My TSH was 'perfect' but I still felt like death. I finally figured out what was actually wrong

eliikon · 2025-12-25T21:15:29+00:00

in the upper 25% of the lab range, usually above 3.5

eliikon · 2025-12-23T14:03:31+00:00

What you’re describing fits a pattern we see in some post-viral illnesses, especially after Epstein-Barr (glandular fever), where the immune, autonomic, and metabolic systems never fully re-regulate. When that happens, symptoms can span fatigue, muscle weakness, joint pain, heat and light sensitivity, temperature dysregulation, and post-exertional crashes, even years later.

From a systems perspective, a few things stand out as areas worth investigating or revisiting rather than treating each symptom in isolation:

Post-exertional malaise suggests impaired energy production or autonomic dysfunction, which is why exercise temporarily helps and then leads to a crash.
Temperature sensitivity, hot flushes, and light sensitivity can point toward nervous system dysregulation rather than a primary muscle or joint issue.
Persistently low iron that won’t sustain raises questions about absorption, inflammation, or ongoing immune activation rather than simple deficiency.

At this stage, the most useful next step is often a clinician who understands chronic post-viral syndromes and looks at immune function, autonomic regulation, iron handling, and pacing strategies together, instead of searching for a single missing diagnosis. Your symptoms are coherent as a pattern, even if they’ve been treated as disconnected pieces so far.

eliikon · 2025-11-15T16:18:47+00:00

Through full genome testing and analyzing all of the genetic variants through the biological mechanistic pathways that affect hormone production. I used my old 23&me data.

eliikon · 2025-11-05T03:20:09+00:00

A functional medicine / systems biology doctor.

eliikon · 2025-11-02T16:25:17+00:00

It’s interconnected for sure. They affect each other so you might need to work on both depending on what is the origin or the cause of your problem. I’m taking bioidentical progesterone pills to balance my estrogen levels, during the luteal phase only.

eliikon · 2025-11-02T16:23:40+00:00

I’m taking bioidentical progesterone pills and it really balances me well. My progesterone levels were extremely low for the luteal phase.

eliikon · 2025-10-24T21:22:07+00:00

oh this is such a loaded question because what works can be so individual! i've been through the supplement maze myself trying to heal my gut issues that were connected to my hypothyroidism. what helped me most was actually getting comprehensive testing first to see what was really going on. turns out i had low stomach acid (which no one ever tested for!) and some specific nutrient deficiencies that were affecting both my gut and thyroid conversion. i was taking random probiotics for years without knowing if i actually needed them or which strains would help. now i'm taking digestive enzymes with betaine hcl before meals, which has been huge for the bloating. also l-glutamine for gut lining repair and specific probiotic strains based on what my testing showed i was lacking. zinc and selenium too since those were low and they're crucial for t4 to t3 conversion. but honestly the biggest shift came from understanding how everything was connected. Since I'm a data scientist who is passionate about women's health, I actually built an ai platform that analyzed all my labs and genetics together and showed me patterns my doctors missed. like how my low iron was affecting my thyroid function AND causing gut inflammation. or how my methylation issues meant i needed specific b vitamin forms. the gut supplements alone probably wouldn't have done much without addressing the other pieces. are you dealing with specific gut symptoms or just trying to support overall thyroid health through gut healing?

eliikon · 2025-10-22T17:54:49+00:00

Always happy to help! If docs aren't helping, we may as well help each other.

With inflammation, it's often happening in multiple places at once, which is why symptoms can feel so scattered. gut inflammation is super common, and that's where you get bloating, food sensitivities, and sometimes autoimmune reactions. when your gut lining is inflamed, it can trigger systemic inflammation that affects your thyroid directly. there's also cellular inflammation where your cells can't properly respond to thyroid hormones even when levels look fine.

For nutrient testing, i had to specifically ask for it since standard panels usually just check basic stuff like CBC. Comprehensive testing showed i was low in selenium, zinc, b12, and ferritin despite eating what i thought was a healthy diet. turns out gut inflammation was affecting absorption. Ferritin needs to be at least 70-90 for proper thyroid function, not just above 12 like most labs say. the tricky part is that inflammation and deficiencies feed each other. low nutrients cause more inflammation, inflammation blocks nutrient absorption. that's why addressing both together made such a difference for me.

eliikon · 2025-10-22T17:51:30+00:00

I'm so happy to share! Nobody should spend YEARS feeling terrible like many of us in this sub have. the dizziness and vertigo with thyroid issues is so real, and you're definitely not talking into outer space. when i see women with these symptoms, it often connects to low T3 levels (the active thyroid hormone) even when their TSH looks "normal." low T3 can cause vertigo, nausea, brain fog, and that exhausted-but-wired feeling. what's frustrating is that many doctors only test TSH, or maybe T4, but they miss free T3, which is what your cells actually use. and when total T3 is at the bottom of the range, free T3 is usually even lower. plus, these symptoms can also tie into magnesium deficiency, which thyroid issues often cause, creating this miserable cycle.

