Switched to Levo at Night - Insomnia!

[FancyPants54]

I take just 25 Levo a day. I don't have current bloods to quote, but it does seem likely that I only need a small amount.

At Christmas I switched to 1/2 grain Nature Thryoid. I was very excited to see if it would give me better energy and remove the depression that seemed to set in within 1/2hr of taking my Levo every morning.

The NDT was not a success. The first day I felt nice and calm and positive but from then on I got more and more anxious, panicked and jittery. I thought at first I just needed to get used to it. But it was hopeless. I could barely get through a day and practically mainlined valerian tablets to try to calm down.

I could not carry on like that so I stopped and switched back to 25 Levo. So far no return of the depression symptom, which is nice. But it doesn't give me much energy. So I read up and tried switching to taking it at bedtime. Two things happened. I felt a lot better in the morning and had better energy. BUT I could not sleep. At all. For a week I kept that up until I felt zombied during the day and had to stop and go back to mornings.

It's such a low dose I am very surprised it made me unable to sleep. Has this happened to anyone else? Any suggestions as to how to overcome it? I really did feel better taking it at night until the sleep issue became unbearable. I just never feel as if I sleep well. It's as if I am blacked out only, not resting and recuperating or repairing.

I do have a T3 stash. Slightly out of date, but still it's T3. I'm wondering if I could use a tiny amount of that somewhere to aid the sleep situation. Any thoughts?

Ferritin levels were a bit low late autumn - been supplementing for a while now.

Active B12 test came back good.

Vitamin D was a bit low - been supplementing for a while again. It's nearly time to retest the iron and Vit D, so no new results currently available but they usually come up OK with supplements.

[Clutter]

FancyPants54,

What are your most recent thyroid results on 25mcg?

[FancyPants54 in reply to Clutter]

I don't have recent results because we've been changing things.

I'm not optimal, but it's not terrible. I do have adrenal issues that I'm trying to sort so I'm not likely to become optimal at this stage. I just don't understand why taking my dose at night completely stopped me being able to sleep. I would like to be able to work around that and get better sleep.

[Clutter in reply to FancyPants54]

FancyPants54,

I'd say the first thing to do is to check that 25mcg is an adequate dose. Without knowing what your levels are people can advise whether taking a little T3 will be helpful or not.

I really don't know why taking Levothyroxine at night would affect your sleep. It usually takes a few days to absorb after taking a tablet.

[FancyPants54 in reply to Clutter]

I've been taking it for a while so I already have it in my system. The thing is, I can often feel the effects of taking the tablet within half an hour. I know it's not supposed to work like that but it does.

[Clutter in reply to FancyPants54]

FancyPants54,

I know, others have said they feel it pretty much straight away too.

[FancyPants54 in reply to Clutter]

I always have. At first it was nice, but from autumn onward the reaction was the wrong way, and within 1/2hr I felt really depressed and exhausted. That's why I tried it at night, but then, I woke up as soon as I took it. Now, taking it in the morning this week and last, I've not had any detrimental effects but it's not giving me any energy.

The last time I felt great was in November, on the one day of the week I don't take any Levo at all. I was away, it was freezing and really windy but I was on the coast and I could have walked and walked. I was laughing and energetic all day. So I tried not to take any, thinking I'd just stop. I lasted 4 days, each one getting worse and more anxious until I caved in and took more.

My hormone doctor said I should wean off it altogether. But then in the next breath said "but you weren't right before" and she is right about that. Hence me not actually weaning yet but trying the lower dose again. It all seems a bit bizarre to me.

[Clutter in reply to FancyPants54]

FancyPants54,

Levothyroxine doesn't need weaning off. You can stop it dead if you don't want to take it but, as you found, you may feel very hypothyroid without it after a few days.

Have you tried other makes of Levothyroxine to see whether the adverse effects improve?

[FancyPants54 in reply to Clutter]

I have tried 3 of them yes. Teva was horrible! Wockhart seems best.

The idea of weaning it off was to reduce the impact of the exogenous hormone and let my thyroid come back up to whatever speed it's currently capable of.

[Clutter in reply to FancyPants54]

FancyPants54,

Wockhardt has few fillers than the others.

Presumably TSH was elevated for you to be prescribed Levothyroxine in the first place? Thyroid function rarely improves and tends to decrease with age so I doubt you'll find any improvement if you stop Levothyroxine. There will be very little of exogenous Levothyroxine left in your system a couple of weeks after your last dose and probably none after 4 weeks.

[FancyPants54 in reply to Clutter]

I don't know. I'm wondering if I'm really hypo at all or something else causes my TSH to rise a bit now and then. This time last year it was just over 1. Then in the summer it went to 4.5 but with almost good T4 and T3. The worry for my doctor has been that we could easily push my T4 too high, which is why NDT was suggested.

I will see what my next bloods show in a few weeks time. I've been working on mineral levels since October time so that should be about right by now.

Do you think the fact that I feel better on the one day a week I don't take any Levo shows that I'm slightly overmedicated even on 25mcg?

[Clutter in reply to FancyPants54]

Fancypants54,

No, that could just mean that the Levothyroxine doesn't suit especially as you said you felt awful after 4 days off Levothyroxine.

