Discussions By Condition: I cannot get a diagnosis.

sweating in PA- PHEOCHROMOCYTOMA

Posted In: I cannot get a diagnosis. 20 Replies
  • Posted By: miserableMOE
  • January 17, 2007
  • 04:48 PM

Just by dumb luck I found this website. I am losing patience with my Doctors and feel that the loony bin is right around the corner for me. Maybe somebody can give me some insight.
I am a 34 yr old white female. I have been suffering from headaches for sometime now. Have 1 everyday. In March 2006, I had my 1st migraine. (how fun are they?) Had about 9 attacks in 2006. Around the same time, I began what I believed to be hot flashes. Dr. told me may be start of the change...at 34? OK..whatever. Then I talk to people and they tell me that hot flashes are like 10 seconds to 10 minutes. Well, my flashes are what I now consider "episodes", last 45 minutes to 1 1/2 hour a couple times a day. And before I gained 20 lbs in 2006 (another problem) I was always 115 lbs and freezing always. I have had kidney disease my whole life and had some massive infection in Oct 2006. Lasted about 2 weeks. At that time Dr. took blood. Got the results back and my NOROEPINEPHRIN level was 600 !! Supposed to be 0-399 ! Was then told about PHEOCHROMCYTOMA! A tumor of the adrenal gland. My wonderful insurance company will not pay for a PET scan. Now trying to get me to have a CT. Waiting for INS CO again.... Does anybody have or know somebody that has this disease? I am scared to death. Most sites say that the tumors are about 10 % cancer BUT my mother had cancer at 55 and passed away. They never determined her primary site but guess where she had a tumor?...on her adrenal gland. I am so exhausted all the time and I have no more tears to cry. My energy level is at a constant 0. PLEASE HELP ME :(

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  • Wow, just like you, I have hot flashes constantly, only I am 28. My doctors are giving me the run around have been for about 2 years. My high blood pressure gpt misdiagnosed. I looked up high blood pressure one day, and found this pheocromocytoma. So, I took the 24 hour utine test. Tested postive. So they sent me for a cat scan. Well wouldnt ya know, theyu didnt see a tumor, so now they really dont know what to do with me, I am sweating, severe headaches, rapis weight loss, and sometimes gain, watery diraeea, you name it, the symptoms are there. Withuot my bp medicine, it was running about 180/112. AT 28? Ciome on. So, now they dont know what to do. I feel lost. My grandmother ios dying of cancer, nad my grandfather on other side just died of cancer. ALl of there siblings have cancer. What should I do/ Im glad i am not alone
    Anonymous 42789 Replies
    • February 11, 2008
    • 05:25 AM
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  • First of all, let me tell you how sorry I am that you are going through the cancer thing. I did it with my mother when she was 56yrs old and then both of my best friend's parents. They both had brain cancer at the same time!!! How horrible. So right there, is a BIG huge stresser in life.Now you say that your urine test came back positive. Have they tested your blood? Ask for your CAtacholomines (sp?) to be tested. I was a little taken back that you had replied as I have not been on this site in about 6 months. Been to endocrinologists, Primary DR. (weekly for a while), ENT, neurosurgeon . My levels in blood keep getting higher. I am now in the 900's should be 0-399. Had CAT scans of kidneys, adrenals, neck then MRI's My PCP has requested a PET scan 4 times but my insurance CO. (idiots) will not cover it.All in all, I still and the Dr's still do not know what is wrong. Levels keep getting higher though. Tired as ***l all the time, weight loss, then gain, then can lose 8 lbs in a week!Going in for tonsillectomy tomorrow. Another thing to deal with!So, although I really cannot offer advice to you, I do feel for you. At 35 yrs old, I feel like I am 70 !!!!! So, I wish you luck with yourself and your grandmother! And if you feel you have any questions, know I am here! Sometimes it means everything to someone who has been there!Take Care,Maureen
    miserableMOE 52 Replies
    • February 11, 2008
    • 10:57 PM
    • 0
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  • I'm sorry you're going through this.Did they do a clonidine suppression test at all? They may have skipped this if your values are high enough, and they sound pretty high.I hope your insurance oks the CT scan and they can find what's wrong. I'd make sure your doctor knows about your mom, so he can include that family history in case it helps move the insurance stuff along.This is rare, and i wouldn't worry about it just yet (first they need to find the pheo, and they aren't always on the adrenals so may be hard to see), but pheos can occur as part of MEN type IIA or IIB. You might want to google these at some point, but keep in mind that they are rare.Again, sorry you're going through this and with the insurance too.I hope you get more solid answers soon.Best Wishes.
