Loooong Update!

The latest is my IGF-1 is 384, and doctor says normal is up to 368. Can't remember what my GH was, but it's always under 2 with the OGTT. Since I'm still at this "almost normal" level my doctor wants to put me on a low dose of Cabergoline. He's concerned about potential cardiovascular problems. My blood pressure has been averaging about 125/80, which is good, but still not ideal because it does spike up near hypertensive levels when I'm under stress. I really don't want to take the Cabergoline though. I've fought not to take medications I don't need, or to get off medications I don't need. I've had bad side-effects with every medication I've taken, and I also wonder how I'm harming my body internally by taking these medications. And truly, those side-effects make taking the medications not worth it to me. I also suggested going from 40mg of Sandostatin every 4 weeks, to every 3 weeks instead. My blood pressure has greatly improved this last year that I've been on the 40mg. I was told there really isn't enough evidence to support that would be effective.

So now I'm stuck wondering if staying at this "almost normal" level is ok? If it's all I'll ever be? I don't know if I have a chance at normal. I feel like taking these other medications may put me at unnecessary risk. I already have a myriad of symptoms that aren't controlled by the Sandostatin. I've dealt with them as they came along. I've constantly complained about the fatigue, the headaches, etc., and my doctors tell me they don't know what's causing it. My thyroid and other levels are normal. But it greatly affects my quality of life. I didn't realize that I'd never explained to my husband in depth how this fatigue affects me till the other night. I've been dealing with this ever since 2006 at least, when I was diagnosed with Acromegaly. I guess I just blogged about it.

The fatigue is with me daily, and usually headaches too, although I have less since getting off the bp med Diovan. Dragging myself out of bed every day is an effort, socializing, staying on the computer more than an hour, driving more than 30 minutes, reading....anything that seems to require my concentration for extended periods of time seriously fatigues me. Standing for long periods, walking for long periods, just doing weekly grocery shopping fatigues me. It feels like there are hands compressing my head, my scalp feels tight, my shoulders feel like there is a weight on them. My face even feels like it's being pulled down, like there's a weight on it. If I don't have a headache already, I usually develop one on the left side, along with the muscle pain on the left side of my head and neck. And my memory and concentration are horrible. My short term and long term memory seem gone. I get tired or easily distracted when people are talking to me, or when I'm trying to read. I have to constantly tell myself to pay attention to what they're saying, or I have to constantly re-read sentences. I've turned to caffeine to help me concentrate, but it only helps so much. I have a hard time understanding people too, which is weird. It's almost like I'm dyslexic, which I know I'm not. And I'm harder of hearing now too.

I've tried to exercise regularly but seem too tired/not motivated enough to continue. About a week or two is all I manage before I stop. And the exercise is a problem too. It doesn't matter how little or how hard I work out, I always end up with muscle pain that lasts a few days to a week, and is in fact quite annoying! Why would I want to continue working out when I know this pain is what I can expect? About the only thing that seems to help with the fatigue is laying on the couch prone or almost prone with my feet up. Closing my eyes for a rest, or sleeping also helps. I can watch tv without getting too fatigued. Yay for me, that's the only activity I ever wanted to do for the rest of my life right?! I'm only 33 for Pete's sake! I can do other activities, for instance I went rollerskating at a rink a few weeks ago. It was my first time in probably 20 years, and it was so fun! But I had to push myself the whole time, like I normally do with any activity that requires my concentration. And then afterward I had to deal with the muscle pain for the next week plus. And the sad thing is how much I was looking forward to getting home and resting, like always nowadays.

A friend of mine mentioned she was recently diagnosed with Chronic Fatigue Syndrome. I'd heard of it before but never considered it. I looked into it though and it looks like I have a lot of the symptoms. It looks like it's hard to diagnose though, and that you must rule out a lot of other things first. And even if I'm diagnosed, really what is the treatment? Especially when I don't want to take more pills that I don't need to take, or pills that will give me side-effects I don't want.

I'm so completely frustrated by my condition right now. I really feel like I look great visually, I think I look almost normal. I'm so grateful the Sandostatin has given me that back at least. Developing the Acromegaly monster's appearance sure isn't every girl's dream! But I don't FEEL normal at all inside. I was a week late on my Sandostatin shot last week due to a doctor's office mix-up, and I was a basket case! I was so irritable, more so than normal. And I was in tears twice, which is not very normal for me. And they were the kind of crying jags that could've lasted forever. I was having a terrific pity party for myself. So what now? I have no idea where I go from here. I'd almost rather take the option of staying at this "almost normal" level with the knowledge that I'll probably die a few years younger, or even quite a few years younger. Rather than worsen my quality of life with more medications, and prolong my misery.

