Please Help. Dont know what to do. Dr. not much help

Hi,

I am 20yrs. old with a new diagnosis of adrenal insufficiency. I dont even know if its correct. For 6 years I have had symptoms that have increased over time. Low blood pressure, dizzyness, fatigue, brain fog, muscle aches, joint pain, abdominal pain, weight loss. I have been seen by a neurologist, cardiologist, rheumatologist and others. No answers. Finally got a referral to an endocrinologist.

I tell him my symptoms and he immediately prescribes 4 mg daily of dexamethasone on 12/6/2020.

He ordered blood work 2 days later on 12/8/2020 after I had been taking dexamethasone for one day. On 12/30/2020, he tells me that I have secondary adrenal insufficiency (cortisol was 0.88 (normal range is 6.7 - 22).My ACTH level was 2 (normal is 5-9).

He then told me to DOUBLE the dexamethasone to 8mg a day for 4 days (I had already been taking it at 4mg for 2 weeks) and then start on prednisone at 15 mg a day after 4 days. I did some research that night and realized that these numbers were way too high!

I did NOT double the dexamethasone, and didnt start the prednisone. I stayed on 4 mg of dexamethasone for another 4 days and then reduced to 2 mg per day for 3 days. I insisted the Dr. see me and got an appt. and saw him on 1/8/2021

At the appt. I told him what I had done and that I wanted hydrocortisone instead of the prednisone. He reluctantly agreed to do it and prescribed 15 mg per day. As I was leaving, I asked him if we could run some more tests to find out WHY I have secondary adrenal insufficiency. He said, "You dont, you have primary because your adrenals are shutting down - they are dying." I reminded him that he had said it was Secondary. He said no. I asked him if I have Addisons then and should I be on additional medications. He said he had to go and would discuss it with me at my next appt in 6 weeks and then abruptly left!

I am at a loss as to what to do. I have recently read that dexamethasone can lower ACTH. If it does that, then wouldnt it also lower cortisol? Is my ACTH really low or is it low because of the dexamethasone? And how low is my cortisol really then?

He is all over the place with his prescriptions. The dexamethasone was first prescribed at 4 mg (equal to 100 mg of hydrocortisone). He wanted me to DOUBLE it to 8 mg (equal to 200 mg of hydrocortisone!) which I didnt do. He then wanted me to go on prednisone at 15 milligrams which is equal to 60 mg hydrocortisone. But I didnt want to start the prednisone so didnt take it. His finally prescription was for 15 mg of hydrocortisone.

All this happened in a 30 day period. Even though I was concerned about the high dosages, I never told him I was. So he was making these changes on his own whims. I only ever said that I wanted the lowest doses necessary and the best choice of corticosteroid for me.

My questions are? Did the dexamethasone mess up my results? Can I still get an ACTH test done? Is 15 mg of hydrocortisone an acceptable amount? Do I have primary or secondary?

My symptoms have cleared up for the most part, so there is improvement. However, I felt "wired" on the high dose of dex. and feel a bit "shakey" on the low hydro. But most of the other symptoms are better.

I am trying to find an endocrinologist that specializes in adrenal disorders, but not sure how long that will take. I absolutely do not trust the endo I am going to.

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