Discussions By Condition: Endocrine conditions

I think I have Cushings, can you help?

Posted In: Endocrine conditions 20 Replies
  • Posted By: bettyboobop
  • March 17, 2007
  • 11:57 AM

I am currently a medical mystery. My rheumatologist thinks I have Lupus, but I am not convinced and was searching back through all my medical records and come across some from 10yrs ago regarding Cushings.

Back then I was only 22 and was sent to an Endo because of abnormal hormones, high BP, cystic acne and facial hair. they thought I may have PCOS.
they did the 24hour cortisol test that came back Positive at 568, which I think is high, then I did a 1mg Dex test overnight, which I can find the actual results for but it is hand written on my notes as "apparently normal"

Over the last 9 years I have gained 24kgs (about 50 pounds??) have a buffalo hump which I have had for a number of years now and I look about 6 months pregnant, my face is very puffy and red, and I do have some arthritis and some degeneration in my spine that no-one can explain.

I am completely fatigued, I have developed cognitive problems, continual Tinnitus, my Blood pressure is still high (on meds), I have bad reflux, loads of stretchmarks, hirsutism, my hair has thinned dramatically and I had diabetes while pregnant and my doc says its only a matter of time before I get it because I am always borderline with my glucose.
Oh, and I constantly have liver pain and abnormal liver enzymes.
Double oh, also I have had dizzy spells since I was 16, my doc thinks they are called nystagmus.

My rheumy has me on Prednisone for my joint pain and fatigue, but honestly I feel worse, kind of out of my mind and on edge.

So when I came across all my old tests that at the time said it didn't look like I had Cushings, now I wonder if it was just begining all those years ago.

it kind freaks me out, I have only been on Prednisone for 5 days, but I have had all the physical symptoms of cushings for years and don't want the prednisone to make me worse.

I can't find anything about taking Prednisone with undiagnosed Cushings.

I am kind of too scared to bring this up with my current doctor since I think she already thinks I am a hypo.

