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

kmatthew · 11-21-2006, 10:55 AM

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.

WandaB · 11-21-2006, 01:42 PM

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.

kmatthew · 11-21-2006, 08:03 PM

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.

kmatthew · 11-21-2006, 08:09 PM

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!!!!!

WandaB · 11-22-2006, 03:11 AM

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.