Saturday, January 31, 2015

I think I'm in love...

...With this presentation given to the Endocrine Society in 2013!

It was a small group of people (it tends to be with these endocrine disorders unless it's retrospective), so hopefully someone will do one with even more Adult Growth Hormone Deficiency subjects and thus more data (retrospective is fine by me!).  Even so, get a load of this:

Follow-up ranged 2-84 months (mean 21 months). The mean age of the patients was 50.2yr (range 28-77yr). The mean dosage of GH replacement was 0.21mg/day (range 0.1-0.4mg/day). The value of HbA1c during the replacement in non-diabetic patients was not significantly changed and no one developed type 2 diabetes. On the contrary, glycemic control in diabetic patients has been dramatically improved. In addition, liver dysfunction due to fatty liver was concomitantly improved and their body weights also decreased by GHRT. One of the cases of diabetic patients will be presented. In brief, a 44-year-old man was referred to our hospital presenting with fatigue and hyperglycemia. On admission, he was diagnosed as type 2 diabetes with HbA1c value of 11.5% and severe aGHD. Together with diet for diabetes, GHRT was commenced. His glycemic control was dramatically improved with a reduction of HbA1c value from 11.5% to 5.5% by GHRT for 3 months. HbA1c has been maintained around 5.5% for more than one year without any antidiabetic drugs. HOMA-IR was 1.76 on admission and decreased down to 1.04 one year later, indicating that his insulin resistance was apparently improved by the treatment.
Current thinking is that Growth Hormone Replacement Therapy (GHRT above) can cause or exacerbate diabetes.  This suggests it might actually help cure it.  I don't officially have diabetes, but I've been watching my sugars every so often for a couple years (it can help you track your symptoms and know when to test for cyclic Cushing's Disease).  My post-meals are always fine, but my fasting has been creeping to the top of the range.  Hopefully GHRT will not only reverse that trend, but make it possible for me to be more active and start cooking again!  (Not staking too much hope on that one, am I?)

Friday, January 23, 2015

Adult Growth Hormone Deficiency, GH Stim Results

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 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)'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.

Thursday, January 22, 2015

Superman has it WORSE!

*Share* comment and tag that person who thinks life is bad.  Things could always be worse.

-Random Facebook post.

I don't even know where to start. Luckily I wasn't tagged or I'd probably have ruptured a gasket...but this SO rubs me the wrong way.  I've heard this many times in my few decades of life.  I've heard it said to others.  I've heard it said to me.  Heck, I've probably even said it myself (hopefully I was teasing).

 If you've ever been told this by someone else, I ask:  Did it make you feel better?  

Suffering is suffering.  Does it even matter who has it worse?  Do you feel pleasure knowing someone else is suffering more?  Does someone else's suffering negate your own?  Does knowing someone just had a leg amputation make your headache go away or increase your coping skills?

What qualifies someone to judge whose suffering is worse, anyway?  Can you ever truly know what another is going through?  Why are we judging and comparing to begin with?  That is what it is, well-meant or not (though it generally comes from a self-serving place).

What you say:
"Superman has it WAY worse than you do!"

What the other person hears is a mixture of: 

"You are a whiny wimp!"  
"Your feelings don't matter."
"I don't care."

"I don't want to hear it."  
"If only you were as good as Superman, I might be a better friend."

Would hearing those make you feel better?  No, it would make you feel worse!

That said, introspectively deciding to stay strong because you are inspired by the strength you see in another is a completely different thing and can be very helpful.   Notice I said "Introspectively," meaning the dialog is wholly within the person suffering and it isn't a dialog with or forced by another.

So, what should you say instead?  How about:
"I'm sorry this is so hard for you."
"Can I help?"

"That must be difficult."
"I hope things improve for you soon."
"Stupid Kryptonite!  I hate it too."

If you want to share videos or articles about others' suffering, try using it to uplift by showing how someone copes or thrives despite obstacles.  Don't use them as a measuring stick for hardship and a way to demean others.  How do you think THEY feel about this scenario?  Talk about kicking someone when they're down...  (Sorry Lex Luthor!)

Cushie Friends

So, as you can tell by the nearly 2 months that have elapsed, there is just no way to sum up how great it was to see my cushie friends.  "These are my people."  They get it.  WE get it.  There is so much less judgment and so much more kindness.  Chris (film-maker) was fairly baffled by how well we knew each other and how we just melded into a group, like we'd been friends for years before...and yet had only ever chatted on facebook.  It was like we knew each other very well --because we did.  I've hesitated to use the words "real life" because for many of us, our online time IS our real life connection to the world and to people who understand what we're going through.

