I have decided to reduce my thyroxine and self ... - Thyroid UK

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I have decided to reduce my thyroxine and self medicate with T3 but need some help.....!

dragon51 profile image
8 Replies

From previous posts i have wrote on this site over the past couple of weeks very helpful and knowledgeable people have explained my blood results to me. This was priceless information pointing out that there was a problem with T4 to T3 conversion. As a result I am working on getting the correct vitamins etc to help with conversion issues but this is a work in progress just now and as Seaside Susie pointed out I need to take each new vitamin for a period of time rather than just take them altogether and hope for the best which is what I done in the past.

In brief my last endo blood results were:

TSH 0.31 mU/L 0.31 - 6.00

Free T4 20.2 pmo/L 10.0 - 22.0

Free T3 4.2 pmo/L 3.6 - 64

Conclusion gained from this site: Low T3 conversion......!

Took endo blood results to discus with GP, my main concern being T3 conversion which I brought to his attention but he was not at all concerned and he only wanted to focus on TSH result. Dismissed all my concerns about T3 conversion. He did take note of section of endo comment which says: "If her thyroid function tests show high free T4 since she has symptoms we will reduce her dose of levothyroxine". (as mentioned in a previous post the symptoms were about issues with my heart but I want to stay focused on thyroid issues here to avoid complication)

Back again to "If her thyroid function tests show high free T4 since she has symptoms we will reduce her dose of levothyroxine".

Question!!!!! Does my blood result show high free T4? When compared to FT3 it is high. Standing on its own would this be a reason to reduce my dose of levothyroxine?

My point in mentioning comment of endo doctor is this. SHE WROTE THESE COMMENTS IN CLINIC PRIOR TO HAVING ANY BLOOD RESULTS (which she read back to me) I HAD THE BLOOD TEST AFTER CLINIC AND THESE WERE ADDED TO HER COMMENTS AT A LATER DATE.

Seeing that my T4 is high and my T3 is low (poor conversion) I have opted to take advice of a member on this site and reduce my levothyroxine and add some T3 (Liothyronine) after being awoken from my sleep last night with a racing heart that took quite a while to return to normal, whatever normal is. Felt so ill after the attack: could not think, talk, walk, fuzzy head, slight ache in heart as if it was in a vice..! So weak.

I had a thyroidectomy in 1992. Been on thyroxine since then. Daily dose prescribed is 100mcg. Furthermore I do have a supply of Liothyronine 20mcg. My age is 68.

Any suggestions please as to appropriate reduction of levothyroxine and added dose of T3?

Just got to do something that might help with heart problem as I am waiting to see private cardiologist.

thank you

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shaws profile image
shawsAdministrator

Maybe the following link might be helpful:-

thyroiduk.org/tuk/testing/i...

Lalatoot profile image
Lalatoot

Reduce levo by 25mcg for 1 week. Then add 5mcg lio for 1 week. If all OK add second dose of 5mcg lio. Wait 2 weeks on these doses. If OK add another 5mcg lio either as a third dose or to one of existing doses. Wait 2 weeks add 5mcg lio. Wait 6 weeks and get blood test. This is what I have done. Only difference is that I have had to reduce my levo by 50mcg in 2 stages as that is what the endo wanted. I think that might be too much of a reduction but bloods in 5 weeks will tell. Please understand the above is based on what has worked for me. I am not medically qualified.

dragon51 profile image
dragon51 in reply to Lalatoot

Thanks lalatoot what you suggest makes sense to me. If i was left to my own devices I would reduce levo and take amount of lio i want to take on day one and carry taking every day. Wrong way of course.

In 2016 I requested lio from endo with he gave me without question. 20mcg twice a day. He told me to stop taking levo before I took the lio. That was it.....no follow up blood test just my usual yearly appointment that would follow in the post.

Good grief after three days I had to stop lio.....complete insomnia besides other strange symptoms that i cannot recall. Felt like I was going crazy.

