Hi Everyone,

It's been a long time since I've updated the blog. This is a good thing though, as my treatments are just routine and nothing is changing. Everything medically is pretty stable and the journey through this diagnosis has basically ended a long time ago. 

I suppose as the years go on something could pop up related to all of this, but realistically that could be said of anybody regarding any health issue.

As of right now this journey is behind me and life is pretty darn good. Consequently I guess this blog has come to an end. I hope it has been of help to those of you new diagnosed. 

Stay strong and be well.

God bless you.

All the best,

Jeff

No News is Good News

Hi Everyone,

I have no news to report. Everything is fine.

Upping the Lanreotide dose

So the past year has been quite good. My levels have been the upper end of normal or so. My Endocrinologist, however, is aiming for perfect...so my Lanreotide dose is going from 60mg to 90mg. I've done this for a couple of months and it seems pretty effective. Haven't noticed much change in how I feel.
I'm going for a follow up in May so I'll do another update!

Happy Spring everyone!

Gall Bladder problems

Hello Readers!

I was walking across the parking lot when it struck me like lightening. Pain in my left upper quadrant. The pain resonated to my shoulder blade and it was severe.

I took some Robax and it went away.

Two days later I awoke with the same pain and I knew I had to go to the emergency room.

They took blood tests and my liver panel came back "deranged".

I had an x-ray, a catscan, an ultrasound and more blood work. They also did some kind of liver/gallbladder scan that was interesting.

Diagnosis?

I had a gallstone that passed through the duct and ended up blocking my pancreas. This caused pancreaitis. My gallbladder was inflamed and full of sludge and stones. I would require surgery for gallbladder removal.

They did it laparoscopically.

I had to be readmitted as I developed a fever when I got home. They gave me anti-biotics and I was told to rest. It took me about a week after that to feel better.

I am now back at work. Still recovering. 

I met with my Endocronlogist and she told me that even though Lanreotide shots can cause this, I should continue taking them. Now that the damage is done and the gallbladder is removed, the side effect of Lanreotide shouldn't show up in any other capacity.

Onward.

Met with Endo Doc again.

So I met with my Doc last week to go over results.

The MRI showed no change since the MRI two years ago.

IGF-1 levels are within the right range, so long as I take the monthly Lanreotide shot.

Will not see Endo Doc for 1 year.

Seasons Greetings...and lab results.

Merry Christmas and a Happy New Year to everyone.

I took a blood test about 28 days after my last Lanreotide shot. The reason for this was that my Doc wanted to see if my levels were in the right range. I took the blood test just before I was scheduled to do my next shot, so this would show whether or not the shots are working throughout the entire month.
Results?

IGF-1 = 227 with a reference range of 82-240.

Woo-hoo! Still working!

All the best everyone!

New Drug On the Way

Hey Everyone,

I know it's been awhile since I've updated the blog. That's because there isn't much news to report. I'm feeling awesome and my levels are within the right range. I'll probably have a follow up early next year with my Doctor.

In the meantime here's yet another drug that is almost ready for market. Read about it at this link...http://www.dddmag.com/news/2014/09/antisense-acromegaly-drug-shows-efficacy-phase-2

We live in wonderous times.

BLOOD WORK

I got about 7 vials of blood work done recently and there was a couple of months gap between my 3 month test shots of Lanreotide.

IGF-1 was 282...so Lanreotide it is!

Started back on the shots and will do so for the next 6 months.
Trying to get some extra insurance coverage so I don't have to pay so much, but that takes time.

Oh well, all is well. There won't be an update for awhile so good luck and God bless to all my readers. Check back again in September.

Best,
Jeff

Results!

After 3 shots of Lanreotide I met up with my Endocrinologist and got the news.

The shots worked.

My IGF-1 had a reference range of 82-240

My number came in at 229

The plan is to stay on the shot and meet up again in 6 months.

Lanreotide injection #2

Here's a shot of the Lanreotide shots.
Kind of intimidating that needle!

Anyway, it's sharp. Take a deep breath and slide away!
It burns a bit when pushing the plunger, but no big deal.

Another shot in December and then we'll see what my blood looks like.

Lanreotide

So I have begun taking Lanreotide injections.

