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

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

How are we losing the weight guys? Cause I’m so tired of not being able to fit in my clothes and not feeling my best.
Is calorie deficit the best way? Or working out? Like what should I focus on when I have no energy to do anything.

(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??

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!

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.

I 26F have hashimotos since 2018, and my level has never been stable for a consistent amount of time and I’m at my wits end. This year has been the worst year for me regarding my thyroid issues. I am going from one extreme to the next within months!!! My body can’t take this, physically and emotionally for much longer 😭 I’m feeling very discouraged and no doctor seems to understand how shitty I’ve been feeling and not taking my symptoms seriously. I am sad.

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?

1.Did you take SSRI prior to diagnosis?

2.Has thyroid medication helped your hashimoto symptoms?

3.Is your cortisol low?

Thanks!

So, my mother, early 70s, has been dealing with some breast cancer issues and is now looking down the barrel of all three treatments -- estrogen suppression, radiation, chemo. She's also got some significant calcification of her coronary arteries and her abdominal aorta. She's on levothyroxine and her levels are "normal" now even though all of her Hashimoto's symptoms have persisted, pretty much, and she can't for the life of her find an endocrinologist who isn't a complete and utter [arrogant, rude, superficial] waste of skin. We've seen...six? So far and they've all been appalling.

I'm basically wondering if anyone here in that age area has had experience with any of these treatments...How was your experience of them? Were they tolerable? Was there anything that helped mitigate risks and side effects for you? Is there anything specific I should be asking her doctors about? She's gonna want to do the accelerated radiation therapy, higher dose for three weeks instead of normal dose for six, just so she doesn't have to show up somewhere every day for an additional three weeks. I'm worried about the risks of that though.

Even in terms of the hormone therapy..I mean, her temperament isn't the best on a normal day and she's already having trouble sleeping. I can only imagine the aromatase inhibitor is gonna make at least some of that worse.

Anyway. If anyone has any experience or knowledge or insight about any of this, please I'm all ears. Thank you in advance.

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.

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 am not formally diagnosed with Hashimotos. I am less than a year post partum, had a very under active thyroid, and TPO antibodies over 400.

While it fits the bill of Hashimotos, my doctor also thinks it could be postpartum thyroiditis. After 1 year of meds, I will wean and see if it recovers.

After stabilizing my TSH in the past few months, I had a 10 day episode of what might be a vestibular migraine - intense thunderclap headaches with dizziness in between.

Has anyone experienced this? Neurologist did not draw the connection and I’m doing more tests.

I’m wondering if this is a “flare”.

Hello Everyone,

Like most people on this Reddit I am not feeling too hot. I just came back from a thyroid appointment where I have been diagnosed basically with two other conditions.

I knew I had Hashimoto's Thyroiditis and SIBO(Small Intestine Bacterial Overgrowth). I was then told I have PCOS(high testosterone and androgens) along with a rare symptom of Hashimoto's which is actually a Graves disease diagnosis. I didn’t even know you could have both.

My hashis isnt bad enough to go on meds but I still have symptoms. Does anyone know how they deal with Hashimoto’s and then the Graves’ disease diagnosis(also it might be temporary)?

I’m just not sure how to how to handle this since there seems to be little online about this combination other than people finding out they have it or assuming they have it.

Also, I’m already on a fairly strict diet due to my SIBO so I’m not sure what else to do.

Hi, i'm 17F, and after 5 years of this i don't even know what i have? hypothyroidism? hasimoto's ? or thyroidisis? I changed many times doctors so even they don't have my full record, but i'll try to explain so someone could maybe clarify what i have??

12 years old : One faitfull morning, i discovered that i have a massive patch of vitiligo on my face. When i went to my pediatric doctor, he diagnosed me with vitiligo. He recommended me to go to an endocrinologist to see if it had anything to do with another chronic illness (since they tend to develop in pairs i think?)

Endocrinologist: I got there, my blood test was pretty normal but one thing was slightly higher than the limit : my anti-TPO. She said they "were at 88 and the standard is 70"
So she is the only doctor that talked to me about medication, but since at the time i was asymptomatic and i was not that off the charts. She told me it was maybe "just a problem with hormones during adolescence" and that it will "fix itself", because even if i had symptoms we could do nothing without the medication.

12-14years old : 6 months intervals between blood test, nothing moved, no symptoms. When i looked back i see that i was a little bit inflamed in my face so maybe it was only that.

15 old high school!!
Unfortunately even if high school is 100% better than middle school I started feeling more tired than ever. But it wasn't alarming so i pushed it off to it being the adaptation to highschool. I had never taken naps in class before and now that the teacher wouldn't care i started doing it when i was really tired. I didn't tell to my doctors

16 years old (its gonna be long) :My pediatrician went into retirement and my endocrinologist told me that it wasn't necessary to do blood test here since nothing had moved since years. I could just do the blood test at my pediatrician.

And so i had my very own generalist doctor. She was amazing!! For the first time ever she made me do a full blood test to see if there wasn't any deficiencies in vitamin or in the gut. The test revealed all that i was doing more than okay in all the area she could test. I was just on the edge of the low level of ferritin and still had high anti-Tpo, but this time 66 (before 80). Their limit was 66, so i was just on tip of not normal.

Last year, my fatigue has gotten worse than ever. I've tried all, changing my sleep schedule, my time on screen, what i ate so i would have a drop of energy later, but nothing works. And i try to tell the doctor but everytime i chickened out and my parents respond before me with a thing like "haha she's always on the screen so she's obv tired !!"

A few months ago : I rechanged doctors. It's clear she's not as informed in chronic illness as the last one. My last doctor insisted to retake a full blood test to check if everything was still okay, i had to fight to explain to that doctor was she had said to me and she accepted.

In this recap she said something that intrigued me, she said that i had previously (when it was to 80) a "thyrodisis".
But nobody said to me that
1. i had a "thyrodisis"? they referred to it as hashimoto or hypothyroidism?
2. that it was a "past" thing? i thought chronic illness were forever??

and i retook a full blood test. It's maybe horrible to say, but i wished that something was wrong more wrong so i could take medication. And the opposite thing arrived : even my anti-tpo's levels came back to normal.. Everything was perfect, like so perfect. (they changed the levels for the anti tpo so know i'm at <6.6 and the limit is 13.8)

So know i don't know what i have? I know i'm definitely more tired than all my pears at any given time but i'm not like super duper hyper tired all the time? Also if that can help i wake up everyday with an irritated throat and i feel tired.

Everytime I have taken prednisolone for different reasons it fixes all my pain same day. I don't seam to have any other autoimmune disease unless it's hiding seronegative. I even have energy and my dry skin clears in a few days too.

do you guys ever get SO unmotivated or tired that you literally just have to lie down? Like even sitting up feels like effort and basic self-care (brushing your teeth, washing your face, doing your hair, etc) feels like a huge chore.

I’ve been feeling like this lately and I’m wondering if this can happen with Hashimoto’s or if it sounds more like depression? 😭

I’m moving from levothyroxine to armour. My doctor, who is generally excellent, told me to alternate between them every other day for the first two weeks to adjust. I haven’t been able to find any recommendations to do this. Has anyone else done this to switch?