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

GH Update

For some odd reason I'd hoped this visit would've gone well. No such luck. Went to UCSF today to see my endocrinologist. My fasting GH was 2.8 ng/mL, suppressed GH after 1 hour was 2.7 ng/mL, after 2 hours was 2.2 ng/mL. Didn't quite make it under 1 ng/mL. My IGF-1 was 464 with a reference range of 126 - 291. My doctor told me again that as far as he's concerned the assay range for the IGF-1 has been changed too much recently to use my IGF-1 level as a predictor of how well I'm doing.

So going strictly by my failed GH testing he's recommending I go up to the 30mg Sandostatin LAR, and check back with him after 3 full months on the med. Visibly I look better, more swelling has gone down with the increase in the last few months to the 20mg. But I really don't want to think of where I go from here when I find out the 30mg doesn't work. I'm sick of fighting with this disease already. I feel more like a 50 year old than a 31 year old. I'm fatigued all the time even though my thyroid and other numbers are good. My headaches have improved but I still have them quite often. I have heart palpitations sometimes but my EKG was fine. Everything seems *fine* but I don't FEEL fine. I'm still waiting to discuss my latest MRI with my doctor. But my last MRI was good and my GH was still too high. I really don't want to consider radiation and possibly damaging my pituitary gland further, but what option do I really have?

Checkup at UCSF

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.