IGF-1 Assay Range for Comparison

I've recently learned of an IGF-1 assay range issue, and thought it would be interesting to post the range used for me. It is from January of 2012. I was 35 years at the time this assay was used, and my IGF-1 was 283 ng/mL, growth hormone (ICMA) was 0.721 ng/mL, with a range of <=6 for all ages. My UCSF endocrinologist wanted me under 1 ng/mL for growth hormone.

IGF-1 (BL- blood level) Assay Range by LabCorp (San Diego, CA US) for use by UCSF endocrinology for Acromegaly treatment (San Francisco, CA US) January 7, 2012

Age	Range	Mean	SD
19-20y	217-475	323	75
21-30y	87-368	237	74
31-40y	106-368	225	71
41-50y	118-298	205	60
51-60y	53-287	172	55
61-70y	75-263	180	51
71-80y	54-205	156	46

Acceptance of the Disease, or just Tired?

I've felt many times lately a feeling of peace that I hadn't felt before in regards to life and Acromegaly. As though I'd come to terms, well mostly, with my Acromegaly. Maybe it's just Tired Jenny speaking? I'm not sure. I should surely have gone through all of the *steps* with over 6 years of confirmed diagnosis. But it's a nice feeling.

Stress, Anxiety and Acromegaly

I used to stress and be anxious about what caused my Acromegaly. I think I've mostly come to terms with it, and hopefully one day I'll stumble upon the reason. As far as managing anxiety and stress, I would try medication, but I don't because I always get side effects. I've learned to pay attention and listen to my body more, learn my triggers and try to avoid them ahead of time. I avoid crowds, certain individuals that stress me (I've completely cut some friendships), shopping at certain times, driving long distance, amusement parks, small children (just screaming/cranky ones), etc. I really work on communicating my feelings, and learning what bothers me. I've learned to manage pretty well, but some days none of my techniques seem to matter! Unfortunately this means I also avoid some things I love.

A New Chapter?

I'm sorry for the negativity I've been projecting lately. When I become very tired and stressed (it seems like even little things stress me out these days) I become very cranky. I've been trying to learn to recognize how I feel in advance to curb my negative behavior, but it's hard. I'm frustrated by my lack of options in treatment, the negative effects of medication, and the negative effects of having Acromegaly. It's a difficult disease to live with.

I think rather than continue my dissatisfaction with my treatment, and with UCSF right now, I will see if I can return to Stanford for a new opinion on my care (thankfully I have a PPO now, more options). And maybe I will find an herbal supplement to help with my stress issues? I wonder how everyone else with Acromegaly deals with the angry outbursts? I feel as if I can't control my actions sometimes, like a child having a temper tantrum. At first the Sandostatin seemed to help with that. Maybe 40mg every 3 weeks is too much for me? I've started gaining weight again, I've had GI issues, my hair is extremely dry and seems to have stopped growing as much and is turning completely gray at 35. It's so tiring trying to determine the proper care for myself. I feel like I can't trust any doctors because they truly don't know what I'm going through, and they don't have the experience with my disease to help me. All they can tell me is what the numbers should be on paper. They might look right, but something's not right.

Wishing for a Miracle

Five and a half years after surgery and I'm so tired of dealing with Acromegaly and the medication. My diet sucks. I'm constantly trying to tweak things to find a normal, healthy diet. But I can't stick with it more than a couple weeks. My hunger overtakes my will. Same with exercise, only my fatigue overtakes me.

Julie was commenting on her blog (Acromegaly and Me) regarding working and Acromegaly. I think it definitely makes it more difficult, I just don't know to what extent. Last fall I joined 2 parent clubs, and I just recently started working as an office assistant 10 hours per week (in addition to the care and constant taxiing of my 3 children). My blood pressure went from 130/80 to 160/100. I was feeling the stress for sure. I became kind of alarmed and tried a diuretic under doctor supervision (I've tried I think 3 other BP meds before with negative side effects). My BP went to 120/80. Great! But I've been thinking it interferes with my Sandostatin. I'm tired all the time, brain fog is worse, I'm having headaches/neck aches again, sciatic issues are flaring. I had been doing great on the Sandostatin alone with less stress. *Sigh* I feel like I can't win, there is no solution. I've quit one parent club. Maybe I can quit the diuretic and up the Sandostatin so I can possibly function without BP med. I knew I still wasn't at "normal" even on the 40mg every 3 weeks, no matter what the doctors or numbers say. I know my body and it wasn't there yet. And there's the additional worry that at some point my insurance might somehow drop me, or try to delay my care because I'm too expensive. I don't want to be this expensive!

I'm encouraged to hear Julie is on 60mg LAR every 4 weeks and feeling fantastic. I think it's funny though, my doctors (fellows) at UCSF kept telling me I was maxed out at 40mg, and were pushing the idea of Cabergoline. I hate pills, side effect city so I resisted. What do they know anyway? Sure as hell not enough about my disease till they've lived it.

Cost Of Surgery

(In response to my anonymous poster)

I had surgery in December 2006 for a 2.3cm pituitary macroadenoma. There were no complications, no CSF leak, etc. I stayed overnight at UCSF and was released by 11am the day following surgery. My insurance at the time was Health Net in California. My surgery cost almost $35,000. My copay was $250, that's all I paid out of pocket.

My Acro Monster

In response to an anonymous poster who didn't believe I looked like I physically had Acromegaly, here are before and after pictures. Oh, and thanks for the comment since I certainly don't wish to look like an Acromegalic :-) I never wanted to post my worst pictures because I was embarrassed and ashamed of the "monster" I felt that Acromegaly turned me into. But if it helps others, here it is. I'm including my reply to this person, although I forgot to include all of the physical signs of Acromegaly that I had, sorry my memory is still not the best. Another I can mention is I started developing an under bite and TMJ.

My Acro Monster (Pre- Surgery 9/2006, Surgery 12/2006)

Almost 5 Years Post Surgery (6/2011)

"Yes, I believe my Acromegaly may have been caught early. I did have the outward signs before I had surgery. Some of my physical symptoms of Acromegaly were: I gained 30 pounds, my nose and lips enlarged, my skin darkened and thickened, my brow started lowering and my eyes became further recessed. I had acne, I grew more facial hair. I also developed the body type of the Acromegalic with a barrel-like chest, and spade-like hands and feet. Going on a diet, having surgery 5 years ago, and the fact that I'm now on 40mg of Sandostatin every 3 weeks has gone a long way towards getting me back to looking normal, although I don't feel completely normal on the inside. I still have large knuckles and spade-like hands and feet, although my tissue swelling has reduced immensely. I haven't posted one of the worst pictures of myself before surgery, but I can do that so you can see more of a difference. Truthfully I'm embarrassed at the monster I became. This is my picture timeline."

My Picture Timeline