Mac, undiagnosed bio
I've posted before but I think this is my most complete symptom list. I'm a 30 year old female, happily married...with no conclusive results on anything. The only "positive" test I've had for Cushing's was a salivary cortisol test...my midnight cortisol was nearly triple what it should be...same at noon...but it's below normal at 8am and 4pm. I've been tested at UVA and dismissed after two tests...Dex suppression and ACTH stimulation. It's sad and depressing, and the more I read and research, the more convinced I am that I have Cushing's and/or a pituitary tumor. Any advice is more than welcome. Thank you! :)
Major Concerns:
1. Fatigue
-my entire body feels heavy and sleepy, often achy, as though I have the flu. I've tried to see if there's a magic sleep number...but whether I've had 6 hours or 11 hours of sleep, I'm constantly tired. From Nov-2007 thru April 2008, I had chronic insomnia, complete with Restless Legs.
I'm back to sleeping easily and quickly at normal evening hours, yet I still feel like I was up all night.
2. Blood Sugar
-sometimes would be incredibly low in the early hours of the morning...got a glucose monitor and on two occasions in March and April, it went below 20 and I had a full body seizure and passed out.
3. Blood Pressure
-was always 110/70...suddenly became 148/98 or 100/60 depending on the day
4. Weight
-complete inability to lose weight despite repeated efforts (including nutritionists, personal trainers, Medifast, Optifast, Atkins, Jenny Craig, Weight Watchers, phentermine, and food allergy testing with subsequent elimination of all possible food allergens)...I have central obesity, many purple/pink stretch marks, and a slight buffalo hump. I am 5'6 and 205lbs...not huge but certainly not slim or healthy. My body type isn't like anyone else in my family. My sisters are taller and both are slim. My father is very tall and slim. My mother is my height and overweight, but it's completely due to overeating and lack of exercise. Unlike me, if she even cuts back on a few desserts a week she loses weight quickly.
5. Absent Libido
-my libido was always in full swing and now it is totally gone. I don't believe it's due to anything psychological. It's just upsetting to not be able to have any interest. It's not just that I'm tired or don't feel good...I stopped completely craving sexual contact, and my body seems hyper-sensitive. I love my very handsome and passionate husband dearly, and still love the affection...but it's like a switch was completely flipped. I have zero interest.
6. Infertility
-although we're not looking to have a child right now, my husband and I are practicing Catholics and haven't used any form of birth control since our marriage 18 months ago. I've not gotten pregnant. I've only had two sexual partners in my life (including my husband) and no gynecological issues, save for one large ovarian cyst in 2000. I occasionally have pain in my lower left side mid-month.
Minor Concerns:
1. Easy Bruising/Cuts
-I take forever to heal; profuse and prolonged bleeding from even the smallest shaving nicks. Again, this was terrible for several months and has been better since June 2008.
-I also get strange sores on my tongue that don't hurt like canker sores
2. Muscle Loss/Weakness
-lost muscle strength in hands and upper arms; cannot squat and get up without assistance; climbing stairs causing heavy fatigue/cramping in my legs as well as a racing heart and breathlessness, despite going slowly. I used to enjoy giving massage...now my hands have no stamina and I can't squeeze very hard. Even giving my husband a hug, he notes that I can't hug tightly at all anymore.
-I feel like I have carpal tunnel in my left hand at times, with shooting pains and sometimes tremor, and yet I'm right handed and use my left only to eat/brush my teeth.
3. Voice Lowering
-I lost 1/2 octave off my upper register range (I am an opera singer & voice coach)
4. Acne
-after a lifetime of clear skin and excellent skin care (including regular facials, daily regimen, and expensive products)...I have red blotchiness that occurs in my very pale skin. Tiny pimples are constantly forming at my hairline as well. I went to a dermatologist who gave me a prescription topical cream that does nothing.
5. Under eye dark circles/lines
-sudden dark circles and bags under eyes as well as lines (despite the fact that I am only 30, take terrific care of those areas, avoid allergens, always wear sunglasses, never rub my eyes, and they don't run in the family)
6. Dental problems
-my teeth are falling apart. Despite 2 cleanings a year and regular check ups as well as brushing 3x per day and regular flossing, my teeth have broken, shifted, and I need 4 root canals. I've already had 2 this year. Color is also yellowing.
7. Peripheral Vision Loss
-occurred at 18 after the onset of menstruation and a weight gain of 60 lbs within a few months. I can see with contact lenses but my vision frequently blurs or get fuzzy. My prescription has only improved over the years, though. I am told the eye is healthy.
8. Hair
-my light red hair has darkened and become very gray in a 6 month time frame, as well as thinned considerably. I was losing handfuls but again, that seems to have slowed down. I have to color it every few days and then it fades very quickly or goes gray.
9. Frequent Headaches.
-had massive migraines in college (MRI showed brain atrophy and enlarged ventricles...doctors decided I was having absent seizures and gave me multiple medications that didn't really help...I finally took myself off them in 2003)...have never had a contrast MRI because I'm allergic to shellfish and iodine.
10. Cold/Tingling Limbs
-I am often cold and have numbness/tingling in my hands and legs. I have a family history of hypothyroidism but my numbers are always borderline normal.
11. Swelling/Water Retention
-my legs/ankles often swell, and I always seem to be retaining water despite drinking 80-90oz a day
12. Vitamin D deficiency
-levels below 7 back in January 2008. Received 30,000 IU injection per week for 12 weeks. After that, level went up to 17 Seemed to be normal (31.5) after gallbladder removal. Back down to low 20s at last test in July 2008 despite taking 2,000 IU orally on a daily basis.
13. Heel Spurs
-started in August 2008 and come and go (here now!)...I have a fairly sedentary job so I'm not on my feet a ton during the day.