I cannot express the gratitude I have for my fellow Cushies and the technology that allows us to truly support each other.  I look back at how guilty I used to feel about my time spent online. I still have a tinge of that because I KNOW what is most important and want to spend my time doing those things, but I physically can't, so I try not to let it get to me now.  I'm still playing a daily survival game, and I just can't go there or I'll lose my will to fight.  And if I lose that, I lose it all.

But, back to a few years ago, people made very rude comments and I did internalize it for a while...Maybe I still do.  You see, I was (still am) so tired I couldn't get up and "do" things.  When this all started, holding my head up to watch a tv show was draining.  I'm better than that now, but barely so.  And when I first really lost function, I was hurting so badly because I had lost my independence, lost those things I did for "fun" and joy, lost the ability to care for my home and children the way I wanted to, lost my trust in doctors, lost my trust in my body, and even lost the support of my church congregation, all while feeling physically and emotionally like I was sick as a dog.  I didn't need a guilt trip, I needed support.  I know this now, but everyone treated me like I was just fat and lazy (and rumors were spread that I "just" had gestational diabetes, which is a far cry from the illnesses I actually WAS suffering from).  I was told to think positive thoughts and it'd all go away...and that I was making myself feel sick because I was being negative.  I can see that conversation like I'm still in it.  When we asked for help, we were first blamed for needing it, then refused it.  I still find it hard to believe what happened, despite having lived through that almost 9 month nightmare.  No, we didn't react well to that.  Who would?  It was about as far from support as you could get.

So, 3 years later now and we're coping fairly well, though nothing has changed.  It is a daily battle.  I still am stuck on a chair unable to do anything (rather literally), we still don't have the local support, and I'm still spending a great deal of my time on the computer.  I get an average of 2 non-family visitors a month, and they don't understand.

I realize I shouldn't blame others for not understanding and not wanting to understand. It's horrible, ongoing, complex, and depressing.  Few can relate.  It's VERY common to lose most of your friends and even family support with chronic, debilitating illness.  Few want to feel the emotions associated to empathize, or spend the time and energy required to maintain that friendship.  Heck, it depresses and confuses me.  I have to live day to day to stay free of the ominous grey mass of everything I'm dealing with that threatens to smother me.  I'd heard that "one day at a time" phrase so often, but I can say I truly understand it now.  I have to pick my medical battles because I only have so much energy to spend towards setting up appointments, seeing doctors, getting treatment, testing, etc.  Some days I'm so sick I would happily check myself into the ER for the night (month?) if I thought they'd have some clue how to treat me and help me feel better.  (And, would you believe, I HATE going to doctors?)  Instead I do what I can to make it through to bed time, and hopefully get some sleep.  And usually, I can start the next day with a clean slate.  A very battered and bruised slate that still feels like crap when it wakes up, but a clean one.  I survive it all simply through faith and because of my husband and children...they are my motivation to keep going.  They are what I fight for.

But HOW do I keep fighting?  My friends' support.  They get what I am going through; they've been through so much of it themselves.  They don't question the validity of my suffering.  They simultaneously offer support through empathy AND possible solutions to the current issue (be it pain, nausea, dealing with other people, depression, anxiety, a how-to plan, etc).  Sometimes they simply join in with the commiserating!  And, because that support is so complete, even that lifts the mood, as backwards as that sounds.  I don't have to explain myself.  I don't have to defend myself.  I don't have to pretend to feel better or do more than I should because their expectations are too high.  They look out for me.  They help me through my roadblocks.  They are beside me throughout my days, my nights, my ups, my downs, my lowest of lows, my insecurities, my fears, my joys, my heartaches, my shortcomings, my healthcare providers' shortcomings, my "punny" nonsense, my brain atrophy, and above all they help me not to lose myself in this black abyss that threatens to steal all that I am and can be...because they see me.  ME.  Not my disease, not what I can or can't do, not what I look like, not my job title or how I contribute to society, not the facade of "I'm fine" that most see.  I am fine.  But I'm not.  It's both; they understand.  They can see through it all because they are there with me.  We talk about everything and nothing.  I'd be lost without them.  I'd be lost without my family.  I don't know if I could keep going without either.

When I'm ready to give up, I remember what I'm fighting for, and my friends help me do the fighting.