on and off levothyroxin

[Miss81]

is it bad to be on levothyroxin and then to come off it for a few years then to go on it again?

[Buddy195 Administrator]

Have you stopped taking the 75mcg Levo/ 10mcg Lio you were aiming for in your post a year ago? It is not advisable to suddenly stop taking thyroid medication Miss81, although some members do switch types.

[Miss81 in reply to Buddy195]

Yes, so I didn’t reach the 75 T4, 10 T3 and I switched to thyroid glandulars. Then I stoped it all together to see if my thyroid can get back to normal as I hrt the idea to be dependent on the meds for life however it’s a slow process. Would it be ok to go back on the meds after having stopped them?

[Buddy195 Administrator in reply to Miss81]

I see Levo/ Lio as essential to ‘topping up’ my struggling thyroid levels & try not to ‘overthink’ needing it for life.

Have you recent blood results to share (ie from taking no thyroid medication)? Have you tested key thyroid vitamins recently?

[Miss81 in reply to Buddy195]

The only reason why I would consider taking this again is so that I can try the optimal 75mg T4 and 10 T3 to see if that would bring a period and ovulation, as currently my tsh is 5, T4 is 14, T3, 4. What do you think?

Also, is it ok to start on the meds again? Some say once you stop don’t start and stop

[greygoose in reply to Miss81]

Some say once you stop don’t start and stop

Well, look at it this way: you need thyroid hormone, T3, to live. Every single cell in your body needs T3 to function correctly. So, if you don't have any, nothing can function correctly and you will slowly die.

But, it depends on the circumstances, why you are hypo. If, for some reason, you've had your thyroid removed, or it's been completely destroyed by Hashi's, then you won't survive long without T3.

But if you still have some thyroid function left, it will do its best to keep you alive, come what may. But, if it is too sick to produce as much as you need, it's going to be a pretty miserable existance, and will get worse as time goes on.

Thyroids do not, cannot regenerate. Once it starts to fail - for whateve reason - it won't go back to normal function. There's nothing you can do about it. Taking levo is not a cure for a sick thyroid, it won't make it better. It is thyroid hormone replacement - calling it 'meds' is a bit of a misnomer and gives the wrong impression. So, yes, you do need it for life - or as long as you want to live. But not because you started it, that has nothing to do with it. It's not a drug that you get hooked on. It's a life-saving hormone. And you have to stay on it because you need it to live.

I expect many of us, at some point or another, have wondered what would happen if we stopped it. Because we think we might have been misdiagnosed, or because we have Hashi's and it's in 'remission'. So we stop it to find out. I did that. I was on a high dose of T3 only, and I had a fever that fried my brain, and I went temporarily insane! lol To the point that I was convinced I'd been misdiagnosed. So, I just stopped. From one day to the next. And I really can't tell you what happened in the short-term because I was too ill. I was in hospital drifting in and out of sleep, watching black shapes floating round the ceiling, and the room changing shape and size. But, once I got over all that, I felt fine - well, like a recuperating patient that nearly died, but still. I survived for six months. And then I started to rapidly put on weight. Got my thyroid tested and my TSH was over 40 - it had only been 11 on diagnosis! So, I started my T3 again, and the rest is history. As they say.

But, I'll admit, my case is... unusual. For most people, when they stop their thyroid hormone replacement, whatever it might be, at first they feel great! Better than they have for years. And they say 'you see, I was right, I didn't need it!' But that feeling doesn't last. Sooner or later, the symptoms come creeping back in, and often get worse than they were before. Until you realise that you did need it after all.

Is it ok to go back on it? It's essential. And, depending on how long you've been off it, you might have to start right back at the beginning again. I did, after six months. And then you have to work slowly back up to a dose that suits you again. And it's quite possible that second time around, you need a higher dose than you did before. And it's possible that you might never get back to feeling as well as you did before you stopped it - presuming you did feel well. But, that's the way it goes. And the important thing is that you learn a lesson from all that, and never do it again.

