Yes, I had quite a number of those, not to mention a dreadful snore that disrupted my partner's sleep.

Interestingly, I hadn't realised that my face had changed so much since surgery, but I nearly got refused entry into the country coming back from holiday two weeks back -- they didn't think the passport photo looked enough like me! I looked far more tanned (I tanned well with all that excess IGF) and my nose was noticeably broader. Picture was taken 2005 (I was then undiagnosed), and surgery was in 2009.

John

Hi I to have same symptoms as you just diagnosed end last year a.nd it I'd now I find out my other health issues are due to accro to this I'd a great group for support good lyck

And add (I realized today) my repeated bouts with nasal polyps. These could have been apart from the acromegaly, as I had them in my teen years, past puberty, but while I was quite young. And I believe, John, that my skull's appearance and nose, etc., are in their earliest stages of change. I do know from my MRIs that my skull is thicker - the analyst indicated it specifically.

Vincent, other than the crossing of the eyes, I've experienced all of those. Add to the list, migraines, TIA (3), chest pains that neither my GP, Endo, nor Cardio can explain. I also have Chronic Kidney Disease (acro gift), enlarged heart, liver, spleen, and 5 extra feet of colon....all of which my medical team attributes to or a result of the acro. It seems to be the beast that just keeps on giving. Just recently, my Endo and my Orthopedic Surgeon have come to the conclusion that over the past year my hip problem is a result of Acro as well, deformed end of the femur where it turns and goes into the hip socket, instead of being round and about the size of a racquetball my have become more egg shaped with the small end point into the hip socket. Now it's gotten to the point where just stand up wrong from a chair can cause a displacement of the hip........which if you've never experienced this sensation, it drops you to your knees in agony and the literal physical manipulation of the upper thigh to get it to pop back in brings you another wave of agony......................today, the other hip has started popping out as well.............I fore see a double hip replacement in my very new future. Now the big concern is whether or not the HGH inhibiting function of the Somatulin will cause a problem with any new bone regeneration around the implants on the end of the femurs.........

This beast just keeps on giving................

Wow, I was just tested for ischemia. I was supposed to hear the result today, but I was 8 minutes late and the appointment with my GP (15 minutes for $220) had to be rescheduled. I did have an episode during the chemical stress test.

Throughout my life, one elbow tends to get a roughness about it that, if I "sand it down" it causes me no trouble. Now - the last couple of months - it is considerably worse and is going up my arm. It bleeds if I don't sand it and I have begun tramcinolone acetonide treatment. Is this part of the acro?

Yes Vincent I have had some of these and a couple of others not mentioned as I am sure all in the group would say. I think what is particularly interesting is that once diagnosed I was able to see how problems 30 and more years ago that seemed strange at the time can now be traced to the Acromegaly.

I have been generally lucky that my symptoms did not impact me as much as many others on here but I am now 65 and feel that it is starting to catch up with me. I had a pacemaker fitted 2 years ago which I am sure has enabled me to keep going (I had bradycardia) but general weakness of muscles is becoming pronounced.

vincent,

you mentioned that an analyst said your skull was thicker. what exactly does that mean? compared to an older mri or what did he see? i have an mri taken back in 2011 and i wonder if i had another mri done if one /i could see the changes... i hope one could also see my skull has enlarged because my forehead has come forward and my chin too. i m still not diagnosed...wishing you all the best.

mellyi

I was told a typical skull thickness is 1/2" - 3/4". Mine is 1" thick which I know from an MRI. It's not good because I guess it leaves less room for your brain and can be a potential cause of headaches.

A larger jaw and structures across the eyes, etc., is probably (and I say probably) not the same. I have very little of that so far. My teeth are not growing apart, and don't have (yet) the prognathic jaw. The wall of the skull is what I believe it means. As for the brain having less room, that would be the case if the skull grows inward. I suspect it grows outward. You may want to do a little research on that. The headaches (in my case) come from pressure by the tumor on other tissues surrounding it.

