Meeting in SF

[Karen, Ellen, Tanya, Jenny]

Ellen (way to go again Ellen!) helped organize our meeting with Tanya Angus, and her mother Karen in SF. It was great to meet them, and welcome them to our California Acromegaly family :) They were very gracious, even about meeting us right after their arrival in SF. They're amazing people, and I'm really grateful that they're both putting their lives in the spotlight to bring more attention to Acromegaly.

My own personal choice was to expose my life with Acromegaly online, and that's a much easier avenue to take. I still have fears and other issues with bringing the subject up, even among people I consider close friends. I have a fear of public speaking that I've never overcome, so having people like Tanya who can be a spokesperson for herself, and everyone else with Acromegaly, is very appreciated.

I really hope Tanya finds a cure with her unique case (unresponsive to treatment as she keeps growing - at 6'11" now), or at least more effective treatment. Acromegaly is such a horrible disease, and it saddens and angers me that her case wasn't caught quicker. There's not only the physical aspects of the condition to deal with, but the mental aspect that contributes to our delayed diagnosis. Personally, when I started gaining weight and my hands/feet became larger, I became depressed, and figured I had just "let myself go." It's almost like I was in denial without realizing it. I thought  I was a freak, or just weird with certain symptoms - like my continuing lactation years after having my last child - that I even feared telling my doctor my symptoms! And along with depression I had feelings of being disassociated from myself, and to a certain extent I still do now, as though I don't know myself or my feelings anymore. I believe these feelings are due to Acromegaly, as well the depression.

The symptoms of Acromegaly can be so insidious, that we fool ourselves into thinking there isn't anything wrong. Thanks so much to all who have come forward to share their stories.

Follow Tanya's story:

Tanya Angus - Official Site

ABC 13 News - Woman with gigantism is back from San Francisco with new doctor's orders

UCSF Update

I drove into UCSF yesterday to meet my new endocrinologist, since my old one transferred elsewhere. My day started off well with a free drink coupon from Starbucks because they were closed due to lack of hot water! But I ended the day kind of frustrated and disappointed.

I've had very minimal improvement on 40mg Sandostatin every 3 weeks. I've been looking into other options. Based on my MRI she stated that it doesn't look like I'm a candidate for re-operation. I'd really hoped I could avoid the expensive monthly Sandostatin shots, call me optimistic. I do stress about insurance continuing to pay that costly bill every month for me, although I have no basis for worry.

She also reminded me that Gamma Knife Radiation is an option. Maybe I'll try it, when they can guarantee I'll turn into a superhero. Forget Acromegaly, I want to be She-Hulk! :-D

The other option my prior endo and this one are pushing on me is trying the lowest dose of Dostinex/Cabergoline. I remember having some side-effects when I was on it before. I always seem to have side-effects with any drug, so I try to avoid them. Maybe I'll stop being so stubborn, resisting their advice. I'm a bad patient.

The Latest..

Good news. I'm on a new dosing schedule for Sandostatin 40mg - every 3 weeks now instead of every 4 weeks. I was tested after 3 months on the new dosing schedule. GH is 1.8, IGF-1 is 379. But, my numbers were basically the same on Sandostatin 40mg every 4 weeks. I'd hoped to see a dramatic improvement. I'll be seeing a new endocrinologist at UCSF end of October to discuss whether I should go back to the old dosing schedule, and a possibility of re-operation (slim in my opinion based on my MRI).

Also on Sandostatin side effects, my blood pressure may be slightly higher. I haven't been taking blood pressure readings every day, since I've been jogging daily and at my doctor's appointments my blood pressure is always low enough. And any other issues are negligible, although I do worry about potential damage to gallbladder.

