Chrystal's Symptoms & Test Results

I want to start by thanking everyone for all of the ongoing love, support and prayers that are being said in my name. I feel the energy that you are putting out there! Thank you!

So many people are asking for a full list of symptoms that I’m experiencing. Rather than typing it all out over and over again, I decided to put it all in one place to make it easier for everyone to see in one place.

In addition to being able to point friends and family to one spot, I can also use this as a quick one-sheet medical history should I wind up in an ER unexpectedly again.

I’m hopeful that maybe someone who has gone through the same thing I’m going through will see this and share their story with me. Or perhaps someone who is secretly feeling ill will seek care and find the help they need.

A lot of women suffer in silence because we’re not always listened to by medical professionals. We’re told that it must be drugs, an eating disorder or it’s all in your head. Brian got to see it first hand at the hospital.

If you aren’t feeling well, please seek help and keep asking for help until you find someone who is willing and able. There are good doctors out there, but you have to work to find them.

We started with functional medicine, which focuses on nutrition and whole body balance. However, in my situation, that just wasn’t enough and we had to seek the help of conventional medicine as we search for answers.

If you’re not getting help because you’re afraid of modern medicine, stop. Don’t use that as an excuse to not get help.

Natural remedies, homeopathy and alternative medicine is always my first choice. However, I won’t hesitate to listen to what Western medicine has to offer when the other options aren’t working.

Being there for my family comes first and if that means making a sacrifice like having part of my thyroid removed to get back to myself, then that’s what I’ll do. But we’ll make sure drastic measures like that are necessary before taking them.

I also want to put the mental health stuff out there because I know people worry about that. I’m not depressed or suicidal in any way.

I have a life that I cherish, a family that I love and I just want answers about what’s going on with my health so we can make a plan to get back to living our amazing life. We have some pretty awesome plans for when I’m back to my healthy self!

I can easily see how someone dealing with a chronic illness could become depressed though. So I’m keeping a check on my emotions and making sure not to bottle frustrations up. Writing about what I’m going through helps too since I can’t exactly Walk It Out right now.

If there is anything you feel is missing from this page, anything that I should add or expand on, let me know and I’ll try to get it added when I’m feeling up to it.

For now, here’s a list of all of the my symptoms, test results and next steps!

This list was last updated on August 6, 2019.

List of Symptoms

65+ pounds unintentional weight loss (some gained back; currently at around 112 pounds)
Inability to gain weight even on a 2500-5000 calorie diet
Diarrhea for over a year (was 10+ times a day; down to once or twice a day); no GI explanation; responds to antibiotics
Feel dehydrated (even drinking 1 gallon of electrolyte water and herbal tea every day)
Always hungry and eating
Extreme mental and physical fatigue; in bed all day when I used to be very active and still very much wish to be
Muscle weakness throughout my body; not getting stronger with physical therapy
Muscle atrophy and wasting
Don’t feel like I can take a full breath and get short of breath easily; weak breathing muscles
Shaky feeling throughout body, worse in arms and hands
Tingling and burning sensation in my hands, arms and feet that has begun to move up my legs and arms and into my face. Toes go numb frequently also – worse on right foot.
Neck pain that worsens with exercise
Unable to hold head up for very long; bobbles when I walk if I’ve been up too long
Neck and other joints pop a lot more now
Cervicogenic headaches if I sit or stand for too long
Increased rib pain when I stand or sit for too long
Pain in my collarbone and shoulders; feels like my head is too heavy and pushing down into my body
Frequent headaches (never used to get headaches)
Pain in ribs, both front and back
Constant muscle pain in my legs and glutes; very achy similar to when you have a high fever
Intermittent pain and stiffness in my hands, forearms and elbows
Fingers lock up and won’t open
Pain, weakness and instability in my knees
Stiffness in my hips
Trouble walking normally; very small unsteady steps
Left foot gives out and right toes hurt often when walking
Involuntary muscle contractions in my feet and abdomen; toes on left foot always curl if foot isn’t flat (looks like hammertoe)
Muscle twitches and spasms in muscles throughout my body
Hair loss on head (more than half of my hair has fallen out)
Patches of hair on lower legs no longer grows and no hair on thighs; no goosebumps where hair doesn’t grow
Warped fingernails
General dizziness worsened by standing too fast
Vertigo that comes on when I turn to the right
Frequent intense nausea (no vomiting)
Low blood pressure
When I need to pee, I have to go right then (not sure if from spasms or not sensing when full)
Intermittent discomfort in my intestines and around my belly button
Lumps in center of stomach and right groin that come and go
Things get caught in my throat I have to wash down with water and things go up through my nose (Dysphagia Level 3)
Trouble falling and staying asleep
Flu-like achy muscle feeling
Swollen lymph nodes in neck and jaw
Low grade fever for over a year
Trouble concentrating / brain fog that makes it very difficult to focus on work
Occasionally forget what I came into a room for or what I was talking about mid-conversation
Get overwhelmed and anxious very easily
Difficulty finding words
Multi-nodular goiter that isn’t caused by hormone imbalance, antibodies or cancer
Dental infection that was mis-diagnosed for 16+ months plus more cavities (no teeth issues prior)

