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!

Good News!

Yay :-) Dr. Ku just called to tell me my labs were good. My GH was 1.5, and my IGF-1 was 377, with a normal range for my age of up to 368. So I'll be getting another check-up in 4 months.

Phone Call from the Endo

My next appointment with Dr. Ku at UCSF has been pushed to 4/28. I rescheduled so I could go get my labs done, DOH! He forgot to give me a lab slip, and I forgot to ask. It would be nice to actually have results to talk to him about when I see him :-) Anyway, he called today to tell me he got my labs from 3/9/09, that lovely glucose tolerance test again. It just keeps getting better and better trying to force myself to drink that nasty stuff without vomiting :-D I think I worry the poor lab tech. I must look visibly paler and more sickly every time I drink it :-D Back on topic, my GH was 1.2 ng/mL (after 2 hours) which is lower than it's been before, and that's great! It was 2.2 ng/mL in 5/08. So the 4 months on the increased Sandostatin 40mg has helped. Dr. Ku says he'd like my GH to be under 1 but if my IGF-1 is at a good level then he won't worry much. Unfortunately my IGF-1 may not be at a good level. My IGF-1 from 3/9 was 521, and that's up from 464 in 5/08. That's higher than it's been in the past. So Dr. Ku wants to know if the IGF-1 is actually higher, and he's sending me to another lab to try to pinpoint that number. If my IGF-1 comes back high again then he says he'd like to be more aggressive in my treatment because I'm topped out on the 40mg of Sandostatin. Hopefully I'll have good news to report in a few weeks.

Another Update

I hope everyone had a wonderful holiday! I was contacted by another acro friend and it made me realize I haven't posted in quite a while due to the holidays and all (that and my extreme laziness lately!). It's been nice to email with people and learn their stories, to know we're not alone in this. I feel horrible for not following up with everyone like I should. I just don't seem to have the energy lately. I don't stay on my computer more than an hour or two a day now.

My health has been very good lately though. I've been receiving 40mg of Sandostatin (one injection on each side now) for almost 3 full months. I go back to see my endo on 3/3 when it's been 4 full months of the 40mg, and I'll probably have another MRI in April. My MRI's have been excellent, no regrowth. I think my theory of TMJ may have been off. I got a night guard but haven't worn it. But since starting the 40mg of Sando my headaches have dropped off significantly. I'm so happy that I no longer have daily headaches. I do still avoid things that seem to trigger the headaches though, like opening my jaw too wide, and wearing my hair in a ponytail. I think reading books may be causing me headaches as well. I'm an avid reader, and I always hold my books in my left hand. I noticed the muscles of my left shoulder all the way up to the back of the left side of my head are always very sore and tight. I'm trying to adjust how I hold my books now to see if that helps.

The fatigue is always with me though. I did have a very nice holiday, and I did have fun. But going through the holidays depressed me a little because socializing seems to tire me very quickly, having to concentrate so much on what everyone is saying and to prepare my replies carefully. It's much harder for me than if I were allowed the time to compose my thoughts in writing. The holidays made me conscious of just how much I didn't interact with others, as opposed to how much I used to before the acro. I felt like so many times I was very quiet, and basically felt like an observer, letting all of the conversations flow around me but not contributing, watching as if I were outside my own body. I try to stimulate my mind by reading and playing games. But when it comes to making conversation I'm never able to recall as much as I'd like, and therefore I'm not able to contribute as much as I'd like. I can't remember so many things from my past, things I learned in school, things I should've remembered even about important current events that I've lived through. I wonder how much of it is age (I'm turning 32 soon), and how much is the acro. I notice my hair is graying already and I'd like to blame that on the acro too haha :-)

Onto a New Theory...

I can't seem to pinpoint a real link between excess sugar/caffeine and my headaches. So my new theory is maybe it's TMJ (Temporomandibular Joint Disorder) causing the headaches. I never knew TMJ could cause so many problems. I had braces that helped to correct a big overbite when I was younger, so I guess I thought my teeth must've been perfect afterward :-) It seems that isn't so. I haven't helped things any by failing to wear my retainer at night either..for the last couple years. I've had many symptoms over the years that I didn't connect together, much like I didn't connect my acromegaly symptoms.

