Saturday, January 15, 2011

4 AM

Strange conversations happen at 4 am.  Holly and I had one in the wee hours of this morning.  It came towards the end of a very long and very unpleasant night for both of us.  Holly's panic attacks hit a whole new level, she usually is winding down and ready to sleep by 3am, but last night, it just kept escalating.  I was not in any state to cope with this, my thyroid levels have tipped into hyperthyroid territory, and I've been feeling rotten - exhausted, depressed, dizzy, and the worst part, palpitations and chest pain which at times gets quite scary.  While I really wanted to comfort Holly, it was a case of the spirit was willing but the flesh was weak.
So, the more crazed Holly got, the more tired I got.  I couldn't keep my eyes open, which made her madder and more desperate, and then in turn, made me even madder and more exasperated.  It ended up with both of us exploding at each other, both of us so caught up in our own sufferings that we couldn't, or wouldn't, have empathy for each other. After quite a few tears, we calmed down enough to hug and make up, and we started trying to find a way to explain how we were both feeling, which is how the strange conversation took place.
Holly started the analogy by saying how she sees it as that she and Michael and Megan are expensive subscriptions, in that their need for attention and help is the subscription.  I've made a commitment to pay these subscriptions, with my time and effort, no matter what. (This analogy made a lot of sense at 4am, mind you.) Sometimes, the cost goes up, Holly's premium is very high at the moment, as is Megan's.  Michael isn't that costly all the time, but every now and then his bill goes through the roof.
I then said that from my perspective, while I understand I'm responsible for footing the bill, sometimes the money (my time and energy) gets a bit scarce.  I've already taken out a second mortage on my hypothetical loan, and it still isn't enough to cover what I have to pay to keep the subscriptions going.  I'm now seeking out the analogical loan sharks, and I feel I just can't keep up the payments, and my physical health is now in danger, and the loan sharks are going to break my kneecaps...or give me a heart attack. :(
As I said, this all seemed to make perfect sense last night, but I think you can see where I'm going with it.  Our analogy isn't quite as elegant as The Spoon Theory , but it got us through a bad night.

Tuesday, January 4, 2011


I'm so tired.  So very, very tired.  I've been trying to come up with something terribly witty to say about sleep deprivation, but my addled brain hasn't been up to the task.  Lack of sleep simply sucks.  I think one of the worst symptoms of Cushings is the distruption to normal sleep patterns.  While it does have some benefits, such as always having someone to talk to on Facebook as all the overseas Cushies are inevitably up at some ungodly hour, it is generally a very, very bad thing.
First, let me make something very clear...I myself have no trouble sleeping.  My problem is the opposite, I have trouble waking up.  I have the ability to go to sleep anywhere, anytime.  If I lie down and shut my eyes, you can be guaranteed in five minutes I'll be out.  Which would be just fine and dandy, if I didn't live in a house full of insomniacs.
Michael's bedtime has steadily gotten later and later over the past year, so now he gets off to sleep at around 5am and sleeps until early afternoon.  Megan isn't too bad, she's usually alseep by midnight, but has the annoying habit of waking up early.  Holly's sleep is just a nightmare!  Unlike Michael, who amuses himself playing video games throughout the night, Holly's sleeplessness is accompanied by panic attacks.
They've gotten so bad, that she been sleeping in my room so I can comfort her (poor Harry has been relegated to sleeping in Holly's room).  It usually starts at about 10pm, she started to feel "antsy" as she puts it.  By midnight, things are really starting to ramp up, right about the time that my body starts to really, really want to go to sleep.  Holly starts to get hot, her face gets red, she starts to hyperventilate and her panic goes out of control.  I've taken her blood pressure during these episodes, and it's usually high, along with her heartrate.  So, this goes on, ebbing and flowing, until about 3am.  Then, I can sleep.  Unless Michael needs something, and wakes me up. Then, I finally can get to sleep.  But then Megan gets up, and gets lonely and bored and her OCD goes off, and she needs me to get up.  So, up I get.  And we do this, day, after day, after day.

Sunday, January 2, 2011

The story so far...