14. Sweating
-I almost never sweat, even with exercise, but in the last few months (June 2008-present) I've been sweating heavily with little exertion...I've even switched to using my husband's more "manly" deodorant!
Email Mac
Major Concerns:
1. Fatigue
-my entire body feels heavy and sleepy, often achy, as though I have the flu. I've tried to see if there's a magic sleep number...but whether I've had 6 hours or 11 hours of sleep, I'm constantly tired. From Nov-2007 thru April 2008, I had chronic insomnia, complete with Restless Legs.
I'm back to sleeping easily and quickly at normal evening hours, yet I still feel like I was up all night.
2. Blood Sugar
-sometimes would be incredibly low in the early hours of the morning...got a glucose monitor and on two occasions in March and April, it went below 20 and I had a full body seizure and passed out.
3. Blood Pressure
-was always 110/70...suddenly became 148/98 or 100/60 depending on the day
4. Weight
-complete inability to lose weight despite repeated efforts (including nutritionists, personal trainers, Medifast, Optifast, Atkins, Jenny Craig, Weight Watchers, phentermine, and food allergy testing with subsequent elimination of all possible food allergens)...I have central obesity, many purple/pink stretch marks, and a slight buffalo hump. I am 5'6 and 205lbs...not huge but certainly not slim or healthy. My body type isn't like anyone else in my family. My sisters are taller and both are slim. My father is very tall and slim. My mother is my height and overweight, but it's completely due to overeating and lack of exercise. Unlike me, if she even cuts back on a few desserts a week she loses weight quickly.
5. Absent Libido
-my libido was always in full swing and now it is totally gone. I don't believe it's due to anything psychological. It's just upsetting to not be able to have any interest. It's not just that I'm tired or don't feel good...I stopped completely craving sexual contact, and my body seems hyper-sensitive. I love my very handsome and passionate husband dearly, and still love the affection...but it's like a switch was completely flipped. I have zero interest.
6. Infertility
-although we're not looking to have a child right now, my husband and I are practicing Catholics and haven't used any form of birth control since our marriage 18 months ago. I've not gotten pregnant. I've only had two sexual partners in my life (including my husband) and no gynecological issues, save for one large ovarian cyst in 2000. I occasionally have pain in my lower left side mid-month.
Minor Concerns:
1. Easy Bruising/Cuts
-I take forever to heal; profuse and prolonged bleeding from even the smallest shaving nicks. Again, this was terrible for several months and has been better since June 2008.
-I also get strange sores on my tongue that don't hurt like canker sores
2. Muscle Loss/Weakness
-lost muscle strength in hands and upper arms; cannot squat and get up without assistance; climbing stairs causing heavy fatigue/cramping in my legs as well as a racing heart and breathlessness, despite going slowly. I used to enjoy giving massage...now my hands have no stamina and I can't squeeze very hard. Even giving my husband a hug, he notes that I can't hug tightly at all anymore.
-I feel like I have carpal tunnel in my left hand at times, with shooting pains and sometimes tremor, and yet I'm right handed and use my left only to eat/brush my teeth.
3. Voice Lowering
-I lost 1/2 octave off my upper register range (I am an opera singer & voice coach)
4. Acne
-after a lifetime of clear skin and excellent skin care (including regular facials, daily regimen, and expensive products)...I have red blotchiness that occurs in my very pale skin. Tiny pimples are constantly forming at my hairline as well. I went to a dermatologist who gave me a prescription topical cream that does nothing.
5. Under eye dark circles/lines
-sudden dark circles and bags under eyes as well as lines (despite the fact that I am only 30, take terrific care of those areas, avoid allergens, always wear sunglasses, never rub my eyes, and they don't run in the family)
6. Dental problems
-my teeth are falling apart. Despite 2 cleanings a year and regular check ups as well as brushing 3x per day and regular flossing, my teeth have broken, shifted, and I need 4 root canals. I've already had 2 this year. Color is also yellowing.
7. Peripheral Vision Loss
-occurred at 18 after the onset of menstruation and a weight gain of 60 lbs within a few months. I can see with contact lenses but my vision frequently blurs or get fuzzy. My prescription has only improved over the years, though. I am told the eye is healthy.
8. Hair
-my light red hair has darkened and become very gray in a 6 month time frame, as well as thinned considerably. I was losing handfuls but again, that seems to have slowed down. I have to color it every few days and then it fades very quickly or goes gray.
9. Frequent Headaches.
-had massive migraines in college (MRI showed brain atrophy and enlarged ventricles...doctors decided I was having absent seizures and gave me multiple medications that didn't really help...I finally took myself off them in 2003)...have never had a contrast MRI because I'm allergic to shellfish and iodine.
10. Cold/Tingling Limbs
-I am often cold and have numbness/tingling in my hands and legs. I have a family history of hypothyroidism but my numbers are always borderline normal.
11. Swelling/Water Retention
-my legs/ankles often swell, and I always seem to be retaining water despite drinking 80-90oz a day
12. Vitamin D deficiency
-levels below 7 back in January 2008. Received 30,000 IU injection per week for 12 weeks. After that, level went up to 17 Seemed to be normal (31.5) after gallbladder removal. Back down to low 20s at last test in July 2008 despite taking 2,000 IU orally on a daily basis.
13. Heel Spurs
-started in August 2008 and come and go (here now!)...I have a fairly sedentary job so I'm not on my feet a ton during the day.
14. Sweating
-I almost never sweat, even with exercise, but in the last few months (June 2008-present) I've been sweating heavily with little exertion...I've even switched to using my husband's more "manly" deodorant!
Email Mac
Labels: bios, Mac, not yet diagnosed
posted by MaryO at
8:30 AM
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