Help wanted (Score so far related)

[Jersey Girl]

Oh and I'm 99% sure I mentioned Hashimoto's to that bad PA I had. The one who was waiting for me to stop talking so she could go down her "script". In late August I was trying to get with the gastro doc whose schedule was out to November and that's how I ended up with the NP. But again, the issue got pushed aside in favor of other protocols.

Blah, blah, blah, blah, blah, blah, Jersey.

[IWMP]

Hope you haven't got pancreatitis or diverticulitis:(

What is the thyroid medication about?

Your health care person sounds awesome. It's great. Hope you all are enjoying new year. I'm ready for some normality now.

[msnobody]

Have you ruled out gastroparesis? I should know that already.

[Jersey Girl]

Ladies! Here's how it goes...

Low Thyroid---Levothyroxine tablets---Hashimoto's antibodies---tablets poorly absorbed---slows disgestive tract---slow gut motility---constipation---food waste hanging out in the gut---SIBO---Thyroxine oral solution---improved symptoms at 2, 6, and 8 weeks.

Studies below:

https://pmc.ncbi.nlm.nih.gov/articles/PMC4056127/

https://pmc.ncbi.nlm.nih.gov/articles/PMC8453642/

https://pubmed.ncbi.nlm.nih.gov/38490469/

Primary ordered a refill of tablets. I need to go in for labs. She said that health insurance won't cover the oral solution. The Boy wants to pay out of pocket for it.

I do have an update and it's good. I'll make a separate post right now briefly, I need to run out to town.

[Jersey Girl]

The days when I felt better were:

1. First few days on Xifan/Rifaximin antiobotic all 3 times. Recall with the first round I ran out and bought that sofa.
2. The first days on probiotics.

For the past week...I've felt better than ALL of those times and it's EVERY day. Some inklings of symptoms but nothing scary. Gut is making all sorts of noises in the lower half. Like...it came back to life. Sleeping through the night and soundly. Eating more throughout the day. What I've done...

1. FD Gard
2. Probiotics
3. Added back in blueberries and green beans (slowy) for fiber.
4. Cheat snacking on Ruffles Original chips and original Goldfish crackers. I went overboard with this as soon as I got some but now watching portions.

I'm almost afraid to report this in writing but it's best I keep it in my timeline of events. I know I could go backwards but for a solid week...this is how it's been.

Weight: 86 lbs

[Jersey Girl]

Crappy night last night. Awake until 4 a.m. with symptoms. See how I go up and down? Tried to make sure to take it easy on the tummy today.

Weight: 82 lbs

See?

Going to do daily weight checks here in preparation for gastro doc on the 28th. Making a hit list for that appointment.

1. Test me for everything and anything. Small intestine aspiration, gastric emptying, whatever they have because the only tests I've had are the scopes and CT scans and quite frankly, they don't even really know what's wrong with me!

2. For all they or I know, it's fungal, and three rounds of antibiotics were wasted. Could be autoimmune. Could be any darn thing and I feel like I am not being served aggressively like I should have. That PA wasted 4 months of this past year. The NP now figures she's probably out of her depth. We agree on that. She reports to the doctor so where is he? He just reads a bunch of clinical notes or messages and does he even watch the weigh ins? If I go in feeling good, we think it's recovery. Then I tank again and all of this has gone on for 1.5 years if you count the onset of regular symptoms. Something is ravaging my body and they haven't tested me for anything!

3. I'm a year out from the scopes. What's changed? I go in and out of symptoms, up and down weight, someone besides me needs to be actually managing this case. Like I dunno, a gastroenterologist.

4. Yes I'm angry again. Wondering if I fell through the cracks somehow. I don't complain enough? I don't cry at every appointment? I suck it up and endure?

I just want to try to describe what I'm feeling right now so I don't forget. Abdomen throbbing, coming in waves like ripples right around the navel, the sides of my belly (navel area) are bloated, feels like bugs crawling through my gut.

WHY???

This past week my gut started working again in every way it's supposed to. So WHY is this happening?????

This stuff is wicked!!!

[Marcus]

Ladies! Here's how it goes...

Low Thyroid---Levothyroxine tablets---Hashimoto's antibodies---tablets poorly absorbed---slows disgestive tract---slow gut motility---constipation---food waste hanging out in the gut---SIBO---Thyroxine oral solution---improved symptoms at 2, 6, and 8 weeks.

Studies below:

https://pmc.ncbi.nlm.nih.gov/articles/PMC4056127/

https://pmc.ncbi.nlm.nih.gov/articles/PMC8453642/

https://pubmed.ncbi.nlm.nih.gov/38490469/

Primary ordered a refill of tablets. I need to go in for labs. She said that health insurance won't cover the oral solution. The Boy wants to pay out of pocket for it.

I do have an update and it's good. I'll make a separate post right now briefly, I need to run out to town.

I first read this as you were RUN OUT OF TOWN. No way!!! we would have your back!!!!

[Marcus]

I am so worried for you. 82 lbs?????? Can you get yourself out here to the east coast and see a specialist? I know how biased that sounds but I am beyond caring, we need to find out out if you need better doctors, for a start.

[Jersey Girl]

Ladies! Here's how it goes...

Low Thyroid---Levothyroxine tablets---Hashimoto's antibodies---tablets poorly absorbed---slows disgestive tract---slow gut motility---constipation---food waste hanging out in the gut---SIBO---Thyroxine oral solution---improved symptoms at 2, 6, and 8 weeks.

Studies below:

https://pmc.ncbi.nlm.nih.gov/articles/PMC4056127/

https://pmc.ncbi.nlm.nih.gov/articles/PMC8453642/

https://pubmed.ncbi.nlm.nih.gov/38490469/

Primary ordered a refill of tablets. I need to go in for labs. She said that health insurance won't cover the oral solution. The Boy wants to pay out of pocket for it.

I do have an update and it's good. I'll make a separate post right now briefly, I need to run out to town.

I first read this as you were RUN OUT OF TOWN. No way!!! we would have your back!!!!

I only wish I could be run out of town right now! Jettisoned off the planet! Nowhere to run or hide with this mess.

[Jersey Girl]

I am so worried for you. 82 lbs?????? Can you get yourself out here to the east coast and see a specialist? I know how biased that sounds but I am beyond caring, we need to find out out if you need better doctors, for a start.

I've seen lower weight than that, Marcus. See how it goes up and down? 86 one day, 82 the next? I have a really good scale and I don't understand it. Like I indicated above, seems like the only person doing management is the patient in this case.

If I could get out the EC I would. I can't really travel since I can't really eat anywhere without well, without who knows what happening.

I've only seen the gastro doc ONCE. I tried to make an appointment with him in late August when all hell broke loose for me. He was scheduled out to November, so I took whatever they had. That's how I got the NP that I like.

Think about this...I can't even schedule in with the dietician yet.

Why? I don't have a reliable diagnosis.
Why? I haven't been tested for anything.

We're basically throwing stuff at the wall hoping something will stick.

See how messed up this is? The problem is that I get so caught up in symptoms that get distracted and I forget about things. They only occur to me much later when I'm settled down and can think.

Jan 28th is the day. Today I got myself put on the cancellation list in case something opens up earlier.

This is absolutely crazy!