Monday, January 7, 2008

late with the Sando shot

I deviated from my Sando schedule this month because I was traveling for the holidays, so I took my Sando shot late (this morning) when it should have been a week ago. I could totally, totally feel all my old symptoms acting up again, so I'm taking it as a sign that the medication was working (unless it was the acupuncture, which I also tried).

Symptoms specifically were/are:

-ankles throbbing on the inside along achilies tendon
-Joints aching: hips, neck, and back
-Talking a teeny bit "floppy" (from enlarged tounge)
-Face appears swollen
-Skin oily
-Get too hot or too cold easily
-Heart pounds
-Headache (scalp/brain feels like it isn't getting enough blood)
-Fatigue, as in, going up a flight of stairs makes me want to take a nap

The ankles throbbing reminded me that I went to a reflexologist in Hong Kong in 2004 and he said that my hormones were totally out of whack (although, I thought he said reproductive hormones) and he could tell because my ankles were tender in the spot that is tender now. I'm pretty sure my tumor was active during that time.

Also, I was watching TV on the flight back from NY last night, and on the National Geographic channel they had a special on gigantism (Also airs: Monday, January 7, 12A; Sunday, January 13, 2P). They profiled two acromegalic giants, which held my rapt attention. I learned some interesting things during the show, like how all the symptoms people get happen. Did you know that excess growth hormone makes the brain less responsive to carbon dioxide? And that it makes the muscle cells hold water, causing weakness? Funny, my acupuncturist said I have "too much water," except she explained that it means I think about things too much. Do you think we acromegaly patients think about things too much?

Sorry, I know that was a bit of free associate. Since I'm at it- Growth Hormone and Major League Baseball.

Anyway, I got my shot today so I fully expect to feel better in a few days.


almu said...


I am sure you will feel better now with the new shot! Are you testing your GH soon? All my best whishes

Anonymous said...

I am currently an "untreated acro" person. I can't help wondering why I don't have any of these weakness symptoms, etc even though my IGF-1 is 900+ all the time. And, I don't have weight gain either, in fact, I easily dropped 10% of my weight (still in "normal" range) just through diet/exercise recently in a period of a few weeks.

I'd say my tongue is enlarged some, and the condition has given rise to some facial changes with bone pronouncement in forehead and jaw-region near ears. Otherwise, I generally feel "fine" most of the time. I exercise like a madman (1/2hr per day+ of aerobic and/or resistance training), and keep calorie intake down in hopes of preventing blood-sugar issues from developing.

My endo WANTS me to give in and take Octreotide or whatever. I am just so scared of going on that kind of thing and then developing "symptoms" I don't now have (like weakness, brain fog, hot/cold spells, etc.). I am just so confused and ambivalent!

I understand high-IGF is BAD for me - that's not in question. What I don't know is whether treatment is better (yes, I know the *stats* say it is - at least marginally). I need to get past this somehow. Give in and take meds, get surgery, something I guess. But, I'm scared of ending up worse than I am now. Hell, I'm just scared in general.

Ken D. Webber said...

This is a post to anonymous. Dude, you're playing with dynamite. Wrong kind of exercise with you. What you're doing now is causing HUGE GH spikes. Acromegalics can't do that. If you're trying to build muscle or bulk up then with you it's going to backfire. You'll pump yourself up full of IGF-1 until your body rejects glucose and you'll end up with diabetes mellitus. THAT's when the weakness and tiredness set in like a 900 lb. gorilla sitting on your chest. I was fine one year, the next I ended up almost having a heart attack. It creeps up on you - and fast! IGF-1 is a precursor for CANCER. Your body is completely imbalanced and very soon you're not going to be able to maintain muscle mass. And once you start deforming it goes really fast as the bone deposits pile on. Then arthritis and inflammation join the party and you end up with cardiomegaly. If you have acromegaly you have to do something. Learn about the dangers of carbs (they create serotonin that feeds the tumor) learn about dopamine and balance. Get some treatment of some kind whether it's dopamine agonists, gamma knife, or surgery because the CHANGES really come on in a crush. I felt fine at 37. Thought I was dying at 39 just two years later. Feel the fear and fight back with knowledge and wisdom.

Starbucks Addict said...

I'm glad the shot is helping. Yeah, I can definitely tell the difference when I'm late with mine. And I just noticed lately that I seem to be hot and cold all the time too. Man I hate having messed up hormones! I'm too young for hot flashes :-/

Unknown said...

can someone tell me if they've tried ACUPUNCTURE as a treatment of acromegaly...??

also are there ANY natural remedies/treatments for acro..??

any constructive comment is HIGHLY appreciated...

Thanks, good Luck and God bless you all..