This website is intended for an Australian and New Zealand audience who are interested in acromegaly
This website is intended for an Australian and New Zealand audience who are interested in acromegaly

Dave

If he would have told me I think you have acromegaly I would have asked him what that is.

This patient story reflects only this person’s opinions about their own care. Each person’s case is unique. You should always consult a doctor for information and advice about the diagnosis and treatment of acromegaly.

Please note that all treatments may have side effects. Ask your doctor about side effects when considering a given treatment.

We were on holidays in Hong Kong, walking down the street. We’re just doing shopping, looking around. And I had somebody run up to me and grabbed me by the hand and said, you need to see a doctor. Your hands are too big. You have tiger paws and they sort of dropped me hand and then just kept walked off into the crowd.

Hong Kong’s very busy. The streets are packed and they were gone. I didn’t think too much about it. I just thought, what was he talking about? And the wife sort of laughed, you know. We didn’t take too much notice of it. If he would have told me, I think you have acromegaly I would have asked him what that is. And when I got back to Aus- tralia, I would have just got a blood test, ask the GP and I could have picked it up a lot earlier.

The hands were extremely large. It was difficult to buy shoes, shirts. People used to think I went to the gym where I didn’t. It’s just because of the growth hormones. Generally, I’d have to get shirts made. The shoes I’d buy from the U.S. because they’re very hard to get a wide foot in Australia.

Lack of sensitivity in the hands. Your jaw will continue to grow. So you’ll get an underbite. Facial features to the side because your bones are still growing larger tongue, deeper voice, restricted airways, barrel chested, headaches. You’ll get a lot of headaches

in the early stages and the loss of peripheral vision. I’m constantly tripping over things. I have a little Chihuahua, so he’s learnt to keep out of my way when I’m walking now be- cause he doesn’t want to get trod on all the time.

Yes, so my family really didn’t notice since it happened over such a long time and every day something changes a little bit a little bit. Nobody really notices it. Like, I’d look at myself sometimes thinking my face is changing. And I just kept putting it down to like, I work hard I’d get up early in the morning. Sometimes I wouldn’t come home to one, two o’clock in the morning. I’d be tripping over things and I just put it down to working hard.

The wife said, you need to get an eye test. I got the eye test and they told me for all intention purposes, your eyes are good, but there’s something wrong. You need a C.T. scan. So the C.T. scan revealed a pituitary tumour about the size of a golf ball.

So after that, I seen a specialist. The specialist said you obviously you need it removed. I had a lot of questions. It was difficult to get answers. Everything’s very fast, you know, it all has to happen quite fast. So I went on the Internet, tried to find what information I could find. There wasn’t a lot of information, so it was quite difficult.

I did find some help with patient organisations on the Internet. They were quite helpful. They sent me out a booklet which gave me a lot of information in relation to the radiotherapy.

And it also had contact phone numbers where I could actually call somebody that’s had acromegaly and speak to them and they could tell me their experience.

And I thought it was quite good because I did speak to someone who’s been through the surgery. Admittedly, in the old days, the surgery was probably maybe a lot more barbaric than these days where there’s no scarring. But no it was quite good, informative and helpful, you know.

So I went through with the operation. It all went pretty good. They couldn’t remove it all. I had a growth hormone count. I believe it’s an IGF-1 of eight hundred and fifty. A normal person is around 20. Just to give you an idea. My hands were, you know, I’m not sure if you can see they look reasonably big now, they’re about twice that size. So after the operation the next day, the hand shrunk considerably. I felt so much better.

Occasionally I get headaches, peripheral visions is a big one. You still have large feet, large hands. I cannot do the same job. I used to work at heights. I get dizzy. The loss of peripheral vision. And you get fatigued. You get fatigued very easy so. Unfortunately, I had to give that away. But at the end of the day, you know, you just have to continue on. Things will get better from the early stages, which will be difficult, but they will get better.

The only advice I can really give for acromegaly is you’re going to need the surgery. Listen to your doctor. Listen to your endocrinologist. And eventually things will get a lot better for you than what… You’ll feel better. Your hands will come down in size. Your voice won’t be as deep. You will lose some muscle. But you will feel so much better. Straight after the surgery. But you do need to get the surgery. Don’t put it off.

Finding shoes, clothes to fit generally internet. You can buy U.S. shoes which will fit. No problem. Shirts you may have a problem with. You may have to get them tailor made. Which I do when I’m in Asia a lot. So they’ll just make the shirts. They end up working out being cheaper. But generally the Internet’s the best place to buy, especially shoes because of the width.

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Ipsen
Please always consult a healthcare professional if you require healthcare advice or if you have any specific concerns regarding your acromegaly, its treatment or side effects. The information provided here is not intended to replace professional advice. This website has been developed by Ipsen in collaboration with those living with acromegaly and the healthcare professionals who care for them. Ipsen would like to thank everyone for their valuable insights and stories. All names used on this website are not necessarily real names. Visit our website for more information about us, or to contact us directly. Website design and development by Kanga Health Ltd. Website reference SOM-AU-000710 Last reviewed 7 July 2020 Ipsen Pty Ltd Level 2, Building 4, Brandon Office Park, 540 Springvale Road, Glen Waverley, VIC 3150 Australia Ipsen Pty Ltd, ABN 47 095 036 909.