Hi im like you all same symptoms u also have weight gain and cant shift it I have torn cartlidge and bakers cyst I have been told I would need knee replacement soon but he wont do anything to help me now he leaving me 6 months I'm struggling to get about and have falls can anyone suggest anything or a diet that has worked for them I have tried weight watchers slimming world I don't eat fried food I'm desperate been really hard year since my diagnoses in December last year.

Hey Vincent,
I can tell you that I most certainly have experienced all those symptoms. I can't believe those who knew me best could see how big my head, hands, and feet became and no one said anything to me.

I also had chronic sinus infections, cognitive issues, dizziness, body and joint pain, course body hair, fat pads on the back of my heels, major headaches, high blood sugar, blurry vision, and major fatigue, to name most of them.

Having brain surgery in 2008 resolved the tumor but my IGF1 levels were still high, so I am now on Sandostatin injections monthly but the wake of destruction to my spine, bones, and joints is irreversible. I fear I may need a hip replacement down the line, but I need to get insurance first and then yeah, more tests, ick.

Although the after math is quite challenging, I am very thankful to God for sending me the perfect surgeons and an awesome Endocrinologist. The rest is deal-able. Feel free to message me to chat or if you have questions.

Blessings,
Val

This may sound trivial, but here goes:

I have experienced the formation of tiny skin tags on my fact that hinder ease of shaving. But my whiskers seem to be trees to me. Do acromegalics sometimes facial hair "thickening?"

What's the best way to deal with it, if so?

In the year after my surgery I was often asked by the doctors if I was shaving everyday as apparently facial hair and baldness are related to testosterone levels. They told me that strong facial hair growth and early baldness indicates a high to moderate testosterone level. Are you on testosterone supplementation? Certainly some of the elite sportsmen in Australia went mostly bald in their late twenties so I would say they are correct.

I have only one noticeable skin tag but it has got a little larger in recent times and I don't know what hormone etc is related to skin tags

I think most of us have or are experiencing some, if not a majority of these Secondary Symptoms. I have had the "skin tags" from the get go.......mostly under the arms on my upper torso. Haven't experienced any on my face, nor a thickening of my facial hair.

Every winter I tend to grow out a closed cropped beard that fills in completely in about 4 weeks. I keep my hair cut short now because it has gotten thicker........I used to wear it quite long, shoulder length or more and kept it pulled back in a pony tail.....all this despite continuously low Testosterone levels.....up to 3 pumps daily on the 2% AndroGel.,,,,,,,,,,if the levels are still low come January, my new Endo is thinking I might have to go on monthly Testosterone shots.

A new development.......last month I switched to a new Endocrinologist. She was quite concerned that my old one didn't have a dedicated team in my treatment approach........as she said, "this is a condition that we have to approach in a proactive manner as opposed to a reactive one". She has now pulled together most of my specialist ( Cardiologist, Internal, Gastric) and added Dental, Vision and a new Neurological Surgeon.

First step was getting a current MRi.......which showed that there hasn't been any new growth of the tumor at the pit, but did reveal what they thought might be a fair sized aneurysm. Last week they did an Angiogram to confirm.....what they thought was an Aneurysm turns out is something called a Cavernous Malformation. A ganglion mass of inefficient blood vessels in the brain..................lets see, 3 out of a million pit tumors result in Acro, come to find out only about 7% patients with these Malformations have them located in the brain and only 3% of those tend to bleed.........with my luck history when it comes to odds.........not going to be the least surprised to fall in that 3%..........

Have a follow up on Monday with the team of Neurologist to review the Anigoram and where we go from here..........my lead Neuro tends to believe this is most likely another symptom resulting from the Acro and definitely something we have to examine more in-depth with further MRIs and CT to determine if it is seeping and where we go from here.............possibly radiation or even surgery.............Merry friggin Christmas..... your pal the Acro beast.!