Expert Rheumatologist stumped by my autoimmune symptoms
20F ; 5'8 ; 140lbs ; white with celtic and northwestern european ancestry with some indigenous mexico ancestry.
; daily marijuana smoker ; diagnosed Hashimoto's Hypothyroiditis ; currently taking 75mcg Levothyroxine mon-thurs mornings and 88mcg Levothyroxine fri-sun mornings along with 5mcg Liothyronine Sod every morning, 30mg Vyvanse/lisdexamphetamine every morning for my ADHD, Zovia 1-35 birth control pill every night to stop menstruation, I also take Pepcid AC every night for morning acid reflux and I take a multivitamin gummy with it.
My symptoms started becoming noticeable around 5 years ago. It started slow and since then I have developed many symptoms and my sickness rapidly developed within the past year or two but especially within the past 5 months. I have always had GI symptoms and malaise/"flu-like" symptoms even in childhood/elementary school. Symptoms flare up much worse if exposed to heat, cold, stress, sun, lack of sleep, weather changes, poor diet or sudden diet changes, sugar, highly process foods, medications.
SYMPTOMS:
- Whole body pain, aching, tenderness, and stiffness including but not limited to: head, jaw, neck, upper back, shoulders, hands and fingers, wrists, spine, sides of back, lower back, hips, knees, thighs, calves, feet and toes. The least affected areas appear to be the elbows and ankles but they are still affected. Stiffness is worse in the mornings but does not loosen after 30 minutes, moreso a slow release into the afternoon. Pain and stiffness is slightly BETTER midday, I have morning stiffness and stiffness once again by the evening/night.
- Joint pain, stiffness, and weakness but ESPECIALLY in the hips, knees, and hands (wrists to fingers). Joints often feel they are grinding and often pop or crack. Severe foot pain is very common, especially after walking. Cracking and popping joints often relieves a lot of pressure and some pain.
- Loss of muscle and joint strength over time, as well as losing the ability to lift my arms above my chest as this causes much arm weakness and head dizziness and giddiness. My arms will be sore after lifting them for 10 seconds. My knees feel as if they no longer have the strength to support my weight. Lifting knees/legs to step over something causes sharp hip flexor pain and popping, and I will often use my arms to lift my legs over individually.
- Hand, wrist, finger stiffness and tightness making it hard to extend and bend. Giving a thumbs-up has become difficult as has scrolling phones. Extending my hand/fingers feels as if the skin is TIGHT. The thumb muscles (or something, idk the anatomy) are very tight inside and I am confident it is not just the skin that is tight. I feel a strained pull along my entire thumb and fleshy palm area as I do a thumbs up and my thumbs often become too stiff to use by the end of the day.
- Hypermobility in ONLY the shoulders, ankles, and spine. Can pop shoulder out of place on accident if not careful.
- Persistent fatigue (extreme ongoing tiredness), exhaustion, malaise (general feeling of being unwell of "flu-like"), and very often lethargy (sluggishness that affects my mental alterness and makes me a blob that can't think or care). Does NOT improve with rest or sleep.
- Severe brain fog and poor concrentration as well as headaches and thinking fatigue. Depression, anxiety, insomnia, and other low mood very common in response to physical symptom flares.
- Varied digestive/GI issues including constipation and hemorrhoids, diarrhea, stomach cramping and rumbling, severe nausea, dry heaving/gagging, bloating and gas, heartburn and acid reflux, stool that is often floating or containing mucus or foul smelling, and easily achieveable rapid weight shifts (+ or -) if not careful. Have gotten red rash with bumps around "areas" during intense GI upset when wiping a lot with toilet paper, and with negative STD panels (including negative HSV retest weeks later), so likely contact dermatitis (from friction) or something related.
- Vascular issues such as painful leg and hip cramping and aching while walking that improves once sitting, dizziness and giddiness upon standing or when standing for too long (a few minutes) or upon sitting up from laying, presyncope as well as rarely syncope (I'm careful nowadays) as in passing out upon standing. Many dysautonomic symptoms.
- Cardiovascular problems such as heart racing, heart pounding (fast or slow), heart palpitations (fluttering, skipping beats, noticeable in chest, or a quick momentary feeling of "losing my breath"), shortness of breath/dyspnea easily from minor physical activity like walking but also often at rest but especially if lying flat, dizziness and giddiness with pounding heart upon standing or sitting up/changing postures.
- Breathing or lung difficulty such as shortness of breath with light physical activity or at rest, needing to inhale a full breath of air (air hunger), wet AND dry cough, coughing often ends with a sharp involuntary inhale screechy snap of air.
- Electric shock-like sensations throughout body and a "buzzy" feeling throughout body as well, typically at rest and especially when laying down to rest or sleep.
- Unstable balance or unsteadiness when standing and walking, frequently running into doorways or other items and hitting items and walls with my limbs. Lots of tripping on things and knocking drinks over, general clumsiness but as if motor and coordination skills are decreasing over time.
