Peter, I think the problem comes with the confusion between the medical society itself.....and that is the use of the word "cure" in our treatment. My first Endo who diagnosed me, never used the word cured.....in fact, she specifically said "no cure, only control" and focused on quality of life. My second Endo said the same thing. My third Endo used the word "remission" as long as my numbers were in the acceptable range and "relapse" when they climbed.......not so concerned with "quality of life", just the numbers. My current Enod agrees with my original Endo........"control and quality of life". Cure would mean I wouldn't need supplements or meds, or have to worry about the lingering damage already done..........

I was told by my Neurosurgeon (who helped develop the Transsphenoidal) that even enough cells to cover the head of a pin, were enough to cause problems.....even if they didn't develop into another tumor.

Keep in mind the Pituitary Gland is the traffic cop of your Endocrine system......think of it as the processor in your computer. If it ain't functioning properly, nothing else is either in the Endocrine system.........and that touches just about every other system or function to some degree in your system. I was diagnosed in 2000 with a macroadenoma. IGF-1 levels just over 1400.....I've had 2 transsphenoidal surgeries, 1 gamma knife procedure, I've been on shots for 15 years ... still am. I take the whole regiment of hormone replacements or supplements. In 2008 I had my first TIA, in 2009 I had another TIA. In 2014 I had an Occipital Lobe Craniotomy to remove a benign tumor encased by a Cavernous Malformation. I also had my left hip replaced a month later. In 2015 (December) I had my right hip replaced...........all of which my doctors (Neuro and Ortho) attribute to the Acro beast. I have blood work done every 3 months. I have annual MRI's. I take a monthly Somatuline Depot shot, daily replacements or supplements for Adrenal gland, Thyroid and Testosterone. I take blood pressure meds and a low dose aspirin regiments daily.....and I take a low dose antidepressant to take the peaks off and fill in the valleys. i do a Tai Chi routine for beginners and seniors every other day and I ride my recumbent bike everyday. On the off days for Tai Chi, I do my strength work out ( light weights, many reps).

I still battle daily pains in my joints and muscles as well as fatigue. My stamina is drastically reduced and my cognitive and short term memory skills have been affected. In 2014 I was awarded full and permanent disability after a 3 year battle with Social Security Administration...........I was 55 when I had to retire from a 30 year career in Architecture.....in March I will turn 60.

I have days that are great. I have days that are not so great and I have days that I do good just to get out of bed in the morning. I'm still working on a whole house renovation that was started 9 years ago........it's about 95% complete. Finishing up the interior trim and come Spring, we'll move onto the exterior. Progress is slow when you have to account for breaks for rest and naps or not so great days or the bad days.

Peter....my numbers are excellent.......short of the Triglycerides. I tell you this tale to make a point..........every one of our cases is different save one thing........the Acro beast. After my surgeries, I went back to work in about 3 weeks. By 5 weeks I was back to my normal routine in the studio or on the project sites....within 2 years I was struggling.

I remember when I was diagnosed and my Endo came into my hospital room to tell me, before she left she told me "this isn't a death sentence if gotten under control........it is a life altering condition though." We have good days, we have not so good days and we have days that just plain suck.........we make adjustments, we adapt.............we continue the battle.

You asked how do we deal with these symptoms.........you eat healthy, get plenty of rest, stop doing things that are harmful to your system (smoking, drinking, over doing things, etc., etc.), you learn to listen to your body, you stay vigilant in your battle and treatments, you adapt and adjust...........and you appreciate each and every day.........good or bad.