    Anonymous 42789 Replies
    • February 12, 2008
    • 08:01 AM
    • 0
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  • Wow, I just happened upon this conversation by accident, too. We should all really get together!
    Anonymous 42789 Replies
    • February 19, 2008
    • 03:18 PM
    • 0
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  • Wow, I entered this site by accident. We really should all get together.I do not have a serious history of cancer in my family and I am sorry for your losses. It must add to the anxiety a great deal.I have spelled many things wrong, sorry, but too tired for spell check! Can't find it anyway!I have been "unwell" since 2004 when I suffered congestive heart failure 6 days after my third was born. Cause never determined.All sorts of crazy stuff since then, but have become quite ill since July, gets worse every month. Usually, in the hospital once a month so they can tell me there is nothing wrong. Last time it was for such severe night sweats, or rather sleeping sweats for three days I had to be walked to the bathroom.I've lost 30 pounds over the past year, but seem to be holding steady now. Crazy, eradic blood pressure. Very high 70% of the time, then drops low fast and stays there for a bit. Same with heart rate.I have flashing, where my ears or neck or cheeks get hot and turn bright red.I first realized I was going down hill when I would wake up stricken with confusion, brain fog, then migrain that seemed to be happening about the same time every month, but then I just starting feeling that way more often. Began having horrible episodes, shaking, unable to speak, sometimes vomiting. Can't move can't talk can't speak, horrible. usually when I push myself when I am having a bad day.That is the other thing, I will be so sick for a couple of weeks, sometimes falling into a sleeping fog for 2 or three days. Then one day I'll, wake up and feel totally normal for a few days.Anyway, I had the 24 hour urin test last Thursday and I am waiting for result. I walked into the Doctors with a BP of 175/110.I have had every possible test, can't find a tumor, blood work is fine, sometimes anemic, sometimes not. Serotonin blood fine.I look horrible, my eyes have dark, purple rings around them, and my skin looks like chalk.
    rose24 4 Replies
    • February 19, 2008
    • 03:43 PM
    • 0
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  • How did you identify these allergies? What kind of doctor? Just an allergist?
    rose24 4 Replies
    • February 19, 2008
    • 03:46 PM
    • 0
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  • Sorry for all of these posts. What emr sickness?Also, I am 38 and I can painfully relate to all of you. It is so hard and so frustrating, It is bringing me to tears.For a while, they told me I was basically crazy and put me on a ton of psych meds. Then they said, it must be the meds and I am now finally off of them. I have more "fun" and obscure symptoms, but I don't want to bore everyone. Still, maybe it will be that one weird thing, that clicks.
