Update on lowering T4

[Wired123]

Following on from my previous post and the results of my last test (which I have added to this post) the advice from my Endo was to drop my T4 to 125mcg (alternate 150mcg and 100mcg) from 150mcg and continue with 2 daily doses of 5mcg each (one with T4 in the morning and one around 2.30).

I thought 125mcg was too big a drop so I’ve instead adopted a 150, 150, 100 regime which equates to daily 133mcg. Some on this forum agreed that 125mcg would be too big a drop.

After 3 weeks of 133mcg I’m finding a lot of symptoms coming back including difficulty waking in the morning, constipation and most annoyingly brain fog is back.

I had to take half a day off work yesterday as I didn’t feel very good at all.

Any advice would be most appreciated.

[SeasideSusie Remembering]

Dk123

When did you take your last doses of Levo and T3 before the test(s)?

[Wired123 in reply to SeasideSusie]

As per Endo’s protocol, T4 about 24 hours, T3 was taken in the morning of the test 5 hours prior to test.

Whilst this is not the recommended way on this forum, it is the Endo’s protocol as he likes to see the T3 peak which occurs 4-5 hours after the dose of T3 is taken.

He’s specifically told me to do it this way again next time but ive also requested we check T4 and TSH at 9am on the same day so we have a decent comparator.

[SeasideSusie Remembering in reply to Wired123]

Dk123

It's difficult to compare the two sets of results as conditions weren't the same.

It's hard to understand why you should be experiencing those symptoms with just a 12.5mcg decrease in Levo but it's only 2 weeks since the change in dose and your hormone levels wont have stabilised yet.

[Wired123 in reply to SeasideSusie]

Sorry it was a typo, been 3 weeks since the change in dose.

I’ve emailed the Endo as well so let’s see what he says.

My heart rate also jumps to over 100bpm at times despite being sat watching mundane TV which is strange.

[Arabella33 in reply to Wired123]

Hello Dk123, I have a similar problem with my heart rate rising whilst resting spontaneously. It can be 55 rating then shoot up to 90-100. However I’ve worked it out to be related to eating certain starchy carbs such as potato, bread and oats (I seem to be on with rice which is my least favourite). I’m not sure why this is but it’s common apparently. Also, t3 makes the heart sensitive to adrenaline and caffeine for some individuals. (Dr Lowe) I’m investigating as to whether this is temporary which believe it is but need further clarification on this. shaws can you clarify further on this? I think that if you hold the dose for a few weeks this sensitivity goes away. Hope that helps

[shaws in reply to Arabella33]

If you click on my name you can see my thyroid history.

I do know however that doctors in the UK can no longer prescribe T3 but an endocrinologist can and they are the only ones in the UK permitted to do so. Many are now reluctant due to the sky-high cost.

I felt so well that I stopped T4 and took T3 only. At present it is very difficult to get a prescription - like trying to get gold out of coal dust.

Palpitations for any unknown reason is quite scary, especially when you've not had them before. Mine always seemed to happen in the middle of the night and without warning.

When the endocrinologist added T3 to T4, palpitations reduced but on T3 alone I have had no more palpitations. Didn't need to consult the cardiologist againo or endocrinologist.

The following is a link to a old post and cursor down to Clutter and there's a list of Dr Lowe's links.

healthunlocked.com/thyroidu...

[jrbarnes]

My results are nearly identical to your results on T4 only. Higher T4, lower T3 with a TSH still in mid 1 range. Seven days ago I had to reduce my Levo by 12.5 mcg with 10mcg of T3. I'm feeling that 10mcg of T3 is not enough to compensate for the drop and I've been off work because of it. Seeing the T3 peak isn't much helpful if you feel poorly in the morning. It would seem the endo would want to know how the levels look in the morning after a several hour gap. I'm in the same position as yourself so I'm watching for answers. Would your endo be open to increasing your T3? I'm currently sticking with the 12.5mcg decrease in T4 and trying to increase the T3 but if that doesn't work I may have to look at alternating T4 doses with T3. I'm feeling the body weakness, fatigue, painful wrists and fingers.

[Wired123 in reply to jrbarnes]

Hi thanks for your comments. I’m a little confused about what you’re trying to say, my brain is really tired!

Just to clarify my last blood tests on T4 + T3 I felt more or less ok, just some niggling symptoms.

So the doctor on the basis of over range T4 and suppressed TSH asked me to drop T4 slightly.

