Today I went to see another endocrinologist at UCSF, Dr. Ku. I don't know if I should name names. Especially when I complain :-D They bounce me around between doctors a lot (fellows), but at least this one seemed nice and actually concerned. I can't say the same for one of the head doctors there, Dr. Tyrrell. He gave me my shots but generally seemed in a hurry to get me off his hands every visit. I can at least thank him for prompting me to plead with my primary physician to do the monthly shot (because they initially refused) - and now I don't have to travel to San Francisco every month.
Dr. Ku made sure to check all my vitals and actually asked questions, etc. I told him about my fatigue and headaches and he gave me the normal "don't know what to tell you about that" answer that I get (and expect now) from all of my endocrinologists. He told me the labs for the glucose suppression test came back with the GH at 2.1 and IGF-1 at 389. Back in 5/07 my IGF-1 was 370 and GH was 1.3. This doctor told me that they've changed the normal range so much on the IGF-1 over the years that it's not always a very accurate way to judge things because the range has been so skewed. This is the first time I've heard that one. He also said that he thinks my GH should be below 1.
If I'm to believe the readings are correct, then my levels have actually raised some since 5/07, even on the monthly 10mg Sandostatin LAR. So the doctor is raising me to the 20mg and I'll get checked again in 5 months. Hopefully I won't have issues. I asked how often I should have the MRI done and he said every 6-12 months. The surgeon who operated on me, Dr. Kunwar, hasn't followed up with me because they're so busy there. So the endo says they'll follow that. Well I should hope so! I can't believe that's not a normal concern for the endo with my condition. It's as if he expected the surgeon to follow up with me, I'd think that's an endo's job? Anyway, I know that "I" will follow up with myself. Dr. Ku also mentioned that just because my GH seems to have risen some, doesn't necessarily mean my tumor has returned. That's good news but I'll still be interested to see the next MRI.
Tuesday, December 18, 2007
Sunday, December 9, 2007
One Year Anniversary!!
I can't believe it. I just realized in 3 days it'll be one year since I had surgery. I guess I should do an update :-) I'm doing really well now (knock on wood). A lot has improved since surgery, and even more so since starting the monthly Sandostatin LAR shot back in April. I feel almost normal again. I have an appointment the 18th with my endo in S.F. to check my levels again.
After surgery my depression seems to have completely gone away, where before it was chronic (YAY!). I'm still fatigued daily, and I notice that I tire easily doing simple things like getting on the computer, socializing, and driving long distances. I get headaches and neckaches often. Tylenol and Advil are my friends. My BP is under control with meds (Micardis at the moment, switching to Diovan end of month). My GH and IGF-1 are controlled. Most of my soft-tissue swelling has gone down now. My nose is back to normal size. I've gone down about 2 ring sizes to a size 7 I believe, and I can fit in my 8 1/2 shoe again!! (Down from size 10). My weight is good at 135, but I still get extremely hungry at times. My hair still seems to curl too much but I've discovered the straightening iron. I have to stretch before any exercise now or I'm extremely sore afterward (I may just be getting old in this case, I did hit the 3-0!). And I notice I still have the beginnings of TMJ. Luckily I'm not in pain but opening my mouth is awkward at times, and I deal with the awful clicking sounds/feelings.
My biggest complaint is probably wishing I knew more how to control my illness, wishing my doctors could provide me with more information. Some days the headaches, neckaches, and fatigue are unbearable (I know my limitations better now, and when I need to rest - I rest!) I get juggled around between endo's in S.F., and I never seem to have the same doctor. All they seem to do is tell me my GH and IGF-1 and not much else. At the same time I realize I could be much worse off and I do realize how lucky I am.
I've received a lot of contact lately from other acromegaly sufferers (a pleasant surprise!). It's great to hear from you and swap stories. I hope things are going well for all.
After surgery my depression seems to have completely gone away, where before it was chronic (YAY!). I'm still fatigued daily, and I notice that I tire easily doing simple things like getting on the computer, socializing, and driving long distances. I get headaches and neckaches often. Tylenol and Advil are my friends. My BP is under control with meds (Micardis at the moment, switching to Diovan end of month). My GH and IGF-1 are controlled. Most of my soft-tissue swelling has gone down now. My nose is back to normal size. I've gone down about 2 ring sizes to a size 7 I believe, and I can fit in my 8 1/2 shoe again!! (Down from size 10). My weight is good at 135, but I still get extremely hungry at times. My hair still seems to curl too much but I've discovered the straightening iron. I have to stretch before any exercise now or I'm extremely sore afterward (I may just be getting old in this case, I did hit the 3-0!). And I notice I still have the beginnings of TMJ. Luckily I'm not in pain but opening my mouth is awkward at times, and I deal with the awful clicking sounds/feelings.
