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  • Sick and desperate

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    Old 10-05-2007, 12:10 PM   #1
    thinbrownline
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    Sick and desperate

    I have been sick for many years. It has been getting worse over the past 5 years and the last year has been horrible. I have gone to several drs. I have been given various migraine drugs and psych drugs (because it's in my head, I have PTSD or I just have "anxiety")
    In researching my symptoms I found that what I have closely resembles hypoglycemia. Upon researching hypoglycemia I read about Addison's. The things that struck me were the hyperpigmentation and the possible link to brain surgery or brain trauma. 20 years ago I had brain surgery in the left frontal area as a result of a congenital defect called AVM. About a year ago I developed a thin brown line around my lips and more recently noticed a light reddish brown cluster of spots on my chest. I could not really find any info on what the hyperpigmentation looks like so I don't know if it's related to Addison's. Below is the list of symptoms that I have given to my dr.
    Am I on the right track in suspecting Addison's? I am desperate. I can't live like this much longer. I'm sure I have mental issues (I had some traumatic events occur in the past) but I KNOW this is a physical disease that I'm battling. My family is sick of it, my doctors won't do anything past the usual blood tests and I'm starting to lose hope.

    Info Given to 2 different doctors

    Symptoms that are worse when I feel sick
    headache
    nausea
    shakiness
    feeling of rapid heart beat
    hollow feeling in stomach (differs from hunger)
    muscle pain (particularly in the lower back, buttocks and top of thigh area)
    clammy palms
    irritability
    low tolerance for noise, aggravation, people in general
    anxiety
    feeling dehydrated
    dizziness (have fainted a few times)
    difficulty concentrating (can no longer read books, starting to have trouble concentrating on TV programs when feeling particularly bad), recall, spelling (brain surgery?)
    ravenous hunger or complete lack of hunger (usually the former)


    Other symptoms

    random stomach pains
    occasional hot flashes
    occasional tingling of hands/feet
    feeling cold when others are comfortable
    memory lapses (brain surgery?)
    visual problems (floaters, blurry vision, dry eyes, difficulty focusing)
    dry mouth
    itchy skin
    general feeling of mental fogginess and physical illness
    intolerance to alcohol
    intolerance to hormone birth control (tried 4 different types of the pill, norplant)
    recently (within last year) developed brown rim around lips and light reddish brown spots on chest
    ocassional weakness (knee will give out or I will drop something that I felt that I had a good grip on)

    The illness is cyclical but does not follow any pattern that I can see. It gets worse before and during the first few days of my period but it also occurs at other times during the month. It is often worse when I am stressed but not always. The days when I am sick the pattern is always similar. The days when I feel bad the physical symptoms feel almost flu like and the mental symptoms feel like I am not right, like I'm wobbling on a narrow precipice.
    The days when I feel better I almost always have slight fatigue, rapid heart beat and slight shakiness but I am free of the extreme nausea, extreme fatigue, muscle pain and headache. The symptoms are getting worse over time. I have fewer good days and the symptoms are getting worse, especially the muscle pain.

     
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    Old 10-09-2007, 07:23 PM   #2
    reemu
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    Re: Sick and desperate

    hyperpigmentation: my hands were darker than the rest of me, my knuckles especially. my upper arms looked dirty, and i developed dark freckles on my face. all unusual coloring went away as soon as i started taking prednisone.

    A lot of your symptoms sound like the same ones i had before i was diagnosed. The biggest thing for me was nausea - I could hardly bring myself to eat and if i didn't lie still for hours i would vomit. Also extreme fatigue - could barely walk from room to room without getting exhausted.

    have you been tested for addisons?
    i hope you are able to get some sort of a diagnosis soon.

     
    Old 10-10-2007, 04:44 PM   #3
    carlandamber
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    Re: Sick and desperate

    Hi,

    I was diagnosed with addison's when I was 14. Before that I felt sick all the time, lost a lot of weight, had muscle pain, had headaches and dizzy spells. I was very tan and my elbows and knuckles were darker than the rest of my body. I had many of the symptoms you have listed. Now I am 20 and have been taking medication ever since i was diagnosed. And my skin is lighter than it was before the medication. I gained my weight back since I have been taking medication. I still get dizzy spells, have headaches and I get hot flashes. But I feel much better than I did. Well I hope you get well soon

     
    Old 10-13-2007, 05:13 PM   #4
    robin56
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    Re: Sick and desperate

