Day or night: I’ve had a lot of trouble with my... - Thyroid UK

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Day or night

Coachgeorge profile image
24 Replies

I’ve had a lot of trouble with my thyroid meds. Dr. just took me off of them for two days. I’m supposed to start again tomorrow. When I take them in the morning, I’m symptomatic all day but sleep well. My evenings have always been better, not great but better. I’m wondering if I should start taking them before bed? Maybe, I could sleep through the symptoms and have better days. She’s reduced my T4 with the goal of increasing t3 soon. That should hopefully resolve my problems but I wondering if the nighttime dosing might help me, too? Or, am I just crazy? Thanks!

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Coachgeorge profile image
Coachgeorge
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24 Replies
SeasideSusie profile image
SeasideSusieRemembering

Some people find that nighttime dosing works better for them. Give it a try, you've nothing to lose :)

Coachgeorge profile image
Coachgeorge in reply to SeasideSusie

Thank you!!!

greygoose profile image
greygoose

I despair with your doctor. Keep taking you off the hormone is going to make things worse, not better, because you then have to get used to taking them all over again. What she should be doing is finding out why you don't tolerate them very well. And, as you feel better in the evenings that could possibly point to low cortisol. When is she going to test that?

It might be better to take your hormone before bed, but you'll only know if you try. :)

Coachgeorge profile image
Coachgeorge in reply to greygoose

I had hope to get the endocrinologist to look at cortisol but if you saw my other post about what he ordered, that’s doubtful. However, I’m still going to try.

I think she took me off because it was too much. I was able to function yesterday afternoon and this morning. I’m hoping when I start back with the lower dose, I won’t have as many problems. I hear you saying otherwise. Mistake?

greygoose profile image
greygoose in reply to Coachgeorge

I don't know. It's all just such a mess. And, why lower your levo before she increases the T3? They could both be done at the same time. That's the way most people do it.

Coachgeorge profile image
Coachgeorge in reply to greygoose

I just don’t know what to do anymore

greygoose profile image
greygoose in reply to Coachgeorge

Nor does your doctor, and that's the problem.

Coachgeorge profile image
Coachgeorge in reply to greygoose

I get conflicting information. Some folks say I should change t3 and T4 at the same time. Others say only change one at a time. It’s just so isolating and scary. I feel helpless anymore. I just want some kind of life.

greygoose profile image
greygoose in reply to Coachgeorge

When they say only change one at a time, they mean when you are reducing or increasing both T4 and T3. If you are reducing T4 and increasing T3 they can both be done at the same time.

Coachgeorge profile image
Coachgeorge in reply to greygoose

Sorry, I’m confused. Only do one at a time if both are reducing? Like if I’m going from 75 to 50 and 5 to 2.5? Then that’s only one at a time? But if I’m decreasing levo through a weekly method, I can also increase t3 to 7.5 at the same time?

greygoose profile image
greygoose in reply to Coachgeorge

You cannot reduce levo through a weekly method. Levo can only be reduced by 25 mcg maximum every six weeks.

T3 should only be increased by 5/6.25 mcg maximum every two weeks.

So, you could reduce your 75 mcg T4 to 50 mcg AND increase your 5 mcg T3 to 10 mcg at the same time.

After that, you cannot decrease your levo/T4 again until six weeks later, but you can increase your T3 by 5 mcg maximum every two weeks.

Coachgeorge profile image
Coachgeorge in reply to greygoose

Maybe I wasn’t clear when I said weekly or maybe I was and it’s a bad decision. I’m taking 75 mcg 6 days a week instead of 7 which reduces me by about 10-11 mcg a week. I was going to add more t3 in a week.

greygoose profile image
greygoose in reply to Coachgeorge

Sorry, that's not what I understood at all! lol So, what do you take on the 7th day?

If the answer to that is 'nothing', then I find that a very strange way of going about things, but I don't know if it's good or bad. I'd be inclined to think it's not good, and that you would be better off taking at least something every day. Why not three days of 50 and four days of 75? That would come to the same total. Because it doesn't reduce you by 11 mcg a week, it reduces you by 75 mcg a week. Or did you mean 7 mcg a day?

