Discussions By Condition: I cannot get a diagnosis.

Every type of specialist for over a year, and "the best" don't even have answers...

Posted In: I cannot get a diagnosis. 19 Replies
  • Posted By: amandalm14
  • March 6, 2008
  • 11:47 AM

Well if anyone here can help, I think I will be the happiest person you have ever known! Lets see, I am almost 24 years old and the problems started in dec of 06. I was on the birth control method known as depo provera for almost four years, and I had decided it was time to give my body a break and go back on the pill. I had been on the pill before, and never had a problem with it except for mood swings. Well it is important to give you some background info on myself so some of this can startle you the way it shocked me. I am the kind of girl who can eat whatever I want and never gain a pound (ya, I never really knew how great I had it until now :mad:). I was a very active person my whole life, but I could still eat 4000 calories a day and never go to the gym and still stay tiny. I was 5' 6 and about 108lbs.
I got on the pill and was on it for about 3 months but during that time from about dec 20 to the end of jan 2007 I gained 30 lbs in 5 weeks!!!!!! I did not change any eating habbits or take any other medication. My doctor (who knew me very well) freaked out about how much weight I gained in such a short period of time. She attributed it to the pill and told me to immediately get off of it and that I should start to loose the weight right away. She thought I had some severe allergic type reaction. Well got off the pill and didn't loose any weight...what I did loose was my period! I stopped getting my period and I just looked swollen. I went three months without a period or any weight loss...We all thought it might have been my thyroid because my grandmother had thyroid cancer and so we assumed I must have been hypo...Not the case. I went to two obgyn who saw no tumors or cists. I attend u.c.l.a and like to think that I am intelligent, so I started to do my own research and thought that maybe I had a pituitary tumor. I saw the top endocrinologist at u.c.l.a and she laughed in my face and told me I needed to diet and exercise. Well seeing as how I ran cross country and track in highschool, I knew ***n well how to diet and exercise, and I dont care who you are NOBODY GAINS 30 LBS IN 5 WEEKS!!! Between that, my constant headaches, sleep disturbances, night sweats, and extreme exhaustion but an inability to sleep, my gyno decided to have me do a mri on my brain and turned out I was right all along. I have a small microadenoma in my pituitary gland.
I was soooo ecstatic to find that out because I thought "ah finally a diagnosis and now I can start treatment". Not the case! I guess I am an anomaly. I show the symptoms and signs of a person with a microadenoma that is producing prolactin. When that is the case they give you a medication and suddenly your tumor shrinks, you loose weight and you get your period back. Well, my tumor isn't producing that and since it is so small every doctor cant imagine it affecting my body so none of them knew what to do. They put me on diet pills (which I have been on for 5 months and haven't lost a thing) and told me they were sorry. I do know that my body has stopped producing estrogen and I have very low levels of LH hormone. I also have osteoperosis at 23 years old due to the fact that my body was not producing estrogen for a long period of time.
As time progressed, my body started to ache more and more. I can barely move sometimes and the best way to explain how I feel would be to say "Imagine living on the third story of an apartment building, now imagine you go on your balcony and jump off and land on concrete, thats how I feel all day every day". Its been over a year and I have been off and on different birth control pills and am now on an estrogen supplement with a progesterone cycle and still no period. I constantly retain ridiculous amounts of water. I have lost sensation in my right arm from the elbow down to the pinki and ring finger. I have a bad case of vertigo that wasnt there a 4 months ago and notice that I have muscles that tense without me doing it (not the same as a cramp because I will eventually realize that my calf is tense and can release it temporarily to find myself making it tight again a few min later). I get stabbing sensations all over my body but more so in my left knee and calf area which is the leg that tends to get tense without my control. I have a HORRIBLE case of reynods that affects my hands and feet almost on a timely nightly basis (around 2 to 3 in the morning). My skin is dry and you can see almost every vein I have even though I am naturally a more tan complexion. My memory is getting worse and worse with short term memory. My stomach has problems but those have been there before this started so I dont think its connected. I have noticed some problems with my kindeys (which might be due to being on diet pills for so long now).
