My personal resume of Acromegaly

My Cover letter 

All of these symptoms and probably more that I just don’t remember at this point, and I’ve had MRI’s, blood tests, jumped from doctor to doctor and no one had a clue, I’ve always considered myself healthy and just thought I was getting old.I thought this was normal ageing process. Even up until this year I thought I was pretty normal/healthy.

click "read more" to access 2nd half of the blog below  

Run down on MY symptoms

 This is just the run down on my symptoms (means its not my symptom):
  

• Increased incidence of glucose intolerance or frank diabetes mellitus, hypertension, and cardiovascular disease
• Thryroid
• Increase risk of different Cancers caused by excessive and prolonged GH and IGF-1 in the body 
• Memory loss, forgetfulness and the ability to focus and concentrate,impaired thought process
• Soft tissue swelling of internal organs, notably the heart with attendant weakening of its muscularity and the kidneys
• Enlarged liver, heart, kidneys, spleen and other organs
• Increased incidence of congestive heart failure, which might be due to uncontrolled hypertension or to an intrinsic form of cardiomyopathy attributable to excess GH/IGF-I.
• Shortness of breath  
• Chest pain
• Palpitations or rapid heart beat 
• Easy fatigue, decreased muscle strength (weakness)
• Poor exercise tolerance
• Brittle bones, low bone density
• Back pain, Arthritis, limited joint movement, swelling of the bony areas around a joint
• Pain, numbness, tingling, or weakness in hands and wrists (carpal tunnel)
• vocal cords, husky voice due to enlarged vocal cords and sinuses resulting in a characteristic thick, enlarged tongue deep voice and slowing of speech 
• Reduced sex drive and in men erectile dysfunction
• Abnormalities of the menstrual cycle and sometimes breast discharge in women
• Infertility
• frequent bladder infections
• Increased thirst or urination 
• Difficulty breathing during sleep (sleep apnea), severe snoring and frequent brief interruptions in night time breathing (sleep apnea) due to tissue swelling that blocks your upper airway, causing poor sleep and excessive sleepiness during the day
• Nausea
•  Loss of smell and taste
• Irritability, anger easily,moodiness and Depression
• Fatigue 
• Vertigo/Dizzyness
• Fainting
• Running into objects, bumping into walls and people
• A symptom where a person is intolerant to changes of temperature particularly heat, hot flashes

Physical changes:

• Soft tissue swelling visibly resulting in enlargement of the, nose, lips and ears. Generalized expansion of the the skull at the fontanelle's. Pronounced brow protrusion, often with ocular distension 

• Increase in ring size or tightness of rings (due to hand swelling, sausage like fingers.) increase in shoe size (due to foot swelling. Thickened skin, especially on palms of hands or soles of feet Enlarged hands and feet, widenedfingers or toes due to skin over growth with swelling, redness, and pain
• Increased chest size causing the appearance of a barrel chest

• Small skin outgrowths skin tags, thickening of the skin, skin is oily are possible markers for colonic polyps. Patients with acromegaly are also at increased risk for polyps of the colon that can develop into cancer.
• Excess hair growth in females
• Weight gain (unintentional)
• Increased perspiration accompanied with body odor

• Hypertrichosis, hyperpigmentation, and hyperhidrosis may occur
• oiliness, acne
• shortened life span
• excessive ear wax 
• Teeth and Jaw problem TMJ, New overbite, under bite, or spreading out of teeth

These symptoms didnt happen all at once it happened gradually over time, so it was hard for me and my doctors to see what was wrong. which leads me to my next blog......

The Tumor,Growth hormones and IGH-1 is the cause of the acromonster

Pituitary tumors can grow quickly and be aggressive, showing signs and symptoms rapidly. While other tumors can grow slowly, causing signs and symptoms to develop and progress slowly over several years. The longer the Growth hormones and IGF -1 stay in your system the more damage it causes.

The doctors dont know how long Ive had my tumor, but according to my symptoms the doctors thinks Ive had the tumor that has caused me to have Acromegaly or the Acromonster for about 8 years now. 
Because my tumor didn't start growing til I was an adult I have Acromegaly, if I were younger and the tumor started I would of be a Giant.

