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 just wondering if anyone else has experienced heart problems with their Acro. Two years before I was diagnosed in 2000 with the Acro, I collapsed at work one day at my desk. My coworkers said I was blacked out for a couple of minutes. The receptionist ended up taking me to the emergency room, she thought I was having a heart attack. It turned out my BP was 210 / 160.... as my doctor said I should have been blowing gaskets. The resulting stress test didn't revel anything other than I had a very strong and healthy heart......then in 2006, 4 years after the Acro diagnosis, I ended up in the emergency room again with chest pains. Again the EKG didn't revel anything out of the normal. That's when they put me on the Avalyde. Then in 2007, the same thing, chest pains and another trip to the emergency room, only this time I apparently suffered a TMI as well. This trip resulted in a 3 day stay in the hospital while they ran a bunch of test, including a cath that didn't really revel anything other than the fact that my artery walls were abnormally thick, something the Endo attributed to the Acro. The Avalyde dosage was increased and for a year and a half no problems. Then in 2009 the chest pains became more frequent, not the same as before, which dropped me to my knees, but just enough to take the breath away and cause me to stop what every I was doing. I've keep a journal as to what I was doing and what time it happens and there seems to be no rhyme or reason. I can be sitting on the couch watching TV or on the computer. I can be mowing the lawn or talking on the cell phone..... Daily BP readings are good around 117/78 or there about. I haven't gotten the results from the stress test and sonogram yesterday, but my resting pulse rate was 45 before the test. The doctor asked if I was a runner, she said she had runner friends who would die for a resting PR of 45. I just laughed.........as if I could run. Heck the tread mill test about killed me.........15 minutes to get my PR to the 140 rate they needed me at.......the last 6 minutes I was running on the tread mill.......today I've sat with ice bags on the knees most of the day. The cardo is puzzled, she is thinking it has something to do with the Acro and pericardium .......hopefully the sonogram will show something if this is the case............all I know is it's getting to be a royal pain in the butt, cause even though I can usually just sit down, take a couple of aspirin and focus my thoughts on relaxing,.... they don't last long but they leave me pretty much wiped out for the rest of the day. Fatigued and it's like I'm in a stupor........I really have to concentrate on things happening to make a connection.............
Just wondering if anybody else has experienced this with their Acro.
Just wondering if anybody else has experienced this with their Acro.
this is my experience:
Since my first surgery (October 05) I have problems with sudden blood pressure increase. Usually my BP is low/normal. When this occurs my BP increases 40 to 80 units. For example: in the morning my was BP 110/70 and late in the evening suddenly around 194/118.
I had done tests for pheochromocytoma, luckily they were negative. Sudden BP increase happens to me once to twice a month. I have noticed that this occur more often in the time between ovulation to 3th or 4th day of new menstrual cycle. At the moment my IGF-1 is slightly over the range, OGTT: GH levels are suppressed below 1 g/L and I don't take any drugs.
Every time when this happens I feel very fatigue in the morning and in the afternoon, later in the evening I have suddenly more energy, it feels like I'm hyperactive and then I feel nausea, my BP is way to high, I get diarrhea and I shiver. BP ups and downs can last from 60 minutes to 2-3 days. I am pretty much wiped out for the rest of the day and the following day too.
During my high BP episode every strain has increased BP even more (like going to the toilet). It helps if I breathe slowly and If I stand still.
The only thing I have figure out that I have to avoid any stimulants like coffee, black tea, strain..., but it's still happening more and more often.
My blood pressure is controlled by three drugs (An ACE inhibitor, a Calcium channel blocker, and a diuretic).
It controls it reasonably well, but not brilliantly.
My biggest episode, perhaps similar to your own, of having a very high BP reading happened about two weeks after my surgery. When I was admitted into Accident & Emergency both by BP readings were in the 200s. http://acromegaly.wordpress.com/2010/02/23/emergency-admission-again/
In hindsight, it would appear to me that my emergency admission may have been to do with the hydrocortisone I was taking in case I was deficient in cortisol. We'll never know for sure though.
I have had episodes in the past where I've just felt weak. I've read about Co-enzyme Q10, and how it is deficient in people with acromegaly, and also in people who take statins. It makes me wonder whether I sometimes feel week because I've simply burnt off my reserves.
I'd be interested to know if you can come up with anything!
Trys
My son has Acromegaly and before his pituitary tumor surgery he was given a battery of tests. One test showed that he had bradycardia. It is an unusually slow heart rate. In runners and professional athletes it's a good thing, but otherwise it might signal a problem. You may want to read up on bradycardia and ask your doctor about it. If you have it, it could be causing some problems with your heart.
Snowsigns
That's what is so frustrating about this beast we face daily.....each day is a different adventure. So many pieces of the puzzle.......the hard part is the patterns vary so much from one patient to the other the medical profession follows so many trails that it's hard to nail down definitive issues and the results are that us, the patients are often times in what feels like a limbo tread mill. Good day, bad day, 2 good days, a bad day, another bad day, a good day.......it's hard to maintain a normal lifestyle, let alone hold down a job. This seems to be a common cycle for many Acro patients..... and the saddest part about it is, for many of us SS disability is almost impossible to acquire even after paying into the system for a majority of our lives. The many facets of the condition make it almost impossible to define a group disability according to SS..............so we take it one day at a time and survive. Today is a good day........I'll take that and deal with tomorrow when it gets here. Today, I think I'll paint.......the house can wait.
My blood pressure has always been extremely low, but neither of these of raised concerns with any of my doctors.
You're right, every day with this disease is different. I think a lot of it has to do with hormones.
It's amazing how much it affects us.
Hope you find some answers and be sure to share, I'll be curious to hear what they find.