Lifespalette, thanks for the comment. I'm much younger than you (26), and I hope that I will be able to work as a normal healthy person.. But at this moment, it seems to be almost impossible, I am so tired most of the time. Before diagnose I force myself to get up everyday and drive to my school, after a few hours I was wasted, and when I arrieved home I felt like I come back from some kind of war expedition. I have no drive to go outside to socialize with people, meet new friends or potential girlfriend, hobbies. When I try to do that despite of my disease I couldn't be myself, be funny, telling jokes, be interested in what people are saying to me etc. I remembered this period of time really bad, and it's hard to even remind any plesant moments from those time. I just don't want to live that way, and I'm still escaping from real life to internet and video games. When I feel bad, I can immediately go to bed. There is no possibility to take a nap, when doing something out of the home. My familiy and friends blame me that I don't do what they think I could do, not because of disease, but because they think I'm just a lazy peace of shit and I dramatize my symptoms. They think this is a matter of freewill, and acro is not so serious illness to be responsible from this situation. Through the last few months I belived them, I thought that I'm really lazy and this is a true reason, and try again to do everything as a healthy person should do, but it was to hard to stand this fucking tiredness. It is also a paradox that despite of chronic fatigue I have so much trouble with sleeping. A wake up very early in the morning and can't sleep again. The quality of my sleep is also very bad, I can't rest and regenerate.

Peter, I know where you're coming from and what you're feeling. My doctors have said they thought I most likely had the tumor for at least a decade before I was diagnosed....possible longer. I was 44 when I was diagnosed. Had gone to college on a sports scholarship (track - pole vaulting), competed in gymnastics at Olympic level routines.... was athletic, outgoing and always on the go. I played on a national level open league competitive softball team when my symptoms started become physical...... broke an elbow throwing a softball from home to second, taking longer to recover and getting fatigued easier. Started having blood pressure issues and stroke like symptoms...... fatigue was becoming an issue, both work wise and as a father of 3 kids. I thought it was just "growing older" and tried to "man up" my way through it. What I didn't understand was the physical changes weren't of growing older, they were something more dangerous. Not only was the beast attacking my physical condition, it was causing mental issues (depression) as well. Looking back now, I can see where the condition had a part in the demise of my first marriage, it had an affect on my relationships at work and with my circle of friends.

Two years after my divorce I met my current wife on line in an AOL chat room...... one of those intellectual groups, not the freaky ones. We conversed on line for a little over 2 years before we ever met face to face and this was way before AOL had the unlimited use plans. Two years after we were married in 1998, I was diagnosed. At least I had a cause for all the problems and symptoms..........I had a foe to battle. I wasn't going crazy. I wasn't just getting old or lazy. There was a very good reason for the Carpal Tunnel in my wrist. There was a very good reason for the fatigue, the headaches, the stiff and painful joints and muscles, etc., etc., etc..

Believe me, I know exactly where you're coming from and what you're going through........... trust me, if I had a dollar for every time one of my kids, family members, ex-wife, colleague, or friends said "but you don't look sick", I could retire without worrying about retiring...... or the future. Look, Acro isn't one of those common conditions, about 3 in 100,000 cases of pituitary tumors will have Acromegaly......even the medical fields are stumbling through this beast. The physical elements are one thing......the mental impact can be and usually is something else. I think my first Endo recognized this and took extra time just to talk with me during each visit to see where my head was. After my first shot break to see what affect it would have on the IGF-1 levels, when we got back the blood work results, she handed me a new prescription for my Sandostatine shots and a referral to a mental health counselor. It was the smartest decision I made in a long time to go talk with her...........one made after sitting at our kitchen table one night for about 2.5 - 3 hours in the dark with a loaded .357 magnum in front of me, going through all the reason why I should or shouldn't just take the easy way out. Peter, I wish I could say it was some altruistic reason why I'm still here today typing this to you, but it wasn't. The God's honest truth is I was afraid it wouldn't work and that failure would be just more pain to deal with.......

Peter we are "normal" people in every aspect...........we just happen to have a condition that isn't so obvious. My counselor asked once, if it were some other condition, say congenital heart disease or inoperable brain tumor, would it make a difference? It took me some time to work through that answer.

