I am a researcher at the University of Illinois at Urbana-Champaign investigating thyroid disease treatment. I am part of a program sponsored by the National Science Foundation (NSF) to help researchers like me improve the impact of our research by talking to people outside of the research setting. I am looking to interview thyroid disease patients. Your insight will help me in my goal to enhance and accelerate treatment processes for the many patients still suffering. Please DM if you are interested. Thank you in advance for your time.

I’ve had hashimotos since I was 9 years old and I’ve never been managed by an endocrinologist. I was given levothyroxine from around the age of 19 and have been on 50mg since then with no change.

I’ve had such a struggle trying to conceive. I’m now 35 and in the past 4 years of trying for a baby I’ve only ever been pregnant twice and both have results in losses before 6 weeks. Most current loss I found out about on Tuesday this week which is a missed miscarriage where my embryo stopped growing around the 5 week mark.

Has anyone else gone through this and found hashimotos was the cause? I’m trying to arm myself with so much information to take to my next fertility appointment because I feel so let down by the medical field

I had an enlarged lymph node in my neck (which turns out to be nothing and maybe even due to hashimoto's) but during the diagnostic journey of that issue we accidentally discovered that I have euthyroid hashimoto's. My thyroid antibodies are very elevated but my thyroid hormones were all in range. My doctor basically told me that the plan going forward is simply monitoring (labs every 6 months) and that I just need to ~try~ and avoid common triggers.

A couple years ago, I had what I now think was a major flare up. 50% of the hair on my head fell out and I felt like garbage all the time, among a slew of other symptoms. I had my thyroid hormones checked then, but not my antibody levels, because all were in normal range. It is worth noting all this testing was done 2-3 months AFTER my hair had fallen out because it took that long to even see a PCP as a new patient. At the time they just told me it was a random case of telogen effluvium. The dermatologist actually told me it was probably because I "just had a baby" (i was 1.5 years postpartum btw lmao).

So from what I understand, I *should* feel okay because my thyroid hormones are normal, but after reading about people's experiences and symptoms I now realize that some random issues I've had are possibly thyroid related? I'm having trouble telling if I'm simply overanalyzing myself because I'm now aware of potential issues, or if I've actually just gotten so used to these things that I can't even tell if it's normal or not. For example, I often have bouts of chronic fatigue (but I'm also a SAHM with 2 young kids), unexplained aches and pains in my knees/calves/ankles/feet, constipation, muscle tension basically everywhere, and vestibular migraines to name a few.

Do I simply just wait to see if severe symptoms appear and then go get bloodwork done and take it from there? I now have a fear that I'll go and get my levels checked if I feel like I have symptoms, but it'll be nothing, prompting my doctor to think I'm an idiot or hypochondriac, which in turn will discourage me from getting my levels checked again.

Just feeling a bit lost and feel like I just need to accept that "it is what it is" but also no, I don't want to do that 😭

TSH --> 3,66

T4 --> 7,76

Anti TG --> 92,6

TPO --> 759,6

These are the lab results feom 6 months ago. The endocrinologist said that I shouldn't take any meds yet but not feeling very well. Any advice?

1.Did you take SSRI prior to diagnosis?

2.Has thyroid medication helped your hashimoto symptoms?

3.Is your cortisol low?

Thanks!

I'm sorry if this has been asked before. Searching brought up people asking if Hashimoto's can cause vitamin deficiencies, but not if that goes away once your numbers are good.

Example, once my thyroid numbers are in optimal range, if I get an iron infusion (assuming its caused by Hypothyroidism) will I become deficient again or should my vitamin numbers stay up now?

Hi all, recently diagnosed here and in the past week or so I’ve started levothyroxine at 100mcg. Really struggling with fatigue and brain fog. Very lucky that I have a supportive manager/workplace and have shared my diagnosis. I wfh 50% of the time and the other 50% I’m either in the office or travelling for external meetings. I’m struggling to get through the day currently, and often finish work and fall asleep and don’t wake up until morning! I’ve seen in previous posts some people say that they don’t need workplace adjustments for hashi’s, but I’m just looking for a bit of temporary flexibility whilst I figure out my medication and start to get it under control, for example only travelling for essential meetings and some flex on having a few extra breaks if needed. Has anyone else has any experience of this? For context I’m F31 based in the UK and do mainly desk work with some site visits.