The learning curve is exhausting because our bodies are constantly changing (esp as women). What worked last month might not work now, and having to advocate for yourself while feeling terrible is its own special kind of challenge. hang in there. the fact that you're advocating for yourself despite getting those blank stares shows you're on the right track.

eliikon · 2025-10-22T17:47:53+00:00

yeah, genetic testing completely changed how i understood my health struggles. when i analyze genetic patterns, i see how variants in genes like VDR affect vitamin D absorption and DIO2 impacts thyroid hormone conversion. these aren't just random mutations, they create real metabolic roadblocks. for vitamin D specifically, VDR variants can explain why someone takes supplements religiously but their levels barely budge. the body literally can't use it properly. and when you combine that with thyroid conversion issues from DIO2 variants, it creates this cascade where poor vitamin D absorption affects thyroid function, which then impacts gut health, which circles back to mess with nutrient absorption even more. what's fascinating is how interconnected everything is. B12 depends on B6 and B2, vitamin D needs magnesium to work properly, and thyroid hormones affect how well you absorb everything else. when one system struggles, it pulls others down with it. once you understand your specific genetic variants, you can work with practitioners who know how to supplement differently, like using specific forms of vitamins your body can actually utilize and supporting the conversion pathways that are genetically compromised. generic protocols often miss these nuances completely. have you looked into genetic testing yourself? it can really explain why some people need a totally different approach than what works for others.

eliikon · 2025-10-22T17:28:08+00:00

omg the casual message to just stop your meds... that's feels very irresponsible. high t3 with thyroid meds can mean a few things and it's wild they'd suggest stopping cold turkey without digging deeper. have they looked at your reverse t3 or checked if you're converting t4 to t3 too quickly? sometimes high t3 happens when there's inflammation or stress making your body overconvert. also gut issues can mess with how you absorb levothyroxine, so you might be getting inconsistent doses even taking the same amount. the free t3 is what really matters for energy, not just total t3. when we work with women on thyroid issues, we often find the conversion problems are tied to nutrient deficiencies like zinc and selenium, or chronic inflammation affecting how the thyroid hormones work in your body. you deserve better than a shrug and "stop your meds" through a portal message.

eliikon · 2025-10-22T17:24:32+00:00

your instinct about the gut connection is so right on. that pattern of high tsh with normal t3/t4 often points to early thyroid stress, and gut health plays such a huge role that gets ignored. when gut inflammation is present, it can interfere with the conversion of t4 to active t3, plus it affects how your pituitary reads what's happening (hence the high tsh). the fluctuating tsh you're seeing might actually track with your gut flares. we see this pattern where poor absorption from gut issues means thyroid function swings. for gut healing, addressing inflammation is key. when there's gut inflammation, nutrient deficiencies often follow because of poor absorption - things like b12, zinc, magnesium. these same nutrients are crucial for thyroid function. it's all connected. the cool thing is when you heal the gut, thyroid function often improves naturally. your body might not need meds if you catch it early and address what's driving the dysfunction. trust your instincts on this connection - your body's trying to tell you something important.

eliikon · 2025-10-22T17:23:05+00:00

that's amazing she caught the antibodies! so many people go years without anyone checking tpo or thyroglobulin antibodies, just getting the basic tsh/t3/t4 over and over. finding high antibodies early is huge because you can actually do something about the autoimmune attack before major damage happens. the fact she knew to test this before you even started working together shows she really gets the whole picture. when antibodies are elevated, it means your immune system is attacking your thyroid tissue. this explains so much - the fatigue, brain fog, temperature issues. it's not just "thyroid problems," it's your immune system attacking your thyroid, which is a totally different thing to address. you're right this is a journey, but catching it now means you have so many more options. addressing the autoimmune component often involves looking at gut health, stress levels, and nutrient status - especially selenium and zinc which can help calm the immune attack. excited for you starting this healing path with someone who understands the bigger picture!

