- CASE FILE
44 Year old female suffering almost a decade w/ multiple unrelated non-hereditary non-environmental symptoms & no explanation for most of it
ABOUT THIS CASE FILE
Degenerative disc disease requiring 5 spinal surgeries and 1 more upcoming shortly, most likely before the end of 2019. Sometime between the 1st & 3rd surgeries (1998-2001) I became chronically constipated, and to this day take 2 doses of Miralax plus 10 stool softeners daily. Rapid weight loss early 2010 resulting in removal of inflamed/infected gallbladder. Severe anemia was diagnosed requiring iron infusions in 2013 but it was determined to be caused by uterine polyps so a hysterectomy was eventually performed in 2014. Around the same time I was diagnosed with Hashimoto's Thyroiditis (but not treated) and started noticing strange new intolerances including surgical adhesive, certain narcotics, and gluten (but Celiac runs in my family). The Hashimoto's explained the weight loss and then the fact that I was eating a healthy balanced diet and exercising regularly - treadmill 3-4 hours a day - but had started gaining weight. By the end of 2014/beginning of 2015 I was having trouble swallowing and was choking on everything, including water. It was determined that I had esophageal dysmotility plus a malfunction of the lower esophageal sphincter. Multiple colonoscopies & upper GI scopes over the course of a couple years didn't find anything definitive for either the constipation, weight gain, or esophagus problems.
By the end of 2015 I finally saw another endocrinologist and he started ruling things out & treating for the Hashimoto's but ended up with more questions than answers. During a glucose tolerance test in March 2016 my blood sugar rose to 150 then crashed to 40. I also had diarrhea so bad the following day that I lost 3 pounds. Nothing was followed up on. I saw a sleep specialist and was on a CPAP by the end of 2016. At some point I also realized I was lactose intolerant. Back to the gastroenterologist mid-2017 for SIBO hydrogen breath testing - all 4 tests were negative, but each of the sugars I had to drink for them (sucrose, lactose, glucose, & fructose) gave me extreme physical reactions. Glucose & lactose were horrible gas, bloating, & diarrhea, while sucrose & fructose were days of severe constipation that even the highest dose of Linzess did not take care of. Nothing was followed up on. I was referred to another gastroenterologist at Vanderbilt University the end of 2017 and saw her multiple times into mid-2018 for more colonoscopies & upper GIs which showed nothing of note. She did not follow up on the sugar issues that I was specifically referred for, but did genetically confirm 2 out of 3 markers for celiac (by the time I was blood- & biopsy-tested for it I had already been gluten free on my own for several months, so each were negative or inconclusive). My endocrinologist finally circled back to the sugar and became convinced that I had reactive hypoglycemia and tried to get me a continuous glucose monitoring system to confirm, but since I was not a diabetic I could not get one even with a prescription and could not buy from the manufacturer at retail cost either. The end of 2018 I was having trouble taking a full breath, so I saw a pulmonologist & went through several tests which discovered nothing. He sent me for an echocardiogram which did find a 'trace to mild' tricuspid valve regurgitation, but I was dismissed once again when he proclaimed it wasn't bad enough to be causing my breathing problems (yet I still have them). My fatigue was so bad that by the beginning of this year I had a second sleep study done but nothing was found. The sleep doc prescribed Nuvigil, normally reserved for narcoleptics. It helped a little, but by this point I was also taking a multivitamin with caffeine plus a drink mix containing caffeine. At a routine follow-up with my endo last month I was again complaining and he said he still felt it was something to do with the sugars and told me to try the Keto diet, which would cut down on the spikes & crashes that he was convinced were happening all day based on what I was eating and therefore causing my fatigue. I've been following the diet for about 3 weeks now and discovered a new sensitivity to peanuts (bloating & weight gain) and a tendency for heartburn after high fat foods, but have been able to stop taking the Nuvigil and the drink mix. WHY? There have been 2 questions I've been asking each doctor I see throughout the years and nobody wants to take the time to research them. None of these problems run in my family, with the exception of the celiac, so why is this all happening to me? Theory 1: my dad's exposure to Agent Orange during 2 tours to Vietnam before I was born, but my younger sister is perfectly healthy. Theory 2: during one of my neck surgeries (2009 & 2013 but I can't remember which), the surgeon used a BMP sponge (bone morphogenetic protein) to facilitate bone growth for the fusion. It was off-book since it was only FDA-approved for certain lumbar fusions, and this was cervical. There's very little research I can access regarding the BMP but from what I can find, it does affect the thyroid, esophagus, & stomach. Is this what I'm dealing with? After-effects of an off-book use of BMP?