Thanks if you made it this far,

Hugs,
Bettyboobop

Reply Flag this Discussion

20 Replies:

  • If your weight is around your middle it would be yet another sign of cushings. The diabetese can also be another sign and most of what else you wrote there. I'd for sure make your doctor do a 24hr cortisol test to make sure that it isnt cushings. Also considering over 90% of cushings is first misdiagnosed as something else would be another reason to be tested :)
    Anonymous 42,789 Replies Flag this Response
  • I would get a second opinion. This way you dont have to involve your current doctor at all. I would never ignore a gut feeling, no matter what doctor thougth I was nuts!Dont give up. Get it looked into.
    Anonymous 42,789 Replies Flag this Response
  • If the steroids are making you worse, please let your doc know that you want to taper off of them - you need to do this slowly and with medical supervision. What other medications are you taking? Are you on birth control? Depo shots or other hormones?DOM
    acuann 3,080 Replies Flag this Response
  • Thanks for your replies,The other meds I am taking are Plaquenil, and Accuretic and Losec.I am definately going to pursue this. I just "know" something is wrong.Hugs,Betty
    bettyboobop 2 Replies Flag this Response
  • What is losec? Couldn't find any info on this. Are you on birth control? Specifically, any hormonal patch/pill/IUD/IV? I suggest you go to www.drugs.com and click on their Drug Interactions Checker. You can easily type in ALL of the current meds you are taking, and any you were taking the past few weeks, then click on the checker and it will come up with drug interactions. It is VERY thorough, and don't expect your docs to do this for you - they just won't take the time. I am not necessarily saying that your meds are causing all your problems, but just to be an informed consumer. It's possible that your meds could be a contributing factor, and it is the last thing most docs check on. Best wishesDOM
    acuann 3,080 Replies Flag this Response
  • It could be periodic Cushings. Even topical steroids can give you the syndrome. Prednisone will make it worse if you have it and it should always be slowly tapered.
    Anonymous 42,789 Replies Flag this Response
  • Would the person who posted about "periodic" Cushings, please go into more detail. My Dr. has never mentioned it but he did say something about my bloodwork fluctuating.
    Anonymous 42,789 Replies Flag this Response
  • Thanks for the new replies,I have thought about Periodic Cushings, my doctor called it Cyclical Cushings, and we are going to look into it. I am currently tapering my Prednisone, but as you know it needs to be done slowly so it is going to take a few weeks.acuann, Losec (Prilosec) is a Proton Pump Inhibitor used to keep acid and reflux down, but all my Cushing's symptoms I have had for a number of years, and I have only been on Losec for a couple of months so I know this is not causing my symptoms.That Drug interaction checker was great though, its very handy on what to keep an eye out for, thanks for that!So for now I just wait until my Prednisone has tapered off, although I have no idea how long I have to wait after I have stopped it till before I can do my 23hour cortisol test.......any ideas?Thanks for the posts, you guys are a wonderful support!Hugs,Betty
    bettyboobop 2 Replies Flag this Response
  • How's your sleep? How's your stress level? You can pick up a copy of Hans Selye's work on stress through Amazon real cheap. He discovered something known a Generalized Adaptation Syndrome. It all about the causes of adrenal woes, including Cushing's. These things are all connected. The increase in cortisol may also create diabetes. You need that too don't you? Docs often like to compartmentalize diagnoses. They have forgotten how to look at the whole, except in high blood pressure and congestive heart failure. Except then, they still don't look at the nutrients that would strengthen these systems. Prednisone will make you gain water, and the side effects are (according to my Nursing drug book) psychotic behavior, insomnia,seizures, heart failure, hypertension, edema, arrythmias, clots, cataracts, glaucoma, GI irritation, pancreatitis, nausea, vomiting, carbohydrate intolerance, hypercholesterolemia (high cholesterol), high blood sugar (like bordering on diabetes), hypokalemia, (leaching out of you important electrolyte potassium, same for calcium, osteoporosis, (probably from loss of the last one), muscle weakness, hirsutism, delayed wound healing, acne, cushingoid state, acute adrenal insufficiency, susceptability to infections. There are a lot of diabetic symptoms in there I want you to note. The literature says that uses are for severe inflammation and immunosuppression and acute exacerbations of multiple sclerosis. Docs use it a lot however for "off label" use. They commonly use it long term on asthma patients. Despite the literature recommending it to be used short term. It's really a synthetic form or cortisol. If you already show signs of Cushings, prednisone will only worsen it, you probably recognized some of your symptoms in