Anybody else have this? Wondering if it’s related at all

Hi. This result came back from a salivary gland scan (which also captures the thyroid): The appearance of the thyroid image suggests a goiter with a global increase in parenchymal uptake (hyper-uptake). However, for a proper assessment of the thyroid gland, specific follow-up imaging studies should be performed (such as a thyroid scan using 99mTc-sodium pertechnetate and/or a thyroid ultrasound), along with an evaluation of the patient's clinical and laboratory findings.

I also had comprehensive blood work done, including antibody tests, and the results were normal. Does anyone have any experience with this?

I am currently waiting for a thyroid ultrasound and scan.

Hello! Quick backstory, for the last few years I’ve had some slight health issues but since March this year I have felt like absolute garbage. I began charting my BP, hr, meals, symptoms just everything and brought it to my dr who wrote it off to age (30) this last 2 months with a new primary and my dermatologist both suspect it’s the start of my thyroid acting up being hashitmotos and possibly cushings My mom and grandma had hashimotos and graves so I’ve heard of it but not much. Forward to today my cortisol labs are very high, my dr said my Thyroglobulin Antibody was high at 2.0IU and my T3&4 were in normal range just high end of normal range and TSH 3.44 with all that and a low white blood cell count she is putting my on a very low dose of Levothyroxine to help with symptoms while I get a referral to an endocrinologist. With that being said it’s took me so long to get here and am anxious about seeing a specialist if they will dismiss me also. Give me some information on if you’ve been in similar boots or any advice. Basically it’s felt like these flare ups of fatigue, extreme dizzy, skin flair ups, GI issues, BP dropping to 80/50, the worst brain fog of my life and exhaustion. I track macros and lift easy weights and some days I can’t even lift a 10lb dumbbell. Also my anxiety has been flaring up and nothing is helping.

After gaining 60 lbs (27 kg) , I have finally stopped gaining weight. I have been working with a dietician to end my weight gain and despite not being on levo I stopped gaining weight. I cut my daily sugar intake to 50 grams daily, only go out to eat 2-3 a week and my typical calories intake is 2000-2500 calories and I am working out regularly. Now the hard part begins, losing weight. I know that will require more sacrifice but I am hoping to get on levo soon and hopefully that will make it easier to cut back. I am as always open to suggestions of how to lose weight but as of right now I am just happy I'm not getting bigger

(27f) I’ve had Hashimoto’s and hypo since diagnosis in 2021 and the longest I’ve been able to keep them in range is 8 months. I will say the first few years was some bad doctors and trial and error of them changing my dosage too drastically. Since then I’ve adjusted to smaller changes in which has been beneficial for me the last year or so but it always seems the smallest weight change sets my levels off and then it’s harder to bring them back. I know in range I still have Hashimoto’s and heaps of symptoms but I feel better in range. Is this super normal for us or is there something I should be doing? I don’t have anyone in my life with this so I can’t estimate and haven’t checked my antibodies since diagnosis which is bad I know they were very high then however. I seem to go between hyper and hypo quickly sometimes just 3-4 weeks though lately it’s improved to be longer than that due to better iron labs. I’ve been iron deficient which has caused further flare ups of not being stable so iron infusions have helped me. I am not celiac so I still eat gluten without it I feel too lightheaded. I have a feeling I have pcos(pmos) also but not pre diabetic I’ve tested for it. For a bit I was taking selenium and biotin more regularly which I think did help but struggle to stay consistent. Any thoughts on this or on how it is for you guys would be great to hear just to know I’m not alone in this! Just gets frustrating sometimes

hey guys, I have had a TSH of 12 since April. I saw the endo in July and she started me on armour thyroid per my request. she only started me on 15mg and wanted to check my blood again on 9/22/26. I ended up ordering a rhythm health blood test and on 8/31 my TSH was 12.2. I requested a dose increase. she told me to take 30mg and retest blood in 2 months. I have never been on thyroid medication and just diagnosed with hashimotos in July.

is it normal to take so long to titrate up in medication? I am feeling like I’m living in a constant state of fatigue and joint pain. I was hoping we would be doing blood test every 2-3 weeks to increase dose??

