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  • Question for Wanda or anyone else with information on Autoimmune Antibody Test

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    Old 11-21-2006, 06:55 AM   #1
    kmatthew
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    Question for Wanda or anyone else with information on Autoimmune Antibody Test

    Wanda Please Help!!!
    It has been several weeks and all of my tests are finally back in. I have low cortisol and low growth hormone, and it is being caused from adrenal insufficency not the pitutary even though I have a history of elevated prolactin with no tumor and a recent MRI that still shows no tumor. It was believed that I had Addison's as I suffer from all the symptoms except the darkened skin. The autoimmune antibody test showed negative, which my endo says means that I do not have addisons. I am confused because I have been reading and maybe I have misunderstood but does adrenal insufficency either signal addisons or secondary addisons. If not, could it develop into this later? I am currently taking 30 mg of cortef, .1 of florinef along with 75 mcg or Synthorid and .5 mcg of Cytomel along with Dostinex two times per week for my pituatary problem. I am so much better than 5 weeks ago, still dizzy and tired but not as bad. My thyroid levels are leveling off finally, I had cancer in July.
    Here are the results from Insulin tolerance test, but I do not have any ranges sorry.
    At 7:00 the baseline was Glucose 89 ACTH 21F Cortisol 18.2 GH .1f abd IGf 134f
    At 8:35 Glucose 46cf ACTh 8f Cortisol 7.9 GH .1f IGF-1 131f
    At 8:50 Glucose 49cf ACTH 178f Cortisol 15.2 GH 2.1f IGF-1 156F
    9:05 Glucose 61L ACTH 127f Cortisol 21.2 GH 8.1f IGF-1 157f

    The results I have from the Autoimmune test just say negative and Titer test not performed.

    I also had the stim test which I passed which is why they were so suprised I had an adrenal problem.

    I HOPE YOU CAN HELP ME INTERPRET. All of this has been most overwhelming. I even had one doctor say this problem did not even need to be treated, which if this medicine goes past its dosage time for me I can hardly function, needless to say I will not be going back to him.

    I am also severely hypoglaucimic.

    Thanks for your input.

     
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    Old 11-21-2006, 09:42 AM   #2
    WandaB
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    Re: Question for Wanda or anyone else with information on Autoimmune Antibody Test

    As usual for most of us with addisons, you need to see another endo. You can have addisons without the antibodies. Seems most doctors in med school slept through the chapter on addisons.

    I assume you were not on Cortef when your tests were done. Would be best to see another doc & go over your test results.

    How long have you been taking 30mg Cortef? Are you gaining weight? 30mg Cortef will shut down your adrenals if they were working at all.



    from another site............

    Diagnostic tools
    Diagnosis of Addison's disease may involve:
    Complete detailed family history, with special attention to any other endocrine disorders.
    Biochemical tests, which measure cortisol levels before and after a challenge injection of synthetic ACTH, known as a 'short synacthen test'. A 'long synacthen test' is done over several days in hospital. Synacthen tests will indicate the person's baseline level of cortisol production and their response to an increased need for cortisol in the body. An Addisonian may show a flat or reduced response.
    Blood electrolyte and plasma renin tests will indicate if there is a need for mineralocorticoid replacement.
    ________________________________________ _____________________
    Anti-adrenal antibody test. If the result is positive, primary Addison's disease is definitively diagnosed. However, even if these antibodies do not exist, the person may still have Addison's disease.
    ________________________________________ ______________________
    X-rays, ultrasounds and CAT scans of the abdominal region to check for visual signs of damage and the size of adrenal glands.

     
    Old 11-21-2006, 04:03 PM   #3
    kmatthew
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    Re: Question for Wanda or anyone else with information on Autoimmune Antibody Test

    I have been taking the cortef for about 5 weeks, since the problems with all the dizziness and fluctuating blood pressure started. In all honesty, I would not even know where to begin to find another doctor here. I had such a bad experience two weeks ago with my second opinion. He made me feel crazy and said he would not even treat me with the levels in the insulin tolerance test. Blamed all my problems on anxiety, which is a load of garbage by the way. I am having anxiety now because of the illness, not because of a terrible past. Forget the fact that I have just had thyroid surgery four months ago with 9 tumors, which thank goodness were benign and that getting out of a chair without feeling as if you were going downhill on a rollar coaster had been occuring. Where do you find doctors that specialize with this. I am not familiar with the test you named off at the bottom. How do I mention having these done without making the doctor feel like I am questioning her. The only thing that I know to do is go to MD Anderson, and see the thyroid department. I don't know if they would even take me due to the fact that I did not need radioactive iodine or chemo. I really like my Endo, she just seems more interested in the thyroid other than the adrenal problems. She feels she is taking care of that with the cortef and florinef which is now maintaining my blood pressure. Who do you listen to?????
    What can you tell from those levels I gave you?
    I wish I knew where to turn. What happens if the adrenal glands stop working??? Do I want to know???? I feel much better.
    I hope you can give me some insight.

     
    Old 11-21-2006, 04:09 PM   #4
    kmatthew
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    Re: Question for Wanda or anyone else with information on Autoimmune Antibody Test

    Just saw the bottom of your post. No I am not gaining any weight at all on the medicine. In fact I have taken off another 10 pounds which brings me to a grand total of 31 since last May. I had to totally change my eating due to the hypoglaucima. I was one day off the cortef when the insulin tolerance test was done. They said it is considered a clean test if you go 24 hours. Both the hospital and the doctors told us this. When they did the stim test I was on no drugs at all, and I passed. They did that when this all first started.

