Unexplained Symptoms Despite Normal Lab Results – Seeking Input
Hello everyone! I’m a 26-year-old woman experiencing an increase in troubling symptoms over the past few years, particularly intensifying in the last 12 to 18 months. It’s incredibly frustrating because every lab test continues to return within normal limits, yet I feel terrible. I’ve been unable to work for the past three months and feel as though my concerns are dismissed. Many say it's psychological or even suggest I’m dramatizing my diet (currently limited to about 1600 kcal daily). For context, my family has a history of thyroid issues: both my aunt and grandmother have thyroid nodules; my aunt is asymptomatic, while my grandmother had symptoms related to hypothyroidism and had her thyroid removed. Additionally, my brother was diagnosed with type 1 diabetes following a COVID infection. I’ve contracted COVID three times myself. In the past, I experienced a significant weight fluctuation—losing 30 kg in five months after a mysterious illness that lasted three weeks, which resulted in a fever, loss of voice, throat pain, and sinusitis, compounded by the stress of a toxic relationship and finishing college. **Key Symptoms I’m Facing:** - Extreme fatigue, notable weakness, and brain fog (I sometimes forget even my phone number or address). - Bloating, swelling, sensitivity to cold, and experiencing cold hands and feet even in temperatures around 25 degrees Celsius. - Rapid weight gain from 80 kg to 112 kg within a year, despite maintaining a calorie deficit and regular exercise, which I previously didn’t need to do to stay at a healthy weight. - Hair loss, particularly around my temples, alongside thinning eyebrows, as well as reduced body hair and brittle nails. - Persistent low mood, clinical depression, and frequent crying. - Menstrual cycles ranging up to 103 days. - Orthostatic issues characterized by dizziness and vision disturbances upon standing up. - Joint and body pain, especially in knees and fingers. I’ve undergone assessments for conditions such as iron deficiency, B12 levels, and potential kidney or liver issues, but nothing definitive has surfaced. There’s a lingering suspicion that I might have hypermobile Ehlers-Danlos syndrome (hEDS) or postural orthostatic tachycardia syndrome (POTS), yet the hypermobility and discomfort have been longstanding, while these additional symptoms are relatively new. Earlier this year, I took 25 µg of levothyroxine from late January until the end of April after persuading my physician to trial it (when my TSH was 3.7). I noticed an improvement; my hair started to regrow in areas mentioned, I lost 2 kg down to 108 kg, and I experienced some increased alertness. I also began taking 30 mg of Elvanse in early April, which allowed me to tackle tasks, but I was still too weak to return to exercise, so I aimed for at least 8000 steps daily. Currently, I remain on Elvanse, yet its effectiveness has diminished since stopping levothyroxine. After four weeks without it, my weight started to climb again, and I felt my symptoms worsen significantly. **Most Recent Blood Test Results:** **Thyroid Panel:** - TSH: 3.40 mU/l (Reference: 0.35-4.94) - Free T3: 3.09 ng/l (Reference: 1.43-3.90) - Free T4: 9.1 ng/l (Reference: 7.0-14.8) - TPO Antibodies: 14 U/ml (Reference: <34) - TRAK / TSH Receptor Antibodies: 0.85 U/l (Reference: <1.22) **Complete Blood Count / Hematology:** - Hemoglobin: 13.2-13.8 g/dl - Hematocrit: 39.4-40% - MCV: 85-86 fl - MCH: 28-29 pg - RDW: 12.5% - WBC: ~6.0–6.5 - Platelets: 269–293 - Neutrophils: 3.7 G/l - Lymphocytes: 1.7 G/l **Iron Status:** - Iron: 23.9 µmol/l (Reference: 5.8-34.5) - Transferrin Saturation: 32% - Ferritin: Yet to be tested. **B12 & Folate Levels:** - Vitamin B12: 364 ng/l (Reference: 197-771) - MMA: 20 µg/l (Reference: 9-32) - Holotranscobalamin: 108 pmol/l (Reference: >50) - Folic Acid: 5.3 µg/l (Reference: >4.0) - Vitamin D: 25-OH D: 57 nmol/l (Reference: 75-125) – deemed insufficient, I plan to start taking a high dose of Vitamin D3/K3. **Other Parameters:** - CRP: 2 mg/l - Glucose (fasting): 94 mg/dl - Creatinine: 0.82 mg/dl - GFR: 99 ml/min - Liver/kidney enzymes: All within normal limits - EBV IgG levels high (425 and 168) indicating a past infection - Fasting Insulin: 3.6 mU/l - HOMA-IR: 0.85 **Other Hormones (Day 3 of Cycle):** - LH: 8.0 IU/l - FSH: 8.2 IU/l - Prolactin: 352 mIU/l (Reference: 109-557) - Estradiol: 31 pg/ml; low for luteal phase - Progesterone: 0.33 ng/ml - Testosterone: 0.7 ng/ml (Reference: <0.9) - SHBG: 59.5 nmol/l - Androstenedione: 1.75 µg/l (Reference: 0.4-3.4) - DHEAS: 2.28 mg/l (Reference: <4.3) Last May, I underwent a thyroid ultrasound showing a TIRADS 3 nodule on my left lobe, measuring 9x9x7 mm, and the total volume of my thyroid was assessed at 8.7 ml. Although a follow-up ultrasound was performed, no measurements were recorded, but the evaluation was that everything appeared normal, with estimations of each lobe's volume ranging from 2-4 ml. For reference, I stand at 183 cm (6 feet) tall and reside in Germany. I am utterly drained from being disregarded. Something does not feel right, and I desire my life back. I would greatly value any shared experiences, suggestions, or thoughts from the community as I await an appointment with an endocrinologist and seek a therapist—all while being monitored for depression and ADHD (diagnosed at 8, medication discontinued post-school, and recently resumed by my psychiatrist). I’m happy to provide additional information if needed; I’ll respond to comments as quickly as I can.
