Me again feeling rough & latest results. - Thyroid UK

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Me again feeling rough & latest results.

Otto11 profile image
10 Replies

Hi everyone I'm after a bit of advice prior to my appointment with my Endocrinologist on Monday next week. My history is quite long but I saw an Endocrinologist last October after being on a trial of T3 for a year.. My dose then was Thyroxine 75mcgs & T3 10mcgs twice a day. My results were TSH 0.02 (0.27-4.2) T 4 13 (11-22) & T3 5.4 9(3.1-6.8) This dose made me feel a bit shaky & had some palpitations.

I saw him again in December when my results were TSH 0.01 ( 0.27-4.2) T4 18 ( 11-22) & T3 4.9 (3.1-6.8) We agreed on a slightly lower dose of Thyroxine at 87.5mcgs daily.

By February I was feeling rough really wiped out & couldn't think straight & felt like I needed extra T3 which I did take on occasions & seemed to help a little bit.

I called the nurse helpline & the nurse wasn't interested but said I could get my bloods done but no one would look at them till my next appointment in March. I posted the results in a previous post.

They were TSH --- T4 14 (11-22) & T3 (3.1-6.8) I then spoke to a different nurse telling her how unwell I was feeling so we agreed to reduce back to my original dose of Thyroxine75mcgs plus 10mcs of T3 daily for 4 weeks which takes us to today. I have been feeling even worse since reducing the thyroxine dose & some days i'm hardly able to keep my eyes open & finding anything cognitive impossible (like writing this post) . I'm also shaky & weepy & have the palpitations back. I had my bloods done this morning & the results are

TSH 0.01 T4 13 & T3 4.6

What should I be asking or saying to the Endocrinologist next week? . I feel like I definitely need a higher dose of Thyroxine or both to be honest. He is very nice but not terribly proactive I certainly can't stay like this. I'm getting nothing done in a day I feel so awful. I just can't seem to get the levels right.

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Otto11
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10 Replies
SlowDragon profile image
SlowDragonAdministrator

Do you feel worse since T3 added

Which brand of levothyroxine and T3 do you get

Are they always same brand

Thyroxine75mcgs plus 10mcs of T3 daily for 4 weeks which takes us to today.

was test done as recommended early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

T3 ….day before test split T3 as 2 smaller doses spread through the day, with last dose approximately 8-12 hours before test

assuming yes

Free T4 (fT4) 13 pmol/L (12 - 22) 

Ft4 only 10.0% through range

Free T3 (fT3) 4.6 pmol/L (3.1 - 6.8)

Ft3 much better at 40.5% through range

Suggest you increase levothyroxine to 100mcg

Perhaps initially to 75mcg and 100mcg on alternate days for 3-4 weeks before going to 100mcg every day

Looking at very helpful profile and recent tests

Can’t see any recent vitamin test results

You get regular B12 injections

What other vitamin supplements are you taking

Vitamin levels may be low as currently on too low a dose

Otto11 profile image
Otto11 in reply toSlowDragon

Thanks for your reply. My bio is not up to date not had much time lately. Yes I’ve been loads better since starting T3. I hardly functioned at all spent a lot of time in bed. Always get same brand which is Roma & Thyroxine is Accord for 50’s & Mercury for 25mcgs. Todays test was following protocol but not till about 9.50 due to huge queues at hospital. I was there at 8.40 annoyingly. Last Vitamin tests were a in August 24. Ferritin was 104 & Folate 14 & B12 was 952. I get 6 monthly B12 injections from GP. My levels seem ok so I havnt pushed for 3 monthly which I had till lockdown. They didn’t do Vit D. I’m taking Zinc tablets as it was low & Methylfolate tablets twice a week. I have a Vit D Spray too. I’ve tried with B Complex Solgar but they upset my stomach a bit. I must get the Igneous that people recommend here.

I will ask for an increase although I would hope he would suggest that himself. In Oct last year my T3 was 5.4 & T4 13 That was on the same dose I’m taking now 75mcgs & 20mgs T3. This is what I don’t understand. But in Dec on 100cgs my T4 was 18. I guess I will slowly need to increase it again.

I’ve just had a little nap & that’s fairly obvious now my brains had a rest. Thank you.

SlowDragon profile image
SlowDragonAdministrator in reply toOtto11

I find since adding T3 it’s even more important to fine tune Levo dose

But in Dec on 100cgs my T4 was 18.

That’s probably nearer what you need

Some members don’t get on well with Roma at all

Others find it ok if they open capsules and take the powder

Otto11 profile image
Otto11 in reply toSlowDragon

Interesting as when I started taking T3 I split it into quarters then halves to make it into 3 or 4 doses & 2 tablets into 3 doses the day before blood test

It’s faffy & not something I fancy doing all the time though. Am I right in thinking they may be the cheaper option? If so I don’t want to rock the boat. I will ask my Consultant for an increase on Monday. Thank you for your help.

SlowDragon profile image
SlowDragonAdministrator in reply toOtto11

Cheapest is cutting 20mcg tablets into 5mcg doses

If taking 10mcg per day …as 2 x 5mcg

Otto11 profile image
Otto11

Thanks. Mine are capsules unfortunately.

SlowDragon profile image
SlowDragonAdministrator in reply toOtto11

You could ask to try 20mcg tablets

They are cheaper too

Options are

Teva - lactose free

Morningside

Mercury Pharma

Otto11 profile image
Otto11 in reply toSlowDragon

Oh OK that's a good idea. Thanks

SlowDragon profile image
SlowDragonAdministrator in reply toOtto11

Get a sharp craft scalpel to cut 20mcg into 1/4’s

Otto11 profile image
Otto11

Thanks you. I have a pill cutter but it’s not very accurate at all.

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