So right now I'm trying to really work on improving my health any way I can naturally. Considering I can't seem to keep a regular exercise schedule (although I am still trying), I'm getting stricter with my diet. Which is hard to do considering I have 3 growing kids, and a husband who doesn't help much in that area! I'm trying to drink green tea once a day at least, since it has cancer fighting properties, as well as helping to slim the waist. I'm trying to kick my sugar habit cold turkey, I have a feeling that won't work but I'm trying. I'm limiting natural sugars. I'm trying to eat oatmeal a few times a day since it's supposed to be good for the heart and the waistline too. I'm working on controlling portions which is very hard because ever since I've gotten Acro I've had a monster appetite. But the main problem for me is sugar I think. I'm hoping once I curb that craving, the fat along my waist will disappear and I'll have a normal blood pressure. I'm hoping that regulating my diet will help improve the Acromegaly and other symptoms I have.

Insurance Ugh!

I'm sorry, I have to post this. Is there anyone who knows ANYTHING at my insurance company?? It's like they've instructed their representatives not to give out any information about eligibility. I call in and always feel like I'm talking to myself!! These people know as much as I do. I try looking online but don't find the info I need. And every time I call in, they never know what laboratories are considered in-network, and they try to tell me that the closest in-network are 40 minutes out of town. I know that's not true because I've gone to laboratories in town and they've been covered. My doctor keeps giving me the lab slip for a lab that's not covered. Maybe they're out-of-network, but in town, but they still pay for it?? Frustrating!!

Tune in to TLC Sunday 8/7c

>> HELP! I'M TURNING INTO A GIANT - Sun at 8/7c <<
A heart-breaking look at individuals suffering with Acromegaly, a rare condition that causes the body to grow uncontrollably. These modern-day giants exhibit amazing bravery and determination to lead normal lives.

Tanya (31) - http://www.youtube.com/watch?v=HNQyHR1l-x4

Macular Degeneration

Years ago my eye doctor remarked on the fact that I had a second set of eyelashes, and he seemed surprised by that. I thought that seemed odd. Now I'm wondering if the second set of lashes is a normal thing, or if it may be another indicator of Acromegaly? The quicker someone can be diagnosed with this disease, the better.

My eye doctor also told me I had "buried drusen" a few years ago. He explained, but didn't seem to be worried about the condition. He just kept monitoring me every year. Now I'm beginning to think I'm in the early stages of Macular Degeneration. Symptoms I've had are drusen and high blood pressure (I'm actually back down to prehypertensive right now though). And in the last year or so it's become harder to read my computer monitor. I thought maybe my prescription changed, or my eyes were just getting tired quicker. It's as thought my eyes don't want to stay focused on the center of the page, but try to read around it. I've also noticed it's harder for me to tell certain colors apart, like orange and red. Those are two more signs of Macular Degeneration. I have my annual appointment in April, so I'll find out for sure then.

Meeting with Another Acromegalic

I met my first one in person today, Ellen!! I posted about it shortly on Acromegaly Bloggers, but I wanted to share on my blog a little more in depth. She and her husband were very sweet, open, and funny. Thank you Ellen for sharing so much of yourself with me. I truly appreciated it, even though I don't always show my emotions openly. I felt like we'd known each other for a long time already, since we've chatted online. I truly wouldn't have suspected she had Acromegaly if I'd met her on the street! I'm not sure if that's due to her treatment of Sandostatin? I had noticed that I thought she looked different since I'd first seen pictures of her online (prior to treatment). I wonder if the Acro monster is losing some of it's grip on me since I've been undergoing treatment too?

I remember years ago when I first started developing Acro (unbeknownst to me), and I literally felt like I was changing into a monster. Physically, and mentally I felt as if I were transforming. I would look at other people, and I recognized them as if they were a different species. I really identified with the link Ellen posted on the "Hulk" on Acromegaly Bloggers, although I didn't have the increased height of the Hulk. Anyway, I kind of expected to identify with Ellen when I saw her in that way. As if we were members of the same species :-) But I don't feel that happened. I'm not sure why, but I thought that was funny.

We talked about so many things, and it was nice to commiserate, and to share our similar experiences. I have to confess talking about Acromegaly still makes me feel like too much of a worrier, or a complainer. We do have legitimate health issues, that I can't ignore. I wish I'd had more to contribute, that I could've helped in some way besides basically affirming that we suffer from similar ailments. I know that can be helpful in its own way though, based on my own personal experience. We're not alone, and although I'm sorry she has Acromegaly too, it's also a positive thing that we share this disease. That we can identify with each other. That we're not crazy as I've thought so many times in the past :-) Seeing another person with Acromegaly who seems so "normal" on the outside was very gratifying. Living with the disease every day can be such a drag on our energy, and our outlook. But we can stay positive, and we can beat this disease to a certain extent.