Even though I'm not tall in stature I am still growing, I'm just not growing in height, certain parts of me are growing while the rest of me is staying the same. Causing this disease to be almost debilitating and a daily struggle to continue living a "normal" life and at times leaves me frustrated, in pain but it makes me push myself that much harder to stay as normal as possible.  

Some days I have good days and some days I have bad days

The symptoms can be divided into 2 groups at this point, one being the effects of the tumor pressing on the surrounding tissues. Two being the excess growth hormone GH and the IGF-1 in the blood stream (and vary from person to person):

(I got allot of this information from my own experience and allot of other info from different websites and I don't have time to cite right now, Ill probably add that later, the pictures from google)

First Symptoms due to local mass effects of the tumor, depending on the size of the tumor:

• Headaches and visual field defects are the most common symptoms. Visual field defects depend on which part of the optic nerve pathway is compressed. Headaches and partial loss of vision are the common symptoms
• Tumor damage to the pituitary stalk might cause hyperprolactinemia due to loss of inhibitory regulation of prolactin secretion by the hypothalamus. Damage to normal pituitary tissue can cause deficiencies of glucocorticoids, sex steroids, and thyroid hormone.
• Loss of end organ hormones is due to diminished anterior pituitary secretion of corticotropin (ie, adrenocorticotropic hormone [ACTH]), gonadotropins (eg, luteinizing hormone [LH], follicle-stimulating hormone [FSH]), and thyrotropin (ie, thyroid-stimulating hormone [TSH]).

Symptoms due to excess of GH/IGF-I:

• Excessive height, gigantism (when excess growth hormone is produced as a child) causing gigantism. Prolonged exposure to excess GH before fusion of the growth plates causes increased growth of the long bones and increased height.

People that suffer from Giantism go through there own set of emotional and physical problems, people with Giantism are in pain daily. Despite what people think people with Giantism are not physical strong at all, there bones are brittle and there muscles are weakened.  

• Increased incidence of glucose intolerance or frank diabetes mellitus, hypertension, and cardiovascular disease
• Increase risk of different Cancers caused by excessive and prolonged GH and IGF-1 in the body 
• Memory loss, forgetfulness and the ability to focus and concentrate,impaired thought process
• Soft tissue swelling of internal organs, notably the heart with attendant weakening of its muscularity and the kidneys
• Enlarged liver, heart, kidneys, spleen and other organs
• Increased incidence of congestive heart failure, which might be due to uncontrolled hypertension or to an intrinsic form of cardiomyopathy attributable to excess GH/IGF-I.

• Shortness of breath  
• Chest pain
• Palpitations or rapid heart beat 
• Easy fatigue, decreased muscle strength (weakness)
• Poor exercise tolerance
• Brittle bones, low bone density
• Back pain, Arthritis, limited joint movement, swelling of the bony areas around a joint
• Pain, numbness, tingling, or weakness in hands and wrists (carpal tunnel)
• vocal cords, husky voice due to enlarged vocal cords and sinuses resulting in a characteristic thick, enlarged tongue deep voice and slowing of speech 
• Reduced sex drive and in men erectile dysfunction
• Abnormalities of the menstrual cycle and sometimes breast discharge in women
• Infertility
• frequent bladder infections
• Increased thirst or urination 
• Difficulty breathing during sleep (sleep apnea), severe snoring and frequent brief interruptions in night time breathing (sleep apnea) due to tissue swelling that blocks your upper airway, causing poor sleep and excessive sleepiness during the day
• Nausea
•  Loss of smell and taste
• Irritability, anger easily,moodiness and Depression
• Fatigue 
• Vertigo/Dizzyness
• Fainting
• Running into objects, bumping into walls and people
• A symptom where a person is intolerant to changes of temperature particularly heat, hot flashes

Physical changes:

• Soft tissue swelling visibly resulting in enlargement of the, nose, lips and ears.