Peter, our family and friends may not ever understand or comprehend.exactly what Acromegaly is or what it does to us. Along with our fighting the beast, we have to be teachers as well.....and even then they may not understand. I can't understand why us........and I guess I don't have to. The day I had my first transsphenoidal surgery Peter, I was number 3 on my surgeon's dance card...........the first 2 patients were both transsphenoidal surgeries like mine for the same reason. Their tumors were both microadenoma in nature, but both had been diagnosed with Acromegaly.........one was 16 months old..........the other was 22 months old.

Peter it took me 9years to get my levels balanced and get this beast under control. Even then, that balance is tricky......a cold, stress, too much exertion, not getting my rest, not watching my diet.........anything can throw it out of balance. This is why it's imperative that we keep up with our blood work and ALL our levels.....it's not just the HGH or IGF-1 levels. It's all of it together.

What kind counseling did you get? I thought maybe if I will get Cabergoline instead of Sandostatin, my energy levels and motivation could increase (my IGF and GH levels are not so high) what do you think of suggesting this to my doctor?

Peter, I don't think it was anything specialized as far as the counseling......it was just someone who listened to me and what I was feeling and going through. Someone who helped me see it through a different perspective. Sometimes just being able to talk about it with someone who understood other than my wife. It was a dark period and now it's not so dark. The fog (depression) is out there just on the horizon....sometimes it moves in like a fog bank with the tide and when it does I fight it. I journal, I talk with other folks fighting the same battle (here)...mostly I talk openly with my wife.

I think the mental aspect of this condition is sometimes forgotten by all the medical folks. It has to effect our mental levels as much as it can effect our physical systems.......if not from a chemical (hormonal) standpoint, just from the emotional aspect of how it alters our lives.

As to the sandostatine med question.....I'm not familiar with Gabergoline. How are your other levels (thyroid, adrenal, testosterone)........if the sandostatine is controlling your IGF-1 levels (HGH) I would be hesitant to mess with that......

I have hypothyroidism, I take T4 hormones everyday, testosterone levels were also too low, but now it's ok with that, I have to take it through a several months, and then I should have good levels after that).

My surgeon said, that after a year of Sandostatin taking we will try to quit this med, but I'm affraid that GH test after glucose intake will be bad because, I still have symptoms of this illness. Sandostatin makes me really bad bulge, it also affects digestion, which can cause vitamin deficiency. Although I don't have any changes in appearance, I'm struggling with really bad cystic acne, which doesn't respond to any dermatological treatment. It affects really bad in self-esteem, trying to get a girlfriend. I just think I am just not atractive any more, and won't be until my acne will gone.

Sometimes I think if there is someone like Antonio Silva, heavyweight UFC fighter, really professional athlete..In theory I could also overcome the barrier of Acro to achieve my goal and dreams, but I don't know how to build so strong mental strength to ignore fatigue and do what I would like to be done. Do you?

Hi Peter,

I'm in a similar situation to yourself, surgery in 2014. Six months after surgery my levels dropped within 'normal limits' (albeit it the highest side of normal) and, fortunately, have stayed there since.

However, I still really struggle with fatigue. I'm not on any medication and I cannot find any explanation online as to how IGF-1 can cause this fatigue.

I don't really have anything to add, Lifespalette has summed it up very well. One thing I will echo though is that there are things with this condition that will be out of our control that hopefully treatment and medication will help with. But there are things that are within our control and I make damn sure that I'm all over those. For me, sleep, diet and exercise are the 3 key things that have massively helped me to feel better. If I slip up on any of those then I know I'm going to feel rough for the next few days. I rest when I can feel my body getting tired. Some days I wake up and I know instantly that I'm going to have a bad day. I'm a lot more aware of that now; I used to get so frustrated and try and push myself to get over it but ended up crashing completely. Now, I just accept it and now plan to have a relaxing day with my family instead. I have learnt to adapt to this condition, not try and fight against it or push through it.

