Discussions By Condition: Endocrine conditions

I think I have cushings but no one will help!!!!

Posted In: Endocrine conditions 12 Replies
  • Posted By: Anonymous
  • February 2, 2007
  • 07:10 PM

I am 36 year old female. Ten years ago I had problems for three years with severe fatigue, facial paralysis, weakness, and the list goes on. I slowly started getting better after a few years but never got the energy back. Five years ago I broke out with a severe rash, diagnosed with eczema, and I was given a cortisone shot. This helped but the rash became really bad again and three months later got another shot. This shot did not help my rash but I noticed about a week later I started getting tons of hair on my face. It grew after two weeks to about ½ inch or more long and was all the way up to my cheekbones. I got rid of the hair with creams but have been having problems with it ever since. I also some time soon after that starting gaining weight, all upper body and almost all of it in my stomach. I have continued to put on weight over the past five years and I cannot lose a pound. Although I have only put on 15 or 20 pounds to me it feels like a 100. No diet or exercise will take it off. I finally got so bent out of shape about my stomach, I could pass for eight months pregnant, that I had liposuction. It has been about a year now and my stomach looks like I am five months pregnant already. I have dieted the whole time and put the weight back on. My face is enormous but my legs are small. This past nine months I have been diagnosed with severe hypertension, high cholesterol, insulin resistance, polycystic ovary syndrome, osteoarthritis. I also had a mini stroke (they think and was in hospital last year) and have still been having some visual disturbances. I still have the eczema and I also have ocular hypertension and they almost started me on glaucoma drops. My heart races all the time and I have a small hump on the back of my neck. They did check my cortisol levels and they came back fine. It was the dexamethasone suppression test. I took just one pill and the test the next day. Does anyone know how accurate this test is. Should I have the urine test. I have had MRI of brain in hospital which was fine. I also have to see a vascular specialist for circulatory problems and I have a bone density test which showed some bone loss but not significant. I am 36 and falling apart and I am tired all of the time and have muscle weakness, fatigue, headaches, fatigue!!!!!! I feel like I am on an adrenaline rush all day, I wake up like this and it does seem to get better at night but now I am only sleeping about four hours a night five nights a week. The doctor doesn't think I look cushionoid but I have felt horrible for years and it is taking its toll! Any feedback from anyone would help especially if there is anyone who has or had Cushings. I know it is rare but I do in my heart think i have it. I have been sick for so many years and no answers and this cortisol test was my last hope and they just called me about an hour ago and said it was fine. I am crushed!!

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12 Replies:

