Monday, January 30, 2017

Endocrinologists are a little bit nerdy.

One thing about my Endocrinologist locally is that he is VERY knowledgeable about my current health situation and he really loves "fun facts" about the pituitary gland. I have all of the faith in the world in him and he seems to enjoy lab work and knowing what's going on in my body. He's not messing around and he's given me great information.

So while there's all that, it kind of feels like I'm cheating on him when I'm seeing Endocrinologists at the Mayo Clinic in Rochester, Minnesota. I'm fairly confident he's going to love having additional information to pour over so my March appointment with him maybe won't be terribly awkward.

But last week my mom drove me to Rochester so I could see doctors at the Mayo Clinic. I basically let everyone talk me into getting a second opinion and it dawned on me while I sat in the waiting room that I had no idea why I was actually there. I don't feel as if my doctors have missed anything in my diagnosis or prognosis, and I don't feel as if any mistakes have been made. Fortunately, the things I have been diagnosed with are pretty straight forward and you can't really misdiagnose them. You either lost a lot of blood during birth or you didn't. My visit was with a doctor and a visiting doctor from Singapore. Both were very nice but I did get the impression that they weren't totally sure why I was there either.

But here is what I was diagnosed with by them (which is basically the same as here, except for the last item):

1. Panhypopituitarism due to Sheehan syndrome
2. Neurocognitive problems
3. Secondary amenorrhea
4. Secondary adrenal insufficiency
5. Secondary hypothyroidism 
6. Secondary hypogonadism

I've included the Mayo Clinic links for those items in case you're nerdy and want to learn more about each. I haven't had time to read up on all of it yet but I will. The only one that is new to me is the last one, which is a fancy way of saying I'm not producing enough estrogen, and that's put me into pre-menopause. I'm also not producing enough testosterone (yes, women produce that, too) so somewhere down the line I might decide to supplement that but it's not imperative.

What is imperative is that I get myself a Medical Alert ID bracelet and have it engraved with "hypopituitarism- give Cortisol". Apparently, should something happen to me and I'm unconscious or not able to communicate my health situation, a first-responder would need to know this because without it, I could very well die. In addition, let's say I get sick and I'm at risk of dehydration because I'm vomiting or I have diarrhea, I have to have Cortisol injections on hand and know how to inject myself because it's the same situation. I could go from OK to very, very sick (adrenal crisis) rather quickly because my pituitary gland is basically useless. The only way to treat Sheehan's Syndrome (hypopituitarism) is lifelong hormone replacement.

Because my pituitary gland doesn't work, it also means I am not producing ACTH hormone. You have no idea what that is, but it's basically what makes your adrenal glands do their thing such as helping my body handle stress, immune system, my heart, etc. That's kind of a big deal. Everything else in that list is also a result of my pituitary being useless.

I left there with more medications (yay) and appointments to come back to see the endocrinologists but also to see a PGA nurse to learn how to inject my Cortisol should I need to and also... see the neurologists.

I know. I know I said I wasn't going to do brain testing again if I could help it but as it turns out, they don't want to see what the doctors here did, they want their own data. Which I guess I understand and they are the best of the best, so who am I to question them? So I am driving down Wednesday night so I can do brain testing at 7:45 a.m. Isn't that disgusting? I can't imagine I'll do well that early in the day. Frankly, I can barely make Lucy's bottle at 8:30 and I have been up for an hour usually by then. So we'll see. Then I meet with the neurology team on Friday to go over my test results and see the endocrinologist again. Then I'll drive home and hopefully get here at a decent time to go to bed early. It's such a long drive but I'll be OK. I really want to go on my own to prove that I can. The bright side is I hope I get to meet my friend Amy for dinner one of the nights- I haven't seen her since mid-pregnancy with Lucy. It's been forever. Maybe I'll even bring my laptop. We'll see. But I sure hope these neurologists have a little more information for me but again, I'm going in with low expectations. Just in case.

1 comment:

Julie H said...

I'm glad the appointment was productive!