That's that.

Got the results back from the more involved test. Apparently my levels are exactly at the limit of "normal" so medication will not be necessary.

It's been about 1 year to the date now and this last (hopefully THE last) round of health problems has been a struggle.

It's a great blessing to have yet another new lease on life.

I've had a lot of reactions and struggles within myself, but I think I'm in a good place right now.

Gratitude, grace, appreciation of the little things, relationships, acceptance, peace.......these are a lot of the attritubes you can embrace when finishing a journey like this and I hope to keep this at the forefront of my life as I move forward.

If you are recently diagnosed and stumbling across this blog for the first time, please stay calm and learn. Feel free to e-mail me if you have any other questions.

Thanks to everyone who helped me out and God bless you all who have yet to beat this problem.

So long.

Blood work for HGH levels

Sometimes I wish I had a dog's life. But only if it was similar to my parents spoiled rotten cocker spaniel.

Anyway, I went in to the Endocrine testing clinic for the third time.
This was a repeat of This test from last year... (basically you get hooked up and drink a sugar drink and they take samples for three hours)

It went fine, but I felt kind of dumpy afterward.

Anyway, I believe I am going for another IGF-1 test in about a month and then at that point they will have all the information they need to decide whether or not I should start on medication.

Have a great autumn everyone!

Met with the Endocrinologist today!

So I had my follow up today.

The IGF-1 level is now 320.

This is good news....with a P.S. at the end.

Basically, as you have seen from previous posts, someone my age should have an upper most range of about 306 for an IGF-1 reading. I am still 15 points above the high end of the range.

Sooo.....I am doing another sugar drink test, like I did last year. They are going to take my blood over the course of a few hours and after drinking sugary drinks. Somehow this gives them a more accurate HGH reading.

After this happens my Doctor will have an exact and precise level of where I am at. If it is still a little over the limit then medicine will be the next step. Parlodel is what is recommended.

I guess the decision will be, do I take dopamine stimulators that suppress HGH production? Even though I'm almost normal? If I was a few years younger the 320 would be normal. Is it really THAT big of a deal to be 4% higher than what is ideal? A big enough deal to take medication with potential side effects for the rest of my life?

I'll wait to see what the more precise results show when I do the sugar drink test. If any of my reads have advice on this send me a note.

All the best everyone.

Colonoscopy.

Okay, this was a bit intense.

Because Acromegaly causes HGH levels too be way to high, sometimes the side effects can be organ growth...enlarged heart, leading to heart failure for example.

This is also true of the large intestine. Growths called polyps can form. They are basically little lumps in the large intestine. If they continue to grow, (and with high levels of HGH raging in an Acromegalic body that is likely) they can become cancerous and getting colon cancer is not one of the easier ones to beat.

So I prepared by having a clear diet...basically a juice fast, with popsicles and soup broth. Then on the day of the procedure you fast and stop the water drinking as well.

(There is also a big jug of Colyte you have to drink that helps push water through your bowels...not fun)

I didn't want to be sedated for the procedure so that I would have a clear recollection of everything for this blog....

Just kidding.

I just didn't want to go through the hassle of being escorted home etc.etc. So I did it without the painkillers. If you are going to do this....take the pain killers.

They wheeled me into the room and a Doctor and Nurse were preparing. Basically I rolled onto my left side and the Doc proceeded to stuff a camera/fibre optic cable up my ass...inch by inch by inch by inch by inch by inch by inch by inch by inch by inch by inch by inch by inch by inch by inch by inch by inch by inch by inch by inch by inch by inch.......you get the idea.

It didn't "hurt" in terms of pain, but it was weird and totally uncomfortable. Sort of like extreme bloating with an occassional cramp.

The nurse asked me if I was doing okay as I realized I was started to hyperventilate just from the stress. I said, "Not bad" but in my mind I was like, "What the Fuck! Why?!?! Why!?!?"

And then A-Ha started playing on the radio.

Perfect.

I mentioned to the team that I was just thinking I could use some A-Ha.

Great soundtrack for having a camera stuffed endlessly up your ass.

