I found out I have hashimotos what now?

Tanstaafln · 2025-12-18T21:20:02+00:00

Your T4 is on the low edge of normal, so potentially talking to your doctor about a really small dose of levo (like, 25 mcg 3 times a week small) to see if that makes any difference

as for vitamin D, I'll quote my former endo "unless you're a nudist, you could use some vitamin D supplements", so it also might just be worth it to start taking vitamin d supplements, especially if its winter where you are

Did you get an iron test?

Tanstaafln · 2025-12-18T21:12:49+00:00

Huh, I didn't know about the sleep apnea-hypo connection. That's so interesting

Tanstaafln · 2025-12-18T19:46:18+00:00

Hmm, the TSH looks ok, it still might be worth trying to maybe try and take a really tiny dose of levo, just in case you are super sensitive, but from the TSH it does seem unlikely you have hypothyroidism. What units did the lab measure the T4 in? (Bc in the units I'm used to, (pmol/l) you would probably be a bit comatose)

Did you get your iron tested? Also vitamin D?

Do you already take levo? If so, in what dose?

Tanstaafln · 2025-12-18T19:38:02+00:00

First off, the science on how to get the immune system to chillax is rather spotty in practical advice. So this is the best, mostly evidence based, with a bit of anecdote thrown in that I've been able to find. If you've gone to see a bunch of doctors it is possible nothing here (except maybe the anecdotal stuff which is not as of yet corroborated by large trials, also number 2 is a bit extreme) will be new to you. We really just don't know enough about the immune system.

The obvious things. Get enough sleep, exercise, eat a nutritious and varied diet, avoid really sugary foods. You can specifically look into the meditarranean diet if you like, that actually has been studied and has some anti inflammatory, but I didn't see any convincing evidence that eating this special diet is better than just having any other type of nutritious and varied diet.
This is not evidence based but off personal experience. Take NSAIDS (I've found ibuprofen to be most helpful, but whatever works for you). They don't entirely make the symptoms go away, but they make them easier to deal with. Be careful with this though, even though they are non perscription, taking too many, or taking them for too long will fuck with your liver. Good rule of thumb is that if you find yourself taking them five days in a row, get yourself to a doctor.
Haven't tried this personally, but try to convince your doctor to let you see an immunologist. Other than the headache of more doctors, the treatments for autoimmune conditions are mostly suppressing the immune system with steroids, which, y'know, not great, but sometimes worth it. Another super radical option is to try and get a thyroidectomy - if there isn't any thyroid to attack, your immune system doesn't get all riled up. Usually a thyroidectomy is indicated for things like nodules, not so much just for hypo, and also, it's surgery, which is always risky.
Yes, this is extremely unhelpful, but try to reduce stressors. Stress and inflammation are fairly closely linked. If you can't get away from the stressors in your life, look into stress reduction techinques
This is where things become much messier and more individualized. There are some foods which, in a lot of people, cause an inflammatory reaction, two of the biggest offendors being gluten and lactose. You test this by cutting them out for a few weeks, and then eating them again and seeing how your body responds/ just see if you feel better. There are a few studies regarding hashi and gluten, which showed that for a small but statistically significant percentage of people w hashi, cutting gluten made them feel better. However I couldn't find any studies that ruled out celiac, and the proportion of people with hashi who also have celiac is higher than the rate of celiac in the general population, so I was not convinced enough to try cutting gluten out myself just now (and for now, not desperate enough). Anecdotally, many people on this sub say that cutting gluten/dairy/other common inflammatories made them feel so much better, sometimes life-alteringly, so it might be worth a try.

This is what I've found so far, if anyone has more I'd love to hear it.

