I flew to Seattle a couple weeks ago and had my growth hormone stim test done at Swedish. It was overseen by Dr. Yuen (previously of OHSU), who I met with afterwards. He was a super nice guy, knew- and was recommended by- Dr. F, treated me quite well and is well-versed in AGHD as he has published about it in the past and is involved in some studies right now. It was cool to talk with him about them, though I am unable to participate because of where I live (ie, weekly or monthly injections of growth hormone vs. daily ones). He treated me like I knew what I was talking about, had a brain (despite it being AWOL most of the time), asked me questions, talked about my endo, and even looked a bit relieved that I was going to continue to see Dr. F for my treatment. Ha ha! I guess Dr. L's MD friend wasn't too abnormal when he said "If I had to deal with Cushing's patients every day, I'd kill myself." (Fyi, Dr. L retold it to say the disease is so complex, not that we patients are PITA's, though that too can be true.)
Anyway, I showed up around 7:30 am and checked in. They said I wasn't on the list for the day when I saw admitting --FREAK OUT!, had me sit in the waiting area, then called me over and said I was good to go. *Deep Breath*
Someone from the infusion center came out and got me and settled me in my chair in one of the infusions rooms. I was SO picturing a big room with like 15 people sitting in a circle of chairs with IV's in their arms. lol Instead it was like a wing of hospital rooms with a few reclining chairs in each, and they kept us to 2 patients per room with a divider between us. Not bad at all. They asked all the questions getting my info in the computer, got the IV in, told me what to expect (Don't drink water or eat much ice, you'll regret it when the nausea hits. And tell us about that before it gets bad, better to give you the meds early on.), then injected the glucagon in my right bicept. The needle was tiny, but they had to rub it in afterwards to make sure the medication spread. And OUCH! That did send an ache down my arm. But, it went away quickly.
Then I just typed on my laptop and slowly chewed a piece of ice here and there. Every 30 minutes they'd draw blood again, and after about an hour or two, the nausea really started to hit. It was coming in waves and when the waves ebbed, I felt fine, but when they flowed, I wasn't sure how much worse it could get before I made a mess. So, I told them I was nauseous and they gave me an injection of zofran. That helped. I put my eye mask on and turned on some quiet Diana Krall and just rested there with my feet up, trying not to get sick, It felt like it went away partially, then came back towards the end. They said that I should be over the worst of it, so I didn't think anything of it and figured I just needed some food after fasting from food and drink so long.
I got a quick bite to eat, then went to the house of a friend I was staying with. I was still really nauseated and was tired, so at about 4pm I took a nap, and didn't wake up till after 8pm. I still couldn't eat well. I had eaten half an egg-salad sandwich for lunch with a gatorade, and ate the other half for dinner, with another small gatorade and a bag of sunchips, and headed back to bed. It wasn't untill I was getting ready to board the flight home the next evening (dinner time) and I was texting with a BLA-er friend (ie, had her adrenal glands removed and is steroid dependent) who just had the same test in California that day, and she mentioned how the doctor told her she would probably need to take another 5-10mg of hydrocortisone that day that it occurred to me I shouldn't STILL be nauseated from the stim test and was probably having some adrenal insufficiency. I boarded the plane and as I did so, I could feel each and every bump and say of the airplane as people boarded and luggage was added, like the slow-motion depictions of drunkeness or seasickness in movies. I became desperate enough I did take 10 hc. And, low and behold, by the time we actually took off, I was feeling much better. No nausea! Sometimes I'm dense. lol I made it home safely, though I still have almost daily nausea and appetite/aversion issues. I've certainly turned a corner on the Cushing's front.
So, the results came back the following Sunday (just under a week later). My IGF-1 drawn at the start of the stim test was in the mid-70's (bottom of the normal range for my age is 115, and optimal is closer to 250+), even lower than the previous month. My stim test, get this, showed UNDETECTABLE levels on every draw. NO capacity to produce growth hormone. WOW! Crazy. No wonder!
The results were sent to Dr. F, paperwork filled out (there's a lot) to get pre-approval from insurance, and then when they approve it I'll be getting my GH injections. They are nightly injections that I will give myself in my stomach. Dr. F is starting me on a dose of .4 and rx'd the kind I asked for, the Genotropin Mini-quick, which is made by Pfizer. I asked for this one because it is basically a syringe with a single dose in it (you get one for each day of the month, and they usually ship you 1-3 months worth at a time), though the medication is separated (ie, a chamber of powder and a chamber of liquid) so it can stay good at room temperature (above freezing and under 77F) for up to 3 months. WOOHOO! That would sure simplify things like storing my supply at home and travel, etc. Most are pre-mixed and thus have to be refrigerated...room temp degrades the medication (lowering it's effectiveness, basically) and freezing destroys it (makes it worthless). Even shaking it is a no-no because it is so fragile. Gee whiz! No wonder this stuff costs and arm and a leg and insurance HATES to pay for it. Anyway, the mini-quick is basically a syringe, you attach the needle, twist the plunger to mix the solution, then you push the plunger to inject the solution. Ingenious!
Pfizer said my insurance company should respond in about 5-15 days from their receipt of all my paperwork. We're about 5 days in now, so hopefully we hear back, with good news, soon. I am assuming it is "business days" they're counting, though, so it may be a few more weeks.
Once I start the medication, anecdotally, I should see some improvement in my sleep and ability to concentrate and remember within a few weeks. According to the medical experts, I won't see big improvements quickly, but over time. Dr. Yuen said to give it 6-9 months. Rebalancing hormones, regrowing bones, and regrowing muscles (and stamina and energy among many other thigs) takes time. An interesting back-up of that statement is that they don't adjust your dose upwards until after 6 months of treatment. And, then another 6 months. I don't know how much I'll end up on, but I have to hope that because I have none in my body, I will see more obvious improvements sooner. One can hope, right!?
Another side note is that I am starting acupuncture with my doctor on Monday. I'm excited for this! A chance at improvement without adding yet more variables like medications and herbal mixes (which can change many things)...it's complicated enough. I also redid some labwork per DR. F just before my trip for the STIM, and in *my* opinion the 8am cortisol (11.7) and estradiol (37) might be a bit low. I'm going to need to schedule another appointment to discuss the testing, nausea and symptoms, etc with Dr. F. I'll try to be better about reporting back and updating. My pre-stim email appointment was great --and the dictation? Awesomesauce.
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