.4400. He's amazing and brilliant and he'll listen to you and believe you.
    Anonymous 42789 Replies
    • September 18, 2009
    • 10:05 PM
    • 0
    Flag this Response
  • hmm I'm not an expert, just someone also suffering symptoms that may be related to the adrenals/pituitary. My doctor thinks that I might have nonclassical CAH...This can cause symptoms of excess androgens in women and in some, symptoms of adrenal insufficiency (eg fatigue, low blood pressure etc.). However, the adrenal symptoms are due to cortisol which is too LOW...in other words, you would be on the thinner side, and feeling tired due to LOW blood pressure (eg you might get dizzy spells, easily cold etc.). It's also most common in Ashkenazi Jews and those of Spanish or Italian background...this doesn't sound like what you're experiencing. However, the precocious puberty is curious, and does sound like CAH...I think my doctor is testing something called 17-OHprogesterone, ACTH and cortisol...when you have CAH, your 17-OHprogesterone is high because this is the precursor to cortisol (which your body has trouble producing)...ACTH is generally high (your pituitary is working, and senses low cortisol, so it produces extra ACTH to stimulate cortisol production), cortisol is generally low and male hormoes (esp. DHEA-S produced mostly by the adrenal glads) are high...You should read more about Cushing's and see if it sounds like you...the appearance of a Cushing's patient is generally pretty specific -- upper body obesity with thin limbs, round moon-face that's generally red/ruddy, often a "buffalo" hump between the shoulder blades on the back, and often red/purple stretch marks on the body. I don't think Cushing's generally causes precocious puberty though?...It's pretty rare also. I think that your pituitary might be over-producing one of its hormones, as the previous poster suggested. If you're feeling lousy, it's worth talking to a new doctor about it. Good luck!
    Anonymous 42789 Replies Flag this Response
  • Hi, was wondering if you'v ever been diagnosed with add - it's not the same as adhd but the government claims add disappears as you grow older and so they term it as adult adhd. I have almost the exact problem as you. The weight gain, facial hair, tiredness (waking up good and needing to sleep only an hour or so after getting up, but toss and turn and can't ever really get a proper relaxed sleep) etc. I'v done test's upon test's and all came back clear. I get a little scattered at times but thought that was normal. I piled on the weight when i hit about 11yrs old, early puberty changes before that, had a few periods which soon stopped intirely. I'v had a laproscopy and curette to see if any of the normal not inlarged or dangerous cyst's on my ovaries might be the cause of it and nothing. All clean! I sweat, get agitated a lot, and no tolerance to heat! which is hard cuz i live in a very hot place! I'v exhausted every test there is, and i'm only 25! But when i was found to have add, my doctor prescribed me on dexamphetamine 5mg and i started taking 4-6per day, this only helped a little. A normal healthy person however, would stay awake, alert, happy and energetic for 2 days straight by taking only 3 of these amphetamine tablets! At first i lost weight quickly, because i too am very healthy and fit, just can't manage to lose the kilo's! But then 3 years later, i'm taking 12 tablet's a day and they do almost nothing, I started putting wieght back on, becoming depressed again now this leads me to think that i'v got something wrong with me they still aren't picking up! I'v got a beautiful 4yr old daughter who is a miracle, since i was told i had pcos and couldn't have kids, i'v only just lost my partner of 9yrs to a motorvehicle accident and i'm all she's got. It worries me that they won't find out what's wrong with me till i'm dead and they'v done the autopsy! I'v had to be put on a strong medication called seroquel to help me sleep and i take 200mg a night, but even that over time has stopped it's effectiveness. I don't know what to do anymore. i'v got early degenerative arthritis in my cervical (neck) bones, thigh splint's (but never had a stress fracture of operation to cause one), a SUSPECTED medullary sponge kidney, pcos (that changes sometimes the results come back positive, other times negative), hersutism (facial hair), depression, and to top it off i'm obese. I'v had something like a heart attack (where according to the ambulance officer's i was having one, they had to stop the ambulance twice on the way to the hospital to administer dire first aid, inject something into me (i was out of it hardly even there when this happened mentally), the put in a drip thing on the top of my hand so the hospital had immediate access, sprayed stuff under my tongue... the whole works! Then just as we arrived, the monitor started showing me coming back to a normal rythm. the hospital test's showed nothing, yet I was showing a full blown heart attack in the ambulance! I'v suffered severe palpitations from time to time and yes i'v done the whole heart monitoring test walking around with it strapped to me for a few weeks and nothing. But my gp has caught it first hand and put me on a monitor which showed once again my heart was going so fast i was almost about to go into cardiac arrest and then suddenly stop! And it goes normal. If you or anyone else can give some advice or tell me how your test's have come out, i'd be so grateful. thanks Here's my story: Last November I got a new job and started having (or maybe just noticing more) sleep problems. At first, I thought it was just that I was having a hard time adjusting to the schedule (6 am - 6:30 pm, 2 on, 2 off, 3 on, 3 off). After 6 months of trying everything to adjust (staying on a schedule even on days off, no stimulants afternoon, dark quiet bedroom,...)I was still having problems. I brought it up to my Dr. and he prescribed ambien. Too keep a long story as short as possible, as of