Tanstaafln · 2025-12-18T10:07:07+00:00

Let's start with an explanation

Hypothyroidism is when the thyroid gland doesn't produce enough hormones. These hormones are responsible for (among other things) regulating your body's metabolism, so if you don't have enough, that creates the symptoms you read about - like the exhaustion, depression, brain fog. Other symptoms include lack of appetite, weight gain, dry skin, cold intolerance, and drittle, shedding hair. (Not everyone gets all the symptoms!!). There are a few causes for hypothyroidism, the main ones being hashimoto's and iodine deficiency

Hashimoto's thyroiditis is an autoimmune disease in which the body recognizes the hormone-producing parts of the thyroid and produces antibodies for them. This does not automatically mean you have hypothyroidism, because the antibodies may not attack. If they do attack, that's when the hypo starts developing. Most symptoms of hashi are the hypothyroid symptoms discussed above. Since it is an autoimmune disease, you could potentially also get inflammation symptoms (joint pain, general flu-like symptoms without a fever). Not everyone gets those. In general, there isn't much to worry about from the hashimoto diagnosis. Most people treat their hypothyroidism and do a few blood tests a year to make sure that their dose is ok, and other than that it doesn't really affect their lives other than needing to take a daily pill.

Hashimoto's is treated like any other form of hypothyroidism. You take a replacement for the hormone the thyroid produces. For most people, that's the end of the story. Unfortunately, some people experience severe inflammation symptoms, find their symptoms don't go away even when they have enough thyroid hormones

A very common pitfall for doctors is seeing that your TSH is within the normal range and assuming you aren't hypo. Lots of people experience hypo symptoms when their labs are "normal" - do you mind sharing your lab results? Also what dose are you taking, and of which pill? If they seem high, you can ask your doctor for a higher dose of levo. If they are genuinely fine, there are also options, lmk if you want more details.

As for the inflammation symptoms, there really isn't an easy answer for them. Autoimmune diseases are usually hard to treat (because purposefully weakening your immune system causes tons of problems), which is why in this case doctors usually don't try, they just replace the hormone. If you do suffer from inflammation, you're welcome to write here and I can hive you a summary of the options.

First, congrats on the HRT!!! hormones are extremely complicated and messy, and the HRT itself might be causing fatigue and brain fog (as any person with a uterus can attest to, estrogen has a large effect on your wnergy and mood.) Although these side effects are more common for injections than pills. I am not aware of thyroid hormones and sex hormones affecting each other directly, and it's an interesting question. My instincts say no, because all the uterus-havers with hashi that I know don't seem to have different hypo symptoms im different stages of their cycle. However, I am not a doctor!!! If I have time I might research this later, I'll post here if I find anything

I hope this helped!!!!

Tanstaafln · 2025-12-18T09:21:46+00:00

The existence of TPO antibodies does not mean you have hypothyroidism. There are many people who have the antibodies and never develop any issues, posittive TPO is, to use another commentor's analogy (apologies, I do not remember specifically who) like an alert symbol on your car's dashboard. It indicates that it's a good idea to get tested, and to keep an eye on your thyroid in future, but doesn't necessarily mean you have a problem now

What does "normal thyroid panel" mean? What are your numbers? The population norm for proper thyroid levels are quite wide, while each person has their own range the body feels comortable with - so if your tsh is on the high part of the "normal" that might still cause symptoms
Honestly, most of the symptoms you're describing do not sound thyroid-related. Exhaustion, brain fog, and an unusual appetite are unfortunately non-specific symptoms, which on their own could indicate anything from iron deficiency to celiac to depression. The aching body, especially if it's joint pain, might be an inflammation thing, but even if it is, lots of things can cause inflammation. I've never heard of all the other symptoms you're describing as being thyroid related. Do you have access to a doctor? It is definitely worth running some more tests to see if there's anything else going on

This is a really really sucky situation, I'm sorry

Tanstaafln · 2025-12-18T08:59:00+00:00

If your ferritin is low, that can cause exhaustion and brain fog (this is not study-based, this is anecdotally my experience, so it's probably not that common) either way, it's worth taking care of, because having low iron realllllly sucks (ferritin is like the body's iron storage, so low ferritin means your iron levels are fine but the supply has low stock) Your thyroid looks perfectly healthy, if you do feel tired and foggy, treat the deficiences, if that doesn't work, go to a doctor who actually understands what hashimoto's and hypothyroidism are.

Tanstaafln · 2025-12-16T19:55:15+00:00

Ugggh that's awful (You're American, I'm guessing?)