Labs Completed

Blood

Basic labs (CBC, Differential, Metabolic Panel) – mostly normal (low CO2 and high platelets on a few tests)
ANA – Negative multiple times
TSH, Free T4, Free T3 – Normal
Thyroid Peroxidase AB – Normal
Thyrotropin Receptor AB – Normal
Thyroglobulin Antibody – Normal
Blood Cultures – No Growth
IGG, IGA, IgE, EGM – Normal
IGD – Very Slightly Elevated
Lipid Panel – All numbers in healthy range
Lipase – Normal
Amylase – Normal
C-Reactive Protein – Normal
Sedimentation Rate – Normal
DHEA – Normal
Progesterone – Normal
B12 – Normal
Folate – Normal
Magnesium – Normal
Cortisol AM – Normal
A1C – Normal (4.9%)
Troponin-T – Should be <=0.02 – My level is <0.03
CK Total – Normal
Coagulation Studies (PT, INR, PTT) – Normal
D-Dimer – Normal
CA 125 – Normal
CA 19-9 – Normal
CEA – Normal
TTG IgA – Normal
eGFR Black and Non-Black – Normal
Epstein Barr Virus – Antibodies indicate past infection; not currently active
HIV – Negative
Vitamin D – Low, then within normal range after treatment
Zinc – Normal
Vasoactive Intestinal Peptide – Normal
Transthyretin – Normal
Rheumatoid Factor (RF) – Normal multiple times
Anti-CC – Normal
Anti-AChR – Normal
Full Rheumatology Panel – Normal
Lyme Disease – Negative when tested in 2014; doctor says symptoms do not indicate a need to re-test

Stool

Shiga Toxin (e-coli), Salmonella, Shigella, Campylobacter, Giardia, Cryptosporidium Parvum – Negative
Extensive Stool GI Panel
- Positive for Citrobacter Werkanii/Youngae
- Otherwise normal
Ova and Parasite – Negative
72 Hour Fecal Fat Test
- Normal fat content
- Almost double normal weight
Sodium and potassium
- Samples rejected as too viscous

Urine

Heavy Metals (arsenic, mercury, lead) – Elevated arsenic (artificial spike caused by eating fish, seaweed or something similar)
Follow ups
- Random arsenic – Normal
- 24 hour arsenic – Normal
- Second random arsenic – Normal

Imaging Studies Completed

Brain and Ear Canal MRI with and without contrast – Normal
Head CT – Normal
Abdominal and Pelvic MRI – Small cysts in liver and spleen; a few small diverticula – nothing of concern
Abdominal and Pelvic CT – Normal
Abdominal Ultrasound – Normal
Neck Soft Tissue Ultrasound – 0.9 x 1.3 x 0.6 cm prominent lymph node adjacent to the right submandibular gland without a definite fatty hilum (did not show abnormality on neck CT)
Carotid Artery Ultrasound – Normal
EKG – Normal
Echocardiogram – Normal
Chest X-Ray – Normal
Chest CT – normal except for a minor spinal deformity
Thyroid Ultrasound and CT – Multinodular Goiter (not caused by hormone imbalance, antibodies or cancer; one thyroid infection)
Colononscopy and Upper Endoscopy – Normal
Mammogram – Normal
Neck X-Ray – Minor arthritic changes not unusual for my age
Barium Swallow Study – no physical obstruction; effortful swallowing noted; Dysphagia Level 3 diagnosed

Biopsies Completed

Thyroid Fine Needle Aspiration Biopsy
- Left Thyroid: Negative for Malignant Cells; Benign Follicular Nodule most consistent with hyperplastic nodule with cystic degenerative changes
  - Second biopsy confirmed no malignancy
- Right Thyroid: Nondiagnostic/Inadequate sampling; no follicular epithelial cells present; only scant free colloid and blood
  - Second biopsy found no malignancy
Colon – Normal
Stomach – Normal
Pap Smear – Normal

Other Tests

EMG/NCV – Abnormal – waiting to see Neuromuscular Specialist to interpret
Spirometry – “Normal” except lung capacity of 63-year old

Next Steps in Medical Plan

Cervical Neck MRI
Pending appointment with Neuromuscular Specialist
Referral to dermatologist
Appointment with Infectious Disease Specialist
No endocrinology follow ups for 6 months

Chrystal’s Symptoms & Test Results