Went back on thyrozine but lio experience was scary and not touched them since.

the way your endo made the adjustment is much more fitting.

Just checked date lio expire.....its May 2017 so looks like I will have to wait until I next see endo doc will print your message to check she is doing the adjustment similar to how yours was done.

sincere thanks

SlowDragon profile image
SlowDragonAdministrator

Your FT4 is reasonably high....but obviously not above range

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 .

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

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you did this test?

Improving vitamins should help improve conversion

To add T3

Typically with FT4 at that result you would reduce the Levothyroxine by 25mcg and add in 2 x 5mcg doses of T3

If you want to more cautious for first week.....reduce Levothyroxine by 12.5mcg daily and add in 2 x 2.5mcg T3

It's easy to cut T3 into 1/4's using sharp craft scalpel. A bit trickier to cut into 1/8th's (speck of dust)

Stick at 2 x 5mcg T3 for 6-8 weeks before getting FULL Thyroid and vitamin testing

Making sure to do blood tests early morning, before eating or drinking anything other than water, last Levothyroxine 24 hours prior to blood test and last T3 8-12 hours prior to blood test

Come back with new post once you get results

shaws profile image
shawsAdministrator

First of all sometimes I wonder what the Endocrinologists duty is, i.e. to concentrate upon the TSH alone whilst ignoring the clinical symptoms or the Active Thyroid Hormone, i.e. T3.

T4 (levothyroxine) is the inactive hormone and has to convert into T3. (I am sure you are aware of this). We have millions of T3 receptor cells and all need T3, the brain and heart containing the most.

Seeing you have sourced your own T3, you can add 1/4 tablet every two weeks taking note of your symptoms (i.e. are they improving etc. I shall give you a link from an Adviser to TUK (now deceased). He would never prescribe levo - he only prescribed NDT or T3 for patients who were resistant to thyroid hormones. The following will be helpful:-

naturalthyroidsolutions.com...

web.archive.org/web/2010103...

SeasideSusie profile image
SeasideSusieRemembering

dragon51

Just my two penn'orth.

My suggestion for lowering Levo/adding T3 would be to use SlowDragon 's "cautious" route :) .

The reason I say this is because a 25mcg reduction might possibly take your FT4 too low for you. It happened to me (although it might not be the same for you, we are all different) when I was tweaking my doses. I had got my FT4 to 75% through range and my FT3 a bit higher. I reduced Levo by 25mcg and when I retested 2 months later my FT4 had plummeted to 8% (yes 8%) through range with my FT3 also reducing considerably to 40% through range (not that bad really considering my FT4 and due to what natural conversion I had left). It made me very unwell and it took over a year of further tweaking to get the right doses to get me back to FT4/FT3 levels where I need them.

As I say, it might not be the same for you, but I think it's better to go slower and change doses gradually rather than risk overshooting by a long way.

SlowDragon profile image
SlowDragonAdministrator

My FT4 was always around the 20 level (12-22 range)

Endo reduced Levothyroxine by 25mcg from 125mcg..to 100mcg and added initially 2 x 5mcg

As outlined above....I started more cautiously at 2 x 2.5mcg for first week and only reduced Levothyroxine by 12.5mcg

Blood test 6-8 weeks after getting on to 2 x 5mcg T3

Dose was increased slowly, first adding another 5mcg (so 15mcg per day - 5mcg three times per day)

After testing positive for Heterozygous DIO2 gene variation was increased to 20mcg T3 per day (10mcg at 7am, 5mcg at 3pm and 5mcg at 11pm)

But, like SeasideSusie .......after a few months my FT4 had dropped to near bottom of range and feeling more hypo......slowly increased Levothyroxine back up to where it was before T3 was added

dragon51 profile image
dragon51

Thanks slow dragon unfortunately I will have to print your letter for further reference because the lio I was going to use is past its sell by date. Expired May 2016.......

So my plan has gone out the window for now.

Thanks a million for such informative information....priceless

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