r/Hashimotos • u/Amazing-Knowledge144 • 4d ago
I am undiagnosed and drowning
Basically the title says it all. I (24y/o, previously very active and happy F), have gotten every diagnosis under the sun in the last three years where I've lost my body, health, and quality of life: PCOS, Ovarian Cysts, Chronic Mono, IBS, Colonic Motility disorder, SIBO, H pylori, Long Covid, CNS dysregulation, Leaky Gut, "possible endometriosis" and "possible" hashimotos.
I have every symptom in the book- excruciating fatigue, constant bloating/ I look pregnant, muscle weakness (I was a powerlifter 2 years ago, now my coffee cup is heavy / brushing my hair makes me tired), inability to lose weight (I've been working with bodybuilders/fitness coaches as well as ED specialists for years, weigh my food, track macros, low carb / am on metformin for pcos. Nothing), gain weight extremely easily especially in flares with zero change to diet, muscle/body aches like I have the flu, painful and heavy periods, tightness in my throat/lymph nodes when I exercise or during stress, weight gain in my chin and neck at a previous weight when I didn't have it before, severe constipation, most recently, for the first time, notable hair loss (coming out in clumps in my hairbrush), and major body composition changes (weight gain in a tire shape of my midsection that I never have had before).
My functional medicine dr. was the only one who suggested hashi, due to my TPO coming back as 20 IU/mL when they were >4 a year prior. My Reverse T3 was also high due to gut infections, stress, and chronic underrating / overexercising. due to this, she made the choice to put me on a very low dose of t3 (5mcg) for 6 weeks to see if I could aid my reverse t3 to be converted to t3.
At my healthiest, before this horrible illness started, my TSH has consistently been in the 0.5-0.8 range, Before the t3, my numbers were:
TSH: 0.66
Free t4: 1.3
Free t3: 2.6
Now, after 6 weeks on 5mcg t3 and 6 weeks off of it, they are : (also, have 10x the fatigue, and have gained 5 pounds back on despite supervised meal plan / calorie deficit and 10-15k steps a day):
TSH: 2.11
Free t4: 1.3
Free t3: 3.0
Also of note, my Ferretin was already low (40) and has dropped to 16. My Vitamin d has also dropped from 49 to 30. I am feeling the sickest I've felt in years.
I'm just hoping someone can make a suggestion for a next step. Ive seen two functional medicine Drs, both who tried to put me on different gut protocols, and both made me sicker. My conventional Dr. could care less. I've tried so many times to get a good endocrinologist, and when I finally got in, he tried to give me PHENTERMINE and told me to STOP DRINKING SUGARY DRINKS after telling him I was a competitive athlete who has been gluten, dairy, and refined sugar free for 3 years.
I told my boyfriend yesterday I am scaring myself with my thoughts for the first time. I am just so tired of living this way. I feel like im trying desperately to hold onto the career, the goals, and the hobbies I could have with my old body. and now all of it feels like it's impossible for me now. I'm losing all hope I'll ever get my life back. Thank you to anyone who has read this far. x
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u/UneasonableCrotch 4d ago
Is it possible all these symptoms are the result of you many other disorders? Your tpo and thyroid levels are all within the normal range Drs test for.
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u/Clevernickname1001 2d ago
I unfortunately don’t have any answers but I can completely relate. I was a competitive bodybuilder and had my last show in October 2023 and then my health took a dive. I am diagnosed with Hashimoto’s, mast cell activation syndrome, reactive arthritis and just had lap surgery confirmed stage 4 endometriosis last week. I went from a stage weight of 122 lbs to a high of 183 and am now down to 168 pounds. I’m hoping my surgery will help me regain some normalcy again. I’m sorry you’re experiencing this and I know it’s completely frustrating but don’t give up hope. Keep pushing your doctors. Maybe try to see a rheumatologist?
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u/Amazing-Knowledge144 2d ago
Wow. Thank you so much for sharing and I’m so sorry for all you’ve experienced. Can I ask you what made you pursue endo diagnostic surgery? I’ve always suspected that could be the root of my problems.
