On average, how long is it likely to take befor... - Thyroid UK

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On average, how long is it likely to take before I feel a decrease of 12.5mcg Levo?

Piglet1956 profile image
37 Replies

I’ve been having palpitations for a few weeks now and after my last endo phone appointment two weeks ago because of the following results my T4 was reduced from 100/75 alternate days to 75 every day.  This is essentially a drop of 12.5mcg per day.  My T3 was left unchanged at 2 x 5mcg/day. 

April 2023 (100/75 Levo and 2 x 5mcg Lio)

TSH <0.01 mIU/L (0.35 - 5) 

Free T4 (fT4) 15.6 pmol/L (9 - 21) 55.0%

Free T3 (fT3) 5.5 pmol/L (3 - 6) 83.3% 

I have been on the reduced dose for two weeks now and don’t feel the palpitations have lessened.  My fear is that 12.5 reduction isn’t enough and I will wait for 8 weeks without improvement and then need to wait a further 8 weeks for another reduction if I am overmedicated (I am feeling tired but wired, hair is even thinner than when I was on T4 only and I’m feeling a bit shaky and anxious – many of the symptoms of being under medicated before I was given T3 almost a year ago.

My T4 and T3 levels have increased and TSH fallen since my last test on the same dose (100/75 Levo and 2 x 5mcg Lio) 6 months ago, perhaps because my vitamin levels are now optimal. 

October 2022 (100/75 Levo and 2 x 5mcg Lio)

TSH 0.02 (0.35 - 5)

T4 12.2 (9-21) 27% through range

T3 5.3 (3-6) 77% through range

Thanks for reading.

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Piglet1956
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SlowDragon profile image
SlowDragonAdministrator

April 2023  (100/75 Levo and 2 x 5mcg Lio)

TSH <0.01 mIU/L (0.35 - 5) 

Free T4 (fT4) 15.6 pmol/L (9 - 21) 55.0%

Free T3 (fT3) 5.5 pmol/L (3 - 6) 83.3% 

Do you always get same brand levothyroxine at each prescription. Which brand

And same question for T3

What time was test, was last dose levothyroxine 24 hours before test and last 5mcg dose T3 approximately 8-12 hours before test

When were vitamin D, folate, ferritin and B12 last tested

What vitamin supplements are you taking

Piglet1956 profile image
Piglet1956 in reply to SlowDragon

Always the same brand for both Levo and T3

SlowDragon profile image
SlowDragonAdministrator

Looking at previous posts

You said in several posts you were taking 2 x 10mcg Roma capsules

Are you taking 5mcg or 10mcg capsules

Roma T3 doesn’t suit everyone

Have you only ever had Roma

You have Hashimoto’s.

Are you on strictly gluten free diet and/or dairy free diet

Piglet1956 profile image
Piglet1956 in reply to SlowDragon

Thanks for your reply SlowDragon. I have been taking 2 x 5 Roma. I was started on 10 but the dose was too high and I went a bit mental on day four so stepped down to 5.

All tests done as protocol on here. Vitamins tested at last test and all seem optimal.

Buddy195 profile image
Buddy195Administrator in reply to Piglet1956

Piglet1956, I had a massive spike in anxiety when changed to Roma and have now had to have it explicitly written on my prescription’Morningside only’. How long have you been taking Roma?

Piglet1956 profile image
Piglet1956 in reply to Buddy195

Ive been taking Roma for 11 months - its the only Lio Ive been offered.I wasn't so aware of the anxiety and palpitations until a few weeks ago.

SlowDragon profile image
SlowDragonAdministrator in reply to Piglet1956

Request change of brand of T3 to Morningside and then you can cut T3 in half to get 2.5mcg

Perhaps trying 5mcg waking and 2.5mcg at bedtime

Are you gluten/dairy free

If anything your Ft4 is a bit low

Piglet1956 profile image
Piglet1956 in reply to SlowDragon

Thanks for the suggestion and I will give it a try. However I'm sure I was told that it was Roma or nothing by the endo at my first visit. I could still empty out the capsule and mix it with water and take just half if I can't get a change.

Buddy195 profile image
Buddy195Administrator in reply to Piglet1956

I’m aware that several members have had issues with Roma. I am 100% better with Morningside, so I would definitely try to arrange an alternative to see if your symptoms subside.

Piglet1956 profile image
Piglet1956 in reply to SlowDragon

Sorry should have said Im gluten free but not dairy free. I tried eliminating dairy for a few weeks but didn't notice any difference.

greygoose profile image
greygoose

I suspect your endo reduced your dose due to your low TSH, rather than the palpitations themselves. Your actual thyroid hormone levels would be fine for most people, but palipitations can be a symptom of under-medication as well as over-medication. So, if that were the case, that would explain why they haven't improved since the reduction in dose.