 

• Generalized expansion of the the skull at the fontanelle's. Pronounced brow protrusion, often with ocular distension

• Increase in ring size or tightness of rings (due to hand swelling, sausage like fingers.) increase in shoe size (due to foot swelling. Thickened skin, especially on palms of hands or soles of feet Enlarged hands and feet, widened fingers or toes due to skin over growth with swelling, redness, and pain
• Increased chest size causing the appearance of a barrel chest

• Small skin outgrowths skin tags, thickening of the skin, skin is oily are possible markers for colonic polyps. Patients with acromegaly are also at increased risk for polyps of the colon that can develop into cancer.
• Excess hair growth in females
• Weight gain (unintentional)
• Increased perspiration accompanied with body odor

• Hypertrichosis, hyperpigmentation, and hyperhidrosis may occur
• oiliness, acne
• excessive ear wax 
• Teeth and Jaw problem TMJ, New overbite, under bite, or spreading out of teeth

Through my daily struggle seems hard at times and my bad days are BAD, I am thankful that with this  I have been given the gift of waking up with my good days and really being able to appreciate MY good days, because now my average days are good and my good days are heavenly. I was given the gift to understand whats really important in life. What it really means to live.

I think people that are "sick" and survive really understand what it means to live.

My Life Lesson:


Remember its not just my physical appearance I have to worry about its the effects this has taken on my inside.

 Just because people look healthy on the outside doesn't mean their healthy on the inside whether mental, emotionally,physically. Try to remember to be compassionate daily.



Getting back into the cause of my disease

So now that I got that off my chest and I feel better that everyone understands the pituitary gland a bit more, I feel like I can move forward. ppl actually have things wrong with their pituitary gland that could be the cause of their aches, pains, emotional pains, and mental pains and don’t realize it, that’s actually a part of the reason I wanted to put this out there.  

Drum roll for the Cause of the disease but not the actually disease

A tumor has started growing on my pituitary gland, there are different types of tumors you can have for my situation there is two types of tumors a micro adenoma and a marco adenoma, the difference is anything that is less then 1 cm is considered a Micro which is “easily” removed and they say usually wont grow back and anything that is over 1cm is considered a marco adenoman. Marco tumors can be removed “easily” but often have a higher chance of the tumor growing back. Now remembering that the Pit gland is the size of a pea and in the base of your head, my tumor has grown into a macro according to my MRI on 8/16/10 and is 1.88 cm, almost 2cm.

Which is still okay because it is still removable because most micro and macro tumors happen to grow around the pit gland which if the tumor is big enough it can crush the pit gland or if the micro is aggressive enough will ruin.Either one is not good, however it is easier to access and can be removed with little to no damage (as long as you have a good surgeon) with the chance of it growing back later.

The tumor can decide to get really crazy and grow out past the pituitary area and invade other areas.

 My tumor got bored and has grown into my sinus cavity area. This is where it gets kind of tricky for me, Which I guess I’m still learning about this part of  the whole thing, so I may have to correct myself later on with this, so it’s probably not as in depth or completely correct.

Apparently theres this soft boney tissue that holds the pituitary gland. People with the type of tumor I have the tumor would normally stay inside the boney area by the pit gland and not invade other areas.

The fun part is my tumor has actually grown THREW the boney wall that holds the gland and has grown around the right cavernous carotid artery. Where the doc said they wont go over to the sinus cavity area where the cavernous carotid artery is because if they even nicked it I could die. Ill get more into that story later. below are more illistrations

pit gland



This is the Carotid Artery/ a main vein that runs from your heart and supplys oxygen to your brain the tumor has wrapped its self around the vein



 

This is where the caverous sinus area is that tumor has grown through from the pit gland to the vein                             


 

from the pitutary gland to the sphenoid bone to  the caverous sinus area encased the vein                                                




                                            

 My life lesson:

Where there's a will there's a way

Functions of your Glands bio 101

 

The Pituitary gland is based in the middle of your brain behind your nose right in the center. they even call it the "master gland" of your body. I am very visual so here’s what it looks like,

I’ve never heard of it prior to all of this craziness. They actually say because it’s such an important gland it’s in the middle of the brain so it can be protected. It’s about the size of a pea literally. It controls all of the other glands in your body example the Thyroid is a popular gland the pituitary gland controls but there’s many more glands and hormones it controls:

Growth Hormone (GH): This is the principal hormone that, among many other functions, regulates body and brain development, bone maturation, metabolism and is essential for healthy muscles.