    rose24 4 Replies
    • February 19, 2008
    • 03:52 PM
    • 0
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  • First, I support those that mentioned allergies and environment (Blaze).And let me be the second or so, to say sorry for your pain. I know you all are really struggling with these new problems in your lives. My first and foremost thoughts are that the respiratory and endocrine systems are exhibiting symptoms throughout your body with the onset of age, environment and diet, to name the major part. With that said, I strongly consider researching new diets and your allergic reactions. Yes, I read throughout and I know that you are struggling with this but, my belief you just have not hit the nail on the head yet. Neither have I; concerning diets and allergies: I will be continuing my research on this to help you better hopefully soon:confused:. By the way, I am not a fan of doctors or prescription drugs. However, at least you can go to them and get tests done to give you idea of what’s going on. Not saying you shouldn't go to them, only trying to give you an idea of who I am :)
    Undeleted1 28 Replies
    • February 20, 2008
    • 01:43 AM
    • 0
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  • Rose24, I was wondering if anyone has checked you for Grave's disease yet? Your symptoms could be from hyperthyroidism. Also, you can get hyperthyroid at the beginning of, and intermittently during, Hashimoto's Thyroiditis (which eventually leads to hypothyroidism). The way to rule these conditions out for sure is to check thyroid antibodies: thyroglobulin and thyroperoxidase for Hashimoto's and TSH stimulating and inhibiting for Grave's.Maybe they have already checked for this.When you mentioned the brain fog, migraines, speech problems, somnolence, it made me wonder if perhaps you might have a complication of these disorders called Hashimoto's Encephalopathy. Most doctors don't know about it and it's diagnosed by antibodies (many people have normal hormone levels).Not sure if this will help, but I thought I'd throw it out there.(sorry to hi-jack your post, MiserableMOE... please update us on how you're doing and how the insurance is going along... we've all been thinking about you!)
    Anonymous 42789 Replies
    • February 20, 2008
    • 02:16 AM
    • 0
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  • MiserableMoe, I am also sorry to have hijacked your thread, but we're all in this together right?I have had my thyroid checked. I have not done the lyme thing, though I have thought about it. I seem to remember there was something that didn't fit, but it is worth the test.I am seeing a chinese herblist and hope this will help. I will look up the other things mentioned. Thank you so much for all of your time and serious consideration of my symptoms and spirit. I am very frustrated right now b/c I called the Dr. office and my test results are back, but the doctor hasn't signed off on them yet, so they would not explain the what the levels of the 24 hr urine mean. I called 4 times begging them not to forget to try and call tonight, they said they would try, but never called. A possible answer is just sitting there after what, three years, and they couldn't pick up the phone. It isn't like I'm waiting for a strep test. I feel like a walking time bomb, with a stroke or a heart attack waiting around the corner. My heart rate today went from 140 (resting) to 87 in one minute. O.K. enough venting. I can not believe the insurance issues some of you are having. That is infuriating. Wow, I am just a big ball of negativity. I'm going to bed so I can sweat for the next 8 hours. Tomorrow is a new day!
    rose24 4 Replies
    • February 20, 2008
    • 04:34 AM
    • 0
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  • Wow, just like you, I have hot flashes constantly, only I am 28. My doctors are giving me the run around have been for about 2 years. My high blood pressure gpt misdiagnosed. I looked up high blood pressure one day, and found this pheocromocytoma. So, I took the 24 hour utine test. Tested postive. So they sent me for a cat scan. Well wouldnt ya know, theyu didnt see a tumor, so now they really dont know what to do with me, I am sweating, severe headaches, rapis weight loss, and sometimes gain, watery diraeea, you name it, the symptoms are there. Withuot my bp medicine, it was running about 180/112. AT 28? Ciome on. So, now they dont know what to do. I feel lost. My grandmother ios dying of cancer, nad my grandfather on other side just died of cancer. ALl of there siblings have cancer. What should I do/ Im glad i am not alone Request MRI scan - much better definition and sees the smallest change where CT I believe is not in the same league.