The differences between the test in October 22 and April 23 are so slight as to be negligable. Especieally as you have Hashi's - with Hashi's you can expect levels to jump around a bit even without a change in dose.

And it's highly unlikely that such a small reduction in dose is going to have any effect on your TSH, if that's what your endo is worried about. He should know that taking T3 is going to lower/suppress TSH because that's what it does. :)

Piglet1956 profile image
Piglet1956 in reply to greygoose

Hello greygoose and thanks for your reply. To be fair, the endo said if I felt fine on that dose I could keep on it but i don't like the palpitations and I felt better when my T3 and T4 levels were lower and I had no palpitations. I'm just not sure which way to jump to change the meds for the best.

and I agree - I wouldn't have thought 12.5 dose change will have much impact.

greygoose profile image
greygoose in reply to Piglet1956

If you really think you were over-medicated and it was that causing the palps, then it probably would have been better to reduce the T3 slightly, rather than the levo.

Piglet1956 profile image
Piglet1956 in reply to greygoose

Thanks greygoose. Thats what SlowDragon suggested too so I will definitely look into that. Im a poor convertor which is why I was put on T3.

greygoose profile image
greygoose in reply to Piglet1956

That's why most people are put on T3. So, given that T4 is basically a storage hormone that doesn't do much until it is converted into T3, reducing the T4 isn't going to have much effect. Your endo really should know things like that. It's very worrying that he doesn't.

arTistapple profile image
arTistapple in reply to greygoose

I have plenty of experience of this and I know T3 was at the bottom of it not levo. I was wondering about this throughout Piglet’s post. Of course one can’t help playing this stuff over from one’s own point of view. I know very high T4 is reported to create palpitations but Piglets T4 does not look all that high. However palpitations seem to be a more common issue with T3. I agree a reduction in T3 would have been more useful (maybe). I am very respectful of the power of T3.

greygoose profile image
greygoose in reply to arTistapple

But, on the other hand, not enough T3 can also cause palpitations. The heart needs a lot of T3 to function correctly.

arTistapple profile image
arTistapple in reply to greygoose

Yes greygoose, I was being ruminative about myself but I do agree off course.

Piglet1956 profile image
Piglet1956 in reply to arTistapple

Yes its a very powerful hormone and so hard to regulate and predict its effects, particularly when there is so little understanding of it amongst medics.

arTistapple profile image
arTistapple in reply to Piglet1956

Oh goodness yes!

SlowDragon profile image
SlowDragonAdministrator

The reason it’s Roma capsules is price

5mcg Morningside is much more expensive

healthunlocked.com/thyroidu...

Lots of us get 20mcg tablets and cut into 1/4’s to get 5mcg

But cut reliably cut any smaller than 5mcg

So if you only need 2.5mcg then will need 5mcg tablets

Or empty Roma capsule and halve the contents

There are members who only take 2 x 2.5mcg doses of T3

Ideally only change T3 or levothyroxine at any one time ….wait 6-8 weeks then retest …..

if reduce T3 to 2 x 2.5mcg …… likely need to put Levo dose back up a little

Perhaps you might be able to ween off T3 entirely……

Especially if you split levothyroxine dose as 2 smaller doses waking and bedtime……this can help raise TSH and possibly improve conversion

Only try one change at a time

Are you gluten free or dairy free

If not gluten or dairy free it’s ALWAYS worth trying

Cutting gluten first as easier

Piglet1956 profile image
Piglet1956 in reply to SlowDragon

There's lots to consider SlowDragon. Thanks for taking the time to answer. I am gluten free but not dairy free. I tried DF for a few weeks but felt no difference in symptoms. And good advice to change only one med at a time.

SlowDragon profile image
SlowDragonAdministrator in reply to Piglet1956

I am now strictly gluten and dairy free

Gluten free was immediate obvious improvement

Dairy, I didn’t see any difference at all for 3-4 months. Now, almost 9 months later since last consumed any diary…..I am still seeing increasing improvements month on month

gabkad profile image
gabkad in reply to SlowDragon

Hi SlowDragon, what improvements do you see with being dairy free?

I went gluten and nightshade free for four years. Never noticed anything. But dairy free? Never tried it because I don't know what adversities are associated with dairy. I am not lactose intolerant. I drink about 250 ml of full fat milk every day and eat some cheese a few times per week. Usually 100% sheep feta. Sometimes cow cheese but usually various types of sheep cheese.

SlowDragon profile image
SlowDragonAdministrator in reply to gabkad

You can read my profile

Just like gluten…..I was astonished that dairy free has been so effective…….

