Docs can miss adrenal problems

Discussion in 'Fibromyalgia Main Forum' started by TXFMmom, Nov 8, 2006.

  1. TXFMmom

    TXFMmom New Member

    I have been diagnosed with FM for around 14 years. I functioned well for about two fo those, and then had a very bad spinal and neck injury, and developed non-restorative sleep and became disabled.

    I started going down hill dramatically about a year and a half ago, having multiple infections, the infections would not clear, fatigue deepened, and Provigil no longer seemed to help.

    The malaise and the infections just grew worse and worse, and had gotten to the point where getting dressed and going to the doctor was almost more than I could manage.

    This spring, one of my docs saw me, and I mentioned it to him, and told him the character of the symptoms had intensified, I was having all these infections, and had almost become bed bound. HE TOLD ME I WAS FAT, AND IF I LOST THE WEIGHT IT WOULD GO AWAY. HE WAS VERY, VERY WRONG.

    He ordered all these labs, including CORTISOL, AND THEN PROMPTLY FAILED TO ALERT ME. My level was only 1.0 with 4.0 being the low number of norm. I was in ADRENAL EXHAUSTION AND SEVERE.

    His rules are that they contact you about labs, don't call me, as in his office.

    When I appeared for my 6 month, I told him I had been on oxygen with bronchitis, had developed a staph infection from a small cut and it had taken weeks when it was not even methicillin resistant, to recover, had sinus infections, and my endurance had worsened, and the first thing he said WAS LOOSE THE WEIGHT AND YOU WILL FEEL BETTER.

    I wanted to kick the jackass.

    Then, he leafed through the chart, and asked why I had not returned for counseling on my labs, and I told him YOU DID NOT CALL OR WRITE ME A LETTER AND THAT IS YOUR POLICY. YOU NEVER CONTACTED ME, HE SAID, THEY MUST HAVE, I SAID I'LL GET MY TELEPHONE RECORDS, AND WHAT DOES YOUR CONTACT SHEET SAY, AND THEY HAD NOT CONTACTED ME.

    Then he said, well your cortisol is in exhaustion BUT WOULDNT' GIVE ME THE NUMBER, and rushed me out the door as quickly as possible.

    I was on IV Immune Globulins, because I was not producing lymphocytes, probably associated with the cortisol exhaustion, at $10,000 a whack, so I had that doc repeat the results to discover that the cortisol and ACTH were both low, and the cortisol was EVEN LOWER THAN IN THE SPRING.

    To make a long story short, we now know my adrenals are normal on cat scan, and the labs show cortisol deficiency and ACTH, so it is pituitary. I still have to have an MRI, but I have had the ACTH stimulation test and started on solu cortef, which is the drug of choice and mimics cortisol the best.

    I am far from out of the woods, and I AM FRIGGIN ANGRY THAT I HAD BEEN NEGLECTED, BY ALL THESE HIGHLY PAID DOCS, OF ALL KINDS OF SPECIALTIES, AND PEDIGREES, DESPITE MY DESCRIPTIONS, BECAUSE I WAS FAT, THEY BLAMED EVERYTHING ON THAT, AND EVERYTHING IS NOT BECAUSE OF FAT.

    WOMEN WHO ARE OVERWEIGHT, AND HAVE DIAGNOSIS OF FM AND CFS ARE ABUSED AND MISTREATED IN AMERICAN MEDICINE.

    I WAS AN ADVANCED NURSE PRACTITIONER, RN, AND CERTIFIED REGISTERED NURSE ANESTHETIST FOR ALMOST 25 YEARS PRIOR TO BECOMING ILL AND WAS A GREAT HISTORIAN AND THE JACKASSES IGNORED ME AND BLAMED EVERYTHING ON FM AND BEING FAT.

    DO NOT LET THEM DO THIS!!!!!!!!!!!!!! ALL OF US SHOULD HAVE CAREFUL AND FREQUENT ADRENAL AND PITUITARY TESTING.
  2. kellyann

    kellyann New Member

    That is about the most ridiculous thing I have ever heard of! I am so sorry that you were treated so poorly.



    Jesus loves you!
    Kellyann
  3. monamea

    monamea New Member

    Jackass's is correct!

    I had 2 doctors that told me also about being obese and that if I would lose weight I would feel so much better. Do they think we are stupid, of course we are overweight we can't do alot with all the pain. I live on the farm and work inside and out and still can't lose weight, I blame some on the med's and the rest on eating when I am upset. My problem is that my family thinks the same as the Dr's so I get real upset. Some days I would like to grab them by the neck and shake them. The one I have now is great.

    I am so glad that you persisted and showed him that he is a JACKASS and could have killed you. I hope that you are getting better, if you had this problem and you are a nurse where does that leave us who are not one?

    I am so scared!
    monamea
  4. carebelle

    carebelle New Member

    I'm fat and going threw menopause ,
    depression the only help I've got is anti depression drugs.Which usually puts weight on us.

    FM/CFS nothing helps

    I've been told to loose weight also .I can't hardly walk anymore muchless exercise.

    I'm sorry you went threw this and hope you feel better soon.
  5. IowaMorningGlory

    IowaMorningGlory New Member

    Hi TXfmmom,

    I too like you was a nurse. You brought up alot of good points, excellent ones. Thank you for sharing and I hope things are going better now. Doctors and that God complex! :)

    One note I would like to share with others, that I have learned over the years is about your medical records.
    Your medical records, whether they are labs, nurses notes, doctors notes or x-rays are yours, bought and paid for. I always get copies of my transcripts and records. For many reasons, some being: Any type malpractice (records sometimes seem to get lost), disability claims or insurance so you aren't always looking up what happened when, and for your own peace of mind.

    Everyone take care and kitten hugs,
    Blessed Be,
    Laurie
  6. chloeuk

    chloeuk New Member

    and lost over 90lbs in weight...and I develped cfs/fms? in January of this year. I had no real health problems before the weightloss...dont let any dr tell you that your problems are caused by obesity...they just cant be bothered..I think they take one look at us and our "weird" symptoms and think...oh god not her again...and that stops them from treating us...or in my experience...its her depression that is causing..tachycardia, joint and muscle pain, fatigue, chronic heartburn..and at one stage weakness and numbness down one side, loss of memory,...if they test you for ms and it is clear then they feel better and then look for the easiest thing to blame...cause as far as they are concerned if you are not going to die why should they care!
  7. lenasvn

    lenasvn New Member

    I am not overweight per say, but I am treated just the same way. No testing, no referrals, etc. I am deadly sick of being ignored that way too. I read somewhere that if a doc believes you, they will refer you for the symptom that impress them the most. I was refered for none!!!! I am fuming mad too!!!!

    I am going to ask for a cortisol level, by the way. Thanks for venting,, I am sorry you and many others have to go thru this kind of BS.


    [This Message was Edited on 11/10/2006]
  8. bigmama2

    bigmama2 New Member

    I am constantly told by doctors that my fatigue is caused by my obesity. And I tell them that when the fatigue started I was skinny/ normal weight, and BECAUSE of the fatigue I became much less active and the weight gain started, and then it just snowballed!

    since getting sick 12 years ago I have gained 130 lbs. But I'm working on it. Even forcing myself to go walking, and slowly my endurance is picking up.