For some odd reason I'd hoped this visit would've gone well. No such luck. Went to UCSF today to see my endocrinologist. My fasting GH was 2.8 ng/mL, suppressed GH after 1 hour was 2.7 ng/mL, after 2 hours was 2.2 ng/mL. Didn't quite make it under 1 ng/mL. My IGF-1 was 464 with a reference range of 126 - 291. My doctor told me again that as far as he's concerned the assay range for the IGF-1 has been changed too much recently to use my IGF-1 level as a predictor of how well I'm doing.
So going strictly by my failed GH testing he's recommending I go up to the 30mg Sandostatin LAR, and check back with him after 3 full months on the med. Visibly I look better, more swelling has gone down with the increase in the last few months to the 20mg. But I really don't want to think of where I go from here when I find out the 30mg doesn't work. I'm sick of fighting with this disease already. I feel more like a 50 year old than a 31 year old. I'm fatigued all the time even though my thyroid and other numbers are good. My headaches have improved but I still have them quite often. I have heart palpitations sometimes but my EKG was fine. Everything seems *fine* but I don't FEEL fine. I'm still waiting to discuss my latest MRI with my doctor. But my last MRI was good and my GH was still too high. I really don't want to consider radiation and possibly damaging my pituitary gland further, but what option do I really have?
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6 comments:
I am so sorry to hear about your struggles and your recent GH results. I understand your concern and hesitation about radiation, esp. (as you mentioned) because of the possibility of further pituitary damage. I hope the increased dosage of meds will help and eliminate the need for it. I imagine it would be frustrating to have the shots, with no improvement on lab results. I'm glad you're feeling better physically, but emotionally it sounds draining...I hope your MRI is good...one less thing you'll have weighing on your mind. Keep us posted (I know you will).
*Cheers* and congrats on finishing up your BS degree this month. What a HUGE accomplishment - especially after everything you've gone through and continue to go through. You are an inspiration to those who are around watching.
Frustrating! I so feel you though. Especially the part about feeling 50. And not wanting to do radiation.
Listen though! There are lots of new drugs and therapies being tested for Acromegaly. Sando and radiation are not your only options! Check the news feed on the RH side of the group blog- there's always articles about new stuff that's coming out.
Hang in there, champ! Yes, it's a struggle. I have my really bummer days too. But we're here for each other!
Technically IGF-I levels could be lowered by a GH-receptor blocker named Somavert (also to try individually the right levels). Emotionally, psychologically and physically (as many parts of my body remind me) the moto goes: once acromegalic, always acromegalic! Why putting so mach emphasis on a 1.5 ng/ml difference in GH values? Just relax and enjoy the fact that we are suffering from a rare disease, have learned so many thing about hypophysis, have met a dozen of (un)qualified experts in many disciplines, have tried some high tech products and technologies and still wait for the lower values...
I definitely can't enjoy the fact that I have this disease. Not sure what you meant by that comment, something lost in translation maybe. I do tend to be too dramatic sometimes though. Not surprising as there are a few drama queens in my family :-) I was also a pessimist before developing acromegaly unfortunately. My GH didn't rise much but the fact that it's still not being supressed like it should concerns me. I'm an anxious person, I worry about everything. I'm know my condition could be worse and I'm thankful it's not. I'm thankful that it can be controlled by meds.
Nothing was lost in translation. I was talking ironically driven from own experience. Also tired and much woried about future after 3 surgeries (one stereotactic), 2160 mg sandostatin (ok totally), 360 mg pegvisomant (also totally). Apart from negatives this trial has changed me positively by making me believe in God and not taking good health for granted.
Cynical, nihilistic, tentative, circumspect, reticent, wary, may I was, but have surely become after this...
Jenny, to my eyes, you look pretty! =) Hope the headaches have eased up... God bless.
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