    Searching 14 Replies
    • February 21, 2008
    • 05:44 AM
    • 0
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  • helloI 'm a man of 40 yo I have those symptome after hinalated chemicals test urine was 1 positif and 1 negative high blood pressure when I have those attack (arround 3 a week) of course I was working when it happend but worker's comp denied my file !!!!! pet scan is the best to find the tumor ( a friend radiologist told me). The symptome evoluate since the first attack now I have tremor and problem to speak.... did you have the same things???hope everyone will do ok
    Anonymous 42789 Replies Flag this Response
  • I am 27 (actually live in Pa) and was formally diagnosed with pheochromocytoma. That has been 4 years after I started complaining of symptoms (tachycardia average pulse resting 125-165 bpm, blood pressure would soar to 200/100, pounding right cluster headaches, soaking sweating). I was pregnant when the first onset of symptoms so they went the pregnancy educed hypertension. It got worse after my daughter was born, the thought that it would have been completely resolved. By them I mean a group of OBGYN's, and a neurologist. It was also complicated by the fact that I was also drinking water in mass amounts 4 to 8 gallons a day. My urine output was around 9 to 12 liters daily. The have found in the last year I have Central Diabetes Insipidus. Which has caused a brick wall in the road to a pheo diagnosis, every Edno focuses on the DI for some reason. Because I do countless 24 urines and they get 2x to 3x's normal normetanephrines but my volume is high because my CDI doesn't respond to DDAVP the drug of choice for treatment they would not give the diagnosis and it was countless tests over and over again. My GP caught the idea of a pheo about 1 ½ ago, when I was complaining of soaking sweating, high blood pressure, heart pounding, massive / sudden headache, and I thought I was going to die. I walked into his office with a BP of 199/100 heart rate 180 BP (there about). I thank God he saw the writing on the wall. I have been to 2 local Endocrinologists (one almost killed me by taking me off the BP meds), 1 John Hopkins Endocrinologist (have to do one more 24 hr Urine, that makes 7, before MIBG Scan), 1 local Nephrologists (Gave me the diagnosis, excellent doctor), 1 local Urologist, 2 local Neurologists, 1 local Oncologist/Hematologist (got me into Hopkins). I have had 6 working on 7 24 hour urine catecholamine & metanephrines, 2 plasma catecholamine & metanephrines, 2 MRI's, 3 CT's. I also have metabolic acididosis which is common with pheo’s (high levels of acid in your urine) and insulin resistance. It's been a long and frustrating journey and a lot of medical bills. But you need a GP that supports you, without mine I think I would have died from this, like my father did. Good luck!
    sskh986 1 Replies Flag this Response
  • Have you been checked for von Hippel-Lindau disease? Do a search for it on google and read the VHL Family Alliance's VHL handbook for more information. The reason I ask is that you mentioned your mom died of cancer and clearly there is a genetic component here. In short, VHL is a genetic cancer disease that causes tumors in brain, spinal cord, kidneys, pancreas, eyes, ears, and, you guessed it: adrenal glands. I am concerned for you because your mom seems to have had the same thing. I am so sorry for all your troubles. I have the same symptom set and they are miserable, aren't they? Have you been treated yet? I noticed this post is several years old. Mostly I have to say I am deeply sorry for the loss of your mom. My beloved Dad died a year ago (next week) from VHL; he was only 62. It has been a devastating loss for me.
    Anonymous 42789 Replies
    • November 10, 2009
    • 10:42 AM
    • 0
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  • I had my 10+ cm pheochromocytoma surigically removed after 4 years of ***l. I went to doctor after doctor who misdiagnosed me with everything under the sun...most popular diagnosis was anxiety attacks - what a joke. My "attacks" increased in number and severity until I was having 15-20 violent attacks per day. Many times I thought I was just going to drop dead in my bed. The pheo was in me so long and grew so much that the surgeon had to completely remove my left adrenal gland, my spleen, and part of my pancrease. 4 months after surgery I still have some pain directly under my 15 inch scar, I'm extremely, extremely weak in that I can barely walk up 5 stairs without having to rest. I've gained over 30 lbs and my appetite/taste buds have changed drastically. I suffered for so long and so violently that I hope permamnet damage was not done...oh well, only time will tell. But the one thing I want to leave you with is if/when you feel "sick" see a doctor immediatly. If that doctor blows you off, see another one....only you know your body. I had almost given up hope in determining what was wrong with me and it almost cost me my life !!! Hopefully it won't return.