My first shot was October 11th and I felt the results immediately. My forehead felt thinner, much like it did immediately after surgery. Not that it was noticeably bad before, but I did notice a slight change. This stuff works.

Problem?

It's like $1200.00 per shot.

My insurance pays most of it so it only cost me $250.00. I recently got married so I will probably be fully covered with my wife's policy. Nevertheless, $1200.00 is enoromous for a regular person to be able to afford. Some solutions are in order, but this isn't the blog to get into that. I'm just thankful I have this available to me and I'll let you readers know how it goes.

I took a quick overview from the nurse who gave me my first shot. Next time I'll do it myself and walk you through it. Then we'll do a blood test and see where I'm at in December.

Happy Halloween!

End of Summer Follow Up - Injection it is.

Had my meeting with my Endo-Doc and she relayed the numbers to me.

My Calgary lab said I was running an IGF-1 at 486 with a reference range of 115-307
The Mayo Clinic lab sent back a different reading of 286 with a reference range of 71-241

What does this mean?

Well, the Calgary labs are trending everyone upwards. My results have been with the lab for the past few years, so even with a lab problem I still don't like the rising numbers. The fear is that the trace amounts of Growth Hormone cells left over from the surgery are multiplying and dividing and causing my hormone levels to steadily increase.

However...

The Mayo Clinic number and reference range are roughly the same as where I was before the problem with the Calgary labs started. My IGF-1 level is basically normal for someone ten years younger than my 35 years.

I thought long ago that if the numbers were roughly correct, I'd just live with it. Due to the recent uncertainty, however, my Doc wants me to start a drug called Sandostatin. This drug is given once a month via IM injection in the butt cheek.

It costs $1500 bucks per shot, but my insurance will cover most of it, costing me about $300 out of pocket.

I'm going to do it for three months and then we'll take another IGF-1 reading and send it to the Mayo clinic. If the numbers come back way lower and the drug doesn't have any side effects, then we'll know it works and it will be an option in the future.

So...I thought this blog would be a dead reference, but I will be continuing it after all. Watch with wonder as I get my first injection! We'll see what the numbers come back at. More updates and decisions to follow.

Slow and Steady

Hi Everyone!

Well it's been 5 months since the new year began and I thought I'd pop out another post even though there isn't a lot to report.

I did some more blood work and my IGF-1 level came back as 389.

Not what I wanted to hear.

My Doctor wants me to do it again though, because she said that ALL her patients are coming back with higher numbers than normal, so she wants an 'outside the province' lab to investigate. Thus, I'm having my blood sent to the Mayo clinic in order to get a better reading.

I go in for another blood test end of June.

I'll keep updating though!

Have a great June!

New Year follow ups coming soon

Merry Christmas and a Happy New Year to Everyone!

I have some new year follow ups coming up in the next couple of months. Hopefully it will be positive news all round. Feeling good and doing well so far.
All the best to my readers. God bless you and stay strong.

Another IGF-1 reading!

So I got a physical and my family Doc decided to do a huge laundry list of blood tests and one of those tests was another IGF-1.

It came back as 280.

Same lab.

Wonderful.

Follow up.

So I met with the Endocronologist for routine follow up. My IGF-1 level came back as 330.

This was a little disconcerting since the lowest I have been was 320 and I was hoping it would stay there.

Anyway, she said that two things could happen.
#1. It could just level off and remain at 330ish.
#2. It could steadily rise until Acromegaly becomes a problem again.

I got the impression that she thought #2 was more likely since she said, "What would stop it?"
The first time around it started from nothing and took years to develop into a tumor, so now a shattered bunch of cells are still kicking around, bringing my level up just a bit beyond the ideal and they may multiply and divide until new action is needed.

We'll see.
Obliterating a tumor doesn't mean another will form from a single leftover cell. A cell can still produce HGH without necessarily growing and dividing itself.
Also, IGF 1 levels fluctuate naturally (a little bit) so maybe I just got an upswing.
Or maybe I'm just a diehard optimist!

Whatever. I feel good and the levels would be normal for a 29 year old. (I'm 34)
There will be an update in about 8 months.
Later skaters.

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.

Happy New Year!

Happy New Year everyone. To new beginnings.....

(I have a CT scan and a heart ultrasound booked)

Updates soon....

