- CASE FILE
Hi! I’m 22 and have an unidentified autoimmune illness, weird food sensitivities, and unexplained “severe iron deposition”. Help!
ABOUT THIS CASE FILE
Short version: I have been dealing with unexplained health issues for the past two years, and need help. I experience brain fog, constipation, slight difficulty with swallowing, fatigue, nausea (no vomiting), achiness, food sensitivities that make my symptoms worse (that I shouldn’t have issues with according to an allergy panel), and have lost about 80-90 pounds from my heaviest (before issues) to my smallest weight (around May). I also have low blood pressure, whenever I have it measured. I used to have hypothyroidism and low iron levels, but don’t now. I have severe iron deposition in my systems, though the iron levels in my blood are normal. I have a positive ANA, and had low WBC until I started taking steroids (now just my lymphocyte % and ALC and Monocyte% are low). I also had my gallbladder removed in July of 2018, but symptoms didn’t improve. I also have not had my period since December 2018.
No diagnosis as of yet.
I currently take Zofran for nausea, digestive enzymes, an occasional probiotic when my stomach is settled, Pantoprazole Sodium for a daily antacid, and Predisone as a steroid.
(Note: the iron deposition isn’t caused by hemochromatosis. I’ve been tested for that, and it was negative.)
I am seeking help because I’ve been struggling with mystery health issues for about two years now. I want to put a name to this so I can figure out how to manage this so I can live a (mostly) normal life, if not cure it.
Growing up, I never really had any health issues, as far as I recall. Colds and Flus and sickness like any other child, had gotten bronchitis once as a teenager, but recovered after being treated for it. (I did have an odd pain, however, every so often in my chest area. Dull when not breathing, sharp and super painful when inhaling or exhaling, and it would last for a few seconds to maybe a minute or so.. I did do a stress test in 2017, and it was decided that it wasn’t my heart, and I think they said it may have been acid reflux or something related. I still have it, but not nearly as frequently--it’s only every once in a great while now.)
I used to work in a grocery store as a service clerk and cashier, as well as seasonally at a local non-profit. I also volunteered for events at my church, sang in the choir and during offertory, and worked in the church nursery. I also used to be able to eat (almost) anything, and not have to worry about how it would affect my systems. I was overweight, almost 170 pounds, and was taking iron supplements and Levothyroxine Sodium for Hypothyroidism (diagnosed in 2016). (I did notice that I was becoming slightly lactose intolerant, but didn’t think too much about it--just explored non-dairy options and took lactase tablets.) I also have had a nodule on my right buttock for as long as I can recall. I could lift 20+ pounds, push, shove, run, and move as any normal person would.
Then, in the fall/winter of 2017, I got struck with extreme nausea and chills while at my cashiering job. It was so bad that I was stuck in the restroom, and had to call my dad to come pick me up. I didn’t vomit, though. I felt miserable for a while after that, but then went back to working there when I felt recovered. I had another similar episode at my seasonal job at the time, where I had experienced nausea, chills, and some stomach pain. I had to ask for a ride home, and had to rest for the rest of the day. I had several more incidents like these (mainly without pain) at my main job, and one more at my seasonal job.
In the remaining part of December-January 2019, I had one more major episode like this where I was barely able to eat anything, having difficulty swallowing, and dealing with weakness, nausea, and chills (think kinda like the flu but worse). I was barely able to even get up to walk to the bathroom. This was also when my weight loss began, I believe. (I also stopped taking my Levothyroxine Sodium and iron supplements, as my stomach reacted badly when I took them.)
In December of 2017 through January of 2018, I had visited the local urgent care, hospital room, and my PCP to see what they could do. I had blood labs and other basic tests done as well as an ultrasound on my abdomen, and, my PCP tried to convince me (and convinced my parents) at the time that it was anxiety related since nothing showed up.
