Yesterday I saw my ENT, today I saw my endo. Between those two appointments and a recorded message, I have a whole bunch of tests results, because my ENT had all my test results from my g/e doc, and kindly gave me copies.
So, here's the rundown, chronologically.
November 20: Gastric Emptying Study. This is where I had to eat a radioactive hard-boiled egg and then lie on a scanner bed for 90 minutes while they watched the radioactive tracer leave my stomach. Only it didn't: "FINDINGS: Over the course of the examination, for the entirety of 90 minutes, there was relatively no emptying of radiotracer from the stomach." Impressions indicate gastroparesis or a gastric outlet obstruction, which explains why the EGD was ordered.
November 28: EGD, as previously discussed here. The EGD itself was unremarkable except for some redness, but now I have the biopsy results. The stomach samples showed "mild changes suggestive of a chemical gastropathy;" a "careful search" was made for H. pylori, and none was found. "Taken in aggregrate, the changes that are present are likely due to chemical or drug injury. There is no evidence of intestinal metaplasia or neoplasia." The esophageal biopsies were completely normal as well; no signs of Barrett's esophagus or any other pre-cancerous conditions. No signs of ulcers, either. This is all very good -- no obstructions or ulcers or pre-cancerous changes.
December 11: Video Stroboscopy
My right vocal fold and right arytenoid/TVF are slightly paralyzed (hypofunctioning), and this has caused other structures in my throat to hyperfunction to compensate. I've also got lumpy cricoid and arytenoid cartilage because of the gastric reflux. "Speech pathology services are recommended in conjunction with medical management to address the following: 1) vocal hygiene and hydration 2) laryngeal reposturing and relaxation 3) vocal function tasks 4) resonant treatment." Therapy recommended for 6-8 weeks, once a week; I'm scheduled to start Jan 30.
(This week in between tests I got DS1's horrid stomach virus, recovered, and went to Boston for the weekend.)
December 17: Air-contrast Upper GI - Small Bowel Series (fluoroscopy)
My reflux extends all the way up to the level of the carina (???), otherwise, I'm normal. Apparently, "to the level of the carina" is bad; the first thing my ENT said to me is "you have really extensive reflux," emphasis his. I thought we knew that already?
Jan 3: In to see the g/e doc, as discussed. So far, I am unimpressed by both Nexium and Aciphex, but Nexium works marginally better than Aciphex. Then again, I didn't drink about a quart of regular (that is, non-decaf) coffee accidentally when I was on the Nexium, so I don't know how it would've handled at. I got into a conversation about the new sugar free ("skinny") mocha at Starbucks and completely forgot to order it decaf. I didn't even realize my mistake until about an hour later when the jitters set in.
Jan 7: Labs drawn for complete blood count (CBC), liver function, and thyroid tests. I don't have the numbers for the CBC and liver functions yet, but I did get a call telling me everything was in normal range. I should get my copy of those tests early next week. I got my thyroid numbers today at the endo's. My TSH is 0.09, and it was the same back in November (11/19).
I had an ultrasound of my neck today, and will go back to my endo's office next Friday for my results, at which time I will beg for an increase in my meds. Historically, I've kept my TSH more suppressed than 0.09; I'm usually somewhere around 0.07, it seems to me. (I really have to get my records organized.) I don't know whether that slight difference in TSH can be causing or effecting the gastroparesis, but it's my first preference for treatment. I'd also like to not have freezing hands and feet all the time.
I know it's a teeny, tiny difference, but my TSH hasn't been down in the basement where it belongs for quite a while, and I'm hoping that bumping up the meds can resolve the gastroparesis and that the reflux will calm down.
Showing posts with label gastroparesis. Show all posts
Showing posts with label gastroparesis. Show all posts
Friday, January 11, 2008
Sunday, January 06, 2008
that didn't take long
On Thursday, I got a prescription for Reglan to help with my gastroparesis. I started it Thursday evening and took the prescribed 4 doses on Friday... and could barely keep my head up.
Thursday I was tired anyway, having been up stupid-late the night before. So Thursday night I went to bed at a decent hour and got plenty of sleep, and still Friday I was like a zombie. A zombie with bizarre emotional reactions, like laughing too long at something that would ordinarily merit a smile or at the most a chuckle.
Needless to say, I quit taking the stuff.