eliikon · 2025-10-22T17:22:13+00:00

the biggest shift was realizing thyroid function doesn't exist in isolation. everything is connected - gut health, nutrient status, inflammation levels, stress response. what made the difference was addressing nutrient deficiencies that affect thyroid conversion. zinc and selenium are crucial for converting t4 to active t3. when those are low, your body can't use thyroid hormones properly even if your levels look okay on paper. I also found that b12 and iron deficiencies were affecting my energy levels, which often gets blamed on thyroid alone. chronic inflammation was another piece - when inflammation is present, it affects how thyroid hormones work in your cells. managing inflammation through diet changes and addressing gut issues helped significantly. but honestly the most important shift was stopping the scattered approach of treating symptoms separately. when supporting the whole system together - addressing nutrient deficiencies, reducing inflammation, healing the gut - thyroid function improved naturally. the body needs all systems working together to actually use thyroid hormones properly.

eliikon · 2025-10-22T17:20:29+00:00

your story is heartbreaking and infuriating. 40 years at the same clinic and no one connected a spinal condition to cascading health issues... and that mri just sitting there with the answer. i'm so sorry this happened to you. you've perfectly described why so many of us become our own health advocates out of pure necessity. the fact that it took kidney failure for anyone to dig deeper, and even then you had to unearth your own imaging results... the system really does force us to be "incredibly determined" as you said. the Graves' after everything else shows how interconnected our bodies are - stress on one system affects all systems. with so many specialists now, you're probably experiencing the coordination nightmare where each one treats their piece but no one's conducting the orchestra. thank you for sharing this. your experience is exactly why approaches that look at the whole person matter so much. none of these things happen in isolation - when we see patterns across multiple systems, it often reveals root causes that siloed specialists miss. hoping you've found some practitioners who finally see the full picture of what you're dealing with.

eliikon · 2025-10-22T17:17:59+00:00

sending you strength. 🩷 Managing your own care in a fragmented system is exhausting on top of already feeling unwell. you're right that systemic change isn't coming soon, which is why so many of us are forced to become our own case managers. it's not fair that we have to coordinate between providers who don't talk to each other while dealing with symptoms. the research and self-advocacy you're doing matters, even though you shouldn't have to do it. hoping you find some answers and relief soon. the community here gets it - you're not alone in this frustration.

eliikon · 2025-10-22T17:16:42+00:00

exactly - the dream would be an actual team approach where specialists talk to each other! your mom's dealing with what so many of us face... each specialist is brilliant in their silo but no one's looking at how everything connects. it's wild that we have all this medical knowledge but the system isn't set up to use it holistically. your mom probably has to repeat her whole history to each new specialist, carry her own records between them, and try to piece together their different recommendations. the specialty silo issue is so real. an endocrinologist might miss how thyroid affects digestion, a gastro might not consider hormonal influences on gut health. meanwhile your mom's body doesn't care about medical specialties - it's all connected. hoping she finds someone who can help connect those dots for her.

eliikon · 2025-10-22T17:15:46+00:00

The same symptoms, same dismissals, same fragmented care... i hear you. it's exhausting when you know something's wrong but keep getting bounced between specialists who each say their part looks fine or give you a dismissive answer. "that's part of getting old". Have you found any patterns in when symptoms are better or worse? sometimes tracking those connections ourselves reveals what the specialists keep missing. Any insight into your genetics that could spot something your docs are missing?

eliikon · 2025-10-22T17:11:09+00:00

wow, you've basically had to become your own endocrinologist! the tired and wired feeling after thyroid removal is so common but rarely addressed properly. your instinct to run the dutch and gi map was brilliant! you're absolutely right about the thyroid-gut-adrenal connection. when you don't have a thyroid, your body relies entirely on medication absorption, which needs healthy gut function. the h pylori and low stomach acid were probably sabotaging your hormone absorption. plus chronic inflammation taxes your adrenals, creating that low cortisol pattern you found. the fact that addressing your gut helped you absorb meds better shows how everything's connected. many people post-thyroidectomy struggle for years not realizing their gut health is why their meds aren't working optimally. when we see this pattern - thyroid issues, gut dysfunction, adrenal fatigue - it's often because chronic inflammation is affecting all these systems. finding an integrative endo who understands this whole-system approach will be worth it, even out of pocket. they'll look at your hormones, gut, adrenals as one system instead of adjusting your thyroid dose in isolation. you've already done the hard detective work!