Now, I know those viewing my blog are my dear, sweet friends who are kindly indulging me by reading, but there may be a few who came in late and don't know the whole, miserable story, so I thought I should bring everyone up to speed.  My lovely friends who fit into the former category, and have had to listen to me bang on ad nauseum about my woes for the past two years, you are excused from reading this post.  Everyone else, you might like to make yourself a cup of tea or something before starting's probably gonna be long.  Sorry.
I'll start with Holly, as she is the one I'm most worried about.  Holly is 16, and has had a weight problem ever since she was a baby.  We have tried EVERYTHING in an effort to help her lose weight.  We've been able to slow down gains for some periods of time, but generally it just goes up and up. She now is classified as morbidly obese.  Several years ago, her health started to deteriorate.  She started getting severe joint pain, and it was during an episode of acute shoulder pain that a doctor happened to examine her shoulder, and noticed the red/purple stretchmarks that cover her entire back.  He raised the possibility of Cushings, and ran a 24hr urine cortisol test, which came back normal.  He said it wasn't Cushings, but by then I had started to research, and I KNEW there was something seriously wrong.
She then developed the first of 2 pilonidal sinuses.  Her hair started to fall out.  Her periods stopped.  Her sleep patterns began to get messed up.  The weight gain continued.  The stretchmarks spread everywhere, even down her forearms to her wrists.  She developed a buffalo hump. She became depressed.  We saw a pediatric Endo, who was very excited to see her physical symptoms, but then when he heard about the normal UFC, ruled out Cushings and told her to diet and exercise.
I took it upon myself to self-order some testing.  She did a fortnight of midnight saliva cortisol testing, over half were high, the highest being over 12 times the maximum range.  Our sympathetic GP ran tests for us, which showed high ACTH, low Vitamin D, very high insulin, below range morning cortisol, high creatinine, high inflammation markers.  She developed Hashimotos (an autoimmune thyroid disease).  She starting having severe panic attacks, anxiety and depression.  Despite all this, her Endo dismissed it all, and wrote her a referral to get lap band surgery.
It was during the time that Holly's symptoms were worsening, I began to notice a few things in my 13 year old daughter, Megan.  She suddenly gained 20 kgs in a short amount of time.  The stretchmarks began to appear, and she developed a buffalo hump.  I thought I was being paranoid and seeing Cushings everywhere, so we got her to do a midnight saliva test to put my mind at ease.  It came back high.  She also developed Hashimotos.  The Endo ran a UFC which came back at below range, so, like Holly, no Cushings.  She is also developing a multinodular goitre, and has multiple enlarged lymph nodes in her neck, which her doctors are choosing to ignore.
Considering what was happening with the girls, I decided to get my 24 year old son Michael some routine testing.  He's Autistic, a little overweight around the middle with skinny arms and legs, but otherwise seemingly healthy.  His ACTH came back at over 6 times the maximum range.  He had low testosterone, and low testicular volumes.  His UFC came back below range, like the girls.  We took him to an Endo who deemed the high ACTH a lab error, despite getting another high on retesting, and who told us not to worry about the low testosterone, because "he's Austistic, and unlikely to have children anyway".  I have my concerns about Acromegaly with Michael, he has a freakishly large head, but we haven't done any testing for this.
Now to me.  I was diagnosed with Hashimotos over 10 years ago, and developed a solitary thyroid nodule.  The nodule enlarged over the years, and began to bother me.  I had ultrasounds and the occasional FNA, and was constantly assured everything was fine.  A year ago, I'd had enough and demanded to see a surgeon to get the darn thing out.  He sent me for another FNA, and the doctor who performed it did an extremely thorough job, and found cancer (a rare type, Hurthle cell carcinoma).  My surgeon said judging by the size of the tumour, it had probably been there for over 5 years.  I had a total thyroidectomy and radio-active iodine treatment. 
In the past I was investigated for Acromegaly, I have many of the physical symptoms, enlarged feet/hands, frontal bossing, prognathism, extreme sweating, skin tags, nasal and bowel polyps, thick heel pads..but IGF-1 was normal when tested.  In the past year I also developed diabetes.
My other daughter, Melissa, 22, seems to have escaped unscathed. She does suffer from migraines, fatigue and sleep disturbances, but otherwise, is well.  I'm watching her like a hawk though, much to her annoyance!
So, there you go, there's our Endocrine nightmare!  Told you it would be long! This brings us to where we are now...we have found a sympathetic doctor, a geneticist, who suspects we may have a form of Multiple Endocrine Neoplasia, and is organizing thorough testing for early this year. So, hopefully, they will be able to put all the pieces together, and figure out how to help us.

Friday, December 31, 2010

Deep I go!

So, after much deliberation, I've decided to start a blog.  Please bear with me, as I have no idea what I'm doing!  I've decided to start now, the first day of 2011, as I truly believe this is the year that our family gets the answers we've been seeking for so long, and I want to share what I expect to be an eventful, and probably quite scary, journey.