Can I just have a whinge?: Diagnosed in June 202... - Thyroid UK

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Can I just have a whinge?

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Diagnosed in June 2020. I was feeling dreadful. All that got me through was thinking 'i'll feel better by Christmas'. Ha. 3 Christmases later and I'm still kicking about this site...

Recently switched endo who changed me from 50mcg levo/10mcg T3/60mg Erfa.

I am now on 125mcg levo/20mcg T3 with the levo and 10mcg T3 taken in the morning and the remaining 10mcg T3 taken at 3pm (ish).

I've been on this regime for 2.5 weeks and I feel very much worse. I'm exhausted and my mental health has tanked.

I also know I need HRT so that's not helping matters but I am just SO TIRED of being unwell. It's been years and I'm just running out of stamina for it.

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SlowDragon profile image
SlowDragonAdministrator

Recently switched endo who changed me from 50mcg levo/10mcg T3/60mg Erfa. I am now on 125mcg levo/20mcg T3 with the levo and 10mcg T3 taken in the morning and the remaining 10mcg T3 taken at 3pm (ish).

That was massive change in regime

Likely to take several months to settle. Then going forward….only do tiny tweaks in dose or brand or dose timing

Make sure you always get same brand levothyroxine and same brand T3

You may need to split T3 as 3 doses spread through the day

Waking, mid afternoon and bedtime

in reply to SlowDragon

I was hesitant about such big changes too but I'm so fed up of it all that I'm willing to try anything.

Do you think it would be worth going back to a single dose?

SlowDragon profile image
SlowDragonAdministrator in reply to

a single dose of what…….T3?

Definitely not

More likely 3 doses of T3

And splitting Levothyroxine as 2 doses

But only ever change one thing at a time

Which brand of levothyroxine are you taking

in reply to SlowDragon

I used to take it all at once at bedtime; levo/Erfa/T3.

I just wondered if going back to one dose might help. As you say, some massive changes all at once!

SlowDragon profile image
SlowDragonAdministrator in reply to

Erfa (like all NDT) is “bound” and not instantly available

Stay as you are currently taking and get tested after 6-8 weeks (personally I prefer to wait 8-10 weeks)

Remember day before test split 2nd 10mcg dose of T3 as 2 x 5mcg …..last 5mcg dose Approx 8-12 hours before test

Retesting vitamin levels too ideally

in reply to SlowDragon

Next blood test includes vitamins (which I've been taking more regularly so should see some improvement!)

Will test at about 6 weeks this time. Waiting longer seems an impossible task.

Josephineinamachine profile image
Josephineinamachine

we were diagnosed at a similar time… mine was October 2020 and I’m also still kicking about this site trying to find how to get to the ‘old me’! Just saying… no answers I’m sorry… but I feel your frustration! I’m back on HRT. That has helped me ❤️

in reply to Josephineinamachine

I really thought I'd be ok once on a decent dose of levo. 🤪

Having a bad day & feeling v sorry for myself and I just don't know what to do for the best.

Thank you for the solidarity. ❤️

Josephineinamachine profile image
Josephineinamachine in reply to

❤️

Nacoya profile image
Nacoya

8 years diagnosed, took me two years to feel consistently 'well', which was really only when I found this forum and started to follow advice.

I also have those days of feeling frustrated/hopeless/exhausted. Its tiring having to manage a chronic disease that is ever changing.

And 8 years in, I need to keep on top of things and accept I'll have bad days.....I'll never get back to being the person I was before simply because now I have to think of medication, sleep, diet, exercise and mental health in a way I didn't previously. I've learnt to be kind to myself, let myself feel those down days when they arrive.

So, totally understand your frustration and wish for things to be better. You can share those days here too. I guess we all understand one way or another!

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