Just met with my Neurosurgeon

So I woke up this morning and walked to the hospital. Pitch black and freezing cold.

Which always makes me wonder why people a hundred years ago bothered to move here. It's bad enough when you have all the comforts of a rich 21st century country, but imagine living in this when you had a log cabin and rode around on a horse.
The Indians didn't even have log cabins!!!

Anyway...I digress.

I met with the neurosurgeon and he gave me the run down. Told me the worst case scenario so that he'd be covered legally in case the worst case scenario took place.
Check. I get it.

Next, he showed me how the procedure would unfold. Up through the nose and into the little space between the skull and the brain.

So I then signed off on the paperwork and the Doctors are going to begin putting the teams together to get this done in January!!!
I wasn't expecting that!
I thought maybe March or something.

I will be in the hospital for 3-4 days because they want to make sure my pituitary gland is working properly. I may need to take a bunch of med's to ensure the body balance doesn't get out of wack. Salt, water, proper hormones etc.

He's done three of these exact types before and all of them were successful. My tumor isn't that outrageous so I am really hoping this works and I won't require life long medication.

Anyway, the next step is a CT scan and then they are going to do another MRI before I go into the operation. The CT scan will help give a mapping of my bone structure and the second MRI will give a new mapping of my pituitary gland. Then they plug all that into their systems and begin doing the operation.

So long for now.
Merry Christmas and a Happy New Year!

MRI

Okay, so the next step in this process is to go for an MRI.

I decided to do it privately. For international readers, Canada has a Universal publicly funded health care system. There isn't a lot of private health available.
As a result, everyone gets really great health care cover regardless of their ability to pay. Health care as a human right if you will.
The downside....
Health care can take a long time to get. Think of it like a grocery store. If the food was "free" you'd have to stand in line a lot longer to get your stuff.

I decided to spend the $1020.00 for a private MRI. One of the few things in Canada we can actually do for ourselves.

I showed up and they put me in a tube on a table and I spent about 40 minutes getting pictures of my skull transposed onto their crazy imaging computers.
They also injected me halfway through the process with a "contrast". This just helps the computer take better pics. It didn't hurt.

Anyway, got the results and the tumor on my pituitary is 10mmX11mmX5mm on the left side. It hasn't spread too far and wide and it isn't wrapped around my optic nerve or carotid artery. It extends a little bit from the pituitary itself and is considered a "macro" because it's over 1cm in size. (barely)

I feel pretty good about it. I've heard some stories about people who don't catch their conditions until they're in their mid-40's and it can be the size of a golf ball...totally encompassing the pituitary gland. (Even then treatment works, but the process is a lot more involved)

So I'm in a good place.

Now I meet with the neurosurgeon who will be performing the surgery on me. Dec 22nd is the date. Looking forward to it.

Take care everyone,
Jeff

Test Results

So today I got my test results and went over everything with my Doc.

It was positive.

At least that's how I would describe it, since "positive" isn't really the right term, but Acromegaly it is.

The sugar drink did not supress my levels. It was 10 HGH. Don't know what that means.
My intial IGF1 was 800 when it should be 300, so through and through it is an Acromegaly result.

I have booked an MRI for my pituitary gland on Thursday. I will also have to have a colonscopy and an echocardiogram.

The colonscopy is because Acromegaly can cause colon cancer. Usually this is a long term symptom...at least that's what I'm hoping. I'm 32 and this has been caught early enough that it I am hopeful that nothing has developed. I also don't have any symptoms of that so I feel pretty confident.

The echocardiogram is basically an ultrasound of the my heart. Acromegaly makes organs grow over time as well...kidneys, and heart for example.
This means you can run into problems because your organs become bigger than they should be. Maybe 10% would be a good thing. Lance Armstrong style advantage....
however, Acromegaly just keeps going so there can be stress and strain on the heart causing weaknesses and whatnot.
Again, I don't have any symptoms so it's just a check for the sake of it.

My blood sugar was 6.3 before the sugar test and 5.9 after a few hours of sitting there. This is in the normal range, but it is the high end of normal. 6.3 after fasting overnight is a bit elevated.
Anyway, maybe when the tumor is removed it'll come down right away.
Or maybe that's just how it runs in me for now.
Nevertheless, I don't want diabetes, so I'll try to avoid the heavy sugars and eat better in general....if that matters in this case?!?!
Whatever, it shouldn't hurt. I need to get in shape regardless. More gym. More ambition.
Let's kick it!

