The diet obviously isn't hurting, so if you enjoy it, keep it up. But, I wanted to weigh in on his IGF-1 level in general. Keep in mind, I'm paranoid now about these levels. Staying just above normal or at the upper limit of normal, is really not where he wants to be. For someone with Acromegaly, the target is in the bottom third of the reference range, to be considered successfully treated.

I was exactly where you are right now, up until I saw the damage this disease has done to my husband's heart. I thought close to normal was a victory. Now, I'm not taking any chances. We had labs done last week and have follow up appt. in 3 weeks, so we'll see what happens then. Has your husband met with a cardiologist and had a thorough echo and stress test done? I'd ask to see the report. My husband's enlarged aorta showed up 3 years ago and nobody said a word to us. Does your husband have any other issues, like high blood sugar or blood pressure? I'm sure you've already mentioned these things, but my mind is shot these days. If he has any of these conditions, I'd consider it extra important that he get his IGF-1 down even more. If you've read many studies on acromegaly (I think I've read them all), you know there are huge discrepancies between the mortality risk with cured or well controlled disease vs. partially controlled disease. Right now, your husband's disease would not fit into the well controlled category. Excess IGF-1, is excess IGF-1.
I hope I don't sound like Debbie Downer, but I feel like we're kindred spirits. Fellow wives, worried about their husbands. We both want to keep them around as long as possible. You're younger than us and I feel like you have a better chance than we do. So, I'm pressing you on the issue, instead of just cheering you on. I hope you understand. Obviously, you shouldn't substitute my judgement for your own, but I have to put it out there. If I can do anything to prevent you from ending up in my position, I'm going to try.
Best of luck. Keep us informed.

I trust you 100%. I will have his heart tested ASAP. I too feel like we are kindred spirits. And I look to you for advice. Thank you very much for your concern. I'll keep you posted. You and your husband are in my prayers :)

before drug..I treated my body like a temple.. it was not my diet or I didnt smoke or drink..it didnt make a difference to the symptoms..or my levels ..It is the drug that has got my levels down..more so once the tumour shrunk.I have every function checked and Im with aworriedwife..its important to have functions checked..heart..thyroid..

Tbeck, I hope it continues for your husband. The strangest thing is that each of our cases are different that is for sure. I have been fighting this beast for 14 years. It took approximately 11.5 years to get my IGF-1 levels down into an acceptable range and that was once I got onto the monthly shots. Every since then it has dropped each lab result.........now I'm in double digit levels.

Like your husband, I've had surgery (2 as a matter of fact) and 1 gamma knife procedure. There has been no evidence of any tumor regrowth since my surgeries......just elevated IGF-1 levels. My Endo told me after the first lab results after the surgery that enough tumor cells to cover the head of a pin were enough to cause the elevated levels. Thus the gamma procedure a year and a half later. Even after that my levels stayed consistently in the mid 500 - ,mid 600 range.

Worriedwife is correct in her admonishments about constant surveillance as to our levels and the lower the better.......I might add, that even then, once we get down to those lower levels, this beast demands our constant vigil to even the slightest change in our overall condition. While we can get the beast under control, the damage that permeates throughout our whole system as a result of the chaos and havoc of Acro, is still very real and still very potentially ......... and by potentially, I mean may crop up years after we have the beast under control.

Right now I'm facing a total hip replacement because of additional bone growth on the femur ball that the Doctors have concluded are the result of the Acro. The right hip has the very same condition but isn't symptomatic yet. The Orthopedic says it's not if it becomes a problem it's just when it becomes a problem.

Two years ago my MRI was clear. In December's MRI, the pituitary is still clear, but something else showed up.......something they determined was a Cavernous Malformation. (ganglion mass of thin walled blood vessels) in the Temporal Lobe. An MRI in March revealed that it has doubled in size.......now I'm scheduled for a Temporal Lobe Craniotomy come April 11th. My Neuro Surgeon highly suspects the Acro.

My point being, that we who battle the Acro beast, cannot over look the normal things that others pass off as merely getting older or over doing it for the weekend. That meeting that may have slipped our mind may seem like no big thing. Maybe it's a one time thing, but what about those notes we can't seem to find, or that event we forgot about a couple of weeks ago, or that time driving when suddenly we momentarily got confused about the surroundings......

Most of us experience pain to some level on a daily basis.....but do we recognize that pain that's different? Or the fatigue level that comes faster.........and remains a little longer.

It's imperative that we monitor ourselves. Check our BP daily, check our mobility and flexibility weekly and adhere to our health regiments (i.i. scheduled MRI's, colonoscopy exams, lab work, physicals, vision exams, etc., etc..).......

Daily I check my BP (AM and PM). I take about 15-30 minutes after I've been up for an hour or so and perform a self assessment..... pain levels, joint pain, feeling, mental levels.....and I note everything in a daily log. BP, Pulse rates, information from my self assessment,..... I note anything new or different......or unusual. Most days I note what I eat. When the fatigue fell and when I recovered. Any mental confusion, depression, lapses of memory, anything and everything......they become bench marks.

I recognized I was having cognitive and short term memory issues before I was diagnosed with them. I recognized my coordination was dropping off and I truly believe it was my daily logs that revealed the changes. While my last stress test showed that my heart function was fine (actually, my Cardio said I had the heart of a mid 20's to 30's runner....even asked me if I ran....... right) Resting pulse rate in the high 40's to low 50's.......do have a slight enlargement of the right ventricle......but other than that and the higher BP everything is fine, but you can bet I won't miss my next Cardio check up......the beast maybe controlled, but the vigil continues......

I so appreciate your input and comments. This disease makes you want to just bury your head and say everything is fine. Because thats what the doctors want to do too. They dont know what to do say except lets just check back in 3 months. So, i really appreciate the reality check and i will stay vigil on my husbands condition and not let the doctors just brush off that he is just a "little" high.
I really hoped this would all be behind us. But im starting to realize its not that simple. Frustrated!

The advice to adopt a vegan diet was given to me as well, but the diet was so Spartan I rejected it. It takes a person with an exceptional will to remain any length of time on such a diet. Now the diet helps, but it's clearly not a cure. So in addition to the diet...