Stange constellation of symptoms - anyone had a similar experience and found a diagnosis or effective treatment?

Hello,

I've been struggling for years now with massive changes in my body, and I'm really worried for my health, as I know something isn't right. Anyone had a similar experience? I've provided a (very exhaustive!) summary below.

Timeline
• Until 2021 (now 36 years old): Full health, no health issues, no medications 😊
• 2021: Sudden onset of severe puffiness/fluid retention (including “moon face”), this was very acute and alarming – it felt like my capillaries were leaking fluid, and was especially prominent in my torso, and my left chest and underarm (where I distinctly remember the feeling like fluid was leaking from, alongside a strong ‘pulsing’ sensation on waking up one morning), and my face. My GP at the time did some very basic testing (including thyroid tests) which came back normal – she was not concerned (I have since changed GPs). General puffiness and other symptoms have come and gone since then. At the time I was drinking alcohol very heavily (and had been for 15-20 years). It also seemed to worsen after the COVID vaccine.
• 2023–2024: Ongoing intermittent symptoms with skin changes (yellow tint, doughy tissue). Periods of feeling in full health.
• 2024–2025: Symptoms returned, with just 1 -2 months of feeling healthy. Multiple medical investigations and specialist input; subclinical hypothyroidism and Hashimoto’s caught early.
• 2025 (current): I’m still experiencing ongoing puffiness and connective tissue–like changes, along with abnormal skin changes, despite having normal results in many areas of testing. What I struggle with most is the puffiness, which feels mostly tissue-related rather than fluid. It’s as though there is a thick, loose layer of tissue under my skin — all over my body, but especially in my torso and face. This has made me look and feel very different; I appear less defined, less feminine, and more puffy overall. My skin colour has changed too, with a yellow/orange tone and areas of hypopigmentation. At the same time, my metabolism feels sluggish and “sticky,” even though my thyroid results have been normal or sometimes even hyperthyroid for the past 6–8 months. While I’m not dealing with fatigue or weight gain, the changes in my tissue and skin leave me feeling heavy and extremely uncomfortable in my body. I’ve become so self-conscious about these changes that I can barely leave the house, and it’s having a huge impact on my wellbeing, confidence and day-to-day life. We’ve done extensive testing, and now are at point where we’re a bit stuck for any other answers.
o Note: Because my symptoms began when testing returned normal thyroid results in 2021 (i.e. the symptoms predate my hypothyroidism), and have remained even when thyroid levels have normalized through medication, my endocrinologist doesn’t think that the symptoms I’m struggling with the most are due my thyroid/Hashimoto’s thyroiditis, and I agree. I’m unable to participate in life with these symptoms, and really need some more answers! I feel that we may have missed something big, but am at a loss.
Symptoms (current and recurring)
• Very different appearance, especially changes in face – loose and doughy tissue, red/orange skin colour, swollen shape, protruding veings
• General puffiness, spongy skin, and fluid retention (including “moon face” at times)
• Generalised systemic swelling
• Yellow/orange/red skin tone (not jaundice)
• Think/ Doughy / spongy tissue texture just beneath the skin surface
• Skin - hypopigmentation patches on stomach
• Skin - intermittent itchy rash underarms
• Slow/stuck metabolism (despite hyperthyroid at times labs due to over-med)
• Sleep- stimulant-like, vivid dreams and difficult to get into a deep sleep
• No appetite at all, but no fatigue, I feel I could go days without needing to eat (but ensure I do eat for health), I maintain a healthy weight
• Prominent and lumpy veins
Diagnoses
• Hypothyroidism (diagnosed, treatment started November 2024)
• Hashimoto’s thyroiditis (autoimmune thyroid disease) (Diagnosed December 2024)
• Moderate – severe thiamine deficiency (diagnosed April 2025 - history of severe alcohol use, now normalized with supplementation)
• Helicobacter Pylori (now treated)
Current Medications & Supplements
• Levothyroxine (thyroid hormone replacement)
• Liothyronine (combination t3/t4)
• Metformin (potential PCOS)
• Melatonin (occasional use)
• Iron (supplemental, has previous been lower end of normal)
• B-complex vitamins
• Thiamine
• L-theanine
• Probiotics
• Vitamin D
• Magnesium
• Omega 3
Tests & Results
Normal / unremarkable results:
• Liver function tests
• Kidney function tests
• Pelvic and abdominal/Kidney and Liver ultrasound
• Coeliac disease screen
• Coagulation profile
• Hepatitis B & C
• HIV
• Syphilis
• Tryptase
• Cortisol (serum)
• IGF-1
• Renin activity
• Adrenocorticotropic hormone (ACTH)
• Standard reproductive hormones
• Iron studies
• Vitamin A
• Lead
• Insulin (mildly high)
• Fasting glucose
• Zinc
• Vitamin D
• Complement C1, C2, C4 (C4 slightly low, not clinically significant)
• Scleroderma
• ENA (Extractable Nuclear Antigen panel)
• DFS70 antibodies
• Rheumatoid arthritis factor
• Lupus (SLE screen, ds-DNA)
• Anti-CCP antibodies
• HLA-B27
• Angioedema
• Vascular ultrasound
• Breast mammogram, ultrasound and MRIs
• GI testing
• Full body PET CT scan –
o Normal apart from:
 Thorax - Minimal small oblique fissural thickening on both sides (more on the left) is unchanged from prior scan. Significance is uncertain. This is usually inflammatory.
 Stomach distended and filled with fluid, but no abnormal uptake or obvious gastric outlet lesion
 Small amount of free fluid seen in the right flank.
 A small enhancing right pararectal nodular area is avid. Likely on superior margin of right ovary but appears medial and superior to ovarian follicles. Small FDG avid right adnexal nodule is likely physiological (related to superior margin of the right ovary)
Abnormal findings:
• Positive ANA test (1:160 homogenous pattern) (not clinically concerning by rheumatologist)
• Slightly low Complement C4 (not clinically concerning by rheumatologist)
• Hypothyroid (on medication, has now been normalised)
• Raised, thyroid autoantibodies (recently at 428, August 2025 – reference range = <12)
Lifestyle:
• No alcohol or smoking since 2022
• Sleeping 8-10 hours each night
• Low stress (resigned from work to focus on health)
• Healthy eating – general low sugar, protein-rich breakfast
• Strict gluten and dairy free for the last 6 months
• Regular exercise (I especially love running, yoga)
• Avoiding toxins, using natural skin and cleaning products etc.
Treatments:
• Lymphatic drainage massages
• Acupuncture
• Currently seeing a functional medical Dr alongside my GP, endocrinologist and rheumatologist
• EMDR/trauma-informed therapy
• Red light therapy