Things in my last post got complicated right after “there is no cancer in my pituitary gland” so I want to try one more time.
First, go read this: A several page explanation of Sheehan’s Syndrome from the Mayo Clinic. But you have to come back here after.
So let’s say the severe low blood pressure episode while having George damaged my pituitary. Since prolactin, the hormone that makes mamas make milk, comes from the pituitary, that would explain nursing failure despite practically living in the lactation consultant’s office for George’s first month…
But what about the adrenal hormone part? Well, we “accidentally” were treating that by using steroids for other things. Necessary and important things like cancer. HOWEVER, we might have created a bigger mess even while all those drugs were doing their job. Here’s the deal: our bodies have a very elegant system for regulating hormone levels. For example, the pituitary makes a chemical called ACTH. (except mine. Mine doesn’t. But we’ll get there in a minute.) This chemical goes to your adrenal glands to tell them to make cortisol. When your adrenal glands send out the cortisol, your pituitary notices this and quits making as much ACTH. If your adrenal glands aren’t making enough cortisol, your pituitary makes extra ACTH to tell the adrenals to make MORE! NOW!
It’s like 10 year old boys, mothers, and the dishes. Mom tells son to do the dishes. Son does the dishes, mom doesn’t have to tell him again. But what if mom tells him and he forgets? Mom tells him again, and maybe starts getting louder. She keeps reminding him until the dishes are done. Once they are done, Mama leaves him alone. Does that analogy make sense?
If it does, let’s continue it: What happens to the 10 year old, the mama and the dishes when grandmother arrives? Grandma does all the dishes all the time and the 10 year old is sent out to play right after lunch and supper. If Grandma stays for a long time, our ten your old might get so lazy and spoiled that he forgets how to do his chore! So no matter how much mama fusses, it just doesn’t get done right.
That’s what happens to your adrenal glands when you take lots of steroids. They quit making their hormones, because your blood is full of enough already. Your pituitary isn’t sending it’s ACTH messages either, to tell the adrenals to make more, because there’s already enough. So when the outside steroids stop, your adrenal glands have gotten lazy, lazy, lazy.
Are you with me so far? OK. So let’s talk about my situation specifically.
My adrenal glands are lazy. Way worse than our fictional 10 year old boy and his dishes. My pituitary is not participating either. Because my adrenal glands are doing NOTHING, the pituitary should be sending out HUGE amounts of ACTH and other hormones to get them to work, but it’s not.
We think this is from Sheehan’s syndrome, which you know all about now if you read the linky thing. But because adrenal failure can be SO DANGEROUS, especially in someone who might get sick while immunosuppressed, or throw up from chemotherapy, we owe my body a 2 month trial of work to see if we can’t coerce my adrenal glands into participating.
We have to give my body some of the adrenal hormones it’s missing. Life depends on them. If we fully replaced all the hormones at their regular level, I’d feel pretty good and I’d just have to do all the special stuff when I got sick or when I have surgery or chemo. HOWEVER, that’s just like always having Grandmother there to do the dishes.
So the endocrinologist has to balance it. He has to give me enough hormones to keep me alive, and out of the hospital. But there has to be enough of a deficiency for two months to see if my adrenal glands can do any on their own.
How do they know how much to give? If my blood pressure is so low that I faint regularly AND I’m vomiting daily, I need more hormones. If I feel pretty much OK (other than the lung troubles, the nerve damage, the lymphedema and all) then they’re giving me way too much. If I am quite weak and if I’m nauseated every day, the dose is right. I’m totally not kidding. That’s how they do it.
Also, obviously the guy who invented this system was NOT a parent. The docs dose these drugs very precisely, time-wise. First dose 5:30 AM, second dose (half size) at noon. The plan is that the wonderful drugs that let me get off the sofa and do my job are all out of my system by 5 PM. What in the world were they thinking? ANY mama could have told them that 5 PM is when we need to be at our BEST!
I’ve been on the plan, faithfully, for a few days… enough to know that I can’t do it exactly like this. Managing from 5 PM and soccer practices, altar server training, finishing the school day and then through supper then getting Danny’s equipment ready and wrestling a toddler who doesn’t want to settle down and then getting up several times at night when Danny’s pump alarms go off just DOES NOT WORK when your medication plan is designed to have ZERO hormones in your system at those times.
So I called the endocrinologist today and told him. We have to change something. He knows that I fully understand why the plan is the way it is, but I told him I can’t do it. He is going to think about it tonight and call me and talk some more tomorrow.