Levothyroxine dose change: Hello everyone! I had... - Thyroid UK

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Levothyroxine dose change

roukounasGK
roukounasGK

Hello everyone!

I had some issues and was testing increasing or decreasing my levo dosage (by myself, i know, stupid, but i was frustrated from my symptoms). This most probably resulted to my thyroid being way off.

So now im trying to get back on my previous dosage. But i now can't since any day i take my levo, severe palpitations and hypertension occur. Im not eveb able to sleep at night. If i take half pill or none at all the symptoms are much much less severe.

So to my question: i understand that my thyroid is now way off. How can I go back to my correct dosage?

Will i again get used to it after a few weeks if i stick to it even though the complications?

Or should i take the long way, and start with a dosage I feel comfortable with and gradually increase it?

Has this happened to anyone else?

17 Replies
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I think we're going to need a lot more detail to be able to help you. Like the doses you've been on, and some sort of time-line. And any blood test results and ranges you've got. :)

Hello greygoose, thanks for your assistance. Last time I was on a stable dose was around a month ago. I was on 0,7 mg weekly. My labs were

Tsh: 0,61

Ft4: 18,93

T3: 2,28

My endo, suggested that I decreased the dose to 0,6 weekly and check again. However during the month, there was a week i didn't get any levo, and others I took increased dosage ( around 0,8).

But after the week of not getting any levo, i decided that I would do more harm than good, so i tried to get back on 0,6 as my endo suggested.

However now i can't stand it. The most i can do is around 0,45- 0,5 a week. Anything more than that has me with hypertension and severe palpitations and chest pain, along with anxiety. This has never happened to me before. I have also heard multiple times, both from here and from my endo that a sudden change of dosage can cause such issues.

So my question is:

Has this happened to anyone else?

Should I take the long road and go with 0,45 which i can stand and gradually increase?

Or is it best that I take the 0,6 straight away(along with bp medication so that I can stand it) and my thyroid Will get used to this dosage?

I'm afraid that, as I said, we need the ranges for those results. Ranges vary from lab to lab, so we need the ranges that came with your results.

We tend to talk in mcg, here, because it's clearer, and about daily doses. So, I'm not sure what sort of dose 0.7 mg weekly would be daily. But, why did your endo suggest reducing?

It sounds rather like you're now under-medicated. Hyper-tension, palpitations and anxiety can all be hypo symptoms. But, they could also be because of the constant changing of dose - which really isn't a good thing because it confuses the body. You should be on a dose of levo constantly for six weeks before changing anything.

It's not a question of your thyroid getting used to anything. Your thyroid itself is somewhat out of the equation once you start thyroid hormone replacement (levo). It's your body that needs to get used to it. So, if you can tolerate whatever dose 0.45 mg is (I really have no idea what that is in daily mcg) then stick with that for six weeks, retest and increase again slowly - 25 mcg every six weeks. :)

greygoose
greygoose in reply to greygoose

Would 0.45 mg weekly be 64.28 mcg daily? That doesn't make much sense.

Hey,

The test results along with ranges are:

Tsh: 0,61. 0,3-4,5

Ft4: 18,93, 11,45-22,14

T3: 2,28, 1,06-3,31

Now regarding the dosage, mg is mcg times 1000. So the 0,45 mg is actually 450 mcg. And the 0,6 mg is 600 mcg. In sorry to confuse you, but here in my country there is only one pill of levo with 100 mcg. So any levo dosage is prescribed in weekly dosage and it is not stable per day. So for example, the 600mcg is prescribed as 1 pill of 100 mcg per day for 6 days, and none on the 7th. This is why I used the weekly dosage.

my problem is that I can't take more than 50 mcg per day. If i take 50mcg daily, i have a few issues, but i can stand them. If i take any more, all hell breaks loose, even on the same day. So I don't think my current issue is undermedication, however if i don't manage to take the dosage my endo gave me, I'm bound to have such issues.

So based on your answer, i assume that you recommend that I take the 50 mcg daily i can stand, and gradually increase to the suggested dosage, instead of taking the 100 mcg for 6 days, from start. Correct?

OK, I understand better, now. :) That is very confusing. So, you were on 700 mcg a week, and your endo wanted to reduce it to 600 mcg a week? Why? Your results were good - I take it those results were on 700 mcg a week? There was no reason to reduce. How did you feel on that dose?

Indeed these test results were on the 700 mcg weekly (i.e. 100 mcg daily). I was still having problems palpitations and such, so she decided to decrease my dosage. According to her, the optimal TSH range should be from 1- 2,5. Any deviation from this may cause symptoms.

Since this, i spent a week without any levo, and my symptoms subsided a lot. However when I came to her with it she was furious and said that I should not change my dosage so quickly. So i should start with 600 mcg weekly and if necessary, we Will further decrease it.

But now, if i take any daily dosage above 50mcg,i.e. half pill, my symptoms return tenfold. So actually, the most i can get and feel comfortable is 350 mcg a week and maybe a little more, up to 450.

