can i just stop levothyroxine after 3 months

[morcan54]

i am having the worse time of my life i had very hbp that wouldent go down with medication irrecular heart beats confusion irriability anger crying wanting to kill my self tightness on chest confusion nbut a lot of anger anxiety not able to breath and i am beter without this medication ,i feel as if i am going crazy . can i just stop?

[helvella Administrator Thyroid UK]

Over the years we have had quite a number of members report their experiences of just stopping levothyroxine.

It is difficult to speak of how many said what, but one of the most common tales can be summed up as:

Stopped levothyroxine.

Next day, felt better.

Day after, even better. Issues seem to be resolving. So glad I did this.

A few days later, all the symptoms from before starting levothyroxine have started to return. And they are worse than ever.

Several months later, gradually improving. It took me so long to get over stopping levothyroxine. I should never have stopped like that. Really, I needed [ select one of these ] a small increase in dose/a small reduction in dose/liothyronine (T3) added/other issues treated.

However, we have had some who have had more positive experiences. It is extremely difficult to be sure. Especially as we are mostly in a different position to you and in a different healthcare system.

I'm just trying to suggest that numerous people have jumped at stopping levothyroxine and it has all too often not been the best choice.

And do remember, we here are just patients. Not trained. We only have our own experiences to draw on.

You obviously are having much difficulty in getting treated as you need and I wish you well.

[morcan54 in reply to helvella]

is it best to gradualy sto or just stop i feel so bad i cant continue like this i feel as if my heart is going to stop thanks for sharing your expirience

[helvella Administrator Thyroid UK in reply to morcan54]

I think you need a real doctor to see you and advise.

High heart rate can be due to excessive thyroid hormone. But there is also an association with low thyroid hormone - and with entirely non thyroid issues.

I personally have had a very high heart rate (between 44 and 194 in the last month and 100% of the time in atrial fibrillation). But I really do NOT know if it is related to thyroid hormone levels. Reducing does not help me.

But you are a different person with a different body. The issues you are having are obviously unpleasant and worrying.

Stopping for a day or two is unlikely to make a big difference but you might feel better. And you might feel that at least you tried. However, I have pointed out that that route does not always end well. And more than a couple of days sees you going into a situation in which your thyroid hormone levels drop and it becomes difficult to restore them.

You really need a trained doctor who can do things like look at an ECG and try to understand what is happening. Way beyond what we can do.

[Jaydee1507 Administrator]

I would just echo all the Helvella has said about members who have stopped levo and in time have come to regret it.

Looking at your results that you posted a few weeks ago, your FT3 is low in range and that can cause all sorts of issues. The answer is not to stop treatment but to continue suffering for a while, in time get more dose increases and perhaps even add some T3.

Getting closer to your optimal treatment level is the answer.

Its unfortunate that there is such a slow recovery time for hypothyridism

[HealthStarDust]

I am beginning to wonder if for some of us by taking levothyroxine especially for a considerable amount of time, our body somehow becomes dependent on so it is impossible to get off. Certainly I have read that some people when coming off levothyroxine TSH does not appear to go back to its pretreatment stay and may start quite low ish. Not that I have any idea what that means!

[Sparklingsunshine in reply to HealthStarDust]

I think being on Levo /T3 or NDT sends the thyroid of some people into a dormant state, maybe akin to the insulin producing capabilities of the pancreas of people with diabetes. And a very sleepy, sluggish thyroid is very reluctant to get its a*$e in gear and start doing its job.

I was worried about my NHS blood test for thyroid in December, due to very low TSH and dropped my Levo massively for about a month before the test. My levels of FT4 and FT3 plummeted and were both well below range but my TSH was only 0.33, so only just in range 0.27-4.2. So clearly my TSH wasn't reflecting my very low thyroid hormone levels.

[FallingInReverse in reply to Sparklingsunshine]

I recall one of the smart people on this forum pointing out how slow TSH is to react.,. Whereas we are better versed at watching our Ts move up and down due to our doses. So I don’t know how fast it does move, but it’s not days or weeks by any stretch.

HSD - taking exogenous hormones, I’ve read here someone use the phrase, puts our thyroid to sleep. But saying that “we become dependent on Levo” to the point where over time we can’t get off it… it’s kind of the other way around. Our thyroid failed, and the Levo replaces it. We are dependent on having thyroid hormone. Not the Levo. We can’t go off Levo because our thyroid would never make enough no matter what.

[HealthStarDust in reply to FallingInReverse]

I remain open minded about all things thyroid including impact of treatment, for one very simple reason… there is no global standardisation of how to treat hypothyroidism for all. Thyroid knowledge and treatment is still a grotesquely under researched area in proportion to its impact certainly, and compared to other diseases in my view. The reason we are all so different in our reactions is still one big X factor.

And, people do stop taking thyroid replacement. I can not attest to how they have got on, but as we all know, everyone is different.

The whole ‘sleep’ thing… yes, I’ve often read that too. I am more wondering how long this impact lasts for once someone stops treatment and why in view of the original post.

Knowledge is ever evolving. At one point the world was flat apparently.

[birkie in reply to HealthStarDust]

Hi HealthStarDust❤️

Lab rat no 1 here😂 by that I mean I've been without any thyroid medication since January 31st due to an incompetent endocrinologist, who just wouldn't listen to me in relation to my intolorences to thyroid medication, and worst of all I have no thyroid 😱)

She took me off T3 (which I had an intolorence to, but put me on teva t4 which was far worse, I'd tried it twice before and my T3 always hit the floor.