the list. Here's an article on sleep and the effect lack of it has on your adrenalshttp://www.mercola.com/2000/sep/3/sleep_hormones.htm melatonin is a natural hormone we normally make, but the pineal gland can be damaged through alcohol abuse or you mother's alcohol abuse (if you were in there at the time and remember it only takes one binge one time during the pregnancy to do profound damage. For a woman, a binge is two drinks. That is one ounce of absolute alcohol-10 ounces of wine or 24 ounces of beer. )It can also be damaged via mineral deficiency, and yes high cortisol levels. Here's an article on how excercise affects cortisolhttp://www.mercola.com/2005/oct/8/timing_is_everything_or_when_to_exercise_to_maximize_your_results.htmHere's an article on the whole of adrenal function, really brings things together: http://www.mercola.com/2000/aug/27/adrenals.htmAnd here's an article showing how corticosteroid DRUGS are related to cortisol and how the whole thing got so screwed up. http://www.mercola.com/2001/jul/11/aids2.htmMercola is a great site for research. He was a conventional doc who was dissatisfied with the results he was getting in his patients and decided to expand his knowledge. There aren't too many like him. He is a treasure. This site has a library full of free information. He takes a lot of articles from JAMA and New England JOM and posts things we would not otherwise see, (because it costs hundreds of dollars to join and have the right to read these).
    Anonymous 42,789 Replies Flag this Response
  • Who here missed the part where her 24 hour cortisol came back at a 520?Depending on the method of analysis, that is anywhere from 5-20 times higher then normal thresholds.Other then the heartburn, do you experience any lower intestinal symptoms such as cramping, loose stools, etc?Carcinoid tumors can cause Cushing's Disease; It could be small cell lung cancer, oat cell, or benign tumor(s) in your small intestinal tract, appendix, etc. which would cause IBS (irritable bowel syndrome) like symptoms, Carcinoid Syndrome (new set of symptoms, similiar to what I described above) or even Paraneoplastic Syndrome if there is malignant nature.With a 24 hour urine of that nature, I would have been alarmed.I'd follow with the suppresion test, MRI of the pituitary and adrenals, glucose tolerance (yes, Cushing's causes non-specific high blood sugars) saliva Cortisol, and 5-HIAA 24 hour urine.
    Anonymous 42,789 Replies Flag this Response
  • I am currently a medical mystery. My rheumatologist thinks I have Lupus, but I am not convinced and was searching back through all my medical records and come across some from 10yrs ago regarding Cushings. Back then I was only 22 and was sent to an Endo because of abnormal hormones, high BP, cystic acne and facial hair. they thought I may have PCOS.they did the 24hour cortisol test that came back Positive at 568, which I think is high, then I did a 1mg Dex test overnight, which I can find the actual results for but it is hand written on my notes as "apparently normal" Over the last 9 years I have gained 24kgs (about 50 pounds??) have a buffalo hump which I have had for a number of years now and I look about 6 months pregnant, my face is very puffy and red, and I do have some arthritis and some degeneration in my spine that no-one can explain. I am completely fatigued, I have developed cognitive problems, continual Tinnitus, my Blood pressure is still high (on meds), I have bad reflux, loads of stretchmarks, hirsutism, my hair has thinned dramatically and I had diabetes while pregnant and my doc says its only a matter of time before I get it because I am always borderline with my glucose.Oh, and I constantly have liver pain and abnormal liver enzymes.Double oh, also I have had dizzy spells since I was 16, my doc thinks they are called nystagmus. My rheumy has me on Prednisone for my joint pain and fatigue, but honestly I feel worse, kind of out of my mind and on edge. So when I came across all my old tests that at the time said it didn't look like I had Cushings, now I wonder if it was just begining all those years ago. it kind freaks me out, I have only been on Prednisone for 5 days, but I have had all the physical symptoms of cushings for years and don't want the prednisone to make me worse. I can't find anything about taking Prednisone with undiagnosed Cushings. I am kind of too scared to bring this up with my current doctor since I think she already thinks I am a hypo. Thanks if you made it this far, Hugs,Bettyboobop Hi; I just read this and thought I would share with you a website that I found to be very informative about cushings. It's www.cushings-help.com There is alot of info about cushings there and a full list of symptoms. Your symptoms kinda sound like this and there are people who have cushings there who I'm sure would be glad to help you find the answers to your questions. Thoughts & Prayers~God Bless!:)
    BrideToBe78 7 Replies Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • dont give up ,espcally when your gut is telling you to pursue something. im not a doctor but allot of the symptoms you mentioned sounded like a thyroid codnition (hypothyroid or hyperthyroid)that has mayebe gone untreated. good luck