- Hand tremors and trembling at times, but especially when trying to use hand muscle for an activity such as squeezing a bottle of sauce. This action may cause intense hand trembling to point of concern to onlookers.
- Cold hands that turn white except for the tips which stay bright red. Hands turn bright red when rewarmed. Fleshy part of palm near thumb is very often blue/purple. Feet turn white but I often have socks on which does NOT help them to stay warm. Frigid hands, feet, and often nose, ears, and lips. Color changes also respond according to STRESS as well as COLD.
- Skin becomes tender and painful to touch when left cold for too long, especially in the legs and especially in the thighs. This is the SKIN or outer flesh that becomes painful and tender, and often happens when I go outside in cold weather even with pants on.
- Dysfunctional temperature regulation, causing symptoms such as night sweats or chills/shivering in a warm environment, often while still sweating. High sensitivity to both cold and warm temperatures often causing pain or extreme exhaustion, and especially with fast temperature changes. Exiting a warm shower (hot internal body core) with wet skin (cold outer skin) causes extreme vasodilation especially redness and warmth in the face and skin from the temperature change/difference. This also caused extreme lightheadedness, dizziness/vertigo, and a (sometimes pounding) headache. May pass out*. All extreme temperatures and temperature changes cause this.*
- Hyperhidrosis but especially of the hands, feet, armpits, and face/head.
- Mild dyshidrotic eczema on palms causing many tiny white/dead skin "popped blisters" to appear on the palm at once but especially apparent after a shower.
- Thickening or callus on random body parts that do not necessarily correlate to physical friction. Example, I have a growing callus for months-years on the top of my right thumb joint and sometimes get rough dry skin on the top of my left thumb joint. Top and back of ankle joints are also starting to get hard skin but not as a callus. My skin is generally extremely soft to the point of people mentioning it, but typically also dry and dehydrated and/or clammy often at the same time. It hurts to pinch the skin on the top of my hand as if I'm stretching it how it should not. Cannot very easily pinch the skin below my knees but especially the shin skin as if it is all one more solid piece moving together. I can grab some flesh in large portions but cannot grab a pinch of skin. It is significantly less soft than the rest of my body skin but feels more like "normal skin" rather than my overly soft skin aside not being able to pinch it well.
- Calcified pimples on hands and face. Not normal pimples or pustules, milia, whiteheads, or even small cysts (all of which I have had and know what they look like). These "pimples" are typically far more painful and DEEP into the skin. When popped, they push out a chalky thick paste-like texture. Not a wet paste but a drier paste. As if someone mixed white sidewalk chalk with a bit of water. The substance does NOT appear similar whatsoever to pus, bacteria, keratin plugs, sebum, dead skin, or anything else you'd commonly find when popping pimples. First appearance was after heavily using a "little ouchie" fidget toy and appeared on the top left of my right palm 4 months ago. I have continued to get them since, always appearing on the palms/fingers or face. I do not pop them after realizing what the first couple were. They are typically small and painful and sometimes they will emerge more to the surface before sinking back in.
- Skin peeling but specifically on the bottoms of the feet and between the toes lasting months to years with no other symptoms, but also intermittent skin peeling of the pads of the fingers. I once had lost feeling in the pads of my fingers before as well but it came back. I was outside in the cold much more at that point.
- Random skin itching without or with light pink to red flat rash that disappears in minutes. Rarely, a small hive or welt appears as well.
- Dry eyes (often gritty or sandy feeling), dry mouth, vaginal dryness, dry skin, dry lips. Eyes become extremely overly puffy after crying but especially the day after crying to the point of concerned onlookers.
- Unexplained bruising and slow healing of wounds.
- Dotted telangiectasia after minor trauma to the skin such as applying pressure to a pressure point or ripping off a bandaid.
- When I was having regular menstrual periods before going on the birth control pill at 15, I had been having intense periods with heavy painful bleeding that lasted for 9 days. I was not sent to a gyno but put on the birth control pill by my pediatric PCP. My cycle on the pills includes taking active pills for 63 days (9wks) followed by 7 days (1wk) of placebo pills to have a withdrawal bleed. If I skip the placebo pills on that 10th week, I will spot immediately and won't stop until I go through the bleed. It is like clockwork and very regular. My withdrawal bleeds are not bad at all, much better than my natural periods were. Switching from disposable pads to resuable cloth/bamboo pads helped immensely with bleeding and pain. I would say my withdrawal bleeds mimicked real period pain and blood flow until switching pads, and now my pain is little with a very light flow, but I very often pass a partial decidual cast.
- Mouth sores and mouth ulcurs similar to canker sores as well as inflammed painful tastebuds. Mostly appear on tongue where teeth hit the flesh and takes 1-3 weeks to heal. Gums become inflammed during larger flares. Inside of cheeks are scarred along where teeth bite down.
- Scars are no longer fading from my skin and old 7y/o scars that had previously faded have become much more visible.
- Salivary gland pain? Not sure but especially ater a warm shower. Pain and tenderness under the jaw and near the ears.