So how do I feel without any thyroid medication?

Well at the moment my gastric symptoms have eased to my normal colitis as it was before starting thyroid medication, the metalic taste I get as gone, headache every morning.. Gone bad body pain gone.. But in this few weeks I've had bouts of tiredness , struggling to wake, in the last 10 days I had blood in my urine with kidney pain, which as now gone but this could be linked to my diagnosis of primary hyperparathyroidism, today I'm up and about already and feel OK, I'm not going to lie I certainly could feel better, and I'm hoping the new thyroid medication will help with that 🤞

I'm checking my blood pressure and heart rate as instructed, I've managed to get some new thyroid hormone, although I can't start on it until I have some thyroid blood work done .

As per my surgery can't do that blood work until April 8th🙄

But my parathyroid surgeon in Liverpool says this will help determine if a mass of (14 x 7 x 21 mm) found in my right thyroid bed and thyroglossal tract is producing any thyroid hormone as its been found to be vascular, this mass was found on an F18 pet scan this year it appears to have grown since full thyroidectomy in 2019. 😱

Be interesting to see what my thyroid bloods are now👍

[HealthStarDust in reply to birkie]

full thyroidectomy in 2019

And you’ve been off thyroid treatment since January this year, nearly 3 months? Have I understood that right?

[birkie in reply to HealthStarDust]

Stopped thyroid medication on January 31st 2024 be 2 months at the end of this month👍

[HealthStarDust in reply to Sparklingsunshine]

My goodness. Thank you so much for sharing this. It’s very important for other sufferers like me to know.

I agree. I also think there is some mechanism in its action (any thyroid replacement) that somehow puts our own thyroid to sleep. And, for some it may not ever wake up. Hence, a dependency issue needs researching.

[Sparklingsunshine in reply to HealthStarDust]

I've always wondered as I'm sure many of us have, if we really need to take Levo or other thyroid replacement, were we misdiagnosed, did we start taking them too soon, could our thyroid take over and produce the necessary hormones in the right amount.

I've heard of patients having Levo stopped by doctors to see if their thyroid could recover. I must admit though I was pretty shocked at how quickly my frees had dropped, my FT4 got to 7, (12-22) and FT3 was 2.7 (3.1-6.8). That was a month of dropping to 50mcg, so not even cold turkey. I wont be attempting it again 🤣

[FallingInReverse in reply to HealthStarDust]

I recently went down a rabbit hole researching this idea.

Because my 17 year old has terrible Free Ts an ambiguously high TSH and no antibodies.

So I asked myself - I should just put her on Levo… she can alway wean off in a few years once she’s through whatever teenage hormonal volatility she’s going through.

In my research - everything one reads (for NON Autoimmune) is that Levo puts it to sleep and going off Levo slowly wakes it up.

Everything I found said just that. But as I dug and dug a little I found enough that hinted at that idea - everyone is different. Yes it typically comes back to produce hormones, BUT of course there’s uncertainty in everything blah blah blah.

So even though we read - to the point above if someone was mistakenly put on Levo, and want to see if they can just go off - that it’s possible.

Yeah - when it came to my own daughter I wasn’t sure enough to risk years of Levo for what might just be vitamin deficiencies or maybe something else temporary.

Who knows!

[helvella Administrator Thyroid UK in reply to FallingInReverse]

As a matter of simple logic, disregarding all practicalities including (especially?) cost, my mind has often tried to go down the route of using TSH as a medicine. This reply is entirely a fantasy but tries to think through the issues.

Imagine a person is taking thyroid hormone (let's ignore the details of whether T4, T3 or a combination), and wants to see if their thyroid can work. But their TSH is low enough that it is hardly stimulating their thyroid.

What happens if you give them some TSH and see whether the thyroid reacts?

(Technically it is possible to manufacture human compatible TSH using gene technologies.)

If the thyroid does not react, then give up and resign to taking thyroid hormones.

If the thyroid does react by producing thyroid hormones, check what levels they are at and adjust their thyroid hormone doses and/or increase the TSH dose.

Once they are producing enough of their own thyroid hormones that they no longer need to take any, then extremely slowly reduce the TSH dosing and see if their pituitary will work well enough to completely stop that as well.

However, what if their pituitary does not respond and never produces enough TSH? Maybe this was one of the causes of their hypothyroidism in the first place? Some degree of secondary/central hypothyroidism. Do you keep dosing with TSH? Or revert to dosing with thyroid hormones?

[HealthStarDust in reply to FallingInReverse]

All we have is to make considered choices. If we do that, mindful of the things that could go wrong and how to recognise them and act on it, we can hopefully not go far wrong.

[SlowDragon Administrator]

previous post shows poor conversion of Ft4 to Ft3

healthunlocked.com/thyroidu...

Have you tried splitting your dose Levo as 2 doses…..50mcg in morning and 25mcg at bedtime (or vice versa)

Improving low vitamin levels essential

How much vitamin D are you taking

Are you taking it at least 4 hours away from levothyroxine

Are you taking a separate magnesium supplement too in afternoon or evening (also at least 4 hours away from levothyroxine)

Have you started daily B12 supplement and added a vitamin B complex a week later

Has dr tested ferritin levels

[Jemjet]

could this be a conversion problem t4to t3 build up of Levo ?