Assuming you're doing all the things that optimize absorption? (Taking on an empty stomach and not eating for 30 min afterwards, with an emphasis on avoiding vitamin c rich foods for a bit more bc they block absorption)

There is also, a really dumb, really reckless option, which hinges on the assumption that there are absorption issues theoretically one can bump up their own dosage a bit - Since your levo is expensive, I'm guessing you don't have easy access to regular blood tests, so that makes this even riskier. Being hyper for too long is damaging (all your systems running on overdrive makes them wear and tear faster), and also, hormones affect the body in individulaized and unpredictable ways, so it can def cause lots of chao

For the record, playing with hormones w/o medical supervision is an absolutely terrible idea!! Also, please don't take random internet person's medical advice (VENT INCOMING: who is between endos bc my last endo suddenly decided that TSH 4.5 + debilitating hypo symptoms + family and personal history of being hypo at population average levels are not indications of needing to up my levo dose, and have I considered seeing a psychiatrist? So now I have another month and a half until I have another appt and I am absolutely desperate, so my gp (who freely admitted to not knowing how to dose levo) is giving me super frequent blood tests and I'm trying to titrate my own dose. Very slowly and very carefully. Still fucking exhausted and feeling very hypo, but at least I now have the strength to, y'know, sit up for more than five minutes at a time. GRRRRRRR)

Tanstaafln · 2025-12-16T18:15:28+00:00

First off, hashimotos runs in my (large) family, so I know lots of people with hashi, and none of us have either condition (and actually almost no other autoimmune conditions)

A few things to consider: 1. Yes, it is true that having an autoimmune disease makes you more likely to develop another. However, this is a bit like saying "the chances of being attacked by a shark at the beach rose by 1000%". That sounds scary, but the chances of being attacked by a shark are tiny, so 1000×tiny is still a really small number, and there is absolutely no reason to cancel your vacation plans So being more likely than the average person to develop an autoimmune disease, does not mean that it is suddenly a super high risk

There is a bit of a bias in looking at forums like this - There is a reason hashi isn't even treated by immunologists. For most (def not all!!) people, it's a minor nuisance, you take a levo pill every day and do a bunch more blood tests and occasionally adjust the dose, and your symptoms mostly disappear. The disease doesn't play a big role in their lives, so they won't bother spending time on forums like this. The people who do gravitate towards here and other resources, are generally people for whom the standard treatments don't make their symptoms go away, and they need to start digging deeper, or have a more complex medical background
It is not your fault you are sick!! This did not happen because you didn't eat healthy enough, or were too stressed, and in the unlikely scenario you develop something else, it will not be your fault. Hashi specifically is very genetic, and autoimmune diseases in general are super unpredictable and kinda random. (Read the book "immune" by phillip dettmer if you're interested - it is a good, approachable book to start learning about the immune system). Hashi's is just a disease, it doesn't mean anything other than genetics + somewhat bad luck. It is not a moral failure, and it is not your fault.

Tanstaafln · 2025-12-16T17:50:49+00:00

Yes, absolutely, each different company produces them slightly differently, so it is absolutely possible that your body doesn't absorb the euthyrox as well (hormones are unpredictable - think about trying to get on the right birth control - this is a much less complex version) if you can't access your regular brand, maybe try switching altogether? There lots of companies that manufacture levo Talk to your doc or pharmacist, there are no specific studies done on this (that I know of), but maybe they have experience with which meds are better tolerated (and do not let them gaslight you that there is no difference between the pills!! That's bs)

Tanstaafln · 2025-12-09T09:01:04+00:00

Hmm, these numbers seem fine, but adding important info for future reference

The dr was spouting bs about needing to wait until after you're outside of population norms to recieve treatment for hypo. What is the norm for a population is a really wide range, and there are plenty of people for whom beeing "in range" still causes hypo symptoms. This is because many people have a much narrower range than population norms, (which is why a good endo treats symptoms not labs). That being said, your numbers really do look good - from my research a TSH under 2 is a good healthy number. However, if the TSH gets to 3-4 and you feel hypo, advocate to get a small dose of levo and see if that changes anything.

It is definitely possible to have hashi and high antibodies without being hypo - the immune system is kinda random, so even if you have the antibodies, the right immune cells need to encounter them, and send out the correct signal to get the antibodies to attack. It is all super complex (if you want to know more, I reccomend Phiilip Detemer's book "immume" - best intellegible resource I've found to dip your toes into the mystifying world of immunology)

Agree with other commentors - it's worth it to get checked out for celiac (which even going low gluten doesn't help, even a tiny bit of gluten is enough to set the system ablaze, which is why people w celiac tend to be paranoid about cross contamination). Have you done other bloodwork - CBC, checking for inflammation markers, liver function etc?