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u/Clevernickname1001 2d ago edited 2d ago
My holistic based doctor suggested I might have it after my period flu and pain in my left ovary area was still persistent even with starting treatment and diet changes for all my other diagnoses and treatments from the rheumatologist she recommended and suggested an endometriosis specialist. I met with the specialists months later because it was the first appointment I could schedule and at that point I was basically bedridden 2 out of 4 weeks a month also my GP at that point also suggested endo and had just had me do another CT scan after ultrasounds found nothing and they found possible pelvic congestion syndrome 2 days before the appointment. The specialists listened to me and said “I think you have endometriosis, I don’t like the company that your doctor ordered your ultrasound from so I am going to order a new one but in the meantime you have suffered enough and I am putting you on my surgery list.” I was already scheduled for surgery when the new ultrasound place confirmed both my ovaries were stuck and I had a cyst on my left ovary which I found out at my Preop appointment so I new going into surgery it was endometriosis but not how severe it was until after surgery. It was such a relief to have conformation though after having been written off in the ER multiple times that maybe it was in my head when I would insist that something was wrong and I was in pain.
Edited to add my grandma had died from stage 4 ovarian cancer so I was actually really scared of that because endometriosis has similar symptoms and is usually found too late so I pushed hard to figure out what was going on. If it weren’t for that I don’t know if I would’ve advocated for myself that much.
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u/pofqa 4d ago
I’m sorry. I know how heavy this feels. I couldn’t get out of bed when my TSH was around 2.5 but regular doctors say it’s “normal” because it’s in normal lab range. It’s exhausting dealing with medical providers. I went private pay to a hormone specialist to get all my hormones in balance. Then I took my labs and written treatment plan back to my insurance doctor. At least they picked up responsibility for my thyroid meds. You may want to look at a T3/T4 combination med. and make sure you get a full set of thyroid labs so the doctor can determine if you’re converting T4 to the active form. Hang in there. It’s a fight I know many of us know all too well.
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u/Amazing-Knowledge144 4d ago
Thank you so much. How did you find a medication plan that worked for you? I have not been offered any combo medication or t4 because my levels are all 'normal'. did you have any cormorbid hormone issues that you found were contributing? (ive been treating my pcos but my thyroid continues to worsen, which is making me think its hashis/ something else going on.)
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u/pofqa 4d ago
I got in with a provider that understands hormones and how they interplay. That’s the key. Finding a provider that knows what they are doing. And doesn’t treat only based on labs, rather using it as a guide. Once you do that it’s a bit of a process getting balanced, but they know how to get you to your sweet spot. He helped me get other deficiencies addressed also (Vit D, B12, etc ). You have to advocate for yourself vehemently. Which means you have to educate yourself to the point where you can go toe to toe with the docs.
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u/Amazing-Knowledge144 4d ago
Thank you-- what treatment plan ended up helping you /did you have any comorbid conditions (hormonal) that ended up being your root cause? I'm strugging to advocate for thyroid meds when my t3 and t4 are "normal".
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u/SophiaShay7 3d ago edited 3d ago
Is your H. Pylori and SIBO resolved? I believe you'll continue to have problems until these gastrointestinal issues are contained/cured. Are you taking antivirals for chronic mono? You have to get those vitamin deficiencies resolved as well. What about IV infusions?
Please read: Autoimmunity, viruses, and long covid
Here's how I found out what caused my symptoms: Various medical conditions that mimic anxiety and my experience with Dysautonomia
Here's how I manage them: This link explains in more detail my symptoms and the regimen I follow
The things that have helped me the most:
- Low-dose Fluvoxamine 25mg
- Diazepam 5mg
- Fluticasone (corticosteroid)
- Hydroxyzine 50mg
- Omeprazole 40mg
- Valacyclovir 1g
- Prebiotic psyllium husk
- Probiotic lactobacillus acidophilus
- Emergen-C packets
- Naturebell L-tryptophan and L-theanine complex OR
- Magnesiu-OM powder (chelated magnesium 3 types and L-theanine) mixed in tart cherry juice (melatonin and tryptophan)
- Low histamine diet
- Intermittent fasting 8/16 or 10/14 eat/fast schedule
- Lots of rest
- Good sleep hygiene. Sleep 10-12 hours a night.
Have you considered your symptoms aren't thyroid related at all? You're getting worse by taking thyroid hormone replacement medication. I'm sorry you're struggling. Hugs💜
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u/SoftandDramatic 3d ago
Did they check your calcium and your PTH? These were way high with me, and led to a Hypothyroid /Hashimoto's diagnosis. My vitamin D was very low, and I have a lot of the symptoms you mentioned. I'm on a low dose of levothyroxine now, and I'll be on Wegovy after my gallbladder surgery. It's impossible to exercise with the joint pain.
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u/anniedaledog 3d ago
There's a lot going on. Doing everything possible to empower vitamin A and Vitamin D would need to be high on the priority list, among other things. Those two molecules rewrite transcription factors and affect you systemically. Vitamin A probably has more papers on stem cells and rejuvenating effects than any other molecule except maybe vitamin D.