    My symptoms were very similar to yours. It took the my doctor 10 years to find out I had Addisons disease. It took me almost passing out behind the wheel of a car on the expressway. Mine started out very minimal maybe once a year I would get symptoms, then it became more frequent. Over a period of about 6 months I went to having symptoms once a month to daily. I couldn't even get out of bed because the vertigo was so bad and then I would start vomiting. I lost alot of weight from no appetite. I would ask the doctors to do an adrenal hormone test. ACHT to see where your levels are at. Also have them check your pituitary gland. I hope this helps and maybe if they did these tests, they would find out one way or the other.
    Quote:
    Originally Posted by thinbrownline View Post
    I have been sick for many years. It has been getting worse over the past 5 years and the last year has been horrible. I have gone to several drs. I have been given various migraine drugs and psych drugs (because it's in my head, I have PTSD or I just have "anxiety")
    In researching my symptoms I found that what I have closely resembles hypoglycemia. Upon researching hypoglycemia I read about Addison's. The things that struck me were the hyperpigmentation and the possible link to brain surgery or brain trauma. 20 years ago I had brain surgery in the left frontal area as a result of a congenital defect called AVM. About a year ago I developed a thin brown line around my lips and more recently noticed a light reddish brown cluster of spots on my chest. I could not really find any info on what the hyperpigmentation looks like so I don't know if it's related to Addison's. Below is the list of symptoms that I have given to my dr.
    Am I on the right track in suspecting Addison's? I am desperate. I can't live like this much longer. I'm sure I have mental issues (I had some traumatic events occur in the past) but I KNOW this is a physical disease that I'm battling. My family is sick of it, my doctors won't do anything past the usual blood tests and I'm starting to lose hope.

    Info Given to 2 different doctors

    Symptoms that are worse when I feel sick
    headache
    nausea
    shakiness
    feeling of rapid heart beat
    hollow feeling in stomach (differs from hunger)
    muscle pain (particularly in the lower back, buttocks and top of thigh area)
    clammy palms
    irritability
    low tolerance for noise, aggravation, people in general
    anxiety
    feeling dehydrated
    dizziness (have fainted a few times)
    difficulty concentrating (can no longer read books, starting to have trouble concentrating on TV programs when feeling particularly bad), recall, spelling (brain surgery?)
    ravenous hunger or complete lack of hunger (usually the former)


    Other symptoms

    random stomach pains
    occasional hot flashes
    occasional tingling of hands/feet
    feeling cold when others are comfortable
    memory lapses (brain surgery?)
    visual problems (floaters, blurry vision, dry eyes, difficulty focusing)
    dry mouth
    itchy skin
    general feeling of mental fogginess and physical illness
    intolerance to alcohol
    intolerance to hormone birth control (tried 4 different types of the pill, norplant)
    recently (within last year) developed brown rim around lips and light reddish brown spots on chest
    ocassional weakness (knee will give out or I will drop something that I felt that I had a good grip on)

    The illness is cyclical but does not follow any pattern that I can see. It gets worse before and during the first few days of my period but it also occurs at other times during the month. It is often worse when I am stressed but not always. The days when I am sick the pattern is always similar. The days when I feel bad the physical symptoms feel almost flu like and the mental symptoms feel like I am not right, like I'm wobbling on a narrow precipice.
    The days when I feel better I almost always have slight fatigue, rapid heart beat and slight shakiness but I am free of the extreme nausea, extreme fatigue, muscle pain and headache. The symptoms are getting worse over time. I have fewer good days and the symptoms are getting worse, especially the muscle pain.

     
    Old 10-17-2007, 06:59 PM   #5
    LKeeney70
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    Re: Sick and desperate

    You have also been checked for thyroid issues, correct?
    __________________
    Lynn - hypo, hashi's

     
    Old 10-26-2007, 10:56 AM   #6
    thinbrownline
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    Re: Sick and desperate