As crazy as this sounds when I lay down for bed, and only then, my face tingles as if it is twitching but only on my cheeks above my lips next to my nose. And last but not least, the past three months in between my shoulder blades I have this insane pain and achiness near my spine from the base of the neck to the middle of my shoulders. I have been to the chiropracter more than once for it, but it doesn't seem to be helping at all. Last but not least, my body temp is always around 97 degrees :(. Been to two gyno's, two endocrinologists, and two nuerologists and nobody has any answers...
I recently just found out my heater was leaking carbon monoxide, but I dont know if that is the cause of all of this or not. Some think I might have fibromyalgia, but that doesn't explain the weight gain and loss of period unless I have two seperate issues. I know all these symptoms sound insane, but the more and more time goes on, the more symptoms I get. I know I am slowly dying which is something nobody can understand unless they are going through something like this. I cant take this for much longer and I am desperate for someone to figure out what the ***l is wrong.

Reply Flag this Discussion

19 Replies:

  • Any chance you can be seen by an endocrinologist who specializes in pituitary adenomas who can perhaps give your case a fresh look? It sounds like you need to get some fresh blood in on your case- even though you've seen the top endocrinologist at your school.One thing to keep in mind, too is that student health clinics aren't always centers of "academic excellence" (even at UC schools)- often the people who work there tend to do so because they like the young, healthy patient population. I know they are sending you out to specialists, but it sounds like it's a matter of getting to someone else who can find a unifying diagnosis...I had a rare neurological disease- consisting primarily of near-daily headaches and fatigue (but with other more subtle neuro symptoms) and was seen by the top "headache specialists" at my school. They suggested psychotherapy and antidepressants for the fatigue and neuro symptoms and essentially laughed me off, too. As it turns out, my 8th neurologist, a subspecialist, diagnosed me with a rare complication of autoimmune thyroiditis called Hashimoto's Encephalopathy. It explained virtually ALL of my symptoms and is treated with a short course of steroids (NOT antidepressants). I had not been diagnosed with the thyroiditis until they found the encephalopathy, but sure enough, my gland was full of tiny nodules on ultrasound.I hope that in the same way, you will find an explanation for your symptoms as well. Maybe you have a syndrome that not too many doctors know about yet, and it's just a matter of finding the one who does. I'm glad I didn't stop at the 7th neurologist. As frustrating as it was going to all these doctors and having many of them treat me like I was nuttier than a jar of Skippy, in the end it was worth getting the answer. There HAS to be an explanation for your symptoms.One thing that might be helpful while you're waiting for the next doctor (who hopefully has the answers) is to try using Pub Med to look up combinations of your symptoms and/or already known diagnosis (pituitary adenoma) and see if anything that fits pops up. WD also has a multiple symptoms checker you can try playing with.We all hope you get a unifying diagnosis soon.Best wishes.
    Anonymous 42789 Replies Flag this Response
  • For goodness sake, your body has been completely ravaged by the depo and birth control pills! Please find an acupuncturist/Chinese herbalist to help get you back on track. Depo is scary, and being on it for 5 years has most likely caused quite a mess with your hormones. Going on and off different birth control pills is putting your hormones on a crazy rollercoaster ride...of course you are on estrogen. This is not going to get you back on track IMO. Please use a NON HORMONAL form of birth control, and find a good acupuncturist to get your periods and estrogen deficiency back on track. If you go to UCLA you should have lots of qualified practitioners to choose from. Acupuncture works, and helps to get the body back in balance. Please also research candida overload. Most allopathic docs don't address this and the antifungal meds are toxic and I don't recommend them. Google candida overload and candida cleanses and find a good cleanse to take. Candida overload is a direct result of birth control use and hormonal therapy. Threelac is a very good treatment for this problem. A good number of your symptoms point to candida. Please please research this! The carbon monoxide issue needs to be resolve immediately - sure hope you get that fixed and keep a detector on hand. When allopathic medicine has no answers, it is time for a more holistic approach. Visit www.acufinder.com to find a practitioner near you. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • If the statute of limitations for malpractice is not up, I would see a lawyer about the first endocrinologist who laughted at you. Yes, get a good detector. Do you rent? You can also sue the owner maybe...horrible neglect...hope you come into balance via natural treatments and with intervention.