On another note, I believe the high doses of Sandostatin had been causing almost daily muscle pains. Any time I exercised (it was very infrequent before), or did even a small repetitive activity I would have muscle pain for days. Since I started jogging daily (jogging or jog/walking 15-30 minutes) I haven't noticed the muscle pain, so that is wonderful! It seems I may have less Sandostatin side effects due to exercising, even a small amount daily. I did approach my new exercise plan carefully and slowly, and I don't push myself too hard. I'm naturally a very lazy person, but I'm realizing that not exercising doesn't seem to be an option for me. It's imperative to my health.

WORLD'S TALLEST MAN: STILL GROWING SUNDAY, AUG 8 at 10/9c on TLC

Sneak Peek

At over 8 feet tall, Sultan Kosen is the world's tallest man ... and he is still growing! In this all-new TLC special, we follow his extraordinary journey around the world not only in search of a cure to his gigantism but also to overcome his lonely existence.

As young boy in a Turkish village, Sultan dreamed of a simple life - to grow up, have a job and find a wife. At the age of 8, Sultan began to grow uncontrollably and by his teenage years, the extreme growth had forced him into isolation. Continuing to grow, he soon became the "World's Tallest Man" which brought Sultan fame and opportunities to travel around the world. While confronting his dangerous condition with medical attention, Sultan begins to seek out relationships. More than anything, Sultan longs for a wife and looks for love online, resulting in his first date ever. He also travels to the US to meet America's tallest man, former Harlem Globetrotters George Bell, and is encouraged with the new friendship. Although still growing, Sultan now lives with newfound confidence and bravery despite the continued threat to his life and his dreams.

Changed Verdict - Side Effects of Sando

I wanted to edit this post because I thought I had my answer and I believe now that I was wrong. I don't believe that arthritis is the cause of my muscle pains at all. I always read any drug information inserts as soon as I buy a prescription. I don't remember an insert stating this side effect of Sandostatin. Looking at their drug insert information online, muscle pain is not even listed as a side effect of this drug. But a simple google search tells me that statins can cause muscle pain. I'm going to mail Novartis to see what they say about this.

* * *

And the verdict is (most likely) - Arthritis!

Well the good news is my blood tests came back good. I don't have chronic fatigue (although I've been exposed to Epstein-Barr like many people), and I don't have Fibromyalgia. My heart was good, no diabetes, no low levels of potassium or Thryoid or anything else. Did have slightly high LDL (by like 2 points), and slightly low HDL(2 points again). So naturally, I'm feeling a bit like a hypochondriac at this point! :-) Is my pain in my head?? Well, it is literally many times :-)

I did ask my doctor for pain medication to manage my chronic pain since OTC doesn't help anymore. I still have headaches/neck aches, and right side sciatic pain. And I'm sick of dealing with it so I guess I'll take my chances with pain meds. To my surprise, he handed me Arthrotec. Which is an arthritis pain med! I already knew I had degenerative disc arthritis in my back due to my sciatic pain, which began last year and has been bothering me consistently. And my blood test did show a high sedimentation rate which indicates inflammation like arthritis. But I never thought the other symptoms I had could be arthritis related. I have an aunt with rheumatoid arthritis and I certainly don't have her symptoms or limited mobility! I do have joint pains sometimes, but most of the time it's muscle pain, or sciatic pain. Anyway, a Google search also confirmed chronic fatigue is a symptom of arthritis, which I also didn't know. So maybe I have my diagnosis finally! I'm happy to have some sort of answer, so I can know how to properly treat myself. And I'll be looking into seeing a Rheumatologist most likely, although I'm not sure how helpful that will be considering I don't like taking medications.

ETA: Arthrotec didn't work unfortunately. I only took one pill and had continuous stomach pain, and a bloated/full stomach feeling all day. I did eat before taking the pill as directed. The pain was like hunger, but once I ate I felt overly full and like I had reflux/the food wasn't digesting at all. And I didn't notice a significant reduction in arthritis pain either.

I'm also noticing my posture has been horrible. Trying to maintain good posture all day seems to help with headaches and sciatic pain, although my back muscles are so weak that it makes my back ache! I'm hoping to join a gym and increase my muscle to help combat the arthritis.