In February through March 2018, I had been referred to a local GI doctor, who ran an endoscopy (with biopsies taken), upper GI, blood work, stool test, CT scan...nothing showed up except for an ovarian cyst (which an OB/GYN said was a functional one and thus wasn’t an issue). In May through June 2018, I had more followups with my PCP and tests run by my GI doctor--more blood tests, bacterial breath test, gastric emptying study, and a hepatobiliary scan--as well as another trip to the ER for possible dehydration and weakness (and all the other symptoms). As usual, everything looked normal except for my hepatobiliary scan, where my gallbladder took much longer than it should have to show up (4 hours as opposed to 30 minutes or so).
July 2018, I had my gallbladder removed, no complications or issues. However, my symptoms didn’t seem to improve.
I think it was around this time that I started noticing more reactions to food I was ‘fine’ with before, as well as noticing more achiness, fatigue and brain fog, as well as becoming winded more easily.
October through November 2018, I continued to have followups and tests run by my GI doctor--more bloodwork, and an MRI scan of my head. In this round of bloodwork, they discovered that my WBC was very low (as well as some other counts being off). I was then referred to my local Hematologist/Oncologist (H/O). November through December, I had more bloodwork done, a bone marrow biopsy taken, and more followups with H/O, GI, and my PCP. My bone marrow biopsy showed that I had neutropenia, that I was negative for myelodysplasia and leukemia/lymphoma, and that my stainable iron was reduced.
(December 2019 was also when I had my last period.)
In January of this year (2019), I had two Iron Infusions to help with the “reduced stainable iron” (and as my H/O supposed that my symptoms could be caused by iron issues, although the iron levels in my blood were just fine). Symptoms didn’t improve.
February through March, I had more followups with my local GI, H/O, and PCP; and had received referrals to a GI doctor and Rheumatologist (RH) in the U of M hospital system. They ran more blood tests, a Cortisone Stimulation Test, another Barium swallow. Cortisone test was normal, Barium Swallow was normal, but I did have a positive ANA test. Local H/O also began to have me do monthly blood draws to monitor my WBC.
April through May, my PCP finally took it seriously because of my weight (I hit my lowest in May-June at around 86 pounds), and ordered a few blood tests, including an allergy panel. It showed that foods I was having issues with (milk, wheat, etc.) I should have no issues with whatsoever. (He also prescribed me some peptide shakes to help add calories.) Had more appointments with my other doctors, had an MR Enterography (normal except for the severe iron deposition in my organs), more bloodwork (was tested and found negative for hemochromatosis), another Endoscopy (normal) as well as an aborted colonoscopy and Anorectal Manometry (due to constipation and difficulty I had been experiencing). I was also given another Bacterial Breath test (again negative).
I had also begun experiencing occasional pain in my abdomen on my right side.
In June, I was given yet more bloodwork by my local GI, as well as a pancreatic elastase stool test, which ruled out liver issues and pancreatic issues. My U of M GI doctor ordered an ultrasound of my liver area, which looked normal. My local PCP had also ordered a urine test, which was, again, normal. Various followups, nothing new findings-wise to report. I was prescribed prednisone by RH, my WBC began to go back into the normal range, and I started to gain weight slowly.
In July, an odd bump started to appear on my lower leg whenever I stand.
In August, I had an appointment with a U of M H/O for a second opinion on my bloodwork and my iron deposition. She, along with all other doctors at this point, believes that my issues are autoimmune related, and that my iron deposition could be a result of my system experiencing the stress from the extreme weight loss I went through, but she couldn’t say for sure. I had more bloodwork, and my iron levels are currently normal. WBC overall is in the normal range, while my Neutrophil% is high, and my Lymphocyte%, Monocyte%, and ALC is low.
I currently have followups set up with my RH, my local H/O (with bloodwork to get done beforehand), my local GI doctor, and my PCP.
Currently, I take Zofran, Prednisone, Pantoprazole, stomach enzymes, and an occasional probiotic. I am slowly gaining weight, and currently just having liquids (Kate Farms peptides shakes, juices, coconut water, etc.).
Lately, I have noticed some brain fog, achiness, and some occasional returning.
Please help me out if you can! I'd love to resume a normal life of working and volunteering!