My biggest complaint is probably wishing I knew more how to control my illness, wishing my doctors could provide me with more information. Some days the headaches, neckaches, and fatigue are unbearable (I know my limitations better now, and when I need to rest - I rest!) I get juggled around between endo's in S.F., and I never seem to have the same doctor. All they seem to do is tell me my GH and IGF-1 and not much else. At the same time I realize I could be much worse off and I do realize how lucky I am.
I've received a lot of contact lately from other acromegaly sufferers (a pleasant surprise!). It's great to hear from you and swap stories. I hope things are going well for all.
Tuesday, September 25, 2007
What Do I Do??
I'm having too many of these moments lately. I find myself in a "situation" and I feel like I can't make a decision for fear of making the wrong one. In this case my doctor is really pushing BP med. My BP has been elevated to about 140/90 for the last year. I refused medication initially because I hate to take prescription meds, and I didn't do my homework. I finally researched and realized having untreated hypertension is much worse than taking medication.
I also didn't realize that many people have had success stories with homeopathic methods. So I let my doctor put me on BP prescription meds. Now that I know about the homeopathic options I'd like to try those. However my doctor really doesn't want me to be off prescription meds, she's really pushing them. I told her I'd follow her advice. But now I'm second guessing things. I guess ultimately it's my decision. Even though I respect her advice as a doctor, she is a "guide" in my health care. I don't see what's so wrong with *trying* the homeopathic course for a few weeks to months with daily checks of my BP. If that didn't work, of course I'd switch back to prescription meds. *sigh*
I also didn't realize that many people have had success stories with homeopathic methods. So I let my doctor put me on BP prescription meds. Now that I know about the homeopathic options I'd like to try those. However my doctor really doesn't want me to be off prescription meds, she's really pushing them. I told her I'd follow her advice. But now I'm second guessing things. I guess ultimately it's my decision. Even though I respect her advice as a doctor, she is a "guide" in my health care. I don't see what's so wrong with *trying* the homeopathic course for a few weeks to months with daily checks of my BP. If that didn't work, of course I'd switch back to prescription meds. *sigh*
Tuesday, August 28, 2007
Sandostatin and GH update
It seems like I'm doing extremely well. I just had my 4th Sandostatin shot. Physically I'm finally starting to look like I did 10 years ago, I'm very excited! I still have some headaches but that may be related to my hypertension. I'm trying to keep my blood pressure controlled with prescription medication, but I've read some home remedies really work. I'm hoping to try a combination of garlic and calcium, or possibly the apple cider vinegar and see if I can get off the prescription meds.
I also talked to my primary care doctor about doing the shot in office. She refused in the beginning, but I just found out her husband and partner in the practice has done the shot before. They're going to start doing them for me starting next month so I don't have to travel to San Francisco!
I also talked to my primary care doctor about doing the shot in office. She refused in the beginning, but I just found out her husband and partner in the practice has done the shot before. They're going to start doing them for me starting next month so I don't have to travel to San Francisco!
Thursday, August 23, 2007
GH Level
I had another oral GH test. GH level is still about the same at 1.4. Need to have my IGF-1 checked again as well. My endo in SF changed again. This time when this dr gave me my shot he hit a nerve and it was painful. I'm not impressed with him so far. He doesn't seem to take me seriously, and takes 2 weeks to return messages. My first visit he asked if I could be seen by another endo closer to home, basically because he didn't have time for me. As if I would travel 3 hours roundtrip to SF every month if I didn't have to. Unfortunately my primary dr refused to do the shot, and the only other endo I saw closer to home I personally didn't like, and felt that he was unqualified to treat me. I'm tired of dr's who just don't seem to care. I asked my primary dr again if she'd consider doing the monthly shot. She said she'd consider it but I haven't heard from her in 2 weeks either.
Tuesday, July 3, 2007
Picture Timeline
I thought Alecia had a neat idea with the acromegaly 'before & after' surgery picture timeline so I made one too. It helped me pinpoint when the physical changes started, probably around early 2003. In 4/02 I had my retainer adjusted because of the gap between my teeth widening. In 5/03 I had my rings resized larger. However I don't know when exactly the disease began of course.
Tuesday, May 1, 2007
My first Sandostatin Shot!
I went to SF for my first 10mg Sandostatin shot. Yay!! My Dr says since my GH was so close to normal, and my last IGF-1 was about 370, he doesn't think I'll need to go over the 10mg Sandostatin, but we'll see in a couple months.
It was all easier than my scary imaginings :-) I imagined a HUGE needle and that it would hurt really badly. But it was very quick and felt like a normal shot. I also have to remember to call an hour before each injection appointment so they can take the medication out of the fridge. Oh yeah, and Dr told me to stay away from fatty foods so I don't get gallstones.