[Miss81 in reply to greygoose]

What do you say to those people that say you don’t need to be on meds. I mean why should we be on meds? Right? I also didn’t know that thyroid can not recover once high, as many say you might not need medication if tsh is below 10

[greygoose in reply to Miss81]

Yeah, but that's just rot! One thing you'll learn from reading on here is that doctors will stop at nothing to avoid diagnosing and treating thyroid.

Once again, look at it this way: A person with a perfectly healthy thyroid, no problems at all, is said to be 'euthyroid'. As a general rule, a euthyroid TSH is around 1. Never over 2 - that shows that your thyroid is struggling. And once it gets to 3, you are technically hypo. And, in some countries they will treat you at that level.

They tell you that with a TSH of under 10 - i.e. between the top of the range and ten - you might not need 'medication' - or to give it its correct name: thyroid hormone replacement -because they don't want to give it to you. Because they are so very, very ignorant about thyroid and have no idea the damage an under-active thyroid can do to the body as a whole.

What do you say to those people that say you don’t need to be on meds.

I say that if you have a failing thyroid you absolutely do need to be on thyroid hormone replacement. Why would they think you didn't? Can you tell me that?

I mean why should we be on meds?

Well, I thought I explained all that above.

What you call 'meds', levothyroxine, is the thyroid hormone T4. T4 is basically a storage hormone that doesn't do much until it is converted into T3, the active hormone. T3 is needed by every single cell in your body to function correctly. So, if you're thyroid is incapable of making enough for your needs, you have to take it exogenously.

But, I'm curious, why did you think you were taking levo? What did you think it was supposed to do?

I also didn’t know that thyroid can not recover once high

You mean once the TSH is high? TSH is not a thyroid hormone. It is a pituitary hormone. The pituitary controls the thyroid, so when it senses that there is not enough thyroid hormone in the blood, it produces more TSH to stimulate the thyroid to make more T4 and T3. If the thyroid cannot respond and raise T4 and T3 levels, the TSH just gets higher and higher, not the thyroid.

[Miss81 in reply to greygoose]

Well some people think with herbs you can raise the energy or with excercise and breathing techniques. Alternative things….but it is a slower process of one year etc….

I read what you explained and I wanted to ask this-I had a tsh that carried from 1.5 most months amd occasionally it will go to 3 then back to 1 amd very rarely to 5 then back to 1 within one month difference. How is this possible? How do you explain this? Why would the tsh vary monthly so drastically?

[greygoose in reply to Miss81]

Well, for a start, that's not a drastic variation. But many things can cause it to vary, including the time of day. Are your blood draws always before 9 am?

As for the herbs, exercise and breathing techniques raising energy... What energy? I don't know what you're talking about.

If you're talking about thyroid function, I've heard of some herbs that can have a negative effect on the thyroid. And over-exercising can affect thyroid status. But breathing techniques? Never heard of that. And never heard of anything that improves thyroid function, either. If these things worked, then we'd all know about it, and nobody would be taking thyroid hormone replacement. But it's just not the case.

but it is a slower process of one year etc….

You think one year is slow? It took me about ten years to find the right dose of the right thyroid hormone replacement to feel well.

Honestly, if something sounds too good to be true, then the odds are that it isn't true. There are no alternative things to restore thyroid function. It can't be done.

Yes, I know a lot of people claim that they've managed to 'cure' their thyroid by whatever means - and those means are many and varied - but it usually turns out that they have Hashi's, and their Hashi's is in 'remission' - which sometimes happens between a Hashi's 'hyper' swing and going back down to hypo. And it can sometimes last a long time. But, sooner or later, they will become hypo again. And, with a TSH of 5, you are hypo.

[Buddy195 Administrator in reply to Miss81]

It is ESSENTIAL you restart thyroid medication. You will be very unwell if you don’t. Please remember TSH should ALWAYS be under 2, with most members reporting they feel best when this drops significantly under 1. Please share thyroid blood tests 6-8 weeks after being on a consistent dose. Please also show ranges, as these can vary between laboratories. I would also advise an early morning blood test (ie before 9am) when TSH is highest.