They made their way to the small intestine. This is where the connection between your digestive intestine connects with you waste disposing large intestine. That's as far up as they go. It looked fine.

On the way out they did a double check.

They did find one little polyp close to the exit. It was the size of a pencil lead...tiny. Apparently they are common in everyone and they told me it was probably nothing, (I've heard that shit before).

Anyway, it'll get labbed up and that should be the end of it. (No pun intended)

Later skaters!

(**August 19th update** - The results came back fine-)

IGF-1 is now at 356

Got a call from my Endo today...

Did a round of follow up blood and urine work.

It was all normal.

The IGF-1 level came back as 356.

Now, 356 for an IGF-1 is still higher than normal. Here is a list of ranges for people based on age...

(At 33, you an see that I am still slightly over the normal range, but considering my number used to be something 800-900, I am still counting this as a blessing. Plus, the Doc said it is standard to wait three months for the IGF-1 level to normalize and I did mine at month two because the surgeon needed a conclusion for a presentation he was making about me!

Anyway, it might fall a bit more, we'll see)

[11] (in ng/mL) Reference ranges for IGF-1
Age	Females		Males
	2.5th centile	97.5th centile	2.5th centile	97.5th centile
20	111	423	156	385
25	102	360	119	343
30	94	309	97	306
35	86	271	84	275
40	79	246	76	251
45	73	232	71	233
50	68	228	66	221
55	64	231	61	214
60	61	237	55	211
65	59	241	49	209
70	57	237	46	207
75	55	219	48	202

Couple of other changes I've noticed

Well...it's been a couple of months now since my surgery and I'm feeling great!

I did want to point out three other changes I've noticed.

#1. Loss of muscle tone.
When your HGH is more than double normal, you feel a lot of side effects...however...one "benefit" that I didn't realize I had was a naturally high level of muscle tone.

I am 6' 2" and weigh about 250 pounds. People always used to be shocked...shocked...when I told them how much I weighed. Mainly because I didn't look like what they imagined 250 pounds looked like. It was packed on evenly and somewhat firmly. I go to the gym and favour weight lifting, so I just thought my physique was normal.

Now that the HGH has been corrected, I've noticed that the muscle has dropped off. My mother was saying that my legs look thinner. I didn't think much of it at the time, until I noticed that my arms were skinnier too. Then after about a month I noticed the "muffin top" around my waist when wearing my regular jeans.

I began wondering what the hell was going on? I thought it might just be that I am drinking more since the surgery and maybe retaining water...no...that's no it.

After some internetting, I found that this is a side effect others have noticed as well. As a result I have cut my calories and am trying to step up my fitness and it's going well. This is simply the new normal and I have to get used to making a bit more of an effort to stay fit and trim.

#2. Dry skin.

Now granted I live in Canada and this has been a long dry, cold winter. I have, however, noticed that my skin is slightly more dry than normal. This is a good thing really, because my skin used to be oily. As changes have occurred my skin has dried out.

#3. No more alcohol.

I found out the hard way that alcohol pushes me back toward Diabetes Insipidous. ADH is adversely effected by alcohol...(this is why drinking a couple of beers, sends people to the bathroom).
The problem for me is that I have a slightly less than 100% function posterior Pituitary gland, so when I drink alcohol, I really really really have to go to the bathroom.
No more alcohol for me.
(Which sucks...I like bourbon and beer...sigh)

((**August 19th update - My drinking levels have returned to normal and having a beer or a bourbon is most likely fine now.---Although I am hestitate to make an attempt---Maybe for the best, ;-)

Follow ups

Hi Y'all!

So I had a couple of follow ups with the Doctors. Nothing much to mention to be honest.
My Endocrinologist said my hormone levels and blood work came back normal.

She said they will test the IGF-1 levels in about couple months or so. I guess they like to have a lag time between the tumor removal and the blood test of IGF-1 in order to ensure enough time has passed to have a stable result.

Seems weird that it would take so long, but I suppose after years of high HGH levels your body needs time for secondary results to normalize.

Speaking of secondary results...my blood pressure seems to be normalizing as well. My normal dose of medication for high blood pressure is proving to be too much now. It has been cut in half because I was noticing symptoms of too low blood pressure.