It was all easier than my scary imaginings :-) I imagined a HUGE needle and that it would hurt really badly. But it was very quick and felt like a normal shot. I also have to remember to call an hour before each injection appointment so they can take the medication out of the fridge. Oh yeah, and Dr told me to stay away from fatty foods so I don't get gallstones.
Wednesday, April 25, 2007
Good news!
My insurance finally approved 12 monthly visits to UCSF + 12 Sandostatin LAR injections. I really had to stay on top of them. I basically had to assume my insurance, and my primary doctor were complete idiots who don't communicate, and call them about everything constantly. But it worked :-D I should start injections next Tuesday as long as they get the med in time. Oh, and my oral GH testing was 1.3, should be <1.
Tuesday, April 3, 2007
UCSF Update
I'm excited to have some good news today. My doctor told me that we're going to skip the 3 weeks of daily injections and go straight to the monthly injections of Sandostatin LAR. I'm a little worried about the side effects, but as long as it works out it will be so much more convenient. I've also been taking cortef (oral hydrocortisone) and levoxyl (synthroid) prescribed by another doctor and he told me I can begin weaning off those as it doesn't appear I need them based on bloodwork. So the only med I'd need would be the injection, yay! I hate to take any drugs I don't need. I'm actually beginning to see I have more side effects than I realized thanks to the cortef most likely. Maybe I don't have fibromyalgia after all, just side effects of cortef.
I also now know my GH level based on blood tests is 7.4 ng/mL. This number may have been affected by my taking the steroid hydrocortisone. The doc says normal accepted level used to be 5 ng/mL, now it's 2 ng/mL. I'm going to do the oral glucose tolerance test for GH next week. And hopefully within 3 weeks when I return to UCSF and insurance approves I'll start on the Sando shot.
I also now know my GH level based on blood tests is 7.4 ng/mL. This number may have been affected by my taking the steroid hydrocortisone. The doc says normal accepted level used to be 5 ng/mL, now it's 2 ng/mL. I'm going to do the oral glucose tolerance test for GH next week. And hopefully within 3 weeks when I return to UCSF and insurance approves I'll start on the Sando shot.
Wednesday, March 28, 2007
My Body Is Out to Kill Me!!
Had my first endocrinologist appointment with UCSF on Tuesday. I think it went ok. But my BP was 150/110. Since getting acro it's usually higher, around 140/90. Normal for me used to be 120/80. Anyway, it's getting up there. So the endo wants me to schedule an echocardiogram to rule things out. He wanted me on BP meds right away, but I hate to take any med I don't have to. Especially since I usually get ALL of the side effects. I'm going to see if the Sandostatin injections help lower my BP, since I'm thinking it's an acro symptom. The endo suggested I start injections 3x a day for 3 weeks, then if all goes ok I'll go the once a month route.
Friday, February 9, 2007
Acromegaly, Andre the Giant, and me!
Why I'm Talking Now
In the United States:
Worldwide:
My Experience
I was having some severe headaches last summer around July 2006, to the point where I felt non-functioning, which is unusual for me. I'd never even had a migraine that I knew of. I had an MRI of my brain and they found a benign pituitary macroadenoma 2.3 X 2 X 2.2cm (or a large pituitary tumor, greater than 20mm).
My Symptoms: I went to Stanford and saw an endocrinologist (hormone specialist), Dr. Katznelson. He visibly diagnosed me as acromegalic immediately. I was totally in denial that I could have this "disease". He referred especially to how my hands were so large and spade-like in shape, I had a lot of "soft tissue" growth he said. My ring sizes had grown (I didn't know at the time, but by 3 sizes on some fingers), my shoe size had grown (by 1 1/2 sizes), and I had other visible symptoms of acromegaly like the widening nose, enlarged tongue, and skin tags, .
My tumor was behind my nose, beneath the brain in an area of dead air space. However, it was the size of a walnut, and it was squishing my normally pea-sized pituitary gland like a pancake. The pituitary gland regulates the hormones of the entire body. There was the possibility that my pituitary gland might have to be removed, in which case I'd need to be on HRT's (hormone replacement therapy) the rest of my life.
I ended up having surgery at UCSF (San Francisco, CA) with Dr. Kunwar on December 12, 2006 to remove the tumor transphenoidally (through the nose). My surgery began around 8am and only lasted about 3 hours. The surgeon cut through the sphenoid bone, pulled the tumor out and packed the hole with a fat graft from my abdomen. I also had a lumbar drain inserted into my lower spine to reduce any pressure from fluids around my brain. I was a little freaked out by blood dripping from my nose for the next few hours following surgery, especially when I walked around. I had no nasal packing, but eventually it stopped. I left the hospital by 11am the following morning. It was very similar to a sinus surgery, it seemed almost cosmetic to me. It only took me 4-6 weeks to recover. I had no headaches and basically felt like I had a bad head cold. However I am still very fatigued, which is pretty much normal I think. As far as I know at this point, the tumor was removed 99%, and my pituitary gland is intact.
