IGF-1 looks high to me, I was around 1000 prior to surgery. There are probably some here who can beat that number though!

If it is any consolation, the IGF-1 came down a large amount after surgery.

John

Thanks, John. I'm freaking out right now because I was up for an hour last night with a pounding, then weak, racing heartbeat. It's happened before and the ER said it was probably just GERD, but now I worry that it's because of the Acro.

I remember racing heartbeats... especially at night. If it is any consolation, it goes with treatment. (Did for me, anyway)

Until you get treatment, trying to relax is the only thing that works (just a little bit).

John

Hello Suzanne,
The number is high, but has to be read in regard with your age. The younger you are, the higher is the norma.
1500 is about 4 times the maxima. For a 60 years old, 800 would be 4 times the maxima.
It means don't panick because it's higher or lower than another member here.
Second point is some adenomas are relativly small and secrete a lot, others are bigger and secrete less. You must wait until MRI will give a clear picture.
Do you have headacks and / or peripheric vision loss ?
And remember it took years for the growth of the adenoma. You will feel that next weeks are endless waiting for tests, action and solution, but try NOT to rush until you find a good endo and if needed, a good surgeon.
The most difficult part of our job is to learn to be patient...

Berthe

Suzanne, we can all understand your worries and how anxious you are at the moment. I know it's sometimes easier said than done, but the most important thing to think about is that they've caught this early and hopefully treatment will halt it altogether. As Bethe said, don't worry about the numbers, she's quite right you might have a microadenoma that's raising your hormone levels more than someone with a macro. The heart racing is quite systematic of the condition, but luckily that comes and goes.

When are you due for your MRI scan and to go back to the endo? Agree completely with Berthe, now is a time to research the condition, find out about treatment, surgeons etc, so that you're fully prepared to ask questions when you go back to the endo.

It all seems quite scary now, but with an understanding of what will happen to you with treatment etc, it does give you some peace of mind. And remember that there are people here who have had successful surgery and now in remission, so it's definitely not all doom and gloom.

Take care
x

I can only echo what Berthe and Shelley have said. Even those of us who are not entirely in remission have *far far* fewer symptoms than we used to. For me, the racing heartbeat has gone, and my sleep patterns are *so* much better. I sweat a whole lot less at night too, and I feel a lot less tired generally (something I put down to getting older; I couldn't believe how much better I felt after surgery.)

You have been diagnosed, so you are on the first steps to getting better. Expect a battery of tests before anyone as much as suggests anything. This is likely to takes weeks at least. Do you have an MRI scheduled?

John

Thanks, everyone! My endo is sending me for an MRI today and wants me to consult with the surgeon asap. I'm doing tons of research on Acro. Funny, I'm actually a researcher here at the hospital system that will be treating me. I just hope my hands, feet, and face go back to normal. Now everytime I get a headache I think, "Oh my God, it's growing!"

That's good news, at least you'll know what you're dealing with. Sure your research will be very thorough and you'll have well researched questions to ask, when you go back for your results.

Even though I've had surgery, I still wonder sometimes if the headaches are a sign of it returning, but luckily these thoughts are few and far between.

These tumours luckily grow incredibly slowly, even with younger patients such as yourself, so these few days of testing will probably not make the slightest bit of difference.

I found that having done extensive research there were still lots of unanswered questions that I had. This site was the perfect way of speaking to the ultimate professionals! Speaking to directly to people who'd been through the whole process and could tell you what to expect and agreeing/disagreeing with my random thoughts and worries.

Unfortunately this disease is not always textbook, everyone is slightly different, as is treatment plans and reactions. But unfortunately the endo invaribly give you textbook answers and information, so sometimes you have to delve a bit further in your questioning to really narrow them down on their answers.

Good news that you have an MRI. They are a bit claustrophobic, though I find the noise patterns they make strangely relaxing (it's a bit like listening to a Steve Reich composition).

The headaches are probably just headaches. For me, I didn't quite realise how many headaches I had been having with acromegaly until it suddenly struck me that I hadn't bought any painkillers with my weekly grocery shop for many many weeks.

Let us know how things look when you get the results of the MRI.

John

You may have already read that there are 2 opinions among the Acro specialists.
Some recomand to begin with surgery.
Others to begin with few months of injections before surgery.
As soon as you get your MRI, would recomand to talk about these 2 options with your Endo and with people on DS who choosed one option or the other.
Because when you'll meet the surgeon...he will talk about surgery.
You better know the pro and con before.

just an fyi, I 29 almost 30 so we are right around the same age. Normal IGF1 levels for us top out at 329 so yes your number is definately high. I had surgery before anything else. Months after surgery I started meds. Can tell you all about it sometime if you want me to. But anyway, at last check my numbers were 519. So ur numbers will come down with treatment. Hang in there. We all here with you on this ride.

My peripheral vision is fine, and my endo said I don't seem to be hypopituitary. I do have a lot of headaches, though, which makes me worry. My biggest worry right now is just the surgery itself. I've never had major surgery, and it just kind of scares the crap out of me. And it's kind of BRAIN SURGERY. I mean, my brain is my favorite organ! :) My surgeon will be Paul Gardner at UPMC, who is apparently one of the main guys for this stuff - so that is reassuring. So did anyone have any major complications with surgery? Did the physical changes go away?

Suzanna, please don't worry about the surgery, you're probably quite a few months' away from that adventure. The gold standard of treatment in the UK for Acro, is Sandostatin injections first to shrink tumor and control levels, then surgery usually. There are some people here who can't have surgery and are drug only options.

Some have wanted the tumor out straight away rather than waiting the few months whilst on drugs, but it does seem that some of us have had better results recently, with the drugs before.

Some have had some problems after surgery, but most have sailed through it. The surgery is definitely not something to really worry about, it isn't painful and,even though invasive, there are no outward signs that you've had anything done. You have to take it a bit easy after surgery, try not to bend forward too much etc, and your recovery will hopefully be pretty straight forward.

Easy to say not to worry, but we all sympathise and know what you're going through.

Just got my MRI. It's a macro and it's expanded into my phenoid and cavernous sinuses. My doc is going to meet with the surgeon and radiologist to determine if it would be best to start with medicine or surgery. I am absolutely beside myself.

Suzanne,

Sorry I'm not fluent in english, hope it makes sense.

Had diagnostic of Acro 2 1/2 years ago, can remember the day "it" apeared for the first time on MRI. Try de breath deeply and calm down. It's not a tumor and it's not in the brain.
Your adenoma went to the sinus and sphenoid : it is only bones, surgeon can go there to take it out without danger. Some people have it wrapped around carotid or optic nerve, where it's more problematic. So it went to the "less bad" direction out of pituitary.

All this area have no inervation, so surgery will not be painful because it cannot be painful, with no nerves around. At least something you don't have to worry about. And others here will say the same : surgery was much easier than we thought it will be, without pain.

You are now in good medical hands, and on the way to feel better and better soon. This is the most important thing you should focus on.

Best wishes,

Berthe