What were your recent thyroid results and ranges?

[SlowDragon Administrator]

Do you have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies?

If so are you on strictly gluten free diet?

If supplementing B12 are high also taking a good vitamin B complex?

[FancyPants54 in reply to SlowDragon]

I don't currently appear to have Hashimoto's (haven't shown up antibodies in around 5 years of thyroid tests).

I take a vitamin B complex as well as the B12 yes.

[silverfox7]

You are just starting out and 25 is a low starting dose. I hope you have been told that after 6 weeks you should be retested? This low dose is really just to get your body used to it and every new dosewe take takes up to 6 weeks to fully get into your body then you need to be rested and you will probably need adose increase which as done in 25 mcgs. Then after another 6 weeks test again and increase if results say you should. Keep to this cycle until bloodsshoe you are taking the correct dose for you. Yes it can take a long time to get there but things in the Thyroid world work very slowly and it's foolish to try and speed it up! Patience is needed.

[FancyPants54 in reply to silverfox7]

No, I'm not just starting out. I've been taking it since June 2017 and my T3 and T4 results last autumn were good on it. Where they should be almost, with T3 a little below where we wanted it. We increased to taking 25mcg and 50mcg alternate days and retested in December, again T4 and T3 levels were pretty good but TSH was still up a bit and I don't have much energy, hence trying to switch to NDT (didn't work, so anxious I think it was too much for me even at 1/2 grain) and so now I'm back to 25mcg a day to stabilise and will test again after 6 weeks. I just wanted to take it at night. I don't understand why it knocked my sleep into touch.

I don't seem to be a normal case. I think something else is going on to be honest. Something that is slowing my thyroid down and causing my loss of energy and weight gain.

[SilverAvocado]

25mcg is a very low dose, so you definitely need some results to get a picture of what's going on. Is it possible you are not hypothyroid at all?

It sounds like you may have been overmedicated on the half grain. Which would make sense, because that is higher than your 25mcg of T4. Half a grain of NDT is equiv of about 35-50mcg of T4 (depending on how much stronger you assume T3 is).

My guess from what you've told us is that EITHER

1) You were never hypothyroid in the first place, so the Levothyroxine is a bit much for you.

2) You're desperately undermedicated, and this is giving you a lot of problems.

You need blood tests to determine which of the two it is!

[FancyPants54 in reply to SilverAvocado]

I'm certainly not very hypo. But for a few years now I've had no energy and gained a lot of weight. My TSH was 4.5 in June last year but T4 and T3 were not far out, hence we tried the Levo. It worked at first. I was able to get back on a bike in August. It was wonderful! But then I slipped a bit. Still better than before Levo. But I seem very quick to show signs of over medication. I certainly think that is what happened with the 1/2 grain of NDT.

I'm not due another test for a few weeks yet. I need to retest now I've come back to the Levo and at a slightly lower dose. At the time of switching to NDT I was taking 25mcg/50mcg every other day and having 1 day a week off. I'd got to the point when the day off was my best day of the week.

So to answer your guesses, 1) is certainly possible and 2) isn't looking that likely. My TSH might be up a bit for some other reason I suppose.

I could do with seeing a functional doctor because my hormone doctor is about to give up and I'm not sure what to do next.

[SilverAvocado in reply to FancyPants54]

It's quite common for people to feel a bit better on a day they don't take Levo. It doesn't seem related to over or under medication.

4.5 is definitely a high enough TSH to have symptoms, but it's not a super high one. It would be great to know the freeT4 and freeT3 as well, because these would give a better picture of what's going on.

Your description of biking sounds like a common pattern - at first you had a boost (your body could tell some hormone replacement was coming in, so gave you more energy), but then after a few weeks or months that boost wears off (it turns out the replacement dose wasn't high enough to make a huge difference). What should happen is that you get a blood test at about 6 weeks, and an adjustment to dose. Usually if you've started on 25 or 50mcg you will need an increase.

It sounds like tons of different things have been thrown at you over a very short period. But what really needs to happen is a blood test after 6 weeks on a specific dose, and evaluating how that does is working for you. It's only when you've got perfect blood tests AND still feel unwell that you need to look for other causes.

It sounds like you had nice looking bloods at one point, on T4 and T3? If so why did you switch to NDT? I think you need to lay the whole journey out clearly, including every blood test you've had.

[silverfox7]

Just something else to consider is what else you are doing. TSH can rise through picking up a virus and even though you can have a virus and not be aware of it it's unlikely that situation would be continuous so other things to look at-if you look on the Thyroid Uk site who run this forum then you will find things to do and probably more importantly things not to do. Generally when the right time to take your medication and what not to take near it as it can hinder absorption. You could be doing something wrong and don't realise especially as doctors aren't always aware to give you the correct advice. At least if you find you are doing all correct things then it at least helps to know that. I'm not surprised NDT didn't work for you as you need to have everything else in place to get that to happen. I think you haven't given enough time to improve your vits and mineral so some of those may still not be high enough. It took me almost twice as long as you to get mine right though it does depend how low we are to start with.