today I've been treated for depression by my regular Dr. and a shrink (that's not it), did a sleep study which was "normal" (no apnea, restless leg, and so on) and finally ended up seeing an endo. The main reason I went was to find out why I have trouble sleeping, but I was also interested in getting a second opinion. I saw an endo 5 years ago to make sure I didn't have an adrenal disorder and not PCOS which my reg Dr. had diagnosed. I did an overnight dexamethasone test and that came back high enough for the endo to order another test: 24 hour cortisol in urine. I believe the results of that test were a little on the high side, but not high enough. He sent a letter saying he thought I had PCOS and nothing else, but now I am wondering if an adrenal disorder was overlooked and the endo I saw recently thought I might actually have congenital adrenal hyperplasia. So here are my full list of symptoms:I started getting pubic hair when I was 4, grew quickly, and got my 1st period when I was 9 or 10 (possibly CAH or maybe cushing's), however I am taller than my mom and 2 sisters (unlike CAH or cushings, but could be genetic; my mom developed quickly also, but normally--no pubic hair at 4 years old!) When I was about 1 year old I started getting sick alot, and to this day I still get numerous recurrent infections (sinus, ear, yeast, piercings that just never seem to heal), but no serious illness. (cushing's?)As soon as I stopped growing up, I started growing out...When I was 11 or 12 I gained about 50 lbs in a year, no changed in diet or exercise and eventually became morbidly obese. At the same time my periods became irregular and eventually stopped all together; I also started growing facial hair which is now a full beard (not as thick as a man's, thank God!). I also have clitormegaly.None of my tests (glucose, hemoglobin A1C, testosterone, cholesterol) for PCOS were really conclusive: either normal or on the high side of normal. An ultrasound of my ovaries showed they were normal--no cysts at all and not enlarged.I lost about 100 lb after being diagnosed with PCOS by exercising and dietary changes, but I am always overweight though I exercise a lot and eat healthy. If I slip up a bit on exercise/diet, I rapidly gain weight. And now I am sooo tired all the time, but cannot sleep. After more than a year of good sleep hygiene, 4 different (all useless) prescription sleeping pills, a couple of different antidepressants, and more Dr. vists than an otherwise healthy 24 year old should, have I still have sleep issues. I usually take a couple of antihistamine to help me fall a sleep, but after 2-4 hours I wake up and usually can't fall back asleep. When I wake up it feels like it is just time to be awake and I am ok for a couple of hours then I get very tired. I need 2 X15 mg of adderall and 3-4 cups of coffee in the morning to be alert and able to focus and remember things at work. Some days I feel like I can barely get up the stairs. I also started to have depression (sometimes I have to hide in the bathroom at work because I can't stop crying) in the last couple of months. My job is not the cause of all this. I like it, my boss, and coworkers.I seem to have hot flashes every now and then and I am very intolerant of heat--once I get hot I have a hard time cooling down and I tend to sweat a lot, even after losing 100 lbs.In my internet searching I have found alot about insomnia, constant tiredness, and depression being symptoms of cushing's, but not CAH. I can't really find much about symptoms of non-classical CAH other than virilism, salt-wasting, and ambiguous genitalia. If anyone has CAH I would appreciate if they would respond to this thread with any other symptoms. After reading about other people's problems getting diagnosed properly, it makes me worry that I might hear the "your results were abnormal, but not abnormal enough" response again. I really think I have some sort of adrenal/pituitary disorder, but it may be more subtle (but still ruining my life!) than the unignorable results Drs seem to need to make the diagnosis. I would greatly appreciate any advise or to hear about any similar experience.
    Anonymous 42789 Replies
    • October 11, 2010
    • 00:42 PM
    • 0
    Flag this Response
  • "I had really bad insomnia for 2 years. I tried everything to get rid of it - including the sleeping medications (some of which made it worse) - but it wasn't until 6 weeks ago that I realised it's probably linked to PCOS. I made some dietary changes and started taking a whole lot of supplements... and now I sleep well virtually every night.1. diet changes - I cut out sugar and refined carbs and eat more protein. I find if I slip up and have a chocolate bar, dessert etc during the day I sleep badly at night.2. I'm taking a whole lot of supplements - glucolin, inositol and others."Cool, that is a great news, I'll follow your tips and let see if it will works for me too.
    inellgilsta 30 Replies
    • December 7, 2010
    • 01:33 AM
    • 0
    Flag this Response
  • I guess I will have to be the one dissenting voice here speaking against Cushing's.You sound like many, including me (formerly), until they were diagnosed with Hyperparathyroidism. Please insist on a ionized/serum calcium, PTH (Parathyroid Hormone) intact assay and a Vit D test. (There are hundreds of us who chat on a parathyroid awareness page--you would meet yourself over and over again. Hopefully, you can stop this disease before it does to you what it's done to those of us in our 40's to 60's range. Hair, skin, nail "disturbances" , adrenal insufficiency/renal damage, heart problems, pancreatitis, GERD, depression, insomnia, irregular menses/miscarriages, intestinal difficulties, vision disturbances. overwhelming fatigue (and this is the short list).I do hope you will investigate this and the sincerest of good luck to you!
    Anonymous 42789 Replies
    • December 29, 2010
    • 03:28 AM
    • 0
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