I also had slightly higher end blood sugar readings and the Doctor said that will probably drop as well.

Great news!

I also met with the Neurosurgeon and he said everything went fine. I am hoping to get a video of the surgery to add to the site. He said it was interesting. Apparently the tumor grew on the side and spread around the back of my pituitary so they basically lifted up the gland and scraped everything out from behind it.

Anyway, no new updates for a couple months now until I get some follow up results.

See you in May!

Video Blog #2

Just a quick update...

Headache

One thing you will need to watch out for is headaches.

Apparently, screwing your head to a table and cutting through two layers of sinuses in order to bash around a crucial organ in the centre of your skull for two hours causes a headache later on.

You'll notice this when turning your head or walking. It feels like there isn't the right level of shock absorbers for your brain. Sometimes if you just move about and think it's not that bad, the headache will arrive after the activity.

TAKE IT EASY.

Once I was unhooked from all the medical gear, I was eager to walk about. Don't push yourself. Lay in bed and read. It takes awhile.

----

I got released from the hospital after five days and they sent me home with a nutty pot for sinus cleaning and a nose spray for that hormone water stuff I mentioned in a previous post. (The water retention is normal now, they just wanted me to make sure I had the spray if it was needed)

Two symptoms upon returning home. Fatigue and headache.

I went out for breakfast with my parents and the drive to the restraunt and back was enough. I needed a couple of Tylenol and sleep. Moving around isn't good for the brain.

After about three days at home this symptom subsided and I began feeling more normal overall.

It is now January 29th and it has been 11 days since the surgery. I'll get another video blog entry up here next week and you can see if you notice any differences in my face. (It's not that radical, I'm only about 5% sexier...but really 5% added to 100%...that's only 1/10th away from too sexy!)

*Note- Math calculations may vary.

Home From the Hospital

After five days I have been discharged from the hospital. My blood work was coming back normal and I did a follow up MRI, which showed NO TUMOR LEFT.

The Doc got it all.

The Endocrinologist prescribed me a nose spray to supplement my water hormone levels, but that will just be temporary.

I also have to use a nutty pot in order to keep my nose clean from the inside out. Sometimes there can be complications with nose bleeds or infections, but I haven't noticed anything. My sinuses are finally cleared out and I am able to breathe threw both nostrils.

On a side note....when I was a kid I got hit in the face with a clump of dirt and my nose was broken. All these years I have had a deviated septum. The Ears, Throat and Nose Doc fixed that for me as part of the process, so I can for the first time in 25 years...breathe easily through both nostrils.
I think it may have actually straightened my nose a little too.

I feel like Benjamin Button. The lines in my face have receded, my tongue has shrunk, my eyes are bigger and less wrinkly, I have lost about 15 pounds during this ordeal and my nose is straighter.

Now I just have to take it easy and recoup on my own turf.

More later...

Changes

Upon waking in the recovery room, I put my hand against my forehead.

"What the hell?"

My forehead felt different. It felt boney. The skin felt thin.

I kept running my fingers over my forehead and although it was a subtle change...it was a change.

After a day or two of recovery, I looked in the mirror and it was shocking to me. My forehead was far different. I used to have deep chubby lines along my forehead and as I was agining I was getting Clint Eastwood style vertical lines coming down from my hair line.

The lines were still there, but they were flat. I raised my eyebrows and this brought the lines back, but not as much as they naturally used to be.

It felt great to see something so immediate.

Sweating.

Anyone have this problem?

It had been so long that I was accustomed to dealing with excessive sweating that I had forgotten what normal was. I used to take two showers a day in the summer and always wore an undershirt when wearing a dress shirt like the dude above in hopes that the under shirt would soak up the sweat...even WITH underarm deodorant.

It was within the first day that I noticed this was different.

Not sweating, "just cuz"...is now the norm for me.
I can sleep through the night without bouts of sweat. I can sit cross legged without sweat starting to form behind the knees. I can walk around without a low grade sweat breaking out just as a matter of activity.