Based on the statistics, if I didn't have surgery I could have gone blind because the tumor was beginning to press on my optic nerve. And my life expectancy would have been half that of a normal person because of all of the effects of the tumor and the acromegaly.
I had so many symptoms that came on gradually over the last few years, I didn't realize they were related at all. In fact, as each new symptom appeared it was easy for me to explain them away without checking into them because they didn't seem related.
Basically, in a nutshell, the tumor caused my pituitary gland to produce too much growth hormone (GH), which caused the acromegaly. The GH caused production of insulin-like growth factor (IGF-1) in my liver. The IGF-1 causes bone and tissue growth. The good news is even though my tumor will possibly recur, it can be controlled. And I can live a normal life with most likely a normal life expectancy thanks to my surgery and continuing treatment. Most likely I'll need to have shots every month to control my growth hormone and IGF-1.
http://www.acromegaly.org/about_acromegaly.aspx%2520Acromegaly.org
Endocrine & Metabolic Diseases Information Service http://www.endocrine.niddk.nih.gov/pubs/acro/acro.htm%23causes
Acromegaly - Wikipedia
http://en.wikipedia.org/wiki/Acromegaly
Pituitary Tumors
http://www.umm.edu/endocrin/pittumor.htm
A personal acromegaly blog
http://blessed-beyondmeasure.blogspot.com/
Acromegaly forum
http://acromegalysupport.com/phpBB2/index.php
I have a very rare disease called acromegaly.
What is Acromegaly?
Acromegaly is from Greek akros "extreme" or "extremities" + megas "large" = extremities enlargement. It's not considered a genetic disease. I acquired it somehow.
Statistics of Acromegaly
Small pituitary tumors are actually pretty common. Based on autopsies in the U.S., 25% of people have them. Most are benign, and they don't seem to cause significant medical issues.
- 2.3cm pituitary macroadenoma (large sellar/suprasellar mass, left carotid artery slightly displaced, slight mass effect on optic chiasm)
- severe headaches (mainly left posterior)
- enlarged spade-like hands and feet
- achy joints, enlarged knuckles
- extra abdominal fat?
- acne
- developed barrel-like chest
- some frontal bossing of the forehead, sunken eyes
- irregular heartbeats?
The Endocrinologist
My tumor was behind my nose, beneath the brain in an area of dead air space. However, it was the size of a walnut, and it was squishing my normally pea-sized pituitary gland like a pancake. The pituitary gland regulates the hormones of the entire body. There was the possibility that my pituitary gland might have to be removed, in which case I'd need to be on HRT's (hormone replacement therapy) the rest of my life.
Surgery 12/2006 @ UCSF (San Francisco, CA)
Based on the statistics, if I didn't have surgery I could have gone blind because the tumor was beginning to press on my optic nerve. And my life expectancy would have been half that of a normal person because of all of the effects of the tumor and the acromegaly.
I had so many symptoms that came on gradually over the last few years, I didn't realize they were related at all. In fact, as each new symptom appeared it was easy for me to explain them away without checking into them because they didn't seem related.
The reason I mentioned Andre the Giant (the WWF wrestler, also known as the giant in the movie 'The Princess Bride') is that he had acromegaly also. It's just that his form of acromegaly is called 'gigantism.' Gigantism is a type of acromegaly that begins in pre-pubescent children whose long bone cartilage hasn't fused together yet, leading to excessive bone growth. This in effect leads to excessive height. Acromegaly in adults causes many of the same excessive growth issues (but not excessive height). For example, my organs can grow too large which can cause me many problems like diabetes and congestive heart failure in the long run.
Links:
Acromegaly.com - satellite site of the Pituitary Network Associationhttp://www.acromegaly.org/about_acromegaly.aspx%2520Acromegaly.org
Endocrine & Metabolic Diseases Information Service http://www.endocrine.niddk.nih.gov/pubs/acro/acro.htm%23causes
Acromegaly - Wikipedia
http://en.wikipedia.org/wiki/Acromegaly
Pituitary Tumors
http://www.umm.edu/endocrin/pittumor.htm
A personal acromegaly blog
http://blessed-beyondmeasure.blogspot.com/
Acromegaly forum
http://acromegalysupport.com/phpBB2/index.php
A little about me
I'm 30 years old. Just turned unfortunately :-) I'm married with 3 kids. I'm a big family person, love my family. I'm a student at CSU Stanislaus, although taking this semester off. I'm majoring in Computer Information Systems, although I don't know if that's what I want to do now. I also have a medical condition called acromegaly and I'm looking for others with personal experiences to share.
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