    Monsterlove 2921 Replies Flag this Response
  • Why on earth did they put you on diet pills???? I I don't see how they could help you; I do see ways they could make you sicker. Consider going off them. They can mess with your heart and electrolytes, and in many other areas of your body also.http://www.ballbearingsonline.com/feature/nutrition/485/index.htm I think it is very possible many of the symptoms you are having now could be Iatrogenic (doctor caused); and some could be auto-immune. I do think you need to get some new doctors to look at you top to bottom; can you find a good medical school to go to to get a very thorough workup. You do need a fresh look as the Elke posted asap. Info on Depo Provera from askapatient:http://www.askapatient.com/viewrating.asp?drug=12541&name=DEPO-PROVERA You wrote that you couldn't take this much longer.... please get to a new dr and tell them that. I am worried about you. To be safe; I also would suggest they screen you for porphyria as the drugs you have taken can trigger porphyria attacks... you have some of the symptoms of porphyria now so do get screened for it. There are things that you can do to feel better if porphyria triggered by drugs and other triggers including hormones is causing any of your health discomforts.http://www.wrongdiagnosis.com/p/porphyria/symptoms.htmtdwi;) quote=amandalm14;85074]Well if anyone here can help, I think I will be the happiest person you have ever known! Lets see, I am almost 24 years old and the problems started in dec of 06. I was on the birth control method known as depo provera for almost four years, and I had decided it was time to give my body a break and go back on the pill. I had been on the pill before, and never had a problem with it except for mood swings. Well it is important to give you some background info on myself so some of this can startle you the way it shocked me. I am the kind of girl who can eat whatever I want and never gain a pound (ya, I never really knew how great I had it until now :mad:). I was a very active person my whole life, but I could still eat 4000 calories a day and never go to the gym and still stay tiny. I was 5' 6 and about 108lbs. I got on the pill and was on it for about 3 months but during that time from about dec 20 to the end of jan 2007 I gained 30 lbs in 5 weeks!!!!!! I did not change any eating habbits or take any other medication. My doctor (who knew me very well) freaked out about how much weight I gained in such a short period of time. She attributed it to the pill and told me to immediately get off of it and that I should start to loose the weight right away. She thought I had some severe allergic type reaction. Well got off the pill and didn't loose any weight...what I did loose was my period! I stopped getting my period and I just looked swollen. I went three months without a period or any weight loss...We all thought it might have been my thyroid because my grandmother had thyroid cancer and so we assumed I must have been hypo...Not the case. I went to two obgyn who saw no tumors or cists. I attend u.c.l.a and like to think that I am intelligent, so I started to do my own research and thought that maybe I had a pituitary tumor. I saw the top endocrinologist at u.c.l.a and she laughed in my face and told me I needed to diet and exercise. Well seeing as how I ran cross country and track in highschool, I knew ***n well how to diet and exercise, and I dont care who you are NOBODY GAINS 30 LBS IN 5 WEEKS!!! Between that, my constant headaches, sleep disturbances, night sweats, and extreme exhaustion but an inability to sleep, my gyno decided to have me do a mri on my brain and turned out I was right all along. I have a small microadenoma in my pituitary gland. I was soooo ecstatic to find that out because I thought "ah finally a diagnosis and now I can start treatment". Not the case! I guess I am an anomaly. I show the symptoms and signs of a person with a microadenoma that is producing prolactin. When that is the case they give you a medication and suddenly your tumor shrinks, you loose weight and you get your period back. Well, my tumor isn't producing that and since it is so small every doctor cant imagine it affecting my body so none of them knew what to do. They put me on diet pills (which I have been on for 5 months and haven't lost a thing) and told me they were sorry. I do know that my body has stopped producing estrogen and I have very low levels of LH hormone. I also have osteoperosis at 23 years old due to the fact that my body was not producing estrogen for a long period of time.As time progressed, my body started to ache more and more. I can barely move sometimes and the