    Anonymous 42,789 Replies
    • August 27, 2007
    • 02:54 AM
    • 0
    Flag this Response
  • Hello "I think..."I, too, have been diagnosed with lupus. My aunt also had it. I say had. Because she has passed away now. She was only 49 years old. Luckily for me, by the time I was diagnosed, she had already experienced the fear and pain I was going through. You see, I was terrified because I had watched her have surgery after surgery. She had a kidney transplant, her stomach removed, Her hip replaced, and a pace maker... To name a few. The advice that she gave me was to stop taking the meds. She said that as long as I could stand the pain, I didn't need them. She said that it wasn't the lupus that deteiriated her body. She believes it was the meds. So, I quit most of my meds. I still take topamax... I don't like seizures.. I lost 65 lbs. Started doing yoga to stretch and relax my joints. I feel great. Sure some days I still need to rest. Oh well. The next day, I live like it's my last.We, my ex-husband and I, took my very small daughter to and endo at the advice of her ped. This person took a few tests, looked at my family... who all look like you describe your self... and decided my daughter and probably some of my family member "suffer" from cushings. Well, I decided, my daughter nor any of my family members look like they are suffering to me. She is healthy, happy, well-adjusted and self-confident. Food for thought
    Anonymous 42,789 Replies Flag this Response
  • Hi; I just read this and thought I would share with you a website that I found to be very informative about cushings. It's www.cushings-help.com There is alot of info about cushings there and a full list of symptoms. Your symptoms kinda sound like this and there are people who have cushings there who I'm sure would be glad to help you find the answers to your questions. Thoughts & Prayers~God Bless!:)That's an index site to ANIMAL cushings! Instead go to NIH site and put in Cushings to get info. Or, the Johns Hopkins endocrin site.
    Anonymous 42,789 Replies Flag this Response
  • Most people with cushingoid features done really have that disease, they have physiologic elevations of cortisol; meaning that this is what happens when the body is stressed--either physically or emotionally. This results from and from insulin resistance, whereby there is a mishandling of ingested glucose by the body. Food is converted to glucose and blood sugar rises. Extra sugar should be removed and placed in the "sugar cabinet" (muscles and some in the liver); once filled glucose is converted into fat. This is limited, however , by a hormone called Leptin which does not normally allow for excess fat storage, the rest gets burned and normal weight is maintained.. Insulin resistance occurs when the key to the fat cabinet won't work ( this "key" is the hormone insulin). The body has a dilema as to what to do with the glucose and converts it into fat and leptin fails to place the same limits on excess storage along with other hormonal adjustments. This is similar to having your gas tank locked when you need to pump gas and putting cans of gasoline in your trunk. No access to the cars engine to be burned to make energy. The same occurs with glucose; as the body's main fuel source skipping the sugar cabinet means cells cannot access glucose for energy production and leads to fatigue and sugar cravings. Insulin resistance is a major cause of obesity, diabetes and a myriad of other health problems.
    Anonymous 42,789 Replies
    • August 23, 2008
    • 08:46 AM
    • 0
    Flag this Response
  • Just a couple of corrections to my posting from yesterday. and :)
    Anonymous 42,789 Replies
    • August 24, 2008
    • 07:18 AM
    • 0
    Flag this Response
  • I think I might also, I was thin and athletic as a younger child. At around 8 I started putting on a little weight. I started menstrating at 9 and had full breasts at 10. I kept putting on weight. My mom took me to the doctor and said i was very physically mature for my age and it was no worry at the time but later in life I could have some issues with it. To my mom this meant early menopause and nothing more. I continued to put on weight. By 6th grade I was 5'7, taller than any other kid in my school and taller than most teachers. My parents thought I would grow to be about 6 foot tall. I was already taller than both of them by at least 3 inches. But I never grew another inch. By the time I started high school I stopped having periods regularly. I was treated for depression, but everyone thought it was brought on by issues at home. I never really saw a doctor for much else except for Athsma that was cause by my step-father smoking at home. When he left so did the athsma. But often I would wake up all threw being a teen and in my early 20's with my eyes swollen shut. The felt as if they had sacks of fluid in them. It would last a couple of days and go away. I always just thought allergies because everyone says allergies make their eyes swell. When I was 21 and a huge binge drinker with all my college