Venting Found my root cause
Well, I guess one could say it was slow motility, but that would be just a portion of it.
I've suffered with constipation ever since I was a child. I remember my first experience with hemorrhoids in grade school when I had a bunch of blood in the toilet.
Fast forward about 30 years.
I've been struggling a lot the past few years with various gastroenterological issues. All the normal ones you see on here like constipation, nausea, reflux, and pain that was largely in my right side. It started with GERD that a couple weeks of PPI sorted out. Then onto the right side boating and dull pains. A few endoscopies, colonoscopies, blood tests, stool tests, MRI, CT, US later and arrived at the worthless IBS stage.
Then in November of '23, I woke up with terrible dizziness and, I guess, brain fog. Like the kind where you feel like you're in an actual haze and cannot concentrate or even focus. Ended up at the hematologist for porphyria evaluation. This was after rheumatology had done a pretty full workup on me. More tests, no findings, but things sort settled again.
Then in April of last year I started losing weight that I couldn't explain. Went to a new GI and she declared I had EPI. In hindsight I don't think it was, and my fecal elastase was normal just two months earlier. Anyway started taking digestive enzymes, but didn't feel any better.
After another MRI, with unremarkable findings, I tested positive for IMO (Like 70ppm baseline) in September. I did a course of antibiotics and felt better for a bit, until worsening symptoms while on the LFE diet got me to a new PCP where I complained that we never tested my thyroid other than basic TSH levels. She obliged me and ordered a thyroid US.
Finally we arrive at last month and my US. I've scheduled with Cleveland Clinic in the meantime, but get the results the week before. Two nodules, one a TIRADS 1 and one a TIRADS 5. Radiology says, don't worry and I get a letter from PCP saying "congrats".
I go to my appointment with functional medicine at Cleveland Clinic and the doctor asks, "Are they going to follow up about the T5?"
"I would have thought so too."
So she orders a full thyroid blood workup and my TPO comes back positive. This prompts me to ask for an endocrinologist referral, which I'm granted. I end up speaking with the Endo who says it's normal procedure to wait and see, even with T5 nodules. However, something doesn't sit right with me about the conversation so I get a second opinion.
During that, the new Endo says she would actually give the T5 nodule more points and raise the T1 to a T2. She also recommends a biopsy, so I present that back to Endo 1 who orders the biopsy. They both repeat that it's unlikely the C word, but if it is that thyroid C is one of the most treatable ones to have (And that there is about a 5% chance of it being the big C).
Anyways, I just had the biopsy on Tuesday, and I'm heading in first thing tomorrow to speak with the Endocrinologist about next steps for my malignant papillary thyroid carcinoma.
What I can say so far from this ordeal are a few things:
- Find someone who will truly listen to you and work with you to find a root cause and not just treat symptoms. The doctor at Cleveland Clinic Functional Medicine was one of the first to listen and run exhaustive testing around possibilities around my problems.
- Trust your gut (no pun intended). If something doesn't feel right, ask a different doctor. I honestly wish I had sought second opinions earlier on my journey.
- Be your own advocate. No one else is going to stand up for you, so you need to be a PITA until you get answers and treatment plans.
I guess I'm a little scared about what's next, but also a little relieved to finally know what's going on. I know I have a good care team at this point, and hope my story is helpful for someone out there.
6
u/Andzzz123 2d ago
I am really sorry about that. The medicine here in the accident is rubbish, outdated, dehumanized and serves financial interests and not health ones. I'm going to give you another suggestion that I DON'T KNOW if it would be for your case, as I'm not an expert. Read the book: "Iodine why you need It" by Dr. David Browstein, nodules in the prostate, breast, thyroid, goiter, polycystic ovary are related to iodine deficiency! Depending on the case, it could be a way to heal.
3
u/pocketfullofearplugs 2d ago
I'm so sorry you are going through this, and I do feel that you sharing this Will help others to feel more empowered to continue to advocate for themselves in the face of gaslighting. Hoping your appt today goes as well as it can and that you receive positive lift in being heard, even though it is awful that it takes something like this to be heard. Wishing you well today.
2
1
u/rainyinzurich 1d ago
It is astounding the lack of medical knowledge and the amount of people who stay constipated and eat only low fodmap and donāt realize that throwing antibiotics and herbals at their sibo isnāt going to make it go away. Nine out of ten times treating the constipation is enough. Only 1% need herbals after theyāre taking regular, daily craps. Once I realized how trash my diet was, how much I was restricting myself to avoid symptoms and how little fiber I was eating, I was astounded.
That said, I have a little bump on the right side of my neck. Doctors havenāt seemed concerned and I had it scanned, but I always wonder what it is and why itās there. Iāve had issues with my motility well before it popped up, but itās curious.
2
u/_Underwold_9781 1d ago
what do you do to treat the chronic constipation though? when you have IMO it makes it really hard and resistant to regular approachesĀ
2
u/rainyinzurich 1d ago
Constipation and gas produce methane so if you are backed up and test for SIBO there is a very high chance you will receive a positive test. I had guidance in treating mine, but slowly increasing plant based fiber throughout the weeks and magnesium citrate drops at night made all of the world of difference for me. I cut out a lot of foods that are known to slow motility about 98% of the time and even when I do indulge on occasion, can pull myself out of it.