  • It does sound like you need a good evaluation by someone who specializes in Pituitary and Adrenal diseases, not every Endo will be able to test appropriately. There are many people who have surgically proven Cushing's and have a NORMAL dex suppression test. A 24 UFC is a very good test, however NO test is 100%. You can find a lot of information at www.cushings-help.com and there is a helpful doctor section, and you can find a doctor in your area that has treated a patient on the Cushing's boards. Good luck and if you have any questions let me know. Oh, and I have Cushing's, I don't know if that matters or not~
    girlfromipanema 12 Replies
    • February 3, 2007
    • 05:23 AM
    • 0
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  • It does sound like you need a good evaluation by someone who specializes in Pituitary and Adrenal diseases, not every Endo will be able to test appropriately. There are many people who have surgically proven Cushing's and have a NORMAL dex suppression test. A 24 UFC is a very good test, however NO test is 100%. You can find a lot of information at www.cushings-help.com and there is a helpful doctor section, and you can find a doctor in your area that has treated a patient on the Cushing's boards. Good luck and if you have any questions let me know. Oh, and I have Cushing's, I don't know if that matters or not~Thank you for your reply. I have checked out every website I could find and learned a lot. I do have some questions. In the past five years my hair has gotten thinner, but not all in one spot, I can just tell, and it is constantly breaking off becuase it is so dry. My fingernails are brittle and I can take them off in layers as well. I also tend to bruise easy. Normally I don't know how I got them. About two years ago I had about 19 all at once. Never to that degree again since then though. In the last month I have began really edgy and emotional but I don't feel good so I keep contributing it to that. Does this sound familar? I see my endo in about ten days and I am going to take in photos of before the shots and after. I didn't even mention that to her or the weight or hair because I didn't think it was releavant until I read up on cortisol. I do not have stretch marks or hair on my back or chest though. Also, about my stomach, I have taken every stomach pill known to man. My PCP told me about five years ago when when it started I had IBS because I was complaining how bloated I was and how big it had gotten. None of the pills worked at all. I am bloated literally 24 hours a day every day for five years. I even once took a pregnancy test. Also, I have never been able to have children. Went through all of tests and fertility drugs. No pregnancy and they have no idea why. It seems about six years ago when I saw the infertility specialist, and he good, would have caught onto the polycystic ovary syndrome. It was just a few months ago when a different doctor said he thought I had that. My endo doesn't think I do and neither do I. thanks for letting me ramble. It felt good to get it all out!! I hope you recovered from your ugly disease!!! Did you have surgery. how long did it take before they finally figured out what was wrong?
    Anonymous 42789 Replies
    • February 3, 2007
    • 02:14 PM
    • 0
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  • Was the cortisol test done in the morning or afternoon. If it's not done right then it'll come out wrong. I have adrenal problems and cortisol blood work would be the best. If the numbers are high you would have Cushings and if it were low it could be addisons or adrenal insuff. Did you have your thyroid tested out.??? You can also have a thyroid problem and the blood work would come out fine. Go to addisons.net and join the group it's a wonderful site. I have dexamethasone shots here at home and they are used to raise cortisol levels and can cause some serious weight gain itself. Why did they inject you with this??? A simple blood test is all they need to do. I would be more persistant. Go to your gyne and get that abdomine checked out. Maybe there's a cyst on your ovary. I'd pursue this a bit more.
    Anonymous 42789 Replies
    • February 3, 2007
    • 04:16 PM
    • 0
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  • Was the cortisol test done in the morning or afternoon. If it's not done right then it'll come out wrong. I have adrenal problems and cortisol blood work would be the best. If the numbers are high you would have Cushings and if it were low it could be addisons or adrenal insuff. Did you have your thyroid tested out.??? You can also have a thyroid problem and the blood work would come out fine. Go to addisons.net and join the group it's a wonderful site. I have dexamethasone shots here at home and they are used to raise cortisol levels and can cause some serious weight gain itself. Why did they inject you with this??? A simple blood test is all they need to do. I would be more persistant. Go to your gyne and get that abdomine checked out. Maybe there's a cyst on your ovary. I'd pursue this a bit more.I took the 1 mg dexamethasone at 11 p.m. and had the blood test at 8:30. I got to the lab at 7:30 but no one could get my veins. They stuck me five times. I had to wait for a girl to come in that was the best so it took almost an hour. The shots, I was refering to cortisone shots for eczema that I recieved five years ago. I wrote the first post above. I also had about five short courses of prednisone over the last five years. Thank You? Raynee
    Anonymous 42789 Replies
    • February 3, 2007
    • 05:01 PM
    • 0
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  • I took the 1 mg dexamethasone at 11 p.m. and had the blood test at 8:30. I got to the lab at 7:30 but no one could get my veins. They stuck me five times. I had to wait for a girl to come in that was the best so it took almost an hour. The shots, I was refering to cortisone shots for eczema that I recieved five years ago. I wrote the first post above. I also had about five short courses of prednisone over the last five years. Thank You? RayneeI meant thank you! not ?
    Anonymous 42789 Replies
    • February 3, 2007
    • 05:02 PM
    • 0
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  • i am going through the same thing -- however i don't think i have cushings -- my test are being run now. i've read your blog -- i was wondering if you had a thiroid test done. or at 36 it could be peri menopause. happens and doctors don't check for it. ten years ago when you had facial paralysis did they check for bells palsy?all of these things you have might be all seperate illness. they might not have anything to do with eachother.so you could have had bells palsy ten years ago, then five years ago started peri meopause. the eczema is normally caused by something your allergic to. the small hump on the back of your neck might not be cushings but just your bodies response to the lipo and then gaining weight. it can just be a fat pocket which they can tell with an ultrasound. just some thoughts -- hope you get it figured out.