    Thanks for all of the responses. After posting that I had an episode where I blacked out twice. I went to the ER and I had an irregular EKG and some elevated protein that indicates a heart attack. I spent a week in the hospital and they did tons of tests on my heart and my brain. The consensus was that my brain surgery caused the EKG abnormalities and I was OK. I inquired over and over again about the recurring symptoms I have been experiencing and the dr. said I was depressed or anxious. He gave me a prescription for Prozac before leaving. He did all of this in front of my DH and actually chuckled patronizingly as I broke down while telling him that I KNOW MY BODY AND I'M SICK.
    The day after I was released I had an appt with my dr. I told her what happened at the ER, that my CT scan was OK (she had initially thought that my previous brain surgery may be causing the symptoms) and could we please look into adrenal problems. She said my test results did not indicate any adrenal problems (A generic lab tests including thyroid). She did order a 3 hr glucose and said that my fasting glucose was a bit abnormal at 112. I insisted on seeing an endo and she reluctantly gave me an authorization. I mentioned Addison's and she ordered a fasting cortisol blood draw. From what I'm reading that won't show anything? Am I correct?
    Also, when I was in the hospital they said that my potassium was low and gave me supplements. From what I am reading Addison's disease causes high potassium. They also said I had low BP and had a sub normal temp.
    It's so frustrating. My dr ordered copies of the hosp records and called me 2 days later with a psych referral. I am so angry at the hospital doctor. My dr and now even my DH are starting to doubt me because of him. How can he even prescribe psych medication when he isn't a psychiatrist? and from what I'm reading there are dozens of real medical disorders that cause the symptoms that I am experiencing. Is it just a given that a 30 something mother is depressed?
    Sorry for the long post and thanks for letting me rant. If anyone has any encouraging words or advice I'd be grateful.

    Last edited by thinbrownline; 10-27-2007 at 06:06 PM.

     
    Old 10-31-2007, 11:35 AM   #7
    tracey_416
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    Re: Sick and desperate

    This is very similar to what has been happening with me, for 2 years and I still don't have a diagnosis. The docs kept telling me to see a psych, so I finally went and the psych said it was not a mental problem, it was physical and there was nothing he could do for me.
    At least that shut up the other doctors who were more than happy to pawn me off to the shrink. It might be worth one trip just so the docs will rule out psychiatric problems.

     
    Old 12-05-2007, 08:27 PM   #8
    thinbrownline
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    Re: Sick and desperate

    I finally saw an endo.
    He told me I have pre diabetes (110 fasting and 5.8 A1c) and elevated prolactin levels
    He gave me Bromocriptine
    Looking at the tests, my FSH was also low 2.8 (2.5-10.2 range) but nothing else
    my cortisol at 9 am was 12.6 (4.0-22.0 range)
    besides the normal blood tests he did
    rheumatoid
    FSH
    LH
    Progesterone
    Prolactin
    T-4, Free
    TSH
    IGF-I

    I have noticed more skin discolorations and I'm still very ill. Are there any other tests I should ask for? Does the normal cortisol reading exclude Addison's?
    Thanks for any advice

     
    Old 02-04-2008, 12:00 AM   #9
    val319
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    Re: Sick and desperate

    I still think your cortisol looks low. Can I just say &*%*& to test ranges, they are crap! TSH can be .2-5. At 5 I'd be a tired hippo, .2 I'm like an ADD kid on pixy sticks and a 2 liter of cola. Here's an off the wall idea= call around to local pharmacies and ask for a list of doctors that prescribe florinef. Same thing if you want an armour doctor. I am a firm believer if they don't prescribe they do not believe. If your in Chi town let me know I found a wonderful dude. "HE LISTENS AND CARES" kinda like finding out Santa does exist.

    Did the dr check progesterone on day 21, check for PCOS during first 7 days of cycle. Problem is they just send this stuff off without realizing all the technicalities.

    Last edited by val319; 02-04-2008 at 12:04 AM.

     
    Old 02-04-2008, 07:05 PM   #10
    Crssywissy
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    Re: Sick and desperate

    Quote:
    Originally Posted by tracey_416 View Post
    This is very similar to what has been happening with me, for 2 years and I still don't have a diagnosis. The docs kept telling me to see a psych, so I finally went and the psych said it was not a mental problem, it was physical and there was nothing he could do for me.
    At least that shut up the other doctors who were more than happy to pawn me off to the shrink. It might be worth one trip just so the docs will rule out psychiatric problems.
    It's amazing to me that so many doctors are quick to brush us off when we KNOW something is wrong with our bodies. I saw more than ten physicians that all told me, "there is nothing physically wrong with you." One ER doctor even went so far as to tell me, "It's all in your head. You have no illness or sickness of any kind." I saw so many doctors that all said the same thing so many times that I started doubting myself. I was to the point where I just thought...well...I've officially lost my mind! Then, I had my Addisons Crisis and my endocrine doctor came into the ER and diagnosed me right away. Thank God for him.

    It seems hopeless, but your savior is out there. Don't give up hope and don't let these doctors tell you there's nothing wrong with you when you KNOW your body. Good luck and God bless.
    Christina~~

     
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