I managed to build my energy up slowly. I'm lucky that I have a dog to walk twice a day. Those short walks turned into longer walks. I've just started to lift weights again too. Combined with a healthy diet (I've virtually cut out sugar, reduced alcohol etc) and plenty of sleep, my energy levels have increased a lot. I've still got a way to go but I'm getting there. My advise is to find something you enjoy doing, anything to get you out of the house, go for a walk, a run, kick a ball around a field...anything.....so long as you enjoy it.

Reading your posts though, you seem quite hard and critical on yourself. The mental battle is quite possibly the hardest one I had that I had to overcome. Sure, I still have days where it gets on top of me but, as Lifespalette said, talking things through or having somebody to vent off at is a big help. Maybe have a few sessions with a counselor? If you can't do that I'm sure nobody would mind if you came on here and vented - we've all been there after all. I'd be happy to chat offline too if it's easier.

Cheers,

Tom

Hi Chili1978, thanks for the comment and support. I will consider counseling, maybe it is a good solution in my case. Did you asked your doctor, how is it possible to have acro symtpoms after normalizing blood results, and having MRI scan which doesn't show any residues of tumor? I know that some changes are irreversible, but if you have also really good days without fatigue, maybe it's not necessarily directly related to Acro?

Good question - I can only assume that it's because that although my IGF-1 levels are within range, they are right on the limit.
I'm certain that these symptoms are from acromegaly. They are the exact symptoms that I had prior to surgery and although they are fairly mild now in comparison, some days they can be crippling.

I'm not sure if you've read this, but it makes for an interesting read;

http://www.news-medical.net/news/20110831/New-guidelines-for-the-treatment-of-acromegaly-a-serious-growth-hormone-disorder.aspx

Im probably going to get banned can I say this on here...I simply stick a finger a very ladylike finger I will add...to the conditon and say JokeyJ one acrobeast NIl........yes you can get to a good place..I came from an empty shell....fought back......Lifespalette ..I have to do some writing LOL could you write for me so love youre style....keep strong Peterpoland

Chili1978, how do you deal with fatigue in your job (if you're working of course)? Yes, I have read this article. In fact, I didn't know for a long time after diagnose and even surgery that some changes like tiredness could exist even after complete surgery. I thought if the tumor is a one only reason of this illness, logically we shouldn't have any symptoms, besides of those existing all the time like appearance changes.

BTW, I found interesting article about lowering IGF-1 with nutrition http://www.peaktestosterone.com/How_To_Lower_IGF-1.aspx

I have another question in my mind - do you guys know, how this condition affects joints? Why there are days when they hurt and days without any pain? What kind of changes Acro does in this matter?

hi Peter
Have you been checked for Sleep Apnoea quite often associated with Acromegaly and presents with some of the symptoms you mention.

you ask about joint problems
peter I myself am at the stage now where I take what my Dcos. say with a pinch of salt. Over the years I have been told that my aches and pains are a natural part of aging BUT I know no one with the same problems none o)f my family or extended family (and I come from a large family) none of my friends have anyway near the problems I have, they all enjoy an active life participating in sports etc Icant.
I have to date had 5 surgeries on joints I have 2 metal plates and 12 screws in my bones. Two weeks ago I had to go for more scans resulting in a new list of bone and muscle problems which are
rotator cuff calcification
prominent cystic change in humeral head
marked narrowing of the intervertebral disc c4/5-6/7
spiking in the uncovertebral joints
slight kyphotic alignment
acromioclavicular joint widening
radiculopathy upper dorsal spine
going to need 3 different surgeries to put all this right. Guess what docs. said....... yip its my age,

I believe its because they cant control my Acromegaly they don't know what to do next and are afraid to admit it
I hope you get lucky and don't get any worse

I have severe sleep apnoea caused by the disease.
I now sleep with a machine that pushes pressured air through my nose, so my airpipe doesn't get blocked during the night.
It helps.

Next to that I need to avoid too much stress and sleep when I feel like it. This means I need to reflect on how I organize my professional life... not easy

I also watch what I eat, try to lose some wheigth.