But I don’t feel good and it seems my heart rate is higher despite taking LESS hormone which seems counter-intuitive.

My Endo’s advice is now to increase T4 back to 150mcg which is really leading to me questioning his credibility as he was so convinced a few weeks ago that I was over medicated.

As for my Endo’s testing protocol he always wants to test at 1pm to see the T3 peak levels 4-5 hours after taking it.

Why have your lowered your T4 btw? Did you up T3 and lower T4 at the same time?

My Endo only likes to do one thing at a time, hence he will move one thing and see what happens.

[jrbarnes in reply to Wired123]

It's okay. My brain is not on fire and I have a tendency to ramble! I often look back at what I've written and wonder where my head was at.

I tried to introduce T3 to my usual dose of Levo three times over the past 8 weeks and there's no way to describe it other than it didn't feel right. I couldn't sleep, my stomach was bloated and no appetite. 10mcg of T3 was my starting point so I lowered the Levo by 12.5mcg for the first week and now on 75Levo/10T3. After one week I started feeling that drop in Levo. I'm doing labs in the morning to see where I stand at this time and also trying to make one change at a time. My appointment is on Monday and I'm going to ask for T3 to be raised. Sorry I don't have answers for your question as I'm in the same place but hopefully someone else will.

[Wired123 in reply to jrbarnes]

Fingers crossed for you. Are you under an Endo’s care?

Hoping for some more advice for my issues as it seems the forum is quiet right now.

Really not sure about the Endo’s response to just up the T4 back to where it was as he was adamant I was over medicated on that dose just 3 weeks ago.

[jrbarnes in reply to Wired123]

I've been to endos but at a functional medicine practice currently.

Looking at your previous October results you're far from being over medicated. Your TSH was still mid 1 range and T3 too low. My T4 has to be over the reference range to function on Levo only.

[Wired123 in reply to jrbarnes]

Yes I only started T3 after that Oct test, it was the Dec appt where he thought I was over medicated. Yet 3 weeks later he’s happy for me to undress my T4 when he was adamant that my Def results showed I’m over medicated.

I’m actually of the opinion that my T4 is ok but it’s my T3 that needs reducing.

Ignoring the blood tests for a minute. My first 2 weeks on T3 were a dream.. Week 1 at 5mcg and week 2 at 10mcg and then by week 3 it started going backwards a bit.

I’m suspecting that 10mcg T3 is too much for me.

[shaws in reply to Wired123]

Did you also have palpitations when on T4 only?

[Wired123 in reply to shaws]

No I’ve never really had palpitations. Heart rate testing was about 80bpm on T4 only.

It’s strange with reducing meds that my heart rate is so high.

I suspect I need to drop T3 rather than T4.

Like I said my first 2 weeks on T3 were a dream, first week was 5mcg, second was 10mcg. I suspect by the time the first week’s T3 got into my cells I started getting a lot better then went backwards in week 3 as too much T3 in my system. That’s my theory, but happy to be corrected.

[Wired123 in reply to Wired123]

It’s also strange that the Endo now wants me to increase my T4 despite high heart rate!

[shaws in reply to Wired123]

I think he's nervous about you taking T3 and his assumption is probably that the T3 has caused you to have palpitations.

T4 caused me to have severe palpitations. T3 resolved them. This is not to say that others will also have the same experience.

When T3 was added to my T4 I immediately felt a huge difference, i.e. I felt well and symptoms resolved. I eventually took T3 only and do so today.

[Wired123 in reply to shaws]

Just to clarify I’m not currently having palpitations, the high heart rate is being recorded by my Apple Watch.

So whilst I don’t feel that palpitation sensation in the chest I certainly can see it on the watch. My brain fog is bad however and my body is tight and stiff.

[shaws in reply to Wired123]

This link might be helpful:

betterhealth.vic.gov.au/hea...

[jrbarnes in reply to Wired123]

I had to drop the T4 because the same happened to me. 5 mcg first week, 10mcg second week but I started to feel poorly, like being on a higher amount of T4 plus T3 was slamming the brakes on conversion. I only have palpitations when I don't have enough T3 and it makes my heart feel like it's trying to pump harder. When I was on Levo only I woke up with palpitations around 4am when my T4 levels went down, which lowered my T3. sorry for the ramble. I had to make myself get up early for labwork and delay my meds and my brain is slow!