Not an ugly sister – but I’m an ugly brother!
We went to see my Mam and Dad last Sunday as it was Mam’s birthday. It was lovely to see them. We were also fortunate to see my sister and my younger brother too.
We hadn’t seen my sister for over three years, since we got married (married that is, to my wife, not my sister!).
Anyhow today, Mam rang up and told me that my sister thought I’d quite dramatically changed in appearance and she suspected I had Acromegaly. Apparently they looked at a load of old photographs of me and started comparing them. My sister works as a beautician, and one of her customers had the condition so she knew what to look out for.
I’ve searched on the internet and a few things have me suspecting that she may well be right.
Feet Have Got Bigger
My feet have got wider, and earlier on in the year I struggled finding trainers wide enough for me. In the end I bought some from “New Balance” who have lots of wide ones. What I found really strange was getting into my safety boots after not wearing them for a bit to find them uncomfortably tight. In the end I bought a new pair of safety boots. Two years ago they were UK Size 9. This last month, my safety boots are UK Size 11.
Tingling in my Hands
I’ve noticed that from time to time I get a bit of tingling or numbness in my hands, nothing serious or anything, and it goes at quickly as it comes.
High Blood Pressure (Hypertension)
I’m on medication (Ramipril) for high blood pressure.
Watery Eyes
I now and again have slightly watery eyes, especially when I have a meal. I’ve even asked my optician about it, but they can’t offer an explanation. A few people on “acromegalysupport” (website gone since this post) mentioned having watery eyes, although this is not a listed symptom of acromegaly as far as I know.
Facial Changes
Now they mention it, I look like I’ve aged quickly.
Otitis Media ‘Glue Ear’ (blocked Eustachian Tube – Ear Grommet fitted)
I had a bit of trouble hearing, almost three years ago, and had an ear grommet fitted to my left ear. I’m not sure if this is related or not, but I got the impression that the condition is quite common in young children, but not in grown adults. Despite the fact my ear grommet is now gone, I still have similar problems with my left ear now and again. I just put it down to being married! ( hee hee).
No Other Symptoms
So, looking at the symptoms list then:
- coarsening of facial features – Apparently, yes.
- enlarged hands and feet – Feet have grown, yes (fingers seem to have been chunky for ages, my wedding ring still fits fine)
- thickening of the soft tissue in the palms and soles of the feet – same as above I think?
- Carpal Tunnel Syndrome (tingling feeling or pains in the hands) – yep, now and again, not much though.
- excessive sweating and oily skin – NOPE
- headaches – NOPE
- vision disturbance – NOPE
- Sleep Apnoea – NOPE (was tested for it two years ago), but do snore a lot!
- general tiredness – NOPE
- irregular periods or loss of normal menstrual function – adult females – NOPE (I’m a man!)
- impotence – adult males – NOPE
- reduced fertility – POSSIBLY YES – have been trying for children for three years, on the IVF waiting list, although my sample shows everything within range.
- decrease in sex drive – NOPE
Hello,
My name is Barb and my son also has acromegaly. Joe also has giantism. You have an incredible amount of research in your site here. Nice work.
Let me extend my sympathies to you and your family at this time. May God hold you gently close and comfort you.
I’ll be keeping an eye on your site. I’d love to chat sometime. For now tho, Know my prayers go out to you and yours.
Barb
Hi Barb,
Thanks ever so much for your comment. It’s good to know that the blog is read by people, and that in some small way it might help. I find it helpful for myself too writing about my condition, in a way it’s a therapy in itself!
I’m sorry to hear that you son Joe has acromegaly gigantism – where is he on the road to treatment? It’s absolutely brilliant what treatments are now available. How long has it been since his acromegaly was found?
All the best!
Trys
Hello Trys,
It’s frustrating to blog and not know if people read it no less what they think. I think it is brave people who put themselves out there in the hopes of helping someone else.
Joe was diagnosed in 93, had the traditional treatments, 2 transphenodials, gamma, sandostatin, eeeeeshhh and a long list thereafter. I (We) believe know his developed back when he was in elementary school. He was 17 then had the world by the tail. Smart, ambitious, received youth of the year award and 3 months later bang.
Yes, it is therapeutic to write, tell ones story. It still has it’s risks, they don’t outweigh the possibility someone may be helped.
His gh is still off the line. Pegvisomat helped he couldn’t deal with injections 2x a day. Not my call, I understand. Besides these drugs bring with them their own concerns. In my eyes it’s a wash. x may happen if you don’t take the drugs, z may happen because you take the drugs.
I look forward to learning from you. You do have an excellent understanding of these issues.
I also look forward to a long friendship.
Regards,
moge (mom of giant)
Hello,
I just did a post on this after believe it or not, seeing a rerun of the Jeffersons and wondering about the man who played bently. Needless to say, I found out about this illness and now, after unearthing photos, I am searching for more information. I am a tall woman, so it is a bit scary to find out about it. Yet, I hope your journey will be smooth as possible. Now that I know about the illness, I would like to make others aware of it as well. Have a great day!
My father had this condition during puberty when it is known as Giantism. It was stopped by the same surgery you had albeit 1970’s standards, (which meant cutting in the eye socket and going in that way) he redeveloped the condition a few years later when it then became known as Acromegaly. I have photo’s of his transition through it on my blog called Giant Descendent.
Much love to you – it’s hard to live with it because of its physical transformation and I watched Dad struggle with it. I wish he had reached out and told the world like you are, I’m sure it would have helped him. Love this blog, thanks 🙂
My son was diagnosed with acromegaly in January 2011. He was 27 years old. He began to look different over that year but I kept thinking he was just maturing and getting buff with his boxing hobby. Then he developed this ridge on his forehead and his jaw looked squarer, his hands grew bigger and generally his features were changing. He used to have a very slender nose and narrow face. Then we finally realized something was terribly wrong and found acromegaly online. It was a very scary time for all of us… I was so sad to see his looks changing for a young man and also very fearful of what was happening to his organs.
Thankfully, he had surgery at UCSF in March 2011 and so far so good! It took about 6 months for his IGF1 level to drop to normal levels. He almost began the injections in August, but by the time we got the medication from a free program at Pfizer for the uninsured or underinsured, his level had dropped! So thankful that we waited (not by our choice).
My advice to others is…
1. trust your instincts if you think something is not looking or feeling right go see a doctor.
2. Go to the best place possible for your surgery, it has been proven that the places that do the most are the best. UCSF is one but there are a couple others in the country. Your health for your life is worth travelling across country.
3. Ask your doctor about waiting some months after your surgery to start the medication. Our doctor was very surprised that the levels returned to normal and my son would have been on the injections this whole year( with their side effects) when is was unnecessary.
I send good wishes to everyone with this diagnosis, as a mother I totally understand all the stresss this is putting on your entire families! It is a a very strange disease that people do not understand or have ever heard of. Hope this helps someone out there and any mothers(or anyone else) out there who want to chat I will be glad to share my knowledge!
Great post Christine 🙂 I have recently been diagnosed with Acromegaly and am on my own little journey. Trystan’s blog is a great source of information and comfort! I visit at least once a day and learn something new. All the best to you and your son 🙂