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.
Next Steps in Medical Plan
- Consume 4,000-6,000 calories per day to gain weight. Drink lots of high-calorie protein shakes. Keep a food log.
- Paperwork from hospital visit is being sent to my primary doctor, who will send it to relevant specialists with referrals.
- Schedule appointment with Gastrointestinal (GI) Specialist.
- Schedule appointment with ENT specialist.
- Start physical therapy next week.
- Waiting for Lab results: Heavy Metals Urine, Selenium, H. Pylori
List of Symptoms
- 65+ pounds unintentional weight loss
- Extreme fatigue that leaves me forced lay in bed all day when I used to be very active and still very much wish to be
- Muscle weakness that’s most intense in my legs; need to use a walker for stability
- Dizziness and vertigo worsened by movement or standing too fast
- Frequent nausea (no vomiting)
- Low blood pressure
- Shaky feeling throughout body, worse in arms and hands
- Tingling in my hands, arms and feet
- Restless legs (predominantly left side)
- 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
- Constant stabbing pain (feels like an ice pick!) in my right ear, throat and neck that radiates up around my eye and across my cheekbone.
- Thyroid nodules that aren’t caused by hormone imbalance, antibodies or cancer
- Frequent headaches
- Swollen lymph nodes in neck and jaw
- Pain in my collarbone and shoulders
- 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 and left elbow
- Pain and weakness in my knees
- Stiffness in my hips
- Muscle contractions in my left foot and abdomen
- Diarrhea for several months followed by constipation
- Severe dehydration
- Urinary urgency
- Intermittent discomfort in my intestines and around my belly button
- Lumps in center of stomach and right groin that come and go
- Don’t feel like I can take a full breath and get short of breath easily
- Things get caught in my throat I have to wash down with water and things go up through my nose
- Several months of trouble falling and staying asleep; now sleepy all the time, even after sleeping 10+ hours and taking naps
- Flu-like feeling
- Low grade fever for several months
- Dental infection that was mis-diagnosed for 16+ months
- Hair loss
- Basic labs (CBC, Differential, Metabolic Panel) – Normal
- ANA – Negative
- 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
- 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
- Shiga Toxin (e-coli), Salmonella, Shigella, Campylobacter, Giardia, Cryptosporidium Parvum – Negative
- Lyme Disease – Negative when tested in 2014; doctor says symptoms do not indicate a need to re-test
Imaging Studies Completed
- Brain and Ear Canal MRI with and without contrast – Normal
- Head CT – Normal
- 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
- Carotid Artery Ultrasound – Normal
- EKG – Normal
- Echocardiogram – Normal
- Chest X-Ray – Normal
- Thyroid Ultrasound – Multinodular Goiter (not caused by hormone imbalance, antibodies or cancer)
- Thyroid Fine Needle Aspiration Biopsy
- Left Thyroid: Negative for Malignant Cells; Benign Follicular Nodule most consistent with hyperplastic nodule with cystic degenerative changes
- Right Thyroid: Nondiagnostic/Inadequate sampling; no follicular epithelial cells present; only scant free colloid and blood
- EMG – Completed in 2014 – Normal