TMJ symptoms/contributing factors: bruxism (grinding teeth), malocclusion (misalignment of teeth), head/neck/shoulder aches, clicking in jaw, inability to open jaw as wide as before, ear problems (feeling of fullness/muffled hearing - my hubby thinks I'm going deaf because I turn the tv volume so loud!), dizziness, feeling of jaw "catching", stress, bad posture, jaw pain (when pressure applied)

I didn't think I could have TMJ since I don't have noticeable jaw pain, even though I have all of the other symptoms! I didn't realize head/neck/shoulder aches could be caused by TMJ. Or that it could be aggravated by stress. I did think it was interesting that when I have slight headaches, and I've pressed on my upper jaw, sometimes the headache seems to lessen.

I was prompted to see my dentist this time by the fact that no matter how careful I chew, my teeth keep biting the skin inside my mouth and my tongue causing painful canker sores. I'd never had one on the tongue before and I can say it is very, very painful! I've also developed sores from my teeth rubbing against my mouth while I sleep! I decided it was time to get my teeth in alignment again and also ask about the TMJ. She referred me to an oral surgeon who confirmed the diagnosis.

The acromegaly has caused my lower jaw to push forward so far that the oral surgeon said I'm a class 3 malocclusion (I believe I've got that right!). He said my case isn't really bad yet, so that's good! I now need to have a night guard (or splint) made by my dentist, then I need to see my orthodonist to see if he can do anything to help with the alignment of my teeth. The oral surgeon suggested I try to manage the TMJ by trying not to clench my jaw, cutting my food into small pieces or trying a softer diet for a while, avoiding stress, etc. I could handle a milkshake/smoothie diet :-D Hopefully I'll have found the answer to my problems!

Headaches & Sugar?

I've been having almost daily headaches since I was diagnosed in 8/06. Two years of headaches and I'm finally getting serious about trying to find a way to stop them. I've just assumed they're part of the disease (I've heard of other acromegalics who have headaches after surgery), but maybe that isn't so.

I've been to a neurologist who wanted to medicate me, which I didn't want. So I let her send me to physical therapy. The heat and massage helped, but didn't solve it. I notice I get headaches when I get stressed (never used to happen before acro). My neck tenses on the left side and then the headache is always on the left side of my head. I've had blood tests to check for vitamin deficiencies, glucose problems, etc. Everything is normal. And I am happy about that :-) I've been to the chiropracter, that seems to have helped. I learned my C1 vertebrae is out of place slightly. I'm looking forward to seeing how the chiropracter may help my headaches. Although insurance doesn't cover it so I can't go very often, not 3x a week at $40 each visit. As a result I'm trying to locate other possibilities.

I'm wondering if I'm creating my own problems. I always had a sweet tooth when I was younger. But with the acromegaly the sugar cravings (mainly for refined sugars it seems) really seem to have grown. I noticed so many things that I buy are sweet things. Maybe it's a combination of things? Too much sugar, and not enough water? Fluctuations in blood sugars causing headaches? I don't think it's a caffeine problem. I have a soda a day or less. So I just started a journal a few weeks ago to try to pinpoint the cause of the headaches. I believe it was Ken who mentioned early on to me that sugar and coffee were very bad for acromegalics. I kind of brushed that off, probably because I love them so much! :-D In the first article below I read, "One of sugar's major drawbacks is that it raises the insulin level, which inhibits the release of growth hormones." So maybe my sugar cravings have been my body's response to the disease, trying to decrease my elevated growth hormone levels. Interesting.

Hopefully I'll have some interesting answers to report in a few more weeks. I'm trying really hard to cut out refined sugars (seems impossible in our fast food/prepackaged society).

Sugar's effect

Sugar: Pleasure or Poison

Sugar Sleuths