It has only been 8 days since I've written the last health update, but a lot more has happened even in that short time. It has taken long enough, but things are finally moving forward.
Before we get to all of my appointments, I know people are wondering how I'm feeling. Not having the severe pain in my head around the clock has put me in a much better mood.
The antibiotics the doctor put me on seemed to help a bit. I didn't see the huge improvement in my digestion that I saw before, only a very slight improvement.
I do have a bit more energy though. I'm not sure if it's from the antibiotics or the reduced pain levels. Either way, I'll take it.
I've actually done several loads of laundry and cleaned the bathroom (with Kaylee's help) this week. That doesn't sound like a lot, but it's more than I've done in months.
Don't get me wrong. I still spend most of my time in bed too tired to do anything but lay down. However, it's nice to be able to get up and contribute to the house here and there when I feel up to it.
My brain fog and mental cognition feel like they're getting worse. If my muscles aren't getting the nutrition they need, it shouldn't be surprising that my brain isn't either. I have hard time concentrating on anything for very long and my memory has become spotty.
My weight is hanging steady right at 111, so I'm trying to increase my calories again to see if we can put a few more pounds on me. Even though I've gained 12 pounds, I'm still underweight.
However, I'm in better spirits because I feel like things are finally moving in the right direction. I have doctors appointments scheduled nearly every day now between my primary, various specialists, the chiropractor, dentist and physical therapist.
Thank goodness for my amazing husband who drives me to all of these appointments. Many of them are off the mountain, so it's quite a trek for us!
I Saw a GI Specialist!
Remember that meltdown I had over learning that I wouldn't be able to see a GI Specialist until January? Well, it worked because I woke up Thursday morning to a notification on my phone that I had a GI appointment Friday morning. Success!
I went to the appointment, this time on my own. Since it was short notice, Brian needed to stay with the girls in the waiting room.
I was a little nervous to talk to the GI doctor on my own since I've come up against so much medical misogyny up to this point. However, the GI doctors recognized right away that my weight loss is an issue, and there was never any implication that it could all be in my head. It's sad that I have to be worried about these things!
The GI doctor I saw was a Fellow (which means he's young). We talked through my medical history, symptoms and what tests have been run so far.
He said that I should easily be able to maintain my weight by eating 1,600 calories a day (and perhaps even put on weight). So the fact that I was eating 4000+ calories a day and barely gaining was unusual.
He seemed a bit baffled by my case and joked that I'm a bit of a medical mystery. He went and got a much more experienced GI doctor to help with the consult.
We talked through everything again, and he seemed to think a pathogen was possible since the onset of the weight loss was pretty sudden and rapid. Of course, he can't be sure without testing, and it could be other things as well as you'll see.
So he said let's order a bunch of tests and figure this out. He ordered:
- Colonoscopy with biopsy
- Endoscopy with biopsy
- Hydrogen Breath test
- A1C blood test
- Fecal fat test
- CBC blood test
The letter he sent back to my primary doctor gave some indication of what all of these tests would be looking for.
The A1C test was to look for diabetes. I didn't know before, but diabetes can present with extreme weight loss. My test came back and mine is actually a bit on the low side at 4.9%. I'm not sure what that means, but we can safely rule out diabetes and pre-diabetes.
I'm not sure why he ran the CBC again, but this time my platelets were elevated. I'm not sure why that would be – they haven't been elevated on my other CBC tests.
The fecal fat test is to check for Steatorrhea, which is a malabsorption of fat, and may be what I have rather than diarrhea. It tends to cause more extreme weight loss and muscle wasting like I've experienced.
Steatorrhea can be caused by an issue with your pancreas, liver or small intestine. I've also read it can be a symptom in severe SIBO cases. Since I had acute pancreatitis and a gallbladder removal last year, this is a real possibility.
The test is awful and horrible and I wouldn't wish it on anybody. You can Google it if you want to see what's involved, but I'll be submitting that sample to the lab on Thursday for analysis. I'll also be submitting another sample to double check for parasites as well (this will be the second or third check for that).
If I have Steatorrhea, the breath test, colonoscopy and endoscopy should help pinpoint the cause. Since this is all out of my hands right now until all of these tests are done, I'm trying not to stress too much.
My biggest problem is scheduling all of these appointments. I can't take the Breath Test for 30 days after finishing antibiotics or it won't be accurate. I never would have started taking antibiotics if I knew I was going to see GI so soon! I also just read that you can't do the Breath Test for 4 weeks after a colonscopy because of what you have to drink.
So, I will need to get the Breath Test done around November 23 and get the colonoscopy and endoscopy shortly thereafter because my follow up GI appointment is on December 21 and everything needs to be completed before then!
It's a lot to try to sort and juggle while managing insurance approvals. Hopefully everything will line up perfectly!
Physical Therapy & Chiropractor
I've been seeing the chiropractor weekly and have a plan to see physical therapy twice a week. It's amazing that I leave both physical therapy and my chiropractor appointments headache free. They do come back, but not as severe as they were.
So far, I really like my physical therapist. She's really into natural health as well, so we talk about a lot of interesting stuff while she works with me.
Right now, she is doing a laser treatment, acupressure and some exercises with me. Her goal is to loosen up all of my tight muscles and then strengthen them.
She noted a couple things to me yesterday to mention to my doctors. The first thing is that my cerebrospinal fluid flows faster than what she'd consider normal. I have no idea what that means, but it's interesting.
She also said that I should ask my doctor about getting bone scans. She recommended both a bone density scan and a nuclear bone scan.
Since she's a physical therapist and not a doctor, she can't diagnose anything. So I'm not sure why she recommend the bone scans, but I'll mention it to one of my doctors and see what their thoughts are.
Endocrinology and ENT Specialist Appointments
I have my endocrinology appointment this week on Thursday. We'll see what they have to say about my thyroid nodules and whether the right side will need to be re-biopsied.
Right before I got word about my GI appointment, I found out I got in to see an ENT (ear, nose, throat) specialist too! That appointment is November 6.
It is mainly to confirm that the pain in my ear and throat are all referral pain from the Cervicogenic Headaches I'm getting. We're pretty sure that's what it is, but we want an expert to confirm.
We'll also talk to them about my thyroid, of course. An ENT would usually be the one to do a partial thyroidectomy in a situation like mine, where there's no hormone, antibody or cancer issues.
However, since we're pretty sure the pain is referred from my neck, not my thyroid, I am pretty sure we're going to be able to avoid surgery. I'm so grateful for that.
More Dentist Appointments
I also got to see the dentist today and got my first real filling! I'm so sad that tooth infection did so much damage in my mouth.
I talked to her about my wisdom teeth, and she doesn't see any issues with them, so I get to keep them for now. I have one more dentist appointment next week to get one filling and fix the molar that my wisdom tooth broke.
After that, I should be able to get my teeth cleaned and get back to having healthy teeth.
That was a lot of progress for such a short time! I'm exhausted now. It's time for a nap.