Acromegaly Support Group
Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.
I'm on my final stage of admission to this exclusive club. Nothing personal but it is not a club I would willingly join after all the reading I have done.
There have been lots of clues in my recent past. The doctor who commented on my bulky tongue. The doctor who said I wasn't suffering from fluid retention in my hands and feet. The goitre in my throat. The high blood pressure. The blurred vision while watching a 50" television. The nagging headaches attributed to constant computer work. The lips a celebrity would pay good money for. The snoring that disturbs my husband's sleep. The list goes on but as this is a condition that I had never heard of, it was impossible for me to link everything and come up with an answer.
I live in Northern Ireland and due to the small population I don't think I have much company here. I have been through the glucose test and the MRI. Just waiting now for a 48 hour admission for more investigations. It was booked for 10th march but still waiting for an empty bed due to high admissions over weekends from a and e.
I wake in the morning and this is the first thing that comes into my thoughts and also the last thing I think of at night and many times in between. I feel isolated and anxious.
There have been lots of clues in my recent past. The doctor who commented on my bulky tongue. The doctor who said I wasn't suffering from fluid retention in my hands and feet. The goitre in my throat. The high blood pressure. The blurred vision while watching a 50" television. The nagging headaches attributed to constant computer work. The lips a celebrity would pay good money for. The snoring that disturbs my husband's sleep. The list goes on but as this is a condition that I had never heard of, it was impossible for me to link everything and come up with an answer.
I live in Northern Ireland and due to the small population I don't think I have much company here. I have been through the glucose test and the MRI. Just waiting now for a 48 hour admission for more investigations. It was booked for 10th march but still waiting for an empty bed due to high admissions over weekends from a and e.
I wake in the morning and this is the first thing that comes into my thoughts and also the last thing I think of at night and many times in between. I feel isolated and anxious.
The glucose tolerance test and the MRI are together usually conclusive evidence.
The ocretreotide (Sandostatin) test will show if your body responds to octreotide/lanreotide, which would be the standard treatment if surgery doesn't cure everything (or if surgery isn't recommended for whatever reason).
i guess the question to ask with Northern Ireland having such a small population is whether they have the expertise to do the surgery, or if you will need to head to mainland UK for it.
BTW surgery for me was a piece of cake and not nearly as scary as I had anticipated. I came round from surgery being able to breathe through my nose properly for the first time in years.
Good luck for Wednesday!
In my case, I was stable at 30 msg of Octreotide and 5 msg twice per day of Bromocriptine. However, I opted to have surgery for the possible cure. Unfortunately, despite the surgeons thinking he removed even more than the tumor, there must have been some (or even one) cells left, and my HGH was still much higher than normal- by the way, my IGF-1 was actually normal and the surgeon had said I can consider myself in remission; with the caveat that the endo would need to verify, via lab work). Frustrating and not comfortable being w:o meds, now- need to repeat IGF-1 in August before starting another medication. Waiting is hard, regardless.
There are so few of us, even in a large hospital the focus seems to be on thyroid and diabetic patients and we are an add on.You are usually better informed than the clinicians sadly. I just keep KBOing as Churchill said.xxx
Great.....