    Anonymous 42789 Replies
    • January 13, 2008
    • 05:36 AM
    • 0
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  • You have all the same symptoms as me! I was diagnosed with PCOS almost 10 years ago. It is a very serious sickness that most doctors aren't aware of and do not know how to treat. You need to go to an Endo that knows how to treat PCOS. You should be taking Metformin every day, this will help you. I still have problems, but it helps. The weight, it is very hard to lose and keep off. I was skinny all my life and the became obese in a matter of a year, without changing my diet. Now I am in a constant battle to try and lose the weight. It is a struggle that I am going to win. A friend of mine who also has PCOS recently got lapband surgery. The weight is slowly coming off, much slower then others who had the surgery, but it's coming off. With weight reduction, comes better health for us women who have PCOS. Call around and find a doctor who specializes in PCOS. That is your best hope. They are hard to find. If you have any questions, let me know, and I will give my my email address, and we can talk!
    susan33 3 Replies
    • January 25, 2008
    • 01:49 PM
    • 0
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  • I am 36 year old female. Ten years ago I had problems for three years with severe fatigue, facial paralysis, weakness, and the list goes on. I slowly started getting better after a few years but never got the energy back. Five years ago I broke out with a severe rash, diagnosed with eczema, and I was given a cortisone shot. This helped but the rash became really bad again and three months later got another shot. This shot did not help my rash but I noticed about a week later I started getting tons of hair on my face. It grew after two weeks to about ½ inch or more long and was all the way up to my cheekbones. I got rid of the hair with creams but have been having problems with it ever since. I also some time soon after that starting gaining weight, all upper body and almost all of it in my stomach. I have continued to put on weight over the past five years and I cannot lose a pound. Although I have only put on 15 or 20 pounds to me it feels like a 100. No diet or exercise will take it off. I finally got so bent out of shape about my stomach, I could pass for eight months pregnant, that I had liposuction. It has been about a year now and my stomach looks like I am five months pregnant already. I have dieted the whole time and put the weight back on. My face is enormous but my legs are small. This past nine months I have been diagnosed with severe hypertension, high cholesterol, insulin resistance, polycystic ovary syndrome, osteoarthritis. I also had a mini stroke (they think and was in hospital last year) and have still been having some visual disturbances. I still have the eczema and I also have ocular hypertension and they almost started me on glaucoma drops. My heart races all the time and I have a small hump on the back of my neck. They did check my cortisol levels and they came back fine. It was the dexamethasone suppression test. I took just one pill and the test the next day. Does anyone know how accurate this test is. Should I have the urine test. I have had MRI of brain in hospital which was fine. I also have to see a vascular specialist for circulatory problems and I have a bone density test which showed some bone loss but not significant. I am 36 and falling apart and I am tired all of the time and have muscle weakness, fatigue, headaches, fatigue!!!!!! I feel like I am on an adrenaline rush all day, I wake up like this and it does seem to get better at night but now I am only sleeping about four hours a night five nights a week. The doctor doesn't think I look cushionoid but I have felt horrible for years and it is taking its toll! Any feedback from anyone would help especially if there is anyone who has or had Cushings. I know it is rare but I do in my heart think i have it. I have been sick for so many years and no answers and this cortisol test was my last hope and they just called me about an hour ago and said it was fine. I am crushed!!Hi there:I hope this will help.There is a doctor in Seattle Washington named Bill Ludlam at Swedish Hospital who says there is a thing called cyclical Cushings. Evidently it is a kind of turning on and turning off of the cause of the disease, which is a tumor or tumor cells on the pituitary that turn on and off leaving false negatives for Cushings in their wake.There is also such a thing that you could have only cells on your pituitary that cause Cushings that cannot be picked up on an MRI because they are not a tumor. There is also a special test that they can perform to spotlight cells if they exist.Cyclical Cushings, if you have it, takes persistance and commitment to diagnose.If your insurance allows, I would recommend the folks at Swedish. Swedish is world renowned.Good Luck!!!Carole
    Anonymous 42789 Replies Flag this Response
  • Hi honSorry you are suffering, could you also get tested for Throid antibodies? You could also be suffering from another autoimmune disorder.Also as was mentioned could be anything on the HPA axis.hope you find an answerlotsa luvWhittersx
    whitbywitchuk 6 Replies Flag this Response
  • I had dex test I went to my gp at ten past ten where they took bloods then i was given the tablets and told to take one three times a day for two days. I went back two days later and it came back at under 50?I am convinced i have cushings....leaking nipple silvery skin thinning hair losss of periods chronic and speedy weight gain and mental disturbances odema swelling facial changes memory etc etc. Tons of symptoms!They just keep offering anti depressents????I gave up cos the test came back negative was it done right?
    sweetybandit_1 4 Replies
    • August 15, 2008
    • 11:46 AM
    • 0
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  • Oh and my thyroid was fine and i also have chronic eye pain like pressure they mri my eyes but not sure if they checked for anything else. There is no obvious sign for eye problem so i was discharged and am in serious pain everyday but the side of my face with the painfull eye is swollen and the pain can sometimes go to my temporal lobe.
    sweetybandit_1 4 Replies
    • August 15, 2008
    • 11:48 AM
    • 0
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  • There is a really good website called cushings help and support type it into your search engine and just see how hard it is to get a diagnosis you are not the only one struggling it helped me a lot xxx
    sweetybandit_1 4 Replies
    • August 15, 2008
    • 11:50 AM
    • 0
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