My labs from about three weeks ago are: ACTH - < 5, Cortisol - 1.2 L, TSH - 0.02. My B12 was 188 a few months ago, but we've got it up to 1,300 with injections that I will take for life. My great-grandmother died of Pernicious Anemia. My primary doctor "thinks" I have it too. The B12 injections cleared up most of the mental confusion I was dealing with, but the numbness in hands, feet, and thighs remains. This doctor says I have addrenal insufficiency and thinks I was born with only part of a pituitary. He, also, said he, "Thinks I have Addison's". I have one kidney (I don't know if they took out my adrenal gland with it) from an accident 38 years ago along with my spleen being removed at the same time. An MRI shows a "Partially Empty Sella". I, also, am dealing with emphysema.
Here's the dilemma: I got caught in this economic crisis. I was working in Real Estate when it happened and, due to the market basically collapsing, lost my job and my home. I fell back on an RN license I got when I was 44 years old, but these health issues caused me to not be able to continue working and I, again, lost my home. Long story short, I am on disability and medicaid (after working for 44 years!) I have called every endocrinologist I could and none of them take straight medicaid. The clinic, which I now have to go to, only has an endocrinologist come in once a month - my appointment is October 7th. I tried calling this endocrinologist to tell him how low my lab results are to see if I should go to the ER or if it's OK to wait until our appointment, but he won't even deal with me on the phone at all. The primary doctor just keeps telling me, "You need to see an endocrinologist". The primary tried giving me Hydrocortisone, but it made me shake like a leaf and terribly anxious. He said he's surprised by the ACTH being low at the same time that the cortisol is low.
With the results all being so low I'm nervous, which just makes things worse (stress), and I'm concerned about an adrenal crisis that can cause coma or death. Soooooooo, I can't get an endocrinologist to see me and I don't feel bad enough (yet) to go to the ER. Does it seem that I'm heading for an adrenal crisis?
If you have empty sella, you may have more than AI, you may be panhypopit, and may be beyond what that endo can handle, sadly.
How much HC did you take and when did you take it? It is important not only to take HC, but how much and when as well to follow the diurnal rhythm. There is a lot for you to learn (but you are a nurse, most of this you may know). I take a total of 20, divided into two doses, 15 in the morning when I wake, 5 in the afternoon around 2pm to account for how long the meds last. As long as you do not get sick, you can hang in without HC, but if you get sick, you can go down fast and hard. Did you get advised to get a medic alert bracelet?
I am panhypopit, so I deal with this daily. I take a lot of meds. You also need thyroid meds, salt, florinef, and maybe a few others... I am disabled too - I think I live to take meds. It takes a while to take them right, balancing things out and oh - needing a high salt diet now.
If you do get sick, go to an ER and bring those tests with you. Any fever, take some HC.
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