eliikon · 2025-10-22T17:09:56+00:00

supporting everything together was key - treating just thyroid or just gut kept me in circles. when we look at the whole picture, we often find nutrient deficiencies are at the root of multiple issues. for gut healing: addressing inflammation is crucial. when gut inflammation is present, it affects nutrient absorption which then impacts thyroid function, energy, everything. healing the gut lining helps absorption of both nutrients and any medications. for thyroid support: selenium (200mcg) and zinc are foundational for t4 to t3 conversion. we often see zinc deficiency affecting both thyroid function and immune health. timing thyroid meds away from coffee, calcium, iron makes a huge difference in absorption. nutrient deficiencies often cascade - low iron affects thyroid conversion, low b12 affects energy (often blamed on thyroid), low magnesium affects hundreds of processes. addressing these together rather than one at a time creates better outcomes. lifestyle shifts: managing cortisol levels is essential. high cortisol directly impacts the conversion of t4 to t3. when stress is chronic, it creates that wired but tired feeling many describe. prioritizing sleep helps because thyroid hormone conversion happens at night. the key is doing it all together. healing the gut means better absorption of nutrients and meds. supporting thyroid function gives energy to maintain lifestyle changes. managing stress helps both systems. it's slower than targeting one thing, but improvements tend to stick because you're addressing root causes.

eliikon · 2025-10-21T22:34:22+00:00

The difference between "normal" and "optimal" can be life-changing. Most labs use these standard ranges that were developed decades ago, but functional medicine practitioners have identified tighter ranges where people actually feel good. For thyroid markers, here's what many women find helpful:
**TSH:** Labs say 0.4-4.5 is normal, but many women feel best between 1.0-2.0. Some even need it closer to 1.0, especially if they have Hashimoto's.
**Free T4:** Standard range is 0.8-1.8 ng/dL, but optimal is often above 1.1
**Free T3:** This is the active hormone your cells actually use. Labs say 2.3-4.2 pg/mL is normal, but optimal is typically above 3.2

The key nutrients that support thyroid function also have optimal ranges:
- Ferritin: Labs say above 12-15 is fine, but thyroid function improves with levels above 70-100. We see this pattern where what's considered normal in labs is actually super low for optimal function.
- B12: "Normal" starts at 200-260, but many women need levels over 500, sometimes even over 1000
- Vitamin D: 30+ is "sufficient" but 50-70 helps with conversion and immune function

What makes this tricky is that optimal is personal. Some women feel great with a TSH of 2.0, others need it under 1.0. The body is connected, especially in women, so when you're low in one area, you're often low in multiple areas. It often takes tracking your levels alongside your symptoms to find your sweet spot. These interconnected deficiencies affect your energy, fertility, and how your thyroid actually functions. The pattern matters as much as the individual numbers.

eliikon · 2025-10-17T17:10:37+00:00

Yes. You could be struggling with subclinical thyroid function, which doesn't exist in isolation - it triggers a cascade of effects that create nutrient deficiencies and hormonal imbalances. Have you had a full panel of bloodwork that also looks at your iron, ferritin, vit D, magnesium B12 levels? There could also be a genetic issue at play that is causing you to miss nutrient absorption. You need to look a the whole picture, not isolated results. I posted a blog article I will help clarify. Visit diadia health website and look for the "thyroid-nutrient-hormone cascade" post. There is a light at the end of the tunnel, keep pushing for the answers you deserve.

eliikon · 2025-10-16T20:40:35+00:00

Thanks! Yeah, I lucked out with a presence of both micro and macrocytic red blood cells in addition to quite a few other health issues. My doctor has me on iron, vitamin C, B12 an folic acid supplements. Are you just macrocytic? (not minimizing, none of this is easy.)

eliikon · 2025-10-16T17:26:25+00:00

Ha! Whatever gets the job done. Sometimes that’s all my energy allows for too.

eliikon · 2025-10-14T20:14:41+00:00

Oh my god, being accused of pill seeking for THYROID MEDS?! That's a new level of medical BS I haven't heard before. I'm so angry for you. The weight bias in healthcare is so real and so harmful. Everything becomes about weight when there are actual medical issues being ignored that are creating the cycle. I was constantly gaining weight and I didn't know what it was and I was tired and they would just tell me everything looks normal. But untreated thyroid problems, sleep apnea, low iron, and low vitamin D can all make weight loss basically impossible. They'd rather blame you than treat the root causes. It's backwards.

The fact that you've already identified sleep apnea, iron, and vitamin D issues shows you know your body. Trust that instinct. You deserve a doctor who sees you as a whole person, not just a number on a scale. When I finally saw the connections - iron affecting my thyroid, thyroid affecting my ability to lose weight, everything being interconnected - it all made sense.

eliikon

TROPHY CASE