This isn't me...this is Arnold Schwarzenegger. He looks a little Acro...no? Perhaps if I just get super buff, I'll appear as a rough around the edges, manly man.

HGH test

Okay, so today I woke up early and battled a traffic jam in the dark and snow in order to get to the old Children's Hospital that has since been converted into a specialist type clinic.

The clinic I was there for was the Endocrine clinic.

After my IGF-1 test, my Doc sent me to this clinic in order to get a whole laundry list of hormone tests.

I met the two nurses and they took me to a room with two recliner chairs and a television. They inserted an IV into my arm by my elbow. (Just a small gauge needle taped down)

They took about eight vials of blood for all the other hormone tests that are needed in relation to Acromegaly. Then the HGH test proper began.

I hadn't eaten anything or ingested anything since the night before, so the way this test works is you go in hungry and they take a blood sample. Then the nurse brought in a sweet orange drink. (Basically a McDonalds tasting orange drink that is heavy on the sugar.)

You drink the drink, and then they take blood samples every half hour for about two hours. The last blood sample is one hour after the last half hour.

I was there from 8am until 11:30am.

They took all the blood and forms and I will find out the results when I meet with my Endrocine Doc on the 29th.

Piece of cake!

If you suspect you have Acromegaly

If you have any reason to suspect you have Acromegaly, ask your doctor to give you a IGF-1 test.

He/She will write a requestion and you will go to a clinic or lab and a nurse with take one vial of blood from you and they can do a preliminary test from that.

It's quick, easy and effective.

I should have done it years ago just to get it over with, but I thought it was more difficult than that, because the follow up test involves the sugar drinking and the 4 hours of tests.

If your results come back normal, you don't have to worry...if they are abnormal then you can jump into treatment.

All the best,
Jeff

First Past the Post!

Okay y'all,

I've read some of the blogs out there and thanks to them I have pursued my search for a diagnosis, probably ten years before I otherwise would have.

The internet, man...the greatest invention since the printing press.

Anyway, in 2008 I went in for a check up with my family Doc. I turned 30, and I thought it might be a good idea to do a full check up. I knew I was perfectly healthy, but hey, we have Universal Health Care in Canada so why not get a check up, even if you don't need it?!?! It's like a tax rebate right?

Everything went fine and then the Doc did a quick throat check and felt a lump on my thyroid.

Since this is an Acromegaly blog and not a thyroid cancer blog I will skip the details of the past two years and end with this.
They treated it and kicked it's ass. Cut out the thyroid completely and burned everything in it's wake with radioactive iodine. Fuck you cancer.

A couple of all clears and I was feeling great. Ready to take on the world.

During the whole ordeal I did some obsessive thyroid cancer research. (I don't recommend too much internet diagnosising, but a little is okay. You can go down a dark road, where it's 1am and you have to work the next day and your heart is pounding because some pdf file documenting a Japanese study that linked thyroid cancer with shell fish in 1983 hasn't been completely rebuked...in other words...get a grip and calm down...a little ignorance is bliss)

During the research I read about a link between thyroid cancer and acromegaly. Not very common and my Endocronologist says it actually isn't solid so whatever. Nevertheless I self diagnosised Acromegaly.

Because of the cancer affair I believe I have caught the Acromegaly process early. I have very few symptoms and got an IGF1 test last week. Came back as double normal.

In other words...it looks like I am about to begin the treatment process for this disorder. In two weeks time I have an appointment with a nurse to do the sugar drinking stuff and a laundry list of other blood tests to see if any side problems are starting from the Acromegaly.

Sigh.

Cancer, now this. WTF? Seriously. This shit is supposed to happen to other people. You say things like, "That's a shame" and then turn your attention back to important things like Charlie Sheen trashing his hotel room and what kind of burger you'll get for lunch and who'll win the world series.

As my pastor has said, "We're all going to end up in one of three conclusions....we'll get hurt and die, sick and die, old and die".
I guess it's how you walk the road.
I plan to walk the road with a little more Tony Stark recklessness from now on.