    Anonymous 42789 Replies Flag this Response
  • Wow, just like you, I have hot flashes constantly, only I am 28. My doctors are giving me the run around have been for about 2 years. My high blood pressure gpt misdiagnosed. I looked up high blood pressure one day, and found this pheocromocytoma. So, I took the 24 hour utine test. Tested postive. So they sent me for a cat scan. Well wouldnt ya know, theyu didnt see a tumor, so now they really dont know what to do with me, I am sweating, severe headaches, rapis weight loss, and sometimes gain, watery diraeea, you name it, the symptoms are there. Withuot my bp medicine, it was running about 180/112. AT 28? Ciome on. So, now they dont know what to do. I feel lost. My grandmother ios dying of cancer, nad my grandfather on other side just died of cancer. ALl of there siblings have cancer. What should I do/ Im glad i am not aloneIt could still be an adrenal disease - maybe hyperplasia - I have that. I would recommend you see an endocrinologist.
    Anonymous 42789 Replies Flag this Response
  • Wow, I entered this site by accident. We really should all get together.I do not have a serious history of cancer in my family and I am sorry for your losses. It must add to the anxiety a great deal.I have spelled many things wrong, sorry, but too tired for spell check! Can't find it anyway!I have been "unwell" since 2004 when I suffered congestive heart failure 6 days after my third was born. Cause never determined.All sorts of crazy stuff since then, but have become quite ill since July, gets worse every month. Usually, in the hospital once a month so they can tell me there is nothing wrong. Last time it was for such severe night sweats, or rather sleeping sweats for three days I had to be walked to the bathroom.I've lost 30 pounds over the past year, but seem to be holding steady now. Crazy, eradic blood pressure. Very high 70% of the time, then drops low fast and stays there for a bit. Same with heart rate.I have flashing, where my ears or neck or cheeks get hot and turn bright red.I first realized I was going down hill when I would wake up stricken with confusion, brain fog, then migrain that seemed to be happening about the same time every month, but then I just starting feeling that way more often. Began having horrible episodes, shaking, unable to speak, sometimes vomiting. Can't move can't talk can't speak, horrible. usually when I push myself when I am having a bad day.That is the other thing, I will be so sick for a couple of weeks, sometimes falling into a sleeping fog for 2 or three days. Then one day I'll, wake up and feel totally normal for a few days.Anyway, I had the 24 hour urin test last Thursday and I am waiting for result. I walked into the Doctors with a BP of 175/110.I have had every possible test, can't find a tumor, blood work is fine, sometimes anemic, sometimes not. Serotonin blood fine.I look horrible, my eyes have dark, purple rings around them, and my skin looks like chalk.Do me and yourselves a favor and look these two things up. There is an old post on here called "Multiple symptoms no real answers" and then google POTS (Positional Orthostatic Tachycardia Syndrome). If its not a pheocromocytoma, maybe this will help
    Anonymous 42789 Replies Flag this Response
  • I can really relate to these posts. Having headache, nausea, tingliness in the back of my head and in the back of my neck and upper back, tingliness in my hands, headache, shortness of breath, frequent urination, heaviness and intermittent heaviness & tightness in my chest, & stiff neck. Been to the emergency room 4 times in the last 2 1/2 weeks with blood pressure 180/113 or around there feeling like I'm going to have a stroke or a heart attack. They think I'm crazy and I am starting to believe them --I'm being told it's anxiety- but my my family doctor is sending me for a kidney ultrasound. He wants to rule out pheochromocytoma. He also wants me to get a 24 hour urine collection study. I am a mess and it feels like I'm losing it. But in finding this site I feel comforted. Maybe I am just nuts but I have never had these kinds of "anxiety symptoms" as they are calling them before in my life. Thanks for listening.
    Anonymous 42789 Replies Flag this Response
  • I have just landed at this thread in anticipation of begging my GP tomorrow to refer me to an endocrinologist. Won't list all my symptoms but needless to say I am here because I am suffering in the same way as you have all been.

    Just wondering if anyone get email notifications and might come back to me with how they have got on.

    Hope to hear from someone out there.
    Tina
    Anonymous 1 Replies Flag this Response
  • I'm men2a and have suffered for years
    Anonymous 1 Replies Flag this Response
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