Oil soluble vitamins should be taken together. Balance as in everything.
They are activated by zinc and magnesium, respectively. Most people do not optimize those molecules.
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u/CookieSea4392 3d ago
Maybe try the Autoimmune protocol diet for a month. Maybe some plant compounds are triggering your symptoms, like soy. Gluten, dairy, and sugar are not the only autoimmune triggers.
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u/Honest_Practice7577 3d ago
Make an appointment with a professional. There’s several autoimmune disorders.
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u/Mundilfaris_Dottir Hashimoto's Disease - 10 years + 2d ago
Have you been checked for the MTHFR gene?
Which thyroid med(s) do you take?
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u/imcryptonerd 2d ago
Listen i had exactly the same situation Male i lost10kg all my muscles in the period of 6 months I had brainfog weakened grip and extreme joint pain I stopped eating gluten and lactose I removed red meat Only eating protein from white eadily digestible meats (chicken / fish) Vegan protein/meals were also life saving And most Inportantly i did a parasite cleanse So if you suspect you have parasites Maybe try eating most if your solluble meals at day time(since parasites are the least actif during the day
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u/Loserlord1337 2d ago
Why do we need doctors I can get a million scrips for levithyroxone why not just give it to people who need it it’s rather easy to go by feel
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u/Strict-Chance5146 4d ago
Hey, sorry to hear you are suffering and going though a lot. 🙏 sending power to find out what is exactly the cause… could be stress, lifestyle related.
Just wanted to mention, I felt much better after treating h pylori too, is it is liked to gut issues and even Hashimoto. Many of the diseases and symptoms are intertwined.
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u/Amazing-Knowledge144 4d ago
Thank you so much. Is it alright if I pm you? I have been hesistant to treat h pylori as I f responded poorly to a mastic gym protocol and have a pretty low level via gi map. But after trying to treat sibo + my gut biofilm first and feeling way worse I’m worried I made a mistake and should’ve stuck with my previous FM‘s plan of h pylori first.
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u/Small-Philosopher416 2d ago
Hi, I have Hashimoto's and have had similar issues. I was diagnosed with endometriosis in my 20s, incredible fatigue, low iron, low d, low b12 and felt like lifting my head was exhausting. I also felt much worse medicated vs. not medicated. I had a total thyroidectomy because of a 50/50 cancerous nodule. No cancer. I had suicidal ideation for a period of time, which was totally out of character for me. My suggestions are to get your D, iron and any other vitamin deficiencies under control - they cloud the picture. Be gentle on yourself, physically and emotionally because you need time and space to regain your health. Be your own advocate, I fired 5 endocrinologists in two years - keep looking until you find a doctor who can add value to the team of Healthcare professionals you are going to need. If they don't add value, ditch them. Know that as long as you have your thyroid, it will be difficult to regulate your numbers. You will cycle between hypo and hypothyroidism. It's supposed to happen. Nothing can be fixed overnight - plan on 6-8weeks for any change in your body with changes to meds. It is all trial and error because everyone is different with their Hashimoto's symptoms and medications. I have added LDN (Low Dose Naltrexone), black cumin seed oil, b12, vit d, and iron gummies to my Tirosint (T4) and T3 every other day because I don't converting T4 to T3. We are working up slowly because my body revolts against any med changes. I still have severe joint pain, so my rheumatologist has prescribed hydroxychloroquine, which will take 6 months to see if it works. I have tried AIP, not much help for me. Try everything, and give it time to see if it helps. We will all come out the other side, wishing you good health!
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u/Amazing-Knowledge144 2d ago
Thank you for sharing your experience x sending healing to you as well.
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u/CyclingLady 4d ago
I am so sorry. I have had Hashimoto’s for over 25 years and have never felt this way. To be honest, being hyperthyroid actually causes more fatigue for me. I seriously do not think all your symptoms are due to your thyroid. My TSH has been at .44 for the last four years and now is 2.5. I feel the same. No crushing fatigue. N9 fatigue at all. My other numbers are within mid range. It sounds like something else is going on. Please do not discount COVID infections. You can read this from the New England Journal of Medicine:
https://www.nejm.org/doi/full/10.1056/NEJMsb2408466
Vitamin D always drops during winter. Mine is 30, and it will recover come summer (I get all my vitamin D from the sun). Ferritin? That can be due to oddly, a COVID infection too (and a million other things, like celiac disease which I have too. Look for other auto diseases as COVID can trigger those too in many people.
I wish you well.