My Mom noticed a lot of subtle changes once she started looking for them. My eyes are bigger and my face is subtly softer/thinner.

My tongue.

I have a big tongue and Acromegaly has made it bigger, to the point where it was affecting my speech. Sometimes if I mumbled it would sound kind of tonguey. Like Chef Jamie Oliver. Less clear and sharp.

The size of my tongue has been reduced. Not a lot. But enough to notice.

These are the big three changes I have noticed.

I imagine at this point the changes will level off. My hands and feet look the same to me and of course bone structures like my jaw will not return to normal, but changes have happened and I love it!!

Be prepared for a transformation!

More later....

Recovery

After my night of endless drinking I finally began to feel better. I got a shot of Desmopressin. So the crazy drinking stopped. As the trauma of surgery began to subside, my normal production of Vasopressin began to return as well.

The lab technician took a lot of blood to make sure hormone and electrolyte levels were correct. Apparently Cortisol levels are commonly screwed up temporarily from surgery as well. I lucked out and didn't have this problem.

So there I was, finally saturated with water, still hooked up to a catheter, leg compression devices to avoid clots post surgery (a bit of an overkill I suspect, but I left them on), mulitple IV's, an arterial line into my hand from surgery that monitors blood pressure from heart beat to heart beat, and a mat of 4X4 gauze taped under my nose.

There wasn't much pain, but my head felt like sore and delicate, both inside and out. I felt my temples and around the rig of my head and I had peanut sized lumps under the hair. It was then that I realized that they SCREWED MY HEAD TO THE TABLE!

Seriously? Couldn't they have used a strap? Oh well. I can't complain and I suppose when you're dealing with a matter of millimetres you can't have the patient even breathe deeply without potentially cutting something you shouldn't.
(The lumps have since receded and as I write this I can barely tell where they were.)

My sinuses were blocked completely. Every few hours I would change the gauze under my nose and it would be soaked with blood and not. Not pretty.

Little by little I became unplugged from the technology. The catheter came out at my request...."Excuse me...could you remove this tubing from my penis?"

The leggings came off.

The IV's came out as did the artierial line.

Then I was free!

Moving around was a pleasure. I had a shower and started eating some clear meals...jello, broth...etc.

Then the meals became real meals...potatoes, vegetables...etc.

After the first couple of days, the pain wasn't too bad at all. I took a couple of Tylenol one night, but when lying still it was fine. The nurses were great and doting. Make sure you keep them informed about your needs and how you're feeling. They need to keep serious records for patients that have had serious surgery.
If you're not sure who your nurse is just look for someone in a uniform like this...

* Note - Uniforms may vary.

Diabetes Insipidus

Thirst.

After waiting in the recovering room for a hospital bed away from the surgery area, I began to develop thirst.

I wasn't allowed to eat or drink for about 12 hours before the surgery, so I was thirsty anyway...but after 24 hours with very little fluid and the onset development of Diabetes Insipidus...my thirst was outrageous.

First, a little info about Diabetes Insipidus...Learn about what Diabetes Insipidus is...

I wasn't prepared for this side effect. I had multiple IVs and a catheter hooked up, so when they moved me to my room I requested some fluid to finally quench my thirst. The attending nurse turned into a cocktail waitress and I drank roughly 8 litres of fluid (water, ginger ale, apple juice, ice tea) over the course of a night.

The next day the Endrocrinologist injected me with an artifical hormone that helped me retain the water in my body, but up until that point...I was bone dry thirsty. So thirsty it caused actual pain.

This has since proven to be a temporary condition due to the trauma of surgery on and around the pituitary gland, so I am feeling back to normal.

To be continued...

Surgery

So if you look at the pituitary fossa...that's where the tumor I have resides.

I got up at 5am and went to the hospital with my parents. I checked in and went up to the change rooms. I stripped off my clothes and wore hospital gowns and gear. A bunch of other people began trickling in for their surgeries and we all waited for the process to begin.

Eventually I was taken to the operating room where my operation was to take place. The nurses prepared me for my MRI and the process was much the same as I have documented on this blog.
Then the Doctors arrived. My neurosurgeon and the nose and throat specialist and the anestheiologist came in. They began hooking up the giant television screens that they would be using for the cameras up my nose.