But, I still don't know why you don't increase the T3 at the same time as you reduce the T4. And, I don't actually think that such a small reduction is even worth it. Why are you doing that?

SlowDragon profile image
SlowDragonAdministrator

Feeling better in evening suggests cortisol may be a problem

Low cortisol is common when under medicated

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water . This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you did your test on Sept 23rd?

Your results on 75mcg Levothyroxine plus 5mcg T3 showed low FT3 and FT4 good

Most people need 2 or 3 small doses of T3 per day

Are you adding 2nd 5mcg dose of T3?

Personally I don't think you need to alter Levothyroxine dose....or if you do....only by a tiny reduction. Definitely not by 25mcg. Perhaps 12.5mcg

Perhaps just try taking Levothyroxine at bedtime. Many over us find it works better than taking in morning

Coachgeorge profile image
Coachgeorge

It is how I did my test September 23rd. My labs do look good, with the exception of t3, but I never do well when I’m in the upper range of T4. Haven’t added a dose of t3, as we discussed yesterday I should lower levo for a week before increasing t3. I was on75 levo 7 days a week. Been reduced to 75 6 days a week. So it’s about 10-11 mcg decrease by week. Going to give evening meds a shot. Thank you

greygoose profile image
greygoose in reply to Coachgeorge

Well, you'll only know if it's going to work by trying it. I understand why you're reducing your levo, of course. But, I cannot see that such a miniscule reduction is going to do much.

And, I cannot see the sense in reducing your levo for a week before increasing the T3. I just don't see why you can't do both at the same time.

Coachgeorge profile image
Coachgeorge in reply to greygoose

I’m not sure I understand anything either. I don’t know what to do

greygoose profile image
greygoose in reply to Coachgeorge

I think your doctor is floundering and desperate, and has been for some time. She's just flailing around wildly to find something new to try. If it were me, I'd go with her on the reduction of T4, but insist on increasing the T3 at the same time, and not waiting a week.

BUT, I would also start stamping my foot about getting that cortisol tested. Why is she holding off on that when it's looking more and more like low cortisol is the problem?

Coachgeorge profile image
Coachgeorge in reply to greygoose

I’m getting my blood drawn as a write this. Waiting in the lobby very weak with my heart rate elevated. Not sure I can stay. I haven’t had my t3 today. Going to endo next week. Plan to insist with him. Hope I make it this morning. Probably wasn’t a good idea to drive

greygoose profile image
greygoose in reply to Coachgeorge

Delaying your T3 by a couple of hours shouldn't have that much effect. You still have some in your cells, where it counts. So, best not to dwell on it. :)

Coachgeorge profile image
Coachgeorge in reply to greygoose

Trying, pretty weak. Thank you

Coachgeorge profile image
Coachgeorge

I’m reducing because I’m at the top of the range for T4. Whenever I’m that high I shake all over and am not able to function. We tried 50 but I was very weak and my tsh went from 1.84 to4.84. Also tried increasing t3 while I was on 50 and the shakes started again. We talked about alternating 50 and 75 but ended with 75 6 days a week. If 75 times 7 is 525 a week and I go to 75 times 6 days that’s 450. Guess I did mean 75 a week. Not writing or thinking clearly. I suspect she was concerned about my ability right now to get things right. I’m easily confused. I’ve done something similar in the past, skipping one day a week. Are you thinking I’ve blown it again? I see the endo next week.

Mamapea1 profile image
Mamapea1

Coachgeorge ~ the reason that SlowDragon and greygoose have not responded to your last 2 replies is because they weren't notified of them...you forgot to click onto the blue reply button beneath their previous reply. Don't worry ~ we all do these things ~ I just didn't want you to think you were being ignored after you'd taken time and energy to write it out👍

Coachgeorge profile image
Coachgeorge in reply to Mamapea1

Thank you

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