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.

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KathrynGA 02/19/2011

I'm not sure if this has been covered here yet and I apologize if it has, I have had limited internet lately and have not been able to go though all the previous posts. I may have mentioned it myself before, my memory isn't the best, lol.

I have been researching acromegaly and heart problems. I had an echocardiagram prior to surgery due to palpitations and the results showed diastolic dysfunction, stage 2. My docs have done no further work up and my endo says for me to bring it up to my GP. I will see him again in May. From my research I have found this is common in late stages of acromegaly but is difficult to diagnose as presents differently than other types of heart failure. I am currently on medication for hypertension and the med I'm on is one of the ones recommended for this type of problem, which is good. I'm still having some shortness of breath with activities and when lying down.

What I was wondering is if anyone else has had heart problems and I have not been able to find if any of this is reversible if igf numbers return to normal.

J0KEYJ 02/19/2011

before my drug and being diagnosed..About once a week roughly Id get what I called a knock out..I would end up havng blue lips and panda eyes and with a gey looking skin not exactly the best of looks..take about two days to recover..Many symptoms the one that was suspicious was my Blood pressure very dangerously high..Im on BP tablets..I had my heart checked but that was ok...my levels have gone the bes ever and BP the best but they wont let me off yet because levels have been whats called eractic..Again Im a medical mystery LOL..I will say I have to keep away from stress because it affects me..

KathrynGA 02/21/2011

I just figured out how to search "discussions" and found this has been covered pretty well in the past. Sorry, I can be a bit slow, lol. My internet service can be a bit erratic so I try to read as much as I can before I'm booted.

Granin 02/22/2011

The summer before I was officially diagnosed, I experienced excessive sweating. It was late inthe summer when I experienced an extreme episode of confusion and palpitations. Among other things, my electrolytes were checked and my potassium was 3.1 (normal is 3.5). I was put on a potassium supplement. I've wondered if the sweating (related to undiagnosed acromegaly) resulted in the electrolyte issue, which resulted in the palpitations. Anyone else had an electrolyte imbalance related to excessive perspiration, and palpitations at the same time?

KathrynGA 02/23/2011

I have lots of palpitations which of course did not show up on the 24 halter monitor. But I don't have excessive sweating. Also have trouble sleeping on left side or lying on couch as I get more short of breath. Plan to talk with my GP about it with my next appointment.

Granin 03/29/2011

Kathryn, was just wondering if you ever got any more information about heart issues. My PCP was going to have me do a stress test and a Holter monitor, but I cancelled that as I don't respect the hospital he was going to send me to. I'll go back to Vanderbilt but not the local money pit. The periodic extreme fatigue, like I just can't go a step further, is disconcerting. The palpitations continue. The bloodwork (that reminds me to go pick those tests up) apparently all came back normal.

Eileen

Harmony22 03/29/2011

Like you Kathryn, I had lots of palpitations and sudden episods of high BP which of course did not show up on the 24 halter monitor either. That 24 hours my heart behave exceptional :-)

Granin, I had excessive perspiration and palpitations (also lost weight, had itchy skin, short of breath...) when I was diagnosed with Grave's.

KathrynGA 03/29/2011

Saw my doc who sent me to cardiologist who started me on another pill and tests are scheduled. Luckily this cardiologist seemed very knowledgeable about acro and didn't think I was crazy wanting to get things tested out. I think some of my weakness may be from my diet, I have been mostly vegan over the last 6 months trying to lose weight but only kept gaining. Now I am starting a diet for insulin resistance. Hope it helps.

Trys 05/02/2011

My Blood Pressure was difficult to control before surgery (with three drugs). Now it's under control (on two drugs).

At diagnosis of acromegaly, an echocardiogram/ECG showed that I had very slight Left Ventricular Hypertrophy which apparently was consistent with having high blood pressure.

I've not had an ECG since surgery to see if that's gone back to normal or not.

Trys
www.acromegaly.wordpress.com

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