OK, so that endo knows nothing about thyroid. It's not your TSH she should be looking at, it's your FT3. TSH is just a response to the Free levels, it doesn't cause symptoms. What causes symptoms is low T3 - symptoms including palpitations. There is no such thing as an 'optimal' TSH. It should be wherever you need it to be for you Frees to be in a place that makes you well.

No, I really don't think you should go back to 600 weekly. Now you've got down to 450, stay there for six weeks. Suddenly changing the dose by large amounts and changing too often are just asking for trouble. Stop on that dose for six weeks, then see how you feel and what your levels are. Don't change another thing for six weeks. :)

Hello there, I can't give you any advice unfortunately, but can tell you that every time I have a dose increase, even a small one, it results in severe anxiety, palpitations and chest pain. I've been told to increase to 50mcg daily after alternating 50/25mcg for 2 months but I was still under on my last blood test. 50mcg a day put me hyper in January and made me very ill and I have been trying to find the right balance since but forced to do things very slowly. Now, it feels like I am going hyper again as all the same symptoms have come back after a fairly settled spell. I always resent increasing the dose because it always upsets my system. I've got rather used to feeling tired and depressed and strangely prefer it to feeling wired up like I do now and I can't even sit down long enough to type this!

I have just had several nights of insomnia and tightness in my chest that remains throughout the day. My body is really sensitive to change. I don't know why I suffer such an increase in anxiety whenever I up the dose but I literally feel so on edge and jumpy and have a horrible squeezing in the centre of my ribs under the bust and can't even eat when I get like it. It feels like my heart is squashed in a bean can or something. I feel restricted and compressed but doctors say my heart is fine. Don't know if this is connected, but dose increases always give me a lot more burping especially first thing in a morning? You are not on your own with this.

Hope you feel better soon. ((hugs))

Thank you saltwater, this is exactly what im going through right now! You described it to the point! What i wanted to know though, is that it gets better right? If we have a lot of patience, eventually, the body does get used to this change, right?

I think for some of us who are more sensitive, it is a matter of doing everything very slowly and fine tuning until we get it right. I actually felt better alternating 25/50mcg and wanted to carry on doing this but doctors insist I have tried this and it still isn't working to increase my levels so have put me back on the 50mcg dose that they knew made me unwell earlier in the year.

He did say though, that what bothered me then may not bother me now and that I shouldn't be afraid to increase now as my body and needs have changed and that I should be able to tolerate it better having increased slowly by alternating for a while first. So I think, yes, we do get used to it so long as we allow ourselves time to adjust. Alternating is a good way of getting your body geared up slowly.

.

I am going to keep trying with the increase so long as things don't get worse. What helps me get through this is just to keep busy, don't let it get in your head or focus too much on your symptoms as anxiety will add 50% to all your symptoms and you won't be able to properly assess how you are doing.

The extra dose seems to give me loads of excess nervous energy and my heart rate increases, thumps and skips, making me feel on edge all the time. I am now about 10 days into the new dose and holding my own, however unpleasant. I can say honestly, that I don't feel as bad as I did in January when I increased by the same amount. I was ready to go to ER then and I don't feel like I am getting worse as each day passes, so I think I am getting used to the increase but I still feel better when I am under somehow.

Lalatoot
Lalatoot in reply to Saltwater

I found I could not tolerate levothyroxine in one dose. It was too much in one go. I have always therefore split my dose and currently take 50mcg at 6am and 50mcg at 5pm.

roukounasGK
roukounasGK in reply to Lalatoot

Thank you very very much for the suggestion lalatoot!

I have also seen this recommendation elsewhere, but i haven't spoken to a person that has actually done it. Does it make any difference?

Lalatoot
Lalatoot in reply to roukounasGK

Well it does to me! I worked my way slowly up to 50mcg as levo made me feel sick. Thereafter I started taking any increase as a second dose and worked my way up to 50mcg on the second dose. It was the end that suggested 2 doses. You can time the doses as you wish. I originally took the 2nd dose at bedtime but by taking between 4pm and 5pm it means I can eat out later and not need to worry about an empty stomach for the tabs.

roukounasGK
roukounasGK in reply to Lalatoot

Thank you very very much for the suggestion! I will try it definitely!

Hi there. I just wanted to follow up what we were discussing a few days ago. I wanted to let you know that I have stuck with the dose increase for more than 2 weeks now and after initially feeling appallingly dreadful on it, I feel I am coming out the other side. Things have settled and I feel more normal this week, (whatever that is!)

I hope you are starting to see an improvement and things are settling for you. For some people, once you tinker with the doses, it can really get out of whack for a while but there is hope. Slow and steady wins the race!

All the best. x

Hey saltwater,

Thanks for following up on our discussion.

First of all, when people start to feel better, they tend to get on with their lives (not that it is a bad thing) and leave all of the discussion they had in the past. So i really, REALLY appreciate that you took some time and came back, even though you feel better, to inform me.

Secondly, it gives me much hope that i will get better if i stick to the correct dose even if it does not seem so at first.

So i double thank you for coming back! I sincerely hope that you get 100% normal, and completely forget these rough times!

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