Learning New Words

Let me tell ya, in the last 4 years I've learned so many new words I've lost count. Medical jargon I never had an inkling I'd have to learn, nevermind understand. It's amazing how most of us walk around never knowing what everything in our body is called. Did you know you have a hypothalamus? Neither did I. But I had to learn what it meant and why it was involved in my diagnosis. As an endocrine patient, I've learned so much about my hormones, glands, metabolism, and how they all connect together to make a human body work. It's fascinating, really. There is so much to learn and understand about our complex selves, I now sympathize with scientists ;)

Returning to my ever evolving vocabulary. Today's new word? Idiopathy.  

id·i·op·a·thy

ˌidēˈäpəTHē/

noun

MEDICINE

1. 1.

   a disease or condition that arises spontaneously or for which the cause is unknown.

   
   

   
   

Rigorously verified  Idiopathic AGHD likely comprises less than 10% of adult GHD patients, an already rare disorder.

Yep... That's my diagnosis. Idiopathic adult onset human growth hormone deficiency. Meaning they finally discovered what's wrong with me, but there is no logical reason they can understand. It's rare, then add more rare on top of that. Yayyy me. 😒 Thankfully, it can be treated just as if there was an obvious cause (like the tumor I was convinced I had) and after I start the hormone replacement therapy, I should start feeling better. It will likely take at least 6 months, but there is hope on the horizon. 

It took me a few days to fully wrap my head around what it meant, but I think I'm finally at peace with this explanation. At first, I was frustrated that I didn't have a definitive answer like I wanted. I wanted proof and solid evidence as to what was causing this. The "we don't know what's causing it" I got from my doctor wasn't good enough. I felt I deserved more. I stayed frustrated for a few days until I could accept there was no other answer they could give. This was it. 

I am truly appreciative that I don't have to face brain surgery. I was all brave armor, but scared as shit at the prospect. Not only that, this means I can start the recovery process this much sooner with the injections, rather than having to wait until after surgery. Also, sparing all the expense is a huge relief. 

Overall, I can say I'm okay now. I just want to start the treatment so I can begin feeling better and living like a normal 30 year old woman should. 

MRI Results

Dr just called! No tumor. She said there was nothing obvious on the MRI. So I asked why I was deficient if there was nothing compressing the gland and she said if there's no tumor, 99% of the time they have no idea what's wrong and it just is what it is (aka I assume I have to take the injections all my life since there's nothing to fix) So next I'm being contacted by the drug company who will come out and teach me how to administer the injections etc. She said it will take about 6 months for me to feel better, at which time they'll review the dose etc. So. That's that. I don't know whether to be relieved or frustrated. I'm relieved I don't need surgery, for sure, but frustrated that yet again, they have no idea why my body is doing what it's doing. Oh well. As long as it can be fixed and I feel better. That's all I want.