best way to explain how I feel would be to say "Imagine living on the third story of an apartment building, now imagine you go on your balcony and jump off and land on concrete, thats how I feel all day every day". Its been over a year and I have been off and on different birth control pills and am now on an estrogen supplement with a progesterone cycle and still no period. I constantly retain ridiculous amounts of water. I have lost sensation in my right arm from the elbow down to the pinki and ring finger. I have a bad case of vertigo that wasnt there a 4 months ago and notice that I have muscles that tense without me doing it (not the same as a cramp because I will eventually realize that my calf is tense and can release it temporarily to find myself making it tight again a few min later). I get stabbing sensations all over my body but more so in my left knee and calf area which is the leg that tends to get tense without my control. I have a HORRIBLE case of reynods that affects my hands and feet almost on a timely nightly basis (around 2 to 3 in the morning). My skin is dry and you can see almost every vein I have even though I am naturally a more tan complexion. My memory is getting worse and worse with short term memory. My stomach has problems but those have been there before this started so I dont think its connected. I have noticed some problems with my kindeys (which might be due to being on diet pills for so long now). As crazy as this sounds when I lay down for bed, and only then, my face tingles as if it is twitching but only on my cheeks above my lips next to my nose. And last but not least, the past three months in between my shoulder blades I have this insane pain and achiness near my spine from the base of the neck to the middle of my shoulders. I have been to the chiropracter more than once for it, but it doesn't seem to be helping at all. Last but not least, my body temp is always around 97 degrees :(. Been to two gyno's, two endocrinologists, and two nuerologists and nobody has any answers...I recently just found out my heater was leaking carbon monoxide, but I dont know if that is the cause of all of this or not. Some think I might have fibromyalgia, but that doesn't explain the weight gain and loss of period unless I have two seperate issues. I know all these symptoms sound insane, but the more and more time goes on, the more symptoms I get. I know I am slowly dying which is something nobody can understand unless they are going through something like this. I felt like this before I found out I have porphyria along with other health issues, infections and certain drugs triggered porphyria attacks that made me feel so much worse than the original problems. Please get to a new dr asap...... I cant take this for much longer and I am desperate for someone to figure out what the ***l is wrong.
    TaylorDeelwithit 382 Replies Flag this Response
  • Can anybody else say... spam spam spam spam spam!Blaze wants the whole world to join LYMENET.... I think anybody who feels that these postings of cut and paste messages about LYME urging folks to join Lymenet qualify as spam... if anybody out there agrees with me that Blaze is spamming the boards just hit the report posts button and report it as spam. We can fight annoying spam! Join Lymenet. Most likely you triggered dormant Lyme, which can definitely trigger weight gain and even induce early menopause. Lyme put me in menopause at 41, and though my doctor's were fine with that, Lyme treatment reversed it. A negative Lyme means nothing - find an LLMD on Lymenet. Click on "symptoms": http://www.canlyme.com/ When to Suspect Lyme: http://www.angelfire.com/biz/romarkaraoke/whento.htm Lymenet: http://flash.lymenet.org/ubb/ultimatebb.php Post that you need to find a Lyme Literate Medical Doctor and a reliable lab. You will need to be tested for Lyme and all coinfections. My thyroid is also affected (underactive), but I have found this to be caused by overexposure to EMR - my cordless phone, along with area cell phone towers did this to me. The thyroid is a real sucker for radiation, as is the pituitary gland. Electrical Sensitivity & Hypersensitivity: http://www.ei-resource.org/illness-information/related-conditions/electrical-sensitivity-&-hypersensitivity/ Bioinitiative Report: http://www.bioinitiative.org/report/index.htm Google "Mobile Phone Emissions Increase Worm Fertility" and you'll understand why chronic Lyme and microwave sickness are related. Just don't expect your current doctors to diagnose Lyme, if that is indeed what you have - most doctors do not like to challenge CDC guidelines, though that doesn't change the fact that most Lymies improve on abx.