aged friends I got Pancreatitis, I stayed in the hospital for 2 weeks while the doctor was trying to find the source and controll it. She said even with my drinking it was not normal but after an ERCP came back clear she said it was most likely from the drinking. Shortly after that I was diagnosed as diabetic. The pains and strange thobbing feeling from my abdomen never stopped. It got worse 3 years later. Exruciating, I was in the ER every other week being loaded up with pain meds and sent home because everyone said it was Gallbladder stones but never fund stones. Finally after living with the pains for 4 years a surgeon removed it. I forgot to say I was diagnosed with PCOS at age 16, but no cysts have ever been found on my ovaries. So I have lived with all the symptoms accepting PCOS as the reason. Here I am 10 months after having the Gallbladder removed having abdominal pains and tightness again. My liver enzymes are slightly elevated and I feel week and tired all of the time. I wake up sweaty at night and have fevers about twice a week, I lay in pain on the couch to tired and week to do anything about it and my fiance is so sick of hearing about it he just shuts me out. My mom now thinks I am a hypochondriac and sometimes calls me munchausen. I never even heard of Cushing's until 2 days ago my friend said she met someone at work (she works at a doctors office) who said she was wrongly dianosed with PCOS for years and found out she had Cushing's and a tumor. My friend researched it and emailed it to me. For a while I have had swollen nodes or bumps on both side of the back of my neck and my nodes in my grod are just a little swollen but hardened. Is anyone else like me with same stuff? Or at least know if the swollen and hard nodes are related?
    Anonymous 42,789 Replies Flag this Response
  • For anyone who thinks they may have Cushing's.....There's nothing but great advice at http://www.cushings-help.com/The best thing you can do is find a GREAT endocrinologist who looks beyond test results and is interested in helping. You can get info on some doctors....endos (and surgeons, if necessary) ... whom patients have gotten the best results from on the cushings-help site. It's worth considering going directly to one of these docs and not wasting too much time with the local docs who aren't giving you answers. Many Cushing's patients end up traveling for good care and, unfortunately (especially these days) end up paying more. I can't stress, as someone with a whole lot of (really bad) personal experience, how absolutely essential it is to get the RIGHT kind of medical attention ASAP. You KNOW that something is wrong, you DESERVE to find out exactly what it is and get the BEST treatments possible. There are no good reasons to wait. Don't let anyone talk you out of finding answers. Don't stop until YOU are satisfied.
    Anonymous 42,789 Replies Flag this Response
  • How's your sleep? How's your stress level? You can pick up a copy of Hans Selye's work on stress through Amazon real cheap. He discovered something known a Generalized Adaptation Syndrome. It all about the causes of adrenal woes, including Cushing's. These things are all connected. The increase in cortisol may also create diabetes. You need that too don't you? Docs often like to compartmentalize diagnoses. They have forgotten how to look at the whole, except in high blood pressure and congestive heart failure. Except then, they still don't look at the nutrients that would strengthen these systems. Prednisone will make you gain water, and the side effects are (according to my Nursing drug book) psychotic behavior, insomnia,seizures, heart failure, hypertension, edema, arrythmias, clots, cataracts, glaucoma, GI irritation, pancreatitis, nausea, vomiting, carbohydrate intolerance, hypercholesterolemia (high cholesterol), high blood sugar (like bordering on diabetes), hypokalemia, (leaching out of you important electrolyte potassium, same for calcium, osteoporosis, (probably from loss of the last one), muscle weakness, hirsutism, delayed wound healing, acne, cushingoid state, acute adrenal insufficiency, susceptability to infections. There are a lot of diabetic symptoms in there I want you to note. The literature says that uses are for severe inflammation and immunosuppression and acute exacerbations of multiple sclerosis. Docs use it a lot however for "off label" use. They commonly use it long term on asthma patients. Despite the literature recommending it to be used short term. It's really a synthetic form or cortisol. If you already show signs of Cushings, prednisone will only worsen it, you probably recognized some of your symptoms in the list. Here's an article on sleep and the effect lack of it has on your adrenalshttp://www.mercola.com/2000/sep/3/sleep_hormones.htm melatonin is a natural hormone we normally make, but the pineal gland can be damaged through alcohol abuse or you mother's alcohol abuse (if you were in there at the time and remember it only takes one binge one time during the pregnancy to do profound damage. For a woman, a binge is two drinks. That is one ounce of absolute alcohol-10 ounces of wine or 