Can someone advise me PLEASE!: Poor toleration of... - Thyroid UK

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Can someone advise me PLEASE!

Jollypolly profile image
9 Replies

Poor toleration of thyroid meds for absolutely ages meant I kept reducing dose...snd last dose of t3 only was 2.5 mcg on November 8.

Decided wirh GP on new plan to try t4/t3 combination.

Had bloods done first...then restarted with 25 mcg four days ago .

Can’t get appt with gp ..but bloods are back and tsh is 56 !

I know the usual sensible plan for starting with t4 and then dropping back a bit from reasonable working dose and adding in little t3... BUT ...

Am very depleted of course and not feeling good at all...

Do you think I could add reasonably add in say 2.5 mcg t3 straightaway,,.or is three weeks with no thyroid too long and I would then have to go the long way round?

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Jollypolly profile image
Jollypolly
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9 Replies
SlowDragon profile image
SlowDragonAdministrator

Recommend increasing levothyroxine to 50mcg and retest after 6-8 weeks

Which brand of levothyroxine are you currently taking

Make sure to stick on one brand

Meanwhile getting vitamin D, folate, ferritin and B12 tested too

Jollypolly profile image
Jollypolly in reply to SlowDragon

EUTