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No tumor?!
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So my IGF-1 has been in the 500s and I've had an MRI done plus dexamethasone suppression test plus growth hormone. There is no tumor on the MRI and all tests are negative for a pituitary problem. My doctor now wants me to have another CT scan to find tumors elsewhere. Ugh. This is so stressful because I already had 3 CT scans 2 years ago for my crohn's disease surgery. Does anyone know of a better alternative? Is it possible to still have a pituitary problem without a tumor? Is it possible that IGF-1 could be elevated from a chronic illness? I just don't want to have unneccessary testing done. I recently had an ultrasound of my upper abdomen to look at my pancrease, liver, stomach, and kidneys--there was nothing. The doctors at the hospital told me that the ultrasound was just as good as a CT because I'm so thin (only 98lbs). I also had a bowel series of my entire digestive system and that showed nothing. Finally, about 1 year ago I had an MRI of my pelvic region and nothing.
My physical symptoms (severe pain, sweating, etc etc.) have gotten a little better but my memory is pretty bad. Thanks! Posted on 05/22/12, 12:46 pm |
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I have come across someone who has got no tumour but has acromegaly well displaying the symptoms..its good to have all areas checked for a tumour ..a tumour is made up of cells and this is what can cause the problems some people even after a tumour is removed the cells can carry on causing a few symptoms.hormones are a very complex lot..my Blood pressure caused me to be hot also other things can cause pain.my hormones misfiring caused other symptoms which knocked other things out example...hormones caused me to have heavy periods which then caused anemia..which caused me to have lower back pain which caused me to keep going to the loo..my hormones whizzing caused rashes the list went on..but as each thing has been sorted things improved so its good that they are looking at the whole picture of you 
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I don't have any personal experience, but I have heard of this before. I can't imagine the stress of expecting to see something and then being left still guessing. I'm so sorry, and I hope you find some wonderful answers soon!
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Thanks for your responses. I hope it goes back down because I'm still noticing some skin problems. Nobody would ever guess pituitary problem for me because I'm so tiny. However, I have noticed that my hands are a little bigger and the only reason I recognize this is because I can no longer get my bracelets off.
I'm so annoyed. I think my cortisol levels are high again because my skin turns red really easily and leaves marks everywhere. My blood pressure keeps going down too. Anyhow, my doctor will be going on vacation soon so that just really gets me. Here I am struggling to maintain or survive and now he has to go on vacation. Does anyone have photophobia? or sensitivity to light? I'm also sensitive to sound.
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hi again..I had a terrible dislike to lights..LOL arrghhhh Im a vampire..no seriously I couldnt do night driving the oncoming lights really hurt my eyes..I use to hate it when someone would put on a light switch..my eyesight is good though dont wear glasses.
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as it was a lovely sunny evening went out on a motor bike ride..well following a bike on a moped..anyway noticed the glare from the sun gave me a headache..one thing been lucky with havent had headaches so its still something Im watching out for
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That stinks! Loud noises hurt me the most. I've noticed though, that some of my symptoms are improving. The noises or phonophobia not as bad. However, the sun does still hurt. Its almost like a sharp electrocution kind of a feeling when I go from inside to outside and vise versa.
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I get headaches from TMJ but its more like muscle spasms I think. Glad I don't have trigeminal neuralgia.
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LInnorm, I am dealing with the exact same situation. I have had high IGF-1 tests, though not severely high, but I have many of the acro symptoms; capal tunnel, back pain, arthritis, acne, high blood sugar, rings don't fit, heavy naso-labial folds, etc. The MRI did not show a tumor, so they did a CT scan of everything, no tumor elsewhere. They decided to put me on the Sandostatin to see if there is any change in my symptoms. My rings started to fit, the carpal tunnel is mostly gone, the naso-labial folds seem to me to be shrinking, and a skin tag under my eye is shrinking. But, I don't like the effect of the Sandostatin, which is causing high blood sugar as well as GI problems. So, I asked my Dr. if we could move up the re-test of the blood work so we can start to explore other options besides medication the rest of my life. She said we could re-do the MRI, to which I said, what is the point? The Sandostatin shrinks the tumor, and if it didn't show in the first MRI, it isn't likely to show in another MRI after 3 shots of Sandostatin... So frustrating.
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Has your doc considered MENS? There are a couple of tests that aren't as expensive as the diagnostic imaging that might be able to shed some light. One of them involves collecting a 24-hour urine sample. I wish I could remember the name, but my memory fails me, as it often does these days. :-)
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