I wish I could meet more of you in person. If only to hug you and say, things are going to be OK. Dealing with Acromegaly, especially in the first few months is such a shell shocking experience. But so many people I've talked to have gotten through surgery, and started treatment, and started to return to semi-normal lives. Yes, we still live with the disease, but so many of us have almost beaten it. I've never been to a therapy session for Acromegaly, or for people with tumors or cancer. In many ways this blog has been my own little therapy session. I hope everyone is doing well. In fact, it would be nice to have updates on how people are doing. I worry when I haven't heard from people for a while. Worrying is like my full time job :-)

A Bit of Good News!

I think many of the symptoms I've been having in the years since my surgery are not actually related to the acromegaly. I've kept telling my doctor and my endocrinologist about my symptoms, and they've kept testing me for different things that I may be deficient in. I even thought maybe my pituitary wasn't functioning correctly, so maybe I was experiencing early menopause. But my lab results always came back in the normal range.

It's funny how things seem to happen by chance. Our insurance was requiring us to start getting our maintenance medications by mail order. So I was going to have to switch from the Diovan 80mg to a generic alternative. When I was researching that alternative I learned of all of the side effects of this medication, which were also side effects of Diovan. Apparently I never read through my instructions on Diovan thoroughly enough. When I'm experiencing so many different symptoms, over a gradual period of time, I guess it's hard for me to think they may be related.

The problems I've been having in the last few years: headaches, muscle and joint soreness, heart palpitations, fatigue, sore throat, dizziness, memory issues, blurred vision, etc. I also think I've had some hair loss, and may have had a small case of pruritus (a sensation of wanting to scratch an itch). Many of my symptoms seem to have been on the lighter side, which made me assume they were normal. I didn't even realize they could be side effects. But I'm hoping that they are side effects of the Diovan.

I always told my doctors I didn't want to take any medication unless I had to. Still, my primary doctor started me on a daily dose of 80mg Diovan. I can understand his concern for my health. But I wonder now why he never suggested I start at a lower dose. At the time my blood pressure was around 140/90. I recently told my doctor since my blood pressure had been controlled very well in the last few years, that I wanted to try to get off the medication gradually. He told me I couldn't get off the medication. Well, I decided without his approval to start weaning myself off the medication, even though I know that's not recommended. But besides the high blood pressure, and the fact that I have Acromegaly, I'm in good health.

Before Acromegaly, my blood pressure readings were always 120/80. I started taking the Diovan every other day for a week, then half a tab every other day for a week. I monitored my blood pressure in the morning, afternoon, and evening. At the 40mg every other day I'm feeling a lot better, and my blood pressure readings have been staying about the same or decreasing. On the 80mg it was around 120/80. I've gotten down to 116/73. I'd love to stop taking the medication altogether but I doubt that will be possible. I tried to go homeopathic with the apple cider vinegar a while back and couldn't stand it :-) But if all of my symptoms were actually side effects of the Diovan, I think I'd take anything over that. My health problems have had quite a negative effect on my quality of life the last few years. I've felt more like a 60 year old woman, than a 32 year old. I'm thankful that I may have finally found an answer to so many of the problems that have been bothering me :-) I'll keep you posted on my progress!

Pinched Nerve - Acro, Genetics, just getting older??

I always want to attribute every new weird medical problem I have to Acromegaly :-) I'm not sure that's what's causing it in this case. I've had a pinched nerve in my leg now for the last 5 weeks, possibly caused after I did some digging with a shovel. The pinch didn't happen immediately after, it was a couple days later. I wouldn't think a little digging would cause a problem like this for a 32 year old, but I could be wrong! I was told after x-ray that I have spine arthritis in the T4-T8 area, with some disc thinning. The Dr sent me to physical therapy and told me I can exercise, but should avoid lifting over 50 lbs, and back contortions (no yoga for me). The last few weeks resting, elevating the leg, and heat have really decreased the pain. Increased activity seems to make the pain worse. My family has a history of back problems so genetics may be playing into the equation.

I've also noticed that there seems to be some relation between repetitive actions and increased muscle aches for me. I'm an avid reader, but I've purposely avoided reading lately. The pain and tightness on the left side of my neck and shoulder (and headaches on the left side) seem to have gone away. I'm wondering if the pain was caused by too much reading, holding the book in my left hand for hours at a time, day after day. I've noticed at other times when I overdo things my muscles ache as well. But I don't think it would be overdoing it, these actions don't seem like they should be that detrimental to a person the same age without Acromegaly. Or maybe I'm just getting old! :-D I may be grasping at straws but it makes me wonder!