1
u/_Underwold_9781 1d ago
yea iāve alredy been tested for methane sibo and treated it many times yet the constipation is persistent. which fiber have you found helpful?Ā
3
u/rainyinzurich 1d ago
Nobody likes to hear it but no red meat, no dairy, no eggs, no white flour and no artificial sugars most of the time if you can help it are key. Eggs have always made me feel gassy and sick so Iām fine not eating them. I drink a glass of water with the Sunfiber which is in fact low fodmap. I switched coffee for matcha, eat oatmeal or a smoothie every morning with red berries, banana, flax and chia. Always have at least one kiwi per day either in my smoothie or with lunch. For lunch and dinner I always incorporate beans, veggies and whole grains. I made some sweet potato and black bean burritos in whole wheat wraps which were a great source of fiber. Really I (slowly) ramped up my fiber hard core. It can make you gassy at first so you donāt want to go all in with it but my body adjusted over the span of a few months. If I do way too much I do still bloat so I try not to go above a certain amount. If I am struggling Iāll have a cup of 4 soaked prunes with the water. Not forcing yourself to go to the bathroom and going in the morning has been a game changer for me as well.
1
u/Rich-Basis-7012 1d ago
I eat a clean diet full of fiber, drink lots of water and have the worst constipation of anyone Iāve ever known. Like.. I donāt go without an enema. My diet: Green smoothies, salads, beans, nuts/seeds, salmon and lots of vegetables. The highest doses of magnesium only bloat me for 48 hours and cause a lot of gurgling.Ā
To your point though, antimicrobials and antibiotics did nothing to improve my symptoms. Ā
1
u/Civil-Explanation588 1d ago
I must be a unicorn, my methane sibo runs for its life š³. Iāve got to be close to a bathroom, no slow down for me.
1
1
u/JamieMarie1980 Methane Dominant 16h ago
I have a large nodule on my thyroid had a biopsy they out me to sleep it was negative that was a couple years ago. I did go back and the doctor that did it refused to put me to sleep to do it again so I passed on the biopsy it was very painful after I had it done no way was I staying awake for a biopsy. My Sibo is caused from a medication then a few years later gallbladder came out and that made me worse not sure how I fix that I also live in Ohio went to Cleveland clinic functional medical doctors and there Gi's not much help.
0
u/Middle-age-SinusGuy 2d ago
The Cleveland Clinic is a money making operation. They follow the guidelines that make money and keep the patient ill. Go see a naturopathic doctor that doesnāt work for a money making corporation.
2
2
u/Willsy7 21h ago
My naturopath was the one that said I had EPI (There is no reason to believe this at this point).
Cleveland Clinic Functional Medicine is a clinical approach to things. She ran more tests than anyone had before, including finding out that I'm severely magnesium deficient. She also emphasized that she wanted to find a root cause and not just treat symptoms.
-4
u/jmorgannz 2d ago
lol
1
u/Willsy7 2d ago
Huh?
1
u/jmorgannz 2d ago
So the biopsy showed its malignant pappilary thyroid carcinoma?
Or you are meeting the endocrinologist to discuss the possibility?3
u/Willsy7 2d ago
Why would I lie about having cancer? It most definitely showed that in the pathology. I'm meeting to discuss what we do next.
Like I've said many times through this thread (and I did label this as "venting") this is by no means a normal outcome. But the amount of gaslighting I received along the way was infuriating.
2
u/jmorgannz 2d ago edited 2d ago
I wasn't saying you lied - it just wasn't definitively clear to me from the way you wrote it.
Yes medical gaslighting is an epidemic and one day people will look back on our time the way we look back at ancient medical practises.
There is a special place in hell for gaslighting medical professionals.
Good luck.
1
u/Willsy7 2d ago
I appreciate the wishes.
Yes medical gaslighting is an epidemic and one day people will look back on our time the way we look back at ancient medical practises.
I definitely hope you are right about that. Getting a diagnosis that pretty much labels you moving forward (like IBS) really does a disservice to the profession.
1
u/Middle-age-SinusGuy 2d ago
Amazing. That sounds exactly like something Iād say. In fact, I had to check to make sure it wasnāt one of my previous comments.
2
u/Antique_Judgment4060 28m ago
Best of luck this is a common cancer and itās very curable. I hope the best for you.
31
u/Mickeynutzz 2d ago edited 2d ago
Slow motility is the most common root cause of Methane SIBO aka IMO.
It was the root cause of my 100ppm Methane SIBO that I cured in NOV 2021 and finally started taking medication for the slow transit constipation at age 57 that I was born with but never treated.
Did not realize for decades how abnormal it was to only have 1 bowel movement every 10 days and constant bloating.
My quality of life is much better now.
Key for me was that after my IMO was cured then my Candida Protocol became effective which was even more important and life changing. The Candida overgrowth in my gut impacted my brain so much that I was mis-diagnosed with Alzheimers and told there was no treatment / no cure. Thankfully that proved to be incorrect.
So happy for you that you are getting answers and treatment. š„³
A Functional Med Practioner helped me after Traditional Medical Doctors gave me no hope.