24 ounces of beer. )It can also be damaged via mineral deficiency, and yes high cortisol levels. Here's an article on how excercise affects cortisolhttp://www.mercola.com/2005/oct/8/timing_is_everything_or_when_to_exercise_to_maximize_your_results.htmHere's an article on the whole of adrenal function, really brings things together: http://www.mercola.com/2000/aug/27/adrenals.htmAnd here's an article showing how corticosteroid DRUGS are related to cortisol and how the whole thing got so screwed up. http://www.mercola.com/2001/jul/11/aids2.htmMercola is a great site for research. He was a conventional doc who was dissatisfied with the results he was getting in his patients and decided to expand his knowledge. There aren't too many like him. He is a treasure. This site has a library full of free information. He takes a lot of articles from JAMA and New England JOM and posts things we would not otherwise see, (because it costs hundreds of dollars to join and have the right to read these).hi I did have cushing. It was for a doc. that induced it with steroids. so you should look that up
    Anonymous 42,789 Replies
    • December 17, 2009
    • 11:33 AM
    • 0
    Flag this Response
  • I think I might also, I was thin and athletic as a younger child. At around 8 I started putting on a little weight. I started menstrating at 9 and had full breasts at 10. I kept putting on weight. My mom took me to the doctor and said i was very physically mature for my age and it was no worry at the time but later in life I could have some issues with it. To my mom this meant early menopause and nothing more. I continued to put on weight. By 6th grade I was 5'7, taller than any other kid in my school and taller than most teachers. My parents thought I would grow to be about 6 foot tall. I was already taller than both of them by at least 3 inches. But I never grew another inch. By the time I started high school I stopped having periods regularly. I was treated for depression, but everyone thought it was brought on by issues at home. I never really saw a doctor for much else except for Athsma that was cause by my step-father smoking at home. When he left so did the athsma. But often I would wake up all threw being a teen and in my early 20's with my eyes swollen shut. The felt as if they had sacks of fluid in them. It would last a couple of days and go away. I always just thought allergies because everyone says allergies make their eyes swell. When I was 21 and a huge binge drinker with all my college aged friends I got Pancreatitis, I stayed in the hospital for 2 weeks while the doctor was trying to find the source and controll it. She said even with my drinking it was not normal but after an ERCP came back clear she said it was most likely from the drinking. Shortly after that I was diagnosed as diabetic. The pains and strange thobbing feeling from my abdomen never stopped. It got worse 3 years later. Exruciating, I was in the ER every other week being loaded up with pain meds and sent home because everyone said it was Gallbladder stones but never fund stones. Finally after living with the pains for 4 years a surgeon removed it. I forgot to say I was diagnosed with PCOS at age 16, but no cysts have ever been found on my ovaries. So I have lived with all the symptoms accepting PCOS as the reason. Here I am 10 months after having the Gallbladder removed having abdominal pains and tightness again. My liver enzymes are slightly elevated and I feel week and tired all of the time. I wake up sweaty at night and have fevers about twice a week, I lay in pain on the couch to tired and week to do anything about it and my fiance is so sick of hearing about it he just shuts me out. My mom now thinks I am a hypochondriac and sometimes calls me munchausen. I never even heard of Cushing's until 2 days ago my friend said she met someone at work (she works at a doctors office) who said she was wrongly dianosed with PCOS for years and found out she had Cushing's and a tumor. My friend researched it and emailed it to me. For a while I have had swollen nodes or bumps on both side of the back of my neck and my nodes in my grod are just a little swollen but hardened. Is anyone else like me with same stuff? Or at least know if the swollen and hard nodes are related?I know this post is almost a year old, but Crisscrossed you REALLY, REALLY need to see an endocrinologist and get tested for a disease called Late Onset Congenital Adrenal Hyperplasia (LOCAH) also called Non-Classical adrenal hyperplasia. You have ALL the symptoms! PLEASE get checked out! This also gets misdiagnosed as PCOS often.
    Anonymous 42,789 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.
Advertisement

8 Health Dangers of Depression

Unmanaged depression can take a toll on your physical health.

Best Cough & Cold Meds for Kids

Help your child feel better, faster.

What HIV Positive Women Should Know About Sex

You can have sex after an HIV diagnosis.

Food Choices for Diabetes

What, when and how much you eat affects your blood sugar.

6 Exercises for Multiple Sclerosis

Ease your way into these stretching and strengthening moves,

Advertisement