    TaylorDeelwithit 382 Replies Flag this Response
  • Links on Iatrogenic Diseaseshttp://wrongdiagnosis.com/medical/iatrogenic_disease.htmhttp://www.yourmedicaldetective.com/public/335.cfmhttp://www.shirleys-wellness-cafe.com/ama.htmhttp://www.whale.to/a/dean.html Well if anyone here can help, I think I will be the happiest person you have ever known! Lets see, I am almost 24 years old and the problems started in dec of 06. I was on the birth control method known as depo provera for almost four years, and I had decided it was time to give my body a break and go back on the pill. I had been on the pill before, and never had a problem with it except for mood swings. Well it is important to give you some background info on myself so some of this can startle you the way it shocked me. I am the kind of girl who can eat whatever I want and never gain a pound (ya, I never really knew how great I had it until now :mad:). I was a very active person my whole life, but I could still eat 4000 calories a day and never go to the gym and still stay tiny. I was 5' 6 and about 108lbs. I got on the pill and was on it for about 3 months but during that time from about dec 20 to the end of jan 2007 I gained 30 lbs in 5 weeks!!!!!! I did not change any eating habbits or take any other medication. My doctor (who knew me very well) freaked out about how much weight I gained in such a short period of time. She attributed it to the pill and told me to immediately get off of it and that I should start to loose the weight right away. She thought I had some severe allergic type reaction. Well got off the pill and didn't loose any weight...what I did loose was my period! I stopped getting my period and I just looked swollen. I went three months without a period or any weight loss...We all thought it might have been my thyroid because my grandmother had thyroid cancer and so we assumed I must have been hypo...Not the case. I went to two obgyn who saw no tumors or cists. I attend u.c.l.a and like to think that I am intelligent, so I started to do my own research and thought that maybe I had a pituitary tumor. I saw the top endocrinologist at u.c.l.a and she laughed in my face and told me I needed to diet and exercise. Well seeing as how I ran cross country and track in highschool, I knew ***n well how to diet and exercise, and I dont care who you are NOBODY GAINS 30 LBS IN 5 WEEKS!!! Between that, my constant headaches, sleep disturbances, night sweats, and extreme exhaustion but an inability to sleep, my gyno decided to have me do a mri on my brain and turned out I was right all along. I have a small microadenoma in my pituitary gland. I was soooo ecstatic to find that out because I thought "ah finally a diagnosis and now I can start treatment". Not the case! I guess I am an anomaly. I show the symptoms and signs of a person with a microadenoma that is producing prolactin. When that is the case they give you a medication and suddenly your tumor shrinks, you loose weight and you get your period back. Well, my tumor isn't producing that and since it is so small every doctor cant imagine it affecting my body so none of them knew what to do. They put me on diet pills (which I have been on for 5 months and haven't lost a thing) and told me they were sorry. I do know that my body has stopped producing estrogen and I have very low levels of LH hormone. I also have osteoperosis at 23 years old due to the fact that my body was not producing estrogen for a long period of time.As time progressed, my body started to ache more and more. I can barely move sometimes and the best way to explain how I feel would be to say "Imagine living on the third story of an apartment building, now imagine you go on your balcony and jump off and land on concrete, thats how I feel all day every day". Its been over a year and I have been off and on different birth control pills and am now on an estrogen supplement with a progesterone cycle and still no period. I constantly retain ridiculous amounts of water. I have lost sensation in my right arm from the elbow down to the pinki and ring finger. I have a bad case of vertigo that wasnt there a 4 months ago and notice that I have muscles that tense without me doing it (not the same as a cramp because I will eventually realize that my calf is tense and can release it temporarily to find myself making it tight again a few min later). I get stabbing sensations all over my body but more so in my left knee and calf area which is the leg that tends to get tense without my control. I have a HORRIBLE case of reynods that affects my hands and feet almost on a timely nightly basis (around 2 to 3 in the morning). My skin is dry and you can see almost every vein I have even though I am naturally a more tan complexion. My memory is getting worse and worse with short term memory. My stomach has problems but those have been there before this started so I dont think its connected. I have noticed some problems with my kindeys (which might be due to being on diet pills for so long now). As crazy as this sounds when I lay down for bed, and only then, my face tingles as if it is twitching but only on my cheeks above my lips next to my nose. And last but not least, the past three months in between my shoulder blades I have this insane pain and achiness near my spine from the base of the neck to the middle of my shoulders. I have been to the chiropracter more than once for it, but it doesn't seem to be helping at all. Last but not least, my body temp is always around 97 degrees :(. Been to two gyno's, two endocrinologists, and two nuerologists and nobody has any answers...I recently just found out my heater was leaking carbon monoxide, but I dont know if that is the cause of all of this or not. Some think I might have fibromyalgia, but that doesn't explain the weight gain and loss of period unless I have two seperate issues. I know all these symptoms sound insane, but the more and more time goes on, the more symptoms I get. I know I am slowly dying which is something nobody can understand unless they are going through something like this. I cant take this for much longer and I am desperate for someone to figure out what the ***l is wrong.