    Help!!!!!

     
    Old 11-21-2006, 11:11 PM   #5
    WandaB
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    Re: Question for Wanda or anyone else with information on Autoimmune Antibody Test

    It would be good to go back to the doc to go over your test results. Exactly why were you given Cortef.

    With addisons you will need to learn to ask for what you want from the docs. Most don't have a clue how to care for us & can actually cause more harm than good. They are just people who learned from a book & are not living with addisons. It took me awhile to figure this out, but I am very involved in my addisons health care now. Find all the forums you can & do allot of research.

    Are you still dizzy?
    Is your blood pressure steady now?
    What were your electolyte results before starting Cortef? Sodium & potassium.
    What is your TSH level? You are on a low thyroid replacement.

    If adrenal glands don't work it is adrenal insufficiency or addisons & replacement cortisol is taken. A person taking a full replacement (like you are) of cortisol is suppressing the adrenals if they were working at all. They do nothing when suppressed. This is the case with the people who have to take high doses of prednisone for asthma or arthritis. Some end up on cortisol replacement for life because the adrenals stop working & will not start again.

    I am not able to help you with your results. Would not want to give a wrong opinion.

     
    Old 11-22-2006, 08:10 AM   #6
    kmatthew
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    Re: Question for Wanda or anyone else with information on Autoimmune Antibody Test

    This all started when my synthroid was increased from .05 to .112 and withing three days all these symptoms started occurring. Both doctors I have seen SWEAR THIS WOULD NOT HAVE CAUSED IT, BUT I WAS FINE AND HAVE NOT BEEN THE SAME SINCE. So who knows.

    I was given Cortef a little over five weeks ago because when standing I would have very big blood pressue increases or drops along with increased heart rates. I felt awful, and could hardly function. I had to have people help me across the room etc. I have had every test under the sun to rule out heart problems. I even had a tilt test which showed big changes in pressure, but not consistent rises or drops. I felt awful 5 weeks ago. Everything from HUGE MOOD SWINGS both with 3 hours of crying, or several hours of irritation, which is so not ME. I also could not stand for longer than 3 minutes without feeling like I had walked 5 miles, there were even days that I COULD NOT get myself out of bed. Cortisol was my endo's first guess, so they started with 20 mg of Cortef to try and help me get relief. It helped great for 2 days and then it stopped. When the remainder of the Insulin Tolerance Test came back about a week and a half later, and she said that an additional 10mg needed to be added along with Florinef, and since then I have greatly improved. It took a while, but I am about 85% back to myself. I still tire easily when standing still, but not as bad, but I am so much better. I am now on a low low dose of Lexapro which is helping with the mood swings until they get my TSH straightened out, along with me well from all of this trama I have been through over the last 5 months and this has really really really helped me. I was most hesitant to do it, but I am really glad I did. They had tried everything else. My TSH was at .06, and it was also determined that I had a really bad hormone imbalance with the Lh counts 11.3 and the fSH at 2.9. They tell me that these counts are reversed. Tried hormone replacement, and the first pill was disasterous.... I am most sensitive to medication. The dizziness is 90% gone if I stand still for too long it comes back. My cardiologist says blood pressure is dropping still, but dropping within the normal range, so they are not as worried. before I would go from 120/70 to 70/59 within a matter of seconds. I do know that my sodium and potassium were normal. I don't know if electrolytes were tested, but I assume that they were.
    Wanda, I really don't know what to think. I got a second opinion because it took 6 weeks to get me to this point, and I was impatient with the fact that everything took forever. I went to a supposed master book writer in the field of thyroid, and was made to feel like a crazy person. He took everything that has been done to me so far and said it was misdiagnosed and I would not even be treated by him if I were his patient for adreanal insuffiency. I found him to have a huge ego. He did not even look at all the data I brought him, he focused on the anxiety, which in my opinion is a result of all of this. All I know is I feel better, and when this medicine is not taken on time, the symptoms begin to return. I went back to my original Endo who tends not to listen but is a breath of fresh air compared to what I experienced, and she is doing better at the moment with that. I think I scared her to death, because they could not find what was wrong. She knows my history, treated my misdiagnosed cancer, and managed to find the supposed problem. Now I just don't know. If I knew of a doctor who knew a lot about this I would go, I just don't, and I have learned you have to be so careful. My current doctor has a really good reputation, just not the best with one on one time, but has really gone out of her way when you look at the big picture. I just hope that other doctor is wrong, and she is not treating me unneccessarily. I go back to see her in January now unless something goes wrong again. That is how much I have improved. I have been going 3 times a week for the last 5 weeks.
    Help!! What do I do???????

    Last edited by kmatthew; 11-22-2006 at 08:11 AM.

     
    Old 12-11-2006, 02:45 PM   #7
    vickir
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    Re: Question for Wanda or anyone else with information on Autoimmune Antibody Test

    HI, My son has addisons and lives in Houston. He sees an endo in the Medical Center named Morali Sharma. She seems to be very knowledgeable about Addisions. IF you still need a doctor you might want to contact her.
    Take care and hope you get the help you need.

     
    Old 12-11-2006, 07:35 PM   #8
    kmatthew
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    Re: Question for Wanda or anyone else with information on Autoimmune Antibody Test

    I appreciate your advice, and I have heard of her.

    Thank you.

     
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