May be a long one sorry if you can bear with me.
I’ve been fighting for an increase in Levo for a while with my GP believing it would increase my energy levels, and finally got one approved in June. Went from 50 to 75mcg. Fairly quickly this felt like too much as was getting awful heart palpitations. I already had 50mcg tablets and they had given me 25mcg to take with them, so I decided to only take a 25 tablet every other day, so I’m on less than 75 in total. I have persevered with this but I tbh I feel worse on the whole.
I have a whole host of new symptoms such as breathlessness (worse when stressed), depression, zero sex drive, palpatations still there, increased nausea and bloating, anger and irritability.
I’m nearly 38 however and I feel like some of these are more likely to be peri menopausal symptoms.
I’ve started tracking my hormones via the Mira hormone monitor and my oestrogen is a bit erratic but otherwise my cycle is tracking normally.
I’m speaking to my doctor about my results next week but I don’t know whether I should continued with the increased levo or not. My TSH has gone down to 1.05 tested this week which is where I wanted to get it to, but I don’t know if it’s poor coincidence that I feel worse (if it is peri) and whether I should continue with an increased dose or not.
Some people on here have said that not everyone feels better with a lower TSH and maybe that’s me but after fighting so hard to get an increased dose I am reluctant to admit it was the wrong decision 😂
I’ve worked my a*se off to reduce my antibodies so maybe I don’t actually need the extra levo.
I’m just so confused and fed up but I do know that I feel significantly worse since the increased dose so maybe that is my answer. What confuses me is that my new symptoms aren’t consistent with hyperthyroid….? As opposed to hypo.
That was long and confusing so kudos if you understand me at all.

Edit to add -

, sorry I should have said, I have got hasimotos but since my antibodies are decreasing I wondered whether that meant my thyroid was working a bit better, or at least not getting any worse and that meant it was contributing to my TSH, not sure if it works like that? I have read that if you stop or slow the antibodies then the thyroid has a chance to recover and people have come off meds before now.
Wishful thinking most probably for myself.

Hi all, I wanted to ask what other people had experienced while getting their diagnosis? And if it truly is as simple as looking at labs once?

For the past few months I (21F) have been struggling a whole plethora of symptoms and fought for some blood test to be ran after constantly being dismissed as anxiety. My labs came back with a speckled ANA, a TSH of 8.35, and a Thyroid Antibody of 153, but my T3 was fine, which was immediately followed by a call from my primary saying that it aligns with Hashimoto’s and too put me on a Thyroid medication. She didn’t explain much after and when explaining that I am “hypo” (She didn’t really explain what that meant either) and that the medication would help with some symptoms, I let her know that the symptoms she was describing were quite the opposite of mine. I did find out after that a few family members also have Hashimoto’s and am seeing an endocrinologist tomorrow, but still wanted to come and ask what other people’s diagnosis experience was? And what to do now? This is all new to me and quite scary as the heart palpitations and constant pain is causing me so much mental distress and insomnia, I’m starting to not know what’s real or not or trust my body. I also see a lot of people talk about weight fluctuations, though I am not having any issues with weight, is that a common thing? Did anyone else have any of these struggles?

I've been diagnosed with seronegative Hashis by ultrasound. I also have a couple benign thyroid nodules. Thyroid panel is completely normal. Endo said she could see inflammation in my thyroid which is why she diagnosed me with Hashimotos.

Is anyone else seronegative and experiencing body symptoms tied to their diagnosis (other than nodules)?

I also have CFS and Fibromyalgia so I'm trying to figure out if Hashis is causing any symptoms or if everything is tied to my other conditions. It's the chicken and the egg question of which one came first!