Answers (1)
7/1/2025, 12:02:38 PM
OpenHealth AI
I'm really sorry to hear about the difficulties you're experiencing with your health. Your symptoms are multifaceted and understandably frustrating, especially given the lack of clear answers from lab results. It’s important to acknowledge your concerns and your desire for a resolution. Let's break down your situation and focus on actionable steps that may help you.
Main Points:
- Symptom Complexity: You are facing a range of symptoms that could involve multiple systems (endocrine, neurological, and gastrointestinal).
- Thyroid Concerns: Given your family history and previous response to levothyroxine, thyroid issues remain a key focus.
- Next Steps: There are specific self-management strategies and considerations to discuss while you await further medical appointments.
Explanation:
Your symptoms, including fatigue, weight gain, hair loss, and mood changes, point towards a potential endocrine issue, possibly related to your thyroid but also potentially involving other areas such as hormone regulation or chronic fatigue syndromes. The presence of cold sensitivity, bloating, and other systemic issues could suggest conditions like hypothyroidism or even forms of dysautonomia like POTS, especially given your mention of dizziness upon standing.
You mentioned a prior positive response to levothyroxine; this suggests that there may be an underlying thyroid issue that requires ongoing attention, even if labs appear normal.
Actionable Steps:
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Continue Tracking Symptoms: Keep a detailed symptom diary to note any patterns or triggers, including diet, energy levels, mood changes, and physical symptoms. This data can be invaluable when discussing your case with healthcare providers.
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Reassess Thyroid Function: Ask your endocrinologist about the possibility of re-evaluating your thyroid function over a few weeks, especially considering your previous improvement with levothyroxine. Discuss the idea of monitoring TSH, Free T3, Free T4 regularly since these can fluctuate and may not always reflect the full picture. Your mention of T3 and T4 levels being within normal ranges could still warrant further investigation, particularly as this aligns with your symptoms.
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Consider Nutritional Support: Since you mentioned being on a calorie deficit, ensure you're consuming a balanced diet rich in nutrients. Take note of any foods that might exacerbate your bloating or discomfort. It may also be worth discussing supplementation of vitamin D with a healthcare provider based on your levels and your plans to improve them.
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Therapeutic Approaches for Mood: Since you are working through feelings of low mood and depression, seeking a therapist in conjunction with your psychiatrist may provide you with practical strategies to manage stress and improve emotional well-being, especially as you navigate medical uncertainties.
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Footwear and Physical Support: If you're experiencing joint pain, consider ergonomic footwear or support for your knees and back to alleviate discomfort, as well as gentle exercises designed for flexibility and strength (like yoga or swimming) that are less stressful on your joints.
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Monitoring Other Systems: Given your diverse symptoms, consider discussing testing for conditions like POTS or Ehlers-Danlos syndrome during your next appointment. Explain your symptoms and how they impact your daily life to ensure a comprehensive approach.
Conclusion:
Your experience is valid, and it is reasonable to seek thorough evaluation and management of your health concerns. Continue to advocate for yourself, and don't hesitate to ask for tests or evaluations that feel necessary. It might take time to find the right answers, but you're not alone in this. Stay hopeful, and stay connected with your support networks. Please feel free to share any further questions or updates as you progress.
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