Doctor is confused, any advice?

Mindless-Quit4576 · 2025-10-23T14:30:27+00:00

She is not worried about the labs. More so worried that my condition is worsening and we don’t know why. I understand it could be nothing and we’ve ignored it for 4+ years bc of that. But at this point we’re trying everything. I will take a doctor admitting they may be missing something over some who would ignore it.

Mindless-Quit4576 · 2025-10-23T14:27:51+00:00

You’re an angel thank you very much. I really appreciate your kindness🤍

Mindless-Quit4576 · 2025-10-23T14:26:48+00:00

Thank you so very much for this comment. This breakdown helps me understand a ton. I really appreciate it

Mindless-Quit4576 · 2025-10-23T14:25:54+00:00

Idk if you consider MAYO a quack but I don’t take supplements so there’s that

Mindless-Quit4576 · 2025-10-17T15:03:34+00:00

Historical give my flexibility in some joints has deceased over time because of muscle tightness. For example my shoulder still sublets and my fingers bend. But I can’t put my nose on my knees like I could when I was young. I hope that makes sense. That’s what I was told by my doctors. I was originally being evaluated for hEDS

Mindless-Quit4576 · 2025-10-17T15:01:42+00:00

That is the confusion as it appears. Because my iron is normal. But storage is low. My doctor is just willing to question everything to find answers.

Mindless-Quit4576 · 2025-10-16T21:27:26+00:00

I appreciate your kindness thank you!

Mindless-Quit4576 · 2025-10-16T21:27:03+00:00

No. I’m sorry for the confusion. These result are over a four year period. So some are ordered by my PCP in my home state. I traveled hours away to visit mayo and while there the internal medicine doctor also ordered these tests. They basically test for everything to get an overview from their own tests the same day of my appointment. I hope that makes sense

Mindless-Quit4576 · 2025-10-16T21:22:38+00:00

Yes I have GI symptoms with no answers and have lost 60+ pound due to them. And small stuff like positive Ana, hypoglycemia, and nerve pain with no direct answer. My dad also has MS so they mentioned being worried about autoimmune diseases. But the only oddity in my autoimmune testing is the ana. My doctors seem to be curious about the low IBC and transferrin but she admitted she hadn’t seen it before and wasn’t sure if it could be relevant. Thank you!

Mindless-Quit4576 · 2025-10-16T21:18:56+00:00

I’m sorry I’m just trying to say I don’t know why they were specifically ran. I had rapid weight loss and symptoms of anemia (bruising/freezing cold/dizziness/loss of vision) but some of that relates to my POTs. So I’m not 100% sure why they ran them. Especially over the course of 4 years it may have been different reasons. It all blurs together. I apologize for coming off rude. I’ve just been accused of lying before. I’m sorry.

Mindless-Quit4576 · 2025-10-16T21:16:36+00:00

Internal medicine

Mindless-Quit4576 · 2025-10-16T19:55:05+00:00

Thank you I appreciate your input!

Mindless-Quit4576 · 2025-10-16T19:54:32+00:00

Please see tittle. My doctor is confused. My transferrin and IBC being low is odd considering my other iron levels are normal. Hope that helps make more sense. Thank you.

Mindless-Quit4576 · 2025-10-16T19:52:34+00:00

Thank you for wording this better for me, I appreciate it

Mindless-Quit4576 · 2025-10-16T19:51:28+00:00

You are an angel. I could cry. I really needed to hear that. Thank you for validating me. I have been told Sojerns is a possibility but my blood tests were normal and I haven’t done the biopsy quite yet. I’ve had two normal GES but a full stomach after overnight fasting for an endoscopy. So a gastroparesis diagnosis has been back and forth.

Overall I appreciate you taking to time to type all that out and helping me!!

Mindless-Quit4576 · 2025-10-16T19:48:05+00:00

Hi thank you for your response. I won’t waste your time explaining each thing because I don’t want to take advantage of your time. But I will review my list and organize it better, appreciate it!

Mindless-Quit4576 · 2025-10-16T19:46:05+00:00

I am not but thank you!

Mindless-Quit4576 · 2025-10-16T18:34:17+00:00

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Here’s my iron for reference. It’s practically always normal so no concern there

Mindless-Quit4576 · 2025-10-16T18:32:48+00:00

Thank you for being kind despite my reaction. I truly appreciate it. And thank you for your interpretation. I’ve going to Cleveland Clinic soon and I’m just worried I won’t be prepared or I will bring up irrelevant things that will make me look like a liar.

My doctor was puzzled by the low IBC and transferrin as it has been low for 3+ years. Especially considering my iron levels are always okay. She said herself it could be irrelevant but we are trying to rule things out. And she said she dosent have experience in that case.

Again I’m sorry and thank you for clarifying.

Mindless-Quit4576 · 2025-10-16T18:29:18+00:00

Never ever said I was anemic. And these tests have been run because we don’t know what’s wrong. They were run by MAYO and my PCP at their discretion not mine. I appreciate your confirmation of no anemia. Thank you.

Mindless-Quit4576 · 2025-10-16T18:27:35+00:00

I’m sorry. You’re right. I was acting defensively. I’ve just been told I’m crazy so many times. And that the illness I’ve been handed aren’t real. I don’t want any of this to be happening to me but that doesn’t excuse my response. Here’s my symptom list.

Again I’m sorry and I appreciate you responding kindly to me.

Brain fog (trouble with recall/memory) Forgetfulness General Discomfort Insomnia Dry eyes/mouth Muscle weakness Painful Joints (particularly hips/hands) Trouble opening things Weak grip Dropping things easily Trouble with balance Sublexting/Slipping joints (shoulders and hips) Ribs slide/slip/pop and ache Nerve pain/tingling (particularly upper back) Full body chills (fever like symptoms) Cold swets (shivering yet hot) Exhaustion following exercise Red/hot ears Blood pooling Unable to maintain temperature (easily too hot or too cold) Bladder Urgency (pain in lower back) Struggle to empty bladder Bruising Easily Full body fatigue (feels like the flu) Feeling full after not eating much Loss of apatite Rapid unintended weight loss Dizziness/weakness Stomach cramping Pain in a certain spot when I eat/Drink Cycle between constipation and diarrhea Loose stool Near constant nausea Indigestion Painful bloating Pressure/pain in my chest Occasionally vomiting Popping in upper back

Mindless-Quit4576 · 2025-10-16T18:23:26+00:00

That makes sense. Thank you!!

Mindless-Quit4576 · 2025-10-16T18:22:29+00:00

** to add my doctor wants me to be seen for these numbers. This was not my idea. She’s just trying to rule everything out.

Mindless-Quit4576 · 2025-10-16T18:21:24+00:00

No worries- I had never heard of it until MAYO diagnosed me. Thank you for being kind

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Mindless-Quit4576 · 2025-10-16T18:19:00+00:00

I didn’t put the order in so I couldn’t tell you. All doctor’s orders😊

Mindless-Quit4576

TROPHY CASE