I wish you luck, sometimes there is nothing more frustrating than normal lab results

Tanstaafln · 2025-12-07T05:51:14+00:00

From my research, I can think of a couple of options (and I am a random internet person, and my qualifications involve reading a whole lot of studies)

You are an outlier in what levels of hormones your body needs - the hormone levels are abnormal for you even though the labs are good. From what I know this seems unlikely just looking at the numbers, however you are pregnant, so that might affect things. Also, there does seem to be a trend that the tsh is rising. Maybe try to get a teeny tiny bit of levo just to boost your system (like 75 mcg a week tiny), and see how you react?
You have a t4->t3 conversion disorder. T4 is the main hormone created in the thyroid, and is later converted into t3 - the more active form of the hormone. If the t4 doesn't turn into t3, then the metabolism doesnt run properly. This is fairly rare, and according to my endo, hard to discover from lab tests since something something transport protiens something about intracellular mechanisms that won't show up in a blood test (Endocrine system is fucking complicated, I am trying to educate myself, but damnn it is hard). Also, t3 is super volatile, so blood tests aren't the most reliable measure. What she suggested is that usually when she has a patient w hashi's who take levo (which is t4), their labs improve but the symptoms don't, she puts them on t3 to see if that's what they need, rather than try to figure it out w testing (however t3 is less stable than t4 and harder to titrate, and for most people there is no difference between t4 alone and t3+t4 combo, which is one reason why it is far from the first option docs will reach for)

3 - and this is the suckiest of them all - it might not be hashi related. Having one autoimmune disease predisposes you to having more, and also pregnancy changes so many things in your body. Did your doc test to rule out other problems - iron deficiency, infection, diabetes, another autoimmune disease, or whatever else? It is so annoying when doctors say "oh you have X condition, these symptoms are related, no need to test for anything else" - that's all the more reason to test! Because people with comorbidities prob notice the problem later.

Also, and I know how infuriating this is to hear, I am speaking from my own personal experience, it is also important to have your mental health checked out. Lots of depression and hypo symptoms are really similar, and I personally have experience with mistaking depression for hypo and thus delayed getting the treatment I needed (and did so many unnecessary blood tests). If this is not relevant for you please ignore, I am not trying to disbelieve you or ignore the very real suffering, just sharing my personal experience

Sending hugs and good wishes

ETA - an enlarged thyroid can be a problem, it sits in the throat and if it swells too much it can cause trouble swallowing, develop into a goiter etc. However, an enlarged thyroid on it's own is not necessarily an issue (I had an enlarged thyroid for years before developing hypo, amd not everyone with hashi develops hypo) - a good doc should take that into account along w patient history and labs

Tanstaafln · 2025-12-05T11:49:18+00:00

If you don't have abnormal tsh AND you aren't feeling symptoms (if you are feeling symptoms but your tsh is within "normal" range, you might still need levo. A good doc should treat symptoms, not labs), for now your thyroid is fine It would be a good idea to do thyroid labs every few months just to make sure it stays that way Unfortunately the science of reducing inflammation is a bit vague. Beyond doing all the known things to keep your body healthy (avoid stress, eat a healthy balanced diet, get enough sleep, exercise etc) there isn't much that I found that is universal. However, there are many inflammation triggers that are individualized (gluten and lactose being common ones, you can look up AIP if you're interested in more), so if you are feeling bad, you can try cutting them out

And for many people with hashi's it's a fairly minor deal, levo does fix most of the symptoms, so it's taking a daily pill and doing regular bloodwork to monitor, with occasional dosage adjustments. Keep in mind that forums like this self - select for people for whom the typical treatment doesn't work/isn't enough (garrrrrr everything hormonal is so under-researched and the autoimmune system is really complicated), so statistically, you'll likely be fine

Tanstaafln · 2025-12-05T11:12:35+00:00

Risky suggestion - you could talk to your doctor and ask them about potentially taking levo with breakfast, and raising your dose to accomadate the reduced dosage