[Miss81 in reply to Buddy195]

Well I am not unwell at all. But I think I should go back on the meds as I want to conceive otherwise in my case I wouldn’t bother as my tsh is at around 5 atm and I was hoping it would go back down in time but it hasn’t

[humanbean in reply to Miss81]

Even the NHS used to admit that TSH had to be under 2.5 for conception and throughout pregnancy. I'm not sure if they still do. It increases costs for them if they have to treat lots of women with low levels of thyroid hormones who want to conceive and carry a healthy pregnancy to term.

With a high TSH you are going to have a lower than healthy level of T4 and T3. And that will do two things :

1) Reduce your chances of conception.

2) Increase your risk of miscarriage.

Once you conceive, your offspring will rely on your thyroid hormones for about half of the pregnancy. Beyond that the fetus will have developed its own thyroid. Too little thyroid hormone from the mother during pregnancy could cause the child to be intellectually disabled, and could cause other disabilities.

[FallingInReverse]

Hi Miss81 I feel compelled to weigh in reading this. You have a couple years of posts/replies that are all very wise. You should read them again, and read every word above.

Many people take time to come around to the reality of an underactive thyroid.

But when you say you are TTC, and especially if you get pregnant, you will need to be eyes wide open, realize you need thyroid hormone replacement, and need it for life.

Yes, suboptimal thyroid hormone levels increases risk of miscarriage.

But also let’s say you do get pregnant. Before you even know you are pregnant, well before your first missed period, is a critical time period for the fetus’s brain development. If you have low free T4 during the first weeks and through the 1st trimester, as humanbean says, risk of intellectual and other disabilities is very high.

T4 (ie. Levothyroxine) is required for a healthy baby.

[Miss81 in reply to FallingInReverse]

Yes I am finding it difficult to come to this reality and often wonder why is my thyroid under active what causes this , would you know to explain?

[FallingInReverse in reply to Miss81]

The exact reasons people get autoimmune thyroid disease is not fully understood.

They say genetics is a contributor, and other things that can trigger or exacerbate are viruses, or bacteria, and we know that there is correlation (NOT causation) with other autoimmune diseases.

But not everyone with those factors get autoimmune thyroid issues. So no one truly knows with certainty why any of us do or don’t get it.

You are autoimmune Hashimotos and “in-range” is NOT euthyroid

Previous post notes elevated thyroid antibodies (TGab or TPOab, I can’t recall ) once. That means you have autoimmune thyroid issues. A single elevated antibody test confirms autoimmune causes. Antibodies fluctuate wildly over time, but it doesn’t matter. After a single positive test, there is no medical reason to test again.

TSH

You will also learn that “in range “ does NOT mean “healthy”, “normal”, “euthyroid.”

And when you look at this chart of the TSH distribution in actually healthy/euthyroid people:

web.archive.org/web/2004060...

You will see that your TSH of 5 - statistically says just about zero percent of the thyroid-healthy people have a TSH that high.

Even though you don’t feel “unwell” now, your bloods (TSH) are proof that your body is struggling to ask for even the very low T4 and T3 that your thyroid is making. Those very low T4 and T3 levels are not enough for essential functions. Did you tell us the ranges for those?

But the body is a resilient thing. It knows it doesn’t have enough thyroid hormone, and it is compensating without you even knowing it. And I know you say you feel well, but you would be shocked at the ways symptoms show up. Mine started with a headache every 4-6 weeks. That went on for a couple years. That was it. One headache once a month. During that time I got tired after running a marathon when my friends had energy for a beer. Yes! The was my thyroid depleted when my friends carried on. I ran tons of short races and two marathons, trained and made great improvements in my time. I felt great. It showed up as rosacea maybe two or three times a year when I was stressed at work. It showed up as a little faint humming in my ears when I was falling asleep.