Yesterday's research brought me to a support forum where there was plenty of discussion of gastroparesis, Reglan, and all that jazz. I'd say the majority of people who talked about trying Reglan couldn't deal with the side effects, but some were helped by Domperidone, with fewer side effects.
Gastroparesis is caused either by damage to the vagus nerve*, or by a problem with the muscles that control the stomach's normal churning motions. Many cases are idiopathic, but hypothyroidism is linked to the condition. I even found an abstract that demonstrated that thyca patients who go hypo (become extremely hypothyroid) for their whole body scans develop gastroparesis during their hypo phase. I don't know why it took me so long to put these facts together, but I realized the following that may have something to do with my current condition:
1) I spent a good deal of time last year hypothyroid, because of the great med experiment in which I discontinued my Cytomel, and during which my endocrinologist was strangely loathe to increase my Levoxyl.
2) I had a Thyrogen-stimulated whole body scan in August. It's true that I did not become systemically hypothyroid, but my TSH was outrageous (159!), and I felt off for a while after that. So off, as a matter of fact, that I finally went back on my old Cytomel+Levoxyl regimen in early September.
3) I have no idea what my levels are, since I have yet to see my November thyroid panel results which were run to see how the return to the old regimen was suiting me. For all I know, I've been hypo this whole time. There have certainly been times when I've felt hypo -- cold all the time, skin drier than paper, funky hypo half-brows -- but I'm generally not fatigued, nor am I depressed or brain-fogged... that I've noticed, even though there has been a lot of stress lately.
I'm going tomorrow for bloodwork -- a thyroid panel from my endo, and complete blood work from my g/e doc -- so we'll get a look at what's really going on there. I'm actually seeing my endocrinologist on Friday, and I'm curious as to what my numbers look like, I haven't seen them since August. (She's an idiot about releasing them to her patients through the mail.)
I'm hopeful that the gastropareris is a result of being slightly hypo for many months, and that perhaps it can resolve on its own if I can tweak my levels appropriately.
---
* I could also have sustained damage to my vagus nerve during my surgeries; I know that I sustained some damage to my recurrent laryngeal nerve, which is a branch of the vagus. I really don't want to think about that, but it's something I'll discuss with my ENT when I see him on Thursday.
Thursday I was tired anyway, having been up stupid-late the night before. So Thursday night I went to bed at a decent hour and got plenty of sleep, and still Friday I was like a zombie. A zombie with bizarre emotional reactions, like laughing too long at something that would ordinarily merit a smile or at the most a chuckle.
Needless to say, I quit taking the stuff.
Yesterday's research brought me to a support forum where there was plenty of discussion of gastroparesis, Reglan, and all that jazz. I'd say the majority of people who talked about trying Reglan couldn't deal with the side effects, but some were helped by Domperidone, with fewer side effects.
Gastroparesis is caused either by damage to the vagus nerve*, or by a problem with the muscles that control the stomach's normal churning motions. Many cases are idiopathic, but hypothyroidism is linked to the condition. I even found an abstract that demonstrated that thyca patients who go hypo (become extremely hypothyroid) for their whole body scans develop gastroparesis during their hypo phase. I don't know why it took me so long to put these facts together, but I realized the following that may have something to do with my current condition:
1) I spent a good deal of time last year hypothyroid, because of the great med experiment in which I discontinued my Cytomel, and during which my endocrinologist was strangely loathe to increase my Levoxyl.
2) I had a Thyrogen-stimulated whole body scan in August. It's true that I did not become systemically hypothyroid, but my TSH was outrageous (159!), and I felt off for a while after that. So off, as a matter of fact, that I finally went back on my old Cytomel+Levoxyl regimen in early September.
3) I have no idea what my levels are, since I have yet to see my November thyroid panel results which were run to see how the return to the old regimen was suiting me. For all I know, I've been hypo this whole time. There have certainly been times when I've felt hypo -- cold all the time, skin drier than paper, funky hypo half-brows -- but I'm generally not fatigued, nor am I depressed or brain-fogged... that I've noticed, even though there has been a lot of stress lately.
I'm going tomorrow for bloodwork -- a thyroid panel from my endo, and complete blood work from my g/e doc -- so we'll get a look at what's really going on there. I'm actually seeing my endocrinologist on Friday, and I'm curious as to what my numbers look like, I haven't seen them since August. (She's an idiot about releasing them to her patients through the mail.)