I am not technically lactose free as I still have mercury Pharma brand levothyroxine and Morningside T3 …..both have lactose in

Apparently it’s the protein in dairy that can cause the issue

We see many, many people on here with Hashimoto’s who find dairy free helps or is essential

gabkad profile image
gabkad in reply to SlowDragon

My understanding on protein is there are two kinds. Sheep milk is A2 casein as opposed to most cow milk being A1/2 mix. As far as I'm aware, dairy doesn't give me any adverse symptoms although I've never tried to go dairy free because I'm addicted. Maybe that's my symptom. 😍 I could live on the stuff.

SlowDragon profile image
SlowDragonAdministrator in reply to gabkad

Yes….I gather from Isabel Wentz website, that sheep or goat milk should be ok ……and camel 🐫

But …..extraordinarily…..I don’t miss cheese…..so not even going to try sheep/goats cheese at moment

And oat milk is delicious

gabkad profile image
gabkad in reply to SlowDragon

I've never tried camel or mare's milk or donkey milk.

Buddy195 profile image
Buddy195Administrator

Totally agree with SlowDragon about only changing one thing at once. I got myself in a terrible muddle cutting out too many food groups/ adding numerous supplements…. Now I only make one change at once so I can monitor the affects. Like you, GF made a significant difference to me, but DF made little (noticeable) difference.

radd profile image
radd

Piglet1956,

I’m feeling tired but wired, hair is even thinner than when I was on T4 only and I’m feeling a bit shaky and anxious.

FT3 levels that high would give me palpitations and make me feel jittery too.

Often optimising nutrients makes thyroid hormone work better, which also has a cumulative effect by improving performance of other functions (such as liver, kidney, adrenals, etc) which makes thyroid hormones work even better. 

If this were me I would reduce T3 meds to 2.5mcg twice a day and raise thyroxine. Two med changes at once isn’t usually recommended but you can’t reduce T3 levels without raising low FT4, or resulting ‘under-medication palpitations’ could risk furthering confusion anyway. Therefore, I’d make both changes together.

Many of us only need a tiny bit of T3 which is enough to improve our thyroid physiology on many levels including ‘freeing’ and conversion of hormone. Therefore, we end up with much more T3 than we’re medicating. This is a positive indication that things are working well. You just need to adjust your levels to your own perfect ratio.

Piglet1956 profile image
Piglet1956 in reply to radd

Hello radd and thanks for taking the time to reply. My feeling when I first saw the endo last year is I just needed some T3 top up but I know that then messes with T4 levels. At that time I was fairly ok T4 and low T3 and getting palpitations, brain fog, dizziness, not sleeping and the GP saw that as overmedicated but it was likely undermedicated with too little T3 being produced so a wee top up would have been good. So my gut feeling is reduce T3. However I'm not sure which way to turn or what to do for the best.

Singwell profile image
Singwell

I will share my experience of having had palpitations on even 12.5 due to having a tendency to heart arrhythmia. On advice of my GP I stayed in that dose till the palpitations and tachycardia stopped. Took 2 weeks to get more stable. And I waited another 2 weeks before- in my.case - increasing the dose. Have remained stable since. I have a breathing exercise that others here have said helps with the palpitations. If you'd like it, message me.

radd profile image
radd in reply to Singwell

Singwell,

What's the breathing exercise? Sounds intriguing.

Singwell profile image
Singwell in reply to radd

Here you go: 1. Sit or lie comfortably so that your stomach can move easily when you breathe in. If you're lying down, this is easier on your left side.

2. Take a breath in.slowly through your nose. I usually count a slow 2. Let your tummy relax when you do this so it moves out gently.

3. There is a natural pause for most people after the inbreath

Try to tune into it but don't force it.

4. Let the breath out again all in one go - don't worry that you'll be out of breath - there's always air in the lungs right up until our last moments

5. Don't be surprised if you feel like another pause after the outbreath but again - don't force it. Keep tuning in either to the feel of the air moving through your nostrils or the sound.

6. If you need to breathe out through your mouth purse your lips slightly as it helps to feel the breath and know we're in charge of it.

6. Repeat.

Typically your breathing rate will calm and slow down. You may even feel like you're about to drop off to sleep.

This technique is one of many used by breath practitioners to help calm our systems and regulate breathing. I have often got my HR down by 15-20 BPM using this technique and sometimes seen my AF off. Also helps me if I cannot go to sleep

radd profile image
radd in reply to Singwell

Simgwell,

That sounds calming and as if it really works for you. Thank you for sharing. I think any concentrated focus on the breathe and diaphragmatic breathing allows us to re regulate ourselves.

I use a box method involving: in breathe, hold, out breathe, hold, etc, each four seconds long and visualised as going around the sides of a square. You can play around extending the hold or out breathe, and filling the belly, ribs and chest, and then reversing. 

Singwell profile image
Singwell in reply to radd

Ah yes. Am familiar with the box method but never found it worked for palpitations etc. I do use sometimes for other situations.

Piglet1956 profile image
Piglet1956 in reply to Singwell

Thanks for this Singwell, I'll definitely give it a try.

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