That all went on for 5-7 years, symptoms diversified and increased in frequency. Then in August 2022 I was diagnosed.

I was then able to fix (almost) all of it basically with Levothyroxine.

I won’t repeat what others have said in this post and previous. I will say they are right. A ton of good, smart links provided.

We are here to answer any questions you have based on the personal and collective experience of fellow Hashis people. We are not doctors.

[Miss81 in reply to FallingInReverse]

Can I ask…did you have regular periods when you were not taking levothyroxin during your years ?

[FallingInReverse in reply to Miss81]

I did.

I had a child in my early thirties, in retrospect my hashis symptoms started when I was in my early 40s.

I did probably begin perimenopause maybe around the same time as those Hashis symptoms, I’d have to look back at the specific year, but even so, it was a jump from a regular 28 day cycle to a regular 25 day cycle. Only in the last month or two has there been variability in my cycle. Prob leading edge of menopause now at my age.

Our thyroid hormones and sex hormones certainly interact. You may indeed have issues there that are not thyroid related.

But regardless, you need to tackle low Free Ts no matter what. Nothing works quite right with low Free Ts. You will have to correct in any case.

Per other posts here - a full set of bloods including these things are all you need to know to take a fresh look and determine how/at what level to get back on Levo.

1) TSH

2) Free T3

3) Free T4

Plus these vitamins

4) ferritin

5) folate

6) B12

7)Vit D3

[Miss81 in reply to FallingInReverse]

Thanks for that information. Well, what is the cause of low T3s? And also My antibodies are within range, I have Subclinical hypo. And I read that hashimoto a does not affect menstruation much but subclinical affects the amh follecular count. And that even on thyroid meds the amh might not increase….any thoughts?

[FallingInReverse in reply to Miss81]

Quickly- low T3…

Shortest answer is - your autoimmune thyroid issue is pretty much why.

But more nuanced it’s any breakdown in the chain: Pituitary sends out Thyroid Stimulating Hormone (TSH), which stimulates the thyroid to produce T4 primarily (and small amounts of T3), and our bodies then convert the T4 to the more active, usable form T3.

Any break down in the chain can lead to low T3, including not being able to create enough T4 to convert in the first place… or not being able to convert the T4 they do have. Also less common some people don’t make enough TSH (NOT your issue) in the first place.

I think that generally the gist of it.

Edit:

Out of curiosity, can you share your most recent antibody tests results?

[Miss81 in reply to FallingInReverse]

TgAb antibodies are 13…so well within the range of “normal” and TPO is also fine in range below normal range. But that’s one lab, when I tested TPO in another lab it was just above 5, it was like 7 or something….so slightly above normal range

[FallingInReverse in reply to Miss81]

Fair enough : )

Although there’s something repeated here often that a certain percent of us never get elevated antibodies, and regardless the treatment is the same…thyroid hormone replacement.

[FallingInReverse in reply to Miss81]

Adding this link to posts on this board that include the term “TTC” if helpful to browse through:

healthunlocked.com/search/p...

[SlowDragon Administrator]

What are your vitamin D, folate, B12 and ferritin levels

Low vitamin levels are EXTREMELY common when hypo

when were these last tested

What vitamin supplements are you taking

Pregnancy guidelines

thyroiduk.org/having-a-baby/

NICE guidelines that if hypothyroid or subclinical you should see endocrinologist BEFORE TTC

cks.nice.org.uk/topics/hypo...

IMPORTANT See pages 7&8

btf-thyroid.org/Handlers/Do...

Also here - dose increase in levothyroxine as soon as pregnancy test confirms conception

cuh.nhs.uk/patient-informat...

thyroidpharmacist.com/artic...

Low ferritin, low thyroid levels and miscarriage

preventmiscarriage.com/iron...

Low iron and hypothyroid

endocrineweb.com/news/thyro...

Folate and B12 and Neural tube defects and autism

healthunlocked.com/thyroidu...

ec.bioscientifica.com/view/...