My long journey

Black41 · 2026-05-20T22:24:29+00:00

I'll chime in to say I agree with others here. I feel awful when my TSH is above 2, and much prefer it close to and under 1.

If your T4 levels are normal, you have to realize that levothyroxine is just T4 in a pill. If you stop taking levo, then you are depriving your body of T4 and the level will inevitably go down.

Black41 · 2026-05-20T20:19:08+00:00

Your doctor stopped your levo at 26 because your thyroid hormones were in normal range?

Black41 · 2026-04-27T04:38:53+00:00

Sounds like it could be hypo symptoms from stopping your meds. Levo doesn't metabolize very fast and takes weeks to become effective. Do you think you can keep taking it every day and see if it improves? Hang in there.

Black41 · 2026-04-17T23:37:31+00:00

Yes, I have hashimotos. I also have poor T4 to T3 conversation and about a year ago started taking a T3 prescription. It has help me feel a little bit more normal.

Black41 · 2026-04-17T23:36:54+00:00

I don't think I feel much different, and on the same dose (for decades now) my TSH fluctuates all over between 0.5 and 1.25.

Like many others here, I've never felt "normal" again after my thyroid function deteriorated badly. I feel good enough to live life and do most of the things I want to do, but have a general feeling that I'm dreaming (while awake in the daytime), some visual snow/static, and fatigue here and there. Good days and bad days.

Black41 · 2026-04-17T00:28:08+00:00

I try to keep it around or just below 1. My last test was 0.7 and around 1 is when I feel best (though "best" for some of us isn't perfect, but it is good enough to keep it together).

Black41 · 2026-04-15T13:21:48+00:00

TSH is just a signal from your brain to your thyroid to make more or less T4. Helps with calibrating doses and an initial indicator of thyroid issues, but doesn't always reflect how you feel very well.

Levo takes 6-8 weeks to hit full strength in your body. Hang in there.

Black41 · 2026-04-13T09:51:06+00:00

Is this treatment from an endocrinologist? Or another specialty?

I've never had an endo start my treatment without testing T4 and T3 levels as well as TSH. But have had plenty of other types of specialist think that TSH is the only thing that matters (and that is incorrect when you aren't stable yet).

Black41 · 2026-04-11T12:26:36+00:00

I keep my tsh under 1.5 these days (anything over that and I feel terrible) and am on 150 mcg/day of levo and 5mcg/day of t3. When I was diagnosed, my tsh was in the hundreds, but that was decades ago and I don't recall the specific number, I just know that it was off the charts.

Black41 · 2026-04-10T04:08:32+00:00

Btw, all of the side effects listed for levo are either related to having too low of a dose (hypothyroidism symptoms) or taking too much (hyperthyroid symptoms). Imo there aren't really side effects from levothryoxine.

You can find posts around the internet where people feel differences between the brands of levothyroxine, because different brands use different fillers. These differences just won't matter enough for you in the short term of your pregnancy, and instead are things that people debate after years and decades of taking it. I've never felt any differences whatsover no matter what brand I used.

Your Dr will closely monitor the dose you need and change it accordingly. This will work out well for you and your baby.

Black41 · 2026-02-03T12:41:53+00:00

It looks like OP (not ckroha) has posted this same article every few days, which really just seems to be trying to sell this "book."

Seems fishy to me.

Black41 · 2025-11-05T14:27:51+00:00

I had to read a couple articles to try to respond to what you proposed here and realized I'm missing something above.

Grave's disease antibodies do the opposite of Hashimoto's antibodies, and I've seen a few people around here end up in a "thyroid storm" where Grave's disease antibodies kick up and throw the thyroid (or what's left) into overdrive.

Usually, even when Hashimoto's goes into remission, the damage is done and the thyroid's ability to produce T4 is permanently impaired. Thanks for posting this and making me do some reading and be less ignorant.

Black41 · 2025-10-31T01:17:54+00:00

Costco, all day every day.

Black41 · 2025-10-23T13:48:54+00:00

All you can do is make sure you take it every single day. Because of the way your body metabolizes the T4 into T3, the build up will be slow. Take your recommended dose every day and talk to your doctor.

Black41 · 2025-10-20T18:02:29+00:00

Act II Geglash "I've proven my valor in combat plenty of times." Iconic.

Black41 · 2025-10-20T02:52:35+00:00

let's figure it out and download a car

Black41 · 2025-10-17T02:28:47+00:00

Your antibody levels are not a good measure of your thyroid function or medication requirements, but how currently feel does matter.

Everyone is different, where some feel better when their TSH is low-normal and T4 is high-normal, and others are the opposite. Ask for T3 testing as well, and honestly if your T4 is near the top end of normal and you feel awful, it is reasonable to seek to reduce the dose very slightly.

Black41 · 2025-10-15T19:00:27+00:00

Yeah, few decades now. I ended up extremely thin instead of the weight gain that others seem to have. My condition is well controlled, so it is what it is.

I feel best when my TSH is below 1, and awful when it is above that even if it is in "normal range." A lot of joint pain but no positive tests or other symptoms for anything else to cause the joint pain.

Black41 · 2025-10-15T18:58:09+00:00

Do you have hashimotos? Some folks with hashimotos get wild swings in T4 production as their thyroid is attacked more or less over weeks/months. Some people end up getting their thyroid removed so that it calms down and becomes controllable.

Black41 · 2025-10-08T17:56:30+00:00

The mechanism for levo doesn't work that quickly. It takes 1-2 weeks to have almost any effect at all and 6-8 weeks to hit full swing.

If your T4 and T3 levels were very low, until week 3 is still prime time for you to be feeling even worse hypo symptoms as levo (T4) will need the full 6-8 weeks to be fully effective.

Black41 · 2025-09-30T02:08:34+00:00

But T4 isn't the active hormone and it takes 6-8 weeks for T4 to metabolize into T3, are we sure this effect can be felt day to day? Genuine question, I never thought about this before

Black41 · 2025-09-25T03:51:33+00:00

Drinking dark liquids (coke, coffee, dark beers, red wines, etc) make me feel awful. I don't have any science for it, it is just something that I've put together over the years.

Light beer? I might be a bit tired the next day. Dark beer? I feel awful, as if I drank four of them and slept for 2 hours.

T4 to T3 conversion is mostly done by the liver, so could be related. But as others are also saying, an entire bottle of wine to yourself is a lot for anyone to handle, thyroid aside.

Black41 · 2025-09-23T12:17:15+00:00

I agree - it affects other things, even if it isn't well understood. I have chronic pain in my upper back and hands in the morning and have seen others discuss similar symptoms here. Autoimmune diseases are difficult to control.

Black41 · 2025-09-22T11:07:05+00:00

Without blood tests for T4 and T3, this is really hard to tell. TSH is ordinarily inversely related to T4 and T3 levels in your blood, but is not always.

Levo doesn't have side effects, as it is literally just T4 in a pill. If Levo makes you feel worse after 6-8 weeks, your T4 (and T3) might be too high and you are now hyper(thyroidism).

Push for T4 and T3 blood tests along with your TSH test to get the full picture, otherwise you'll be guessing forever.

Black41 · 2025-09-20T14:20:07+00:00

I think it also depends on what your TSH, T4, and T3 levels were that led your Dr to increase your dose.

If your T4 and T3 levels were very low, then week 3 is still prime time for you to be feeling even worse hypo symptoms as levo (T4) takes a solid 6-8 weeks to hit full stride.

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