Tuesday, December 15, 2009

Human Growth Hormone in the News


Supposedly, this celebrity doctor has been prescribing and administering human growth hormone to his patients and he's been taking it himself.

I always feel conflicted when I read about HGH being used for "longevity" or anti-aging. I worry that people see this, get the wrong idea, and think HGH is this wonderful thing with no negative health repercussions. I rarely see mentions of acromegaly and the health effects of having too much HGH. On the other hand, I hope that with all this interest in HGH, more research will go into the study of it, which may inadvertently lead to advances in the treatment of acromegaly.

Wednesday, December 9, 2009

40 mg of Sandostatin every 4 weeks and Colonoscopy Prep

Well, my heath insurance debacle continues. Turns out the insurance company denied my doctor's prescription for 30 mg of Sandostatin every 3 weeks because the drug is not labeled for that dosing. The insurance company would prefer that I have 40 mg of Sandostatin every 4 weeks. Since the delay of getting my medication shipped has been going on so long (I was overdue for my shot) I went in to the hospital to have the shot administered at the chemo center. Sandostatin doesn't come in a 40 mg dose, so they gave me 2 shots, 20 mg each, one on each side. We'll see how it goes. Is anyone else on this dose?

In other news, I am on a liquid diet today because I have colonoscopy scheduled for tomorrow. In case you didn't know already, acromegaly comes with an increased risk of colon polyps, which are dangerous, so regular colonoscopies are advised. The old recommendation was to have one every 5 years if you have acromegaly, but they* recently changed the recommendation to every 3 years, which means I'm now due!

I actually don't mind the colonoscopy so much because last time the colon cleansing process made my skin really clear, and I felt much more energetic afterwards. Also, the prep procedure seems easier this time than last time. I've been sipping my broths and juices all day and so far I'm not panicked with hunger. So much of hunger is psychological! In addition, this time there is a laxative involved which I don't recall previously. I haven't started drinking THE DRINK yet, so who knows what my attitude will be like in a few hours.

As with last year's colonoscopy, my dear brother will be accompanying me and taking me home after the procedure. I feel so lucky that my family is available to help me out! My brother took me to the hospital today to get my sando, and I was hanging on him while hobbling out of there because it's hard to walk after having the shot on both sides!

*I'm not sure who "they" are but that's what my endocrinologist told me

Thursday, December 3, 2009

Other Symptoms?

I just read this article about a professional fighter who may be abusing HGH:

Toward the end of the article they discuss the symptoms of acromegaly, and they included one I had never heard of before:
9. Thickening of the neck
Of course, they are referring to "artificial" acromegaly due to HGH abuse, not a pituitary tumor, but I was wondering if anyone else has noticed this personally. I definitely experience the majority of my muscle and joint pain in my neck and shoulders, but it's hard to tell if my neck actually looks thicker. I definitely feel like my shoulders tend to be tense and elevated (almost like I'm shrugging) unless I make a conscious effort to relax them.

Are there any other symptoms you believe are related to acromegaly, but you don't see listed as a symptom? Based on my own experience, I would add:
  • sensitivity to heat and cold
  • dryness of eyes and mucous membranes
  • discharge (oil?) from the aereola
  • overproduction of callouses
  • increased thirst and appetite
Let me know if you have anything that you think is related to acromegaly that doctors currently consider a symptom.

Why I'm switching back to the HMO

(Caution! This is a rant where I'm just getting a lot of my frustrations towards my insurance company off my chest. I know I'm fortunate to have health insurance at all, but still things should be easier than this.)

I'm on hold right now with my pharmacy. I'm trying to get my next sandostatin shot set up, and it's so complicated.

  • Call the pharmacy to order the sando.
  • Because sandostatin is considered a "specialty" drug, I have to be transferred to the specialty pharmacy.
  • There's no prescription on file, so I called my endocrinologist's office to have them fax the prescription in to the pharmacy
Elapsed time, half an hour

  • Call the company that provides the nurse that will inject the medication to schedule. They can't tell me when my appointment will be, they have to call me back to let me know what time they can do it.
  • Call the pharmacy back to check on the status of my order from yesterday.
  • The prescription was received, but now the insurance has to approve it.
  • Call the insurance company, they need the endocrinologist's office to call them to approve it
  • Call the endocrinologists office, left a message asking them to call the insurance company
Today's total elapsed time on the phone, 1 HOUR

The sandostatin order is still not complete, and if it isn't shipped today for delivery Friday, I will have to wait till Tuesday for delivery because they don't do Monday deliveries (no one can send it out on Sunday). I was supposed to have my injection yesterday but I've been traveling and I won't be home till Saturday night.

This kind of thing is typical for all my medical dealings. I am doing the phone tag rounds right now for my upcoming colonoscopy as well. In the past, this is what would happen:

  • Hospital sends me bill for full price of procedure/medication/whatever
  • I call hospital billing for explanation, they tell me it is because the insurance denied/did not respond to their requests
  • I call the insurance company to tell them that I'm being billed, and insurance should be covering it
  • The insurance company sends a request to my doctor's office for more information
  • Doctor's office did not receive/respond, so I have to get the forms from the insurance and fax it to my doctor's office myself
  • Hospital sends another bill showing that I still owe the full amount
  • I call the insurance company to ask about the status of the doctor's forms
  • The insurance company tells me that they did receive the completed forms, the system just hasn't been updated yet
  • They update the system and authorize payments to the hospital
  • Call hospital with the insurance company's payment confirmation numbers
Of course, it's not as straightforward as I've described above. There is usually some extra following up along the way. Imagine long hold times, phone trees (press 1 for ....), repeating the same information over and over (account numbers, security verification questions, contact info, etc). And for what? I still have a huge deductible and multiple co-pays that do not count toward

I miss things being easier at the HMO- everything was so integrated and I could even order my refills online, then just pick it up. No approvals and authorizations between the doctor, the insurance, and the pharmacy to juggle. I hear things are also better in countries with nationalized healthcare programs. FINGERS CROSSED for healthcare reform! Improve patient quality of life!

Update: I just got off the phone with the insurance authorization people and they got the information they needed from my doctor and now they are waiting for their medical review people to look at it. The pharmacy had told me earlier that my order had a "STAT" priority, but the insurance authorization people said that my review was on the normal timeline. It is now on the STAT review timeline. Elapsed time for today is now TWO HOURS!