Hello,

Was thinking of you and your brother. Any improvements or enlightening information yet? Holding you in prayer, Tracy

Thank you Tracy.

Unfortunately, it hasn't been good news.

The doctors are now leaning towards a diagnosis of schizophrenia. It surprised me how quick they have been to come up with their conclusions.

They still have not checked if he is on the right medications for his Addisons. They say he is on the right meds for his hypothyroidism.

What I am afraid may have happened is, my brother was off his medications for over a year. In that time he had an appointment with his endo, who tested his ACTH. His ACTH was very high (700) and so the endo thought he wasn’t on enough cortisone (assuming he was taking his original dose). So he prescribed more cortisone (in the form of dexamethasone) to lower the ACTH.

But perhaps it was too much, given that he wasn’t taking his original medication. Perhaps if he was taking the original dose he wouldn’t need anymore. He is still on that dose of 5mg Pred and 0.25 Dex.

He doesn’t seem to be doing much better or responding to the psychiatric drugs. He is still delusional, and hallucinating. We are trying to insist that they check into his Addisons, but its very difficult to get through to these doctors. They just think we are in denial and he is schizophrenic. Maybe that is the case, but I have trouble accepting that until all his other tests are done.

Thanks for your prayer and support.

a.

Dear Atif,

Glad to hear from you, but sorry about what you have to say! I can think of a few choice words for your brother's caregivers, but this is not the point. I KNOW you will get replies from those who are knowledgable about Addison's and thyroid issues, so I will keep my mouth closed, except to send you lots of sympathy and prayers. I think that even those with no knowledge of the disease can REASON that the doctors' approach is rediculous! It is unspeakable. I'll end now and let those with more helpful remarks join in. All the best in getting help for your brother! I certainly would not accept their diagnosis without seeing that they had effectively treated the Addison's. This approach is dooming him to neglect, in my uneducated & naive opinion. ~ Tracy

Just attempting to "bump" this message up, and rename it, so it will get attention. Otherwise, it just looks like it was simple reply to my message, when it is a cry for "Help". Will see if this works. ~ Tracy

We are trying to insist that they check into his Addisons, but its very difficult to get through to these doctors. They just think we are in denial and he is schizophrenic. Maybe that is the case, but I have trouble accepting that until all his other tests are done.


Unfortunately most doctors aren't good at listening and they have a tendency to jump to conclusions. You have to remember they are just consultants and not gods. If you don't like what they are doing then demand what you want. If they refuse, then demand they write in your brother's chart that they refused to test him for adrenal insufficiency. Most doctors will not want such a direct statement on the chart in case they might be wrong (god forbid). Then shop around for a doctor more willing to listen.

An ATCH of 700 is very high and deserves a closer look at his pituitary gland, especially in light of his low thyroid as well. At any rate, increasing cortisol beyond the normal limits to decrease ATCH isn't proper protocol.