More Potassium and a Tip on Sando

First I'll give the Sandostatin LAR tip, because I'm going to ramble like usual :-) I thought I posted it here somewhere but I guess maybe I commented somewhere else. Anyway, people on forums have complained about the shot hurting, or getting a lump since it is a bigger needle, and the Sando is thick. When I first started getting the shots, I tensed the leg on the side I was getting the shot, and I felt pain shoot down my leg, along with developing a large, painful lump. Maybe I'm getting scar tissue and that's why getting the shot is so easy now, or maybe I'm doing something right. I make sure that I don't stand on the leg on the side that's receiving the shot, and I close my eyes and concentrate on not tensing either. It also helps to massage the area right after the shot. But truthfully, I get a small lump now and I don't massage anymore, and it's easy to deal with. I don't even feel the needle go in usually.

And...I'm onto my next theory why my BP is so high (still prehypertensive). I'm guessing I've been eating a high sodium diet that's also WAY too low in potassium. High sodium..duh..too much fast food/packaged junk. My BP goes up even after one fast food meal. I realized I've gradually cut way too many things out of my diet, probably out of laziness. Even eating at home, I thought eating smaller portions of meat was better, and added some carbs with it. I've also been boiling meats which I read causes it to lose nutrients.

I'd asked my doctors to test all of my levels of like everything possible in years past. So I assumed they checked potassium, but maybe not. I'm going to double check. I do have ALL of these symptoms of potassium deficiency: fatigue, myalgia (muscle weakness), acne, dry skin, memory loss, heart problems, digestive problems, ringing in the ear.

So I'm on week 1 of a new diet. No pill supplements since I've read they can be dangerous. Larger portions of meat like steak, potatoes, bananas, OJ, etc. Less packaged crap/fast food (I really didn't add much table salt to anything, just ate the wrong things). I should also mention prior to this diet I'd pretty much completely cut out caffeine, besides green tea a few times a week. And soda or coffee maybe once a week. So far I'm feeling more energy so that's good. Seems like less bloating and water retention. Digestive stuff better. Lost a few pounds. Feeling less cravings. Usually I crave sugar constantly. Haven't taken many BP readings yet but had a couple good ones. And I'm also aware that I may trade off a better BP for higher cholesterol levels with eating more meats (like I'll take time/remember to make sure it's not fatty every time I shop). I'll update later, along with info from the doctor about whether my potassium level was ever checked.

Healthline

Life123

Wellsphere

Mayo Clinic

Another Meetup!

Ellen (Acromegaly Bloggers), Wayne (AcromegalyCommunity.com) and I had a chance to meet up in SF. We had a great time. It was like meeting up with old friends for me, they're very warm and sharing people. It's very nice to have a support network online and in real life. I'd had a crazy week since I was a week late for my Sandostatin shots due to a doctor's office mix up, and I almost didn't go. But I figured if anyone in the world could understand me and my crazy, hormonal, totally irritable week it would be Wayne and Ellen. And I did end up getting lost for a few minutes in SF, and breaking at least one traffic law like normal when I go to SF. Those are like two requirements for me when I go to SF no matter how many times I've been there, and it's not on purpose either sadly! Yes I do have blonde roots :-D

I was already so thankful that Ellen has been so proactive, and is such a connector pulling together so many of us with Acromegaly on the Acromegaly Bloggers site. I've become so much more comfortable in myself dealing with Acromegaly, thanks in large part to Ellen's efforts. Wayne and I had only had a few conversations online prior to meeting. He works full time yet he manages his online community, and facebook site, he's working on a book, he's appeared on tv, and he's working on creating an Acromegaly nonprofit. Thank you so much Wayne for working so hard for Acromegalics, and getting the word out there. My post is by no means as eloquent as I'd like it to be. But if you're looking for additional support, definitely visit AcromegalyCommunity.com and Acromegaly Support on Facebook.