    TaylorDeelwithit 382 Replies Flag this Response
  • my gyno decided to have me do a mri on my brain and turned out I was right all along. I have a small microadenoma in my pituitary gland. No amount of diet pills or any other treatment is going to turn your health around if you have an adenoma in your pituitary gland. You need to have that removed, period.I belong to a forum for thyroid disease and one person talked about their 10 year struggle with doctors treating their failing thyroid. The person kept asking if maybe it was a pituitary problem and got shined on by all the doctors. Finally, a new doctor listened and they discovered the adenoma. After it was removed, all their problems disappeared.Your problems definitely sound like thyroid problems which they would because of your pituitary gland having an adenoma.Keep searching for a doctor who will listen. There is someone out there.It took me two years to get treated for a serious medical problem and thirty years to get treated for thyroid disease. Keep squeaking that wheel and someone will listen.Good luck.
    Anonymous 42789 Replies Flag this Response
  • I had a pituitary tumor and it took me years to get treatment. I had Cushing's Disease, and it sounds like this could also possibly be your problem. My tests were negative at first. Later, I found out about cyclical Cushing's and it all made sense. One thing that struck me was that you said you sometimes hurt all over - that is classic for cyclical Cushing's. I was like that, too, but fibromyalgia didn't fit. I live in Michigan and actually traveled to California to see an endo who specializes in Cushing's and thyroid disorders. So you absolutely need to keep looking for a doctor who will help you. Oh yeah - some doctors don't "believe" in cyclical Cushing's, but there is a lot of research out there that confirms that it exists. I hope you will pursue this. You have the adenoma, you have the symptoms. You just need to find the doctor who knows how to test you properly. The testing process for Cushing's is long and arduous, so be prepared!
    mertoo 6 Replies Flag this Response
  • First off, let me tell you that I cannot Help (so sorry), BUT I would like to THANK YOU for posting this because this is exactly what is happening to me! I am 5'3" and have been basically 98 pounds soaking wet. All that has happened to you is happening to me still. I just now had to go to extreme measures and threaten suicide (would not do it) to get a referral to and endo and have my insurance pay for it. Have that appointment in about two weeks. Nobody has listened to me and this has been going on for about one year and three months. I am to a point of crazy. Thank you for sharing your story and thank you all for posting comments. I will be printing all of this and taking it with me as ammunition. Finally I may have people to back me up against the doctors that just do not want to believe that the patient could be right. Please keep me posted of what is happening. I really would love to know. I have been watching this forum for a long time and at last, love it and may be able to breathe a sigh of relief. Thanks again everyone for this!!! Jenny
    ashea099 1 Replies Flag this Response
  • Some meds, especially steroids, can cause Cushings. DOM
    acuann 3080 Replies Flag this Response
  • Hmm well some docs might jump on pituitary and thyroid because of the weight but you should really research into cushings and polycystic ovarian syndrome. I have insulin resistant pcos and I can either gain or lose 20 lbs any given month without a change in my diet or exercise plan. Its frustrating. I developed all my symptoms after being on the depo shot for a year. In one year I went from being a size 3 to a size 16... no joke... just from hormonal inbalances. Its easy for weight to go on, not so easy for it to go off. I've gone up to 11 months before without a menstrual cycle. It is evil. Half the women with pcos were on depo prior to developing it. I know there is an answer out there for you. I hope you find the doctor that finds the right answer for you. Hang in there.
    nikilotta7 43 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?

  • Check out the message boards at www.cushings-help.com to find out more about Cushing's. It's a very active and very helpful community with lots of knowledgeable people to help you figure things out. Also, there are cases of women who've been diagnosed with Cushing's after going on Depo, nikilotta, so maybe you should check into that. Cushing's is supposed to be ruled out before you are diagnosed with PCOS. They do have many similarities, but a good doctor will be able to determine if it's one or the other.