I think I annoyed the nurses with my questions and comments, but I was a bit nervous so they can cut me some slack.

I got a needle in my left hand and they started an IV.

Very shortly after that I slipped into darkness.

After what seemed like 5 seconds, I was pulled out of the darkness by a nurse telling me that my operation was over.
I was then wheeled to the recovery room where I slowly regained consciousness and strength.
I was unable to breathe through my nose and I was outrageously thirsty, but the operation was now over.

To be continued...

Cortisol test

So I had to get a pre-operative Cortisol test done.

This is because when operating on the pitituary gland, the surgeons need to make sure that they hormones produced in the gland can keep your adrenal glands pumping and maintain your bodies ability to cope with the trauma of surgery.

The way they test this is to inject you with insulin and crash your blood sugars which then in turn causes a response of cortisol being released in order to counteract the stress of too much insulin.

This test is taxing.

It's what diabetics feel like when they don't eat enough and take too much insulin. Shakes, sweats, heart racing, tiredness.

My body was pretty resilient and kept rallying before they could get the sugars low enough.

The nurses would then have to inject me with even more insulin.

One nurse said she'd never injected anyone with this much insulin before.

Anyway, it worked and the cortisol levels were fine. My adrenalin is a-okay.

What to look for if you suspect Acromegaly

Met with the Anesthesiologist

I got up today and walked to the hospital in the freezing brutal winter we are having. Global Warming? Not enough if you ask me.

Anyway, I met with the nurse and she did an ECG on my heart. All good.

Then another nurse came in and took my blood pressure and asked me some questions about medications that I'm taking and what not. She did the height and weight charts. I am almost 6 foot, 2 inches and I weigh about 254 pounds.

I am a fat bear. Luckily I wear it well and I've usually been active through my life, but I enjoy my meals too much and it has caught up with me. I need to lose some fat, so that I'm not such a fat ass.

So then another older lady entered the room. She wasn't a nurse, she was an Eastern European researcher that worked for the hospital and the University of Calgary. She wanted me to sign over the rights to my tumor so they can study it and research it and learn about it for future benefit. I think she also mentioned something about cloning me using the tumor as a jumping off point for the DNA, this is so they can start an army of tumor riddled fat acromegalic super solider clones.
I might of just been daydreaming about that last part.

Then I finally met with the Doc. He asked me about family history and surgical history. Nothing too major.

I was then handed a bunch of paper with info about the day of the surgery. Stuff like, don't eat or drink within so many hours...don't bring personal items with you upon admission....etc.etc.

Pretty straight forward.

On Wednesday I go for another test...and then I'll be all set for Next Tuesday...Surgery!

Had a CT Scan today

You basically lie in a tube.

It took about two minutes, which I found surprizing. The MRI took about 30 minutes and required contrast injected into my veins. This was quick and painless by comparison.

Apparently they wanted to get a map of my sinuses and bone structure so that the bone drilling guy has a proper idea of how to tunnel into my skull without killing me...so that's good.

I was told once that a CT scan has roughly the same radiation as 300 X-Rays! Yikes.

Between this...dental x-rays...airport scanners...cell phone use...and the radioactive iodine I had to drink in order to cure my thyroid cancer...I'm probably going to turn into the Hulk!

Had an ultrasound on my heart today!

Started off my day, half naked in a darkened room with two attractive women and a bottle of lubricant.

(Get you mind of the gutter!)

It was an ultrasound on my heart!

Here's the thing with acromegaly. If it goes untreated for years on end, your heart can become enlarged and the valves and whatnot can start to become weakened of problematic due to that gradual enlargement. Heart failure can be what some acromegaly patients can die from.

So I got this ultrasound in order to make sure my heart is still totally functional and there aren't any problems forming.

It took about a half hour and consisted of me lying on a table shirtless while they used a wand against my chest in order to take pictures of my heart beating.

If this is a step you have to take in your journey, don't fear it. Doesn't hurt and it is really easy.