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
- Left Thyroid: Negative for Malignant Cells; Benign Follicular Nodule most consistent with hyperplastic nodule with cystic degenerative changes
- 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