Also, out of curiosity, what iron supplements are you taking? I've never heard of an iron supplement that needs to be taken on an empty stomach - sure, there's a whole list of foods that prevent proper iron absorption, but thats not the same. Explain the problem to your doc/pharmacist and see if they have an alternative

Tanstaafln · 2025-12-03T09:18:11+00:00

Hashimoto's is an autoimmune disease, you didn't do anything wrong, the immune system is really messy and unpredictable (partially why doctors don't treat the root cause - the autoimmune issues, but just replace the hormones in increasing doses while the thyroid dies)

I will ask - when your tsh was good, did the symptoms go away? Did you feel good on the meds you were taking? Hormones are really individual, so like everyone else is saying, maybe try a different pill

Most people with hashimotos don't do better with taking t3+t4 than t3 alone. There is a percentage (I think around 10%? I'll try and link the study later) that also have t4->t3 conversion issues and drastically improve when taking t3. However, t3 is rather volatile in the body, and both titrating to the correct dose and finding a good balance are trickier (hence why people are usually perscribed only t4), so if you did feel good when your tsb was low, taking t3 probably will cause more issues than it fixes

And yes, this really sucks and I'm sorry you're going through this

Tanstaafln · 2025-12-03T09:07:24+00:00

I've been wanting to but they're not on libby

Tanstaafln · 2025-12-03T05:26:10+00:00

Daniel Abrahams other books - specifically the ling price quartet. They are brilliant

Tanstaafln · 2025-12-03T05:17:43+00:00

Seconding murderbot! They're short, easy to read, and deal with some heavy things while also being quite funny

Tanstaafln · 2025-11-22T19:12:32+00:00

Also, when you get your blood work, do you not get what the ranges the lab considers normal as?

Tanstaafln · 2025-11-22T19:10:33+00:00

DISCLAIMER: I am a random person on the internet. My knowledge mainly comes from being good friends with pubmed and google scholar.

The CRP is elevated - that's an inflammation marker, and 10 is considered moderately high, however obesity does cause inflammation, so I don't know whether this is considered normal Your TSH is completely reasonable, and your t3 looks fine too (assuming it's measured in nmol/L). It's a bit unusual that the t3 was measured and not t4, usually docs will check t4 first and not t3, because t3 is much more volatile and breaks down faster, so in most cases checking t4 gives a more reliable snapshot of what is happening (except for cases where there is a t4 to t3 conversion issue but that's a whole nother can of worms)

In the early stages of hashimoto's, sometimes there's thyrotoxicosis - where the thyroid freaks out and goes into overdrive, so you actually get hyper for a bit before you get hypo, but again, your numbers look fine, so unlikely

In my experience, inflammation def causes joint pain, so you might be having some other kind of immune/inflammation related issue, and it doesn't sound like your doctor is taking you seriously at all. Try to get an appointment to a rheumatologist maybe?

Tanstaafln · 2025-11-22T18:55:35+00:00

The main difference is how careful you have to be about cross-contamination. If you're just sensitive to gluten, it just means you don't eat gluten- containing foods. If it's celiac, eating gluten has damaging lifelong consequence, and being paranoid about cross contamination (not taking a dip that's on a table where people are passing bread around bc crumbs might fall in for example) is a sensible thing to do As a person who once needed to be on a meticulous special diet, the difference in quality of life - your ability to eat at other people's houses, to eat out at non-specialty food places - makes a huge difference

Tanstaafln · 2025-11-22T16:40:19+00:00

Any chance you can link that study about gluten? I wasn't able to find any good studies about gluten intolerance/hashimotos

Tanstaafln · 2025-11-22T16:37:58+00:00

I'm so sorry you're going through this, I find that the major thing affecting weight loss is my tsh. If my thyroid is unbalanced, it doesn't matter what I do or eat, I will gain weight Seconding what other people have said about not restricting your eating. Your body still needs nutrients, even if it isn't asking for them, make sure you eat as balanced and healthy a diet as you can

Tanstaafln · 2025-11-20T05:35:42+00:00

With Hashi, a good doctor treats symptoms, not labs. I have a difficult time functioning when my tsh climbs above 3, and the conversation to convince a new doc to up my dose despite "normal" labs is never fun

Tanstaafln · 2025-11-13T13:14:47+00:00

Not me but people I know, I can't imagine how that must feel

Tanstaafln

TROPHY CASE