Luteinizing Hormone (LH) and Follicle Stimulating Hormone (FSH): These hormones control the production of sex hormones (estrogen and testosterone) as well as sperm and egg maturation and release.                                                                                                         

Prolactin (PRL): This hormone stimulates secretion of breast milk.                  

Thyroid Stimulating Hormone (TSH):  This hormone stimulates the thyroid gland to release thyroid hormones. Thyroid hormones control basal metabolic rate and play an important role in growth and maturation. Thyroid hormones affect almost every organ in the body.

Adrenocorticotropic Hormone (ACTH): This hormone triggers the adrenal glands (located above the kidneys) to release the hormone cortisol which in turn, regulates carbohydrate, fat, and protein metabolism and is essential in the stress response.

Vasopressin - Also called anti-diuretic hormone (ADH): This hormone promotes water to be reabsorbed by the kidneys and is thus essential in water and electrolyte balance.

If the pituitary goes out of wack then your whole hormonal system is out of wack. Now that I think we’ve got the basics on what the pituitary functions. I hope we all realize now if there is something wrong with your pituitary gland then your completely throw out of wack.

Tip: You should ask your self if any of thing on this list, seem out of wack for your self

Life lesson for myself: 

I should know my self inside and out, not take my body for granted  

what you say may make a impact on someones life (intro)

I would like to go into what I have that is causing my "disease", before I get into a general title of what I have, because I already know fingers will start typing away to look up the name of "disease" because theres alot to it. The internet gives you a quater of it. I know I’ve looked. That’s why I’ve been hesitant to say what I actually have. Everyone that has this disease have very different experiences and symptoms. Since I started to learn about my disease, I told one or two ppl I got the typical “it’ll be okay”, “you’ll be fine”, the famous “there’s ppl so much worse then you”, answer It made me feel like I didnt "have the right to complain, when there was so much worse out there"I started to bury all of my feelings. When I needed to expand and started slowly opening up to ppl. I neglected, joked, and laughed the seriousness this all off and someone asked me “how are you doing with this? How do you feel about everything?” after I laughed it all off and shrugged and said "it’s okay because there’s other ppl worse off" (God bless them) but it wasn’t until that person responded "yes, but it’s YOU and they are not YOU" (Sometimes the simplest things we say to ppl make a big impact.) It hit me since the first time sitting in the silence of my car by myself after finding out that I might have this disease, that I realized it’s okay to accept that I have this going on and its okay if I don’t feel okay, its okay if I don’t want to say that Im fine. I learned that I am allowed to have my own experience with this and not compare myself or the disease to other people or what they have gone through. Because of all this I wanted to keep it to myself till I found the proper way for ME to let ppl know what I am going through.

My life lesson in this is :

I should never dismiss what someone is going through, just because it doesnt seem THAT bad to ME. because I am not them, I will never really know what they are going through, so remember to open my heart before I open my ears and open my ears before I open my mouth

The start of "Simply the disease blog"

I would like to start a blog to try to explain to my family, friends and random strangers about everything that’s going, I’ve had a lot of inquires about what’s going on with me. So here is exactly what’s been going on I’ve recently been struggling to get diagnosed with a “rare disease” and trying to find treatment for it while continuing to try and balance my everyday life. I’ve decided to start a blog in order to help ppl not only know what I have been diagnosed with but to also help ppl understand the disease and understand what I am going through.Maybe this will bring more awareness and possible help ppl whether its finding signs or just emotional help. I also think this will help me continue to cope with everything and keep track of my symptoms on whether there getting better or worse and any signs I may need to bring up to the doctor. I wanted to go into a description of everything then back date everything that’s been going on with getting diagnosed, then go forward and this may take a few blogs for me to get everything I want out.  Along the way I may want to be overjoyed, rant or even cry either way I wanted to share this experience. Even if its just for my future self to look back at and enjoy.