- Often swollen and tender lymph nodes in the neck, armpit, and groin.
- Esophagael problems such as difficulty swallowing or weak swallowing, food and pills getting stuck in throat, gagging and dry heaving, chronic sore throat, bad breath especially shortly after eating, heartburn (burning in chest, throat, and back between shoulder blades), regurgitation from burp if not careful, feeling of fullness or lump and slight pain in lower throat, coughing both dry and wet but especially worse in the morning and especially if I don't take pepcid ac at night, and voice hoarseness.
- Vision issues relating to visual snow syndrome involving visual static or "snow" covering vision with open or closed eyes, illusory palinopsia or lingering low-resolution translucent afterimages from light and motion, uncomfortable sensitivity to light, and much worsening night vision.
- Possible vision changes such as more difficulty focusing vision/eyes and them often having that "early morning" feel, like when you first wake up but having this while fully awake midday.
- My nails and hair are very strong and healthy and grow much FASTER than the average normal. Specifically with the addition of taking a multivitamin gummy everynight, my nails are growing twice as fast, to the point I'm almost concerned./srs
Bloodwork Labs Tests etc.
- ANA titer and pattern unknown but currently being tested; ANA Screen (Symphony) was at a 4.2 Units compared to a normal range of <0.70 Units.
- Centromere Ab Screen was at a 1.7 U (positive) compared to a normal range of <1.0 U.
- Thyroperoxidase Antibody has fluctated from >907.00 IU/mL in Dec 2024 down to 78.1 IU/mL in Feb 2026 compared to a normal range of <9.00 IU/mL.
- Thyroglobulin Antibody normal in Sep 2024 then raised to 19.6 IU/mL in Dec 2024 then finally went back down to normal in Aug 2025 compared to a normal range of <4.0 IU/mL.
- TSH was moderately elevated above normal but has gone down considerably to nearly being low since starting on my thyroid hormone medication. I tend to feel very exhausted still if my TSH is in the midrange of normal, so my PCP keeps my TSH pretty low, borderline too low.
- T3 has been generally normal if not high at times. Same with T4.
- WBC has typically been tested as being normal if not slightly low at times, however the most recent test showed a slightly elevated WBC.
- MVP is typically slightly low if not borderline low when tested.
- Neutrophils % is sometimes normal and sometimes high and corresponds to Lymphocytes % being low. Most recently it was elevated, above normal.
- Iron/ferritin is slightly low, everytime, but not clinically significantly low.
- Coronary risk lipid panel, CMP, Insulin, glucose tests all normal.
- ALL NEGATIVE: Tissue Transglutaminase (unlikely celiac), Ribosomal P Ab, Anti-SSA, Anti-SSB, Anti SM Antibody, SCL 70 Antibody, Anti JO 1 Ab, RNP Antibody, dsDNA Antibody, Histamine in plasma, Creatinine in 24 hour urine sample, PTT-LA, dRVVT, Anticardiolipin Ab, Beta-2 Glycoprotein I Ab, Antiphosphatidylserine, normal Dilute Prothrombin Time, normal Fibrinogen activity, Hep C Virus Ab, HBsAg Screen, Anti-U1 RNP Ab, C3 and C4 Complement (RDL), Anti-Chromatin Ab, Anti-CCP Ab, Rheumatoid Factor.
- US THYROID IMPRESSION: Diffusely heterogenous and hyperemic thyroid gland consistent with thyroiditis. The thyroid gland is normal in size. Overall the thyroid gland has heterogenous echogenicity. No distict thyroid nodules are demonstrated.
- Anti-Nuclear Ab (ANA), Anti-Centromere Ab, and Anti-dsDNA Ab new test results have not been done yet or are going through secondary testing. I had already tested positive for the first two, however previously tested negative for the Anti-dsDNA Ab. This one may end up being positive now. Update will be posted in edit.
- My rheum pokes me a bunch of times to see if it hurts. There is no pain with this which makes my rheum confused.
Treatments
- 800mg ibuprofen provides no relief.
- 15mg meloxicam provides no relief.
- 200mg celebrex provided some relief for hip and knee pain, however back pain felt worse.
- Intramuscular steroid injection administered at my first rheum visit helped pain, stiffness, and energy for one day then caused severe flare up. My hips, knees, and lower back hurt significantly more now than before I got the injection about a week ago.
- Pepcid AC at night helps acid reflux in the morning significantly. I will cough a lot in the morning if I don't take it.
- Allegra morning and night seemed to possibly help symptoms but not noticeably enough to continue taking. Could have been placebo.
- 40+ treatments done of neurofeedback with my therapist over like a year.
- One session done of Cranial electrotherapy stimulation (CES), but it made me extremely exhausted and tired and brain fogged during and after so I did not continue.
I'm not sure if my rheum is genuinely stumped or if he just doesn't want to scare me. He is wanting to start me on Hydroxychloroquine (Plaquenil) next week but I'm just not sure about all of it. Doc/rheum opinions????
Posted Aug 21, 2026, 2:28 AM UTC