    mertoo 6 Replies Flag this Response
  • Check out the message boards at www.cushings-help.com to find out more about Cushing's. It's a very active and very helpful community with lots of knowledgeable people to help you figure things out. Also, there are cases of women who've been diagnosed with Cushing's after going on Depo, nikilotta, so maybe you should check into that. Cushing's is supposed to be ruled out before you are diagnosed with PCOS. They do have many similarities, but a good doctor will be able to determine if it's one or the other. I have been tested and it came back inconconclusive :-s weird right? Meanwhile my ovaries are chuck full of cysts, I have about 90 percent of the pcos symptoms however I do have the "buffalo hump" which made me inquire about cushings in the first place since I do have problems taking steriods. I will have to check out that community :-) Thanks for sharing. I had no idea that there was a correlation to depo and cushings as well. err it really is evil! :-)
    nikilotta7 43 Replies Flag this Response
  • I have been tested and it came back inconconclusive :-s weird right? Meanwhile my ovaries are chuck full of cysts, I have about 90 percent of the pcos symptoms however I do have the "buffalo hump" which made me inquire about cushings in the first place since I do have problems taking steriods. I will have to check out that community :-) Thanks for sharing. I had no idea that there was a correlation to depo and cushings as well. err it really is evil! :-) Inconclusive?? PCOS is diagnosable by the "ring of pearl affect" (the egg folicles (cysts) mature many at once, instead of just one per mth.. leaving many of these in the ovary).... and then a hormone test will vertify if it is just polycystic ovaries?...or polycystic ovulation syndrome (PCOS)?. PCOS can cause one to stack on the weight. I have PCOS and stack it on very easily and it's very hard to loose. What i found out about it is that sometimes the hormones may be in the normal ranges but the ratios with it may actually be reversed.. and if the doctor isnt a specialist who knows what ratios the hormones are meant to be in.. he/she may miss the abnormal ratio results and hence may just diagnose Polycystic ovaries instead of PCOS. Seeing you have cysts in your ovaries, you need to get your doctor to send you to a specialist who really knows about PCOS to get this issue ruled out or not. (It's important to know if you have it as it puts you at a high risk for many things eg diabetes).
    taniaaust1 2267 Replies Flag this Response
  • Actually, there is no specific test that will prove PCOS. It is mainly a diagnosis of exclusion. I've known way too many women who've been told they have PCOS, only to find out that they really have been suffering from Cushing's for years. Often these women are treated for PCOS and end up losing their chance to have children because they should have been treated for Cushing's instead. In my case, I was told PCOS when I didn't even have ovaries. The doctor told me that "doesn't matter!". If I hadn't read everything I could about it, I would probably have believed her! The "string of pearls" is present in up to 25% of women who do not have PCOS, and is not diagnostic.
    mertoo 6 Replies Flag this Response
  • My test results were indicated pcos but were "inconclusive" for cushings. I have actually been to a endrocinologist and a reproductive endriconologist in the past in the hopes of a having a baby. Unfortunately with so many other health problems arising with me lately, I figure its best to stop and regroup. Once I know what all we are dealing with I will make my decision to see if we should try again :-(
    nikilotta7 43 Replies Flag this Response
  • Actually, there is no specific test that will prove PCOS. It is mainly a diagnosis of exclusion. I've known way too many women who've been told they have PCOS, only to find out that they really have been suffering from Cushing's for years. Often these women are treated for PCOS and end up losing their chance to have children because they should have been treated for Cushing's instead. In my case, I was told PCOS when I didn't even have ovaries. The doctor told me that "doesn't matter!". If I hadn't read everything I could about it, I would probably have believed her! The "string of pearls" is present in up to 25% of women who do not have PCOS, and is not diagnostic. nods yeah.. not all with "string of pearls" have PCOS.. but it is a sign used TO HELP vertify PCOS so something which is looked for... PCOS does involve more than just the ovaries.. so one could have the ovaries removed but still have PCOS (as it affects other body mechanisms too). Mertoo.. im curious how you ended up getting misdiagnosed? Did you doctor also do all the recommended hormone tests? My own doctor referred me to a specialist to get a diagnoses and used my hormone test results to back up the ovary ultrasound results.
    taniaaust1 2267 Replies Flag this Response
  • Have you checked for another ACTH producing tumor elsewherein the body Ectopic ACTH Syndrome.http://pituitary.mgh.harvard.edu/cushings.htm
    TerryG 120 Replies Flag this Response
  • I was misdiagnosed by a doctor who looked at me and told me it couldn't be Cushing's since I didn't look like I had Cushing's. She didn't examine me or do any testing. She did look over some labs and said I had PCOS, but then said my low triglycerides didn't fit the diagnosis. Since that time, I've met many people who didn't "look" Cushingoid but have had proven Cushing's. In early stages, people don't necessarily look the part, but if it goes on for years then most will. Cushing's can be caused by a pit tumor, an adrenal tumor, an ectopic source or it can be steroid-induced. Research is ongoing and now there is food-induced Cushing's being looked at as well. I had a pituitary tumor.
    mertoo 6 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.