I'm hopeful that the gastropareris is a result of being slightly hypo for many months, and that perhaps it can resolve on its own if I can tweak my levels appropriately.
---
* I could also have sustained damage to my vagus nerve during my surgeries; I know that I sustained some damage to my recurrent laryngeal nerve, which is a branch of the vagus. I really don't want to think about that, but it's something I'll discuss with my ENT when I see him on Thursday.
Thursday, January 03, 2008
I'll try it, but I have my doubts
I saw the doctor today, and now have a diagnosis: my stomach doesn't empty properly. The doctor thinks I had an infection at some point and that led to this problem, technically called gastroparesis. It usually hits diabetics and some cancer patients, but there is a tiny percentage of people who get it following an infection, including, apparently, me.
I'm on a new drug to treat it, Reglan. The list of side effects (including dizziness, drowsiness, depression, suicidal ideation) is scary -- obviously I will have to pay attention to these things. If the dizzy/drowsy thing happens, I simply can't take it, because, you know, I have a life and it's not as if I can just give up driving.
Reglan, or metoclopramide, crosses the blood-brain barrier which is why it can cause these screwy side-effects. There's a drug available in Canada, Domperidone, that has much the same effect, but doesn't cross the barrier, and so has far fewer side effects. The only problem is, the FDA hasn't approved it -- and my g/e doc has no idea why they haven't. Apparently it's not difficult to get, though.
DH is highly skeptical that this is going to work: Oh, so you'll just go on this medication for 3 months and then you'll be fine? Right. I can see his point. I'm also concerned about the side effects, always thinking about that cost-v-benefit equation. How much is this really going to help to stop my acid reflux? The doctor suspects some muscle weakness in the ring muscle at the top of my stomach, but it's a chicken/egg situation: the slow emptying is stressing the ring muscle, so if the emptying improves, maybe the muscle can get better and that will help, too.
Possibly the worst thing about this new drug is that I'm supposed to take it 30 minutes before I eat, 3 times a day. I do not eat on anything even remotely like a schedule, and now I'm supposed to figure out when I'm eating, subtract 30 minutes from that, and remember to take this stuff? Breakfast and supper shouldn't be too difficult, but lunch is always going to be a problem. At least it doesn't interfere with any other medications or supplements (at least not the ones I'm taking.)
In the meantime, I've got two different acid-blockers to try out as well. This is going to take a little while to figure out. I took one at dinner and felt a little spacy, but I had been feeling exhausted all day. Am I just tired, or is it the new meds? We'll see what happens tomorrow.
I'm on a new drug to treat it, Reglan. The list of side effects (including dizziness, drowsiness, depression, suicidal ideation) is scary -- obviously I will have to pay attention to these things. If the dizzy/drowsy thing happens, I simply can't take it, because, you know, I have a life and it's not as if I can just give up driving.
Reglan, or metoclopramide, crosses the blood-brain barrier which is why it can cause these screwy side-effects. There's a drug available in Canada, Domperidone, that has much the same effect, but doesn't cross the barrier, and so has far fewer side effects. The only problem is, the FDA hasn't approved it -- and my g/e doc has no idea why they haven't. Apparently it's not difficult to get, though.
DH is highly skeptical that this is going to work: Oh, so you'll just go on this medication for 3 months and then you'll be fine? Right. I can see his point. I'm also concerned about the side effects, always thinking about that cost-v-benefit equation. How much is this really going to help to stop my acid reflux? The doctor suspects some muscle weakness in the ring muscle at the top of my stomach, but it's a chicken/egg situation: the slow emptying is stressing the ring muscle, so if the emptying improves, maybe the muscle can get better and that will help, too.
Possibly the worst thing about this new drug is that I'm supposed to take it 30 minutes before I eat, 3 times a day. I do not eat on anything even remotely like a schedule, and now I'm supposed to figure out when I'm eating, subtract 30 minutes from that, and remember to take this stuff? Breakfast and supper shouldn't be too difficult, but lunch is always going to be a problem. At least it doesn't interfere with any other medications or supplements (at least not the ones I'm taking.)
In the meantime, I've got two different acid-blockers to try out as well. This is going to take a little while to figure out. I took one at dinner and felt a little spacy, but I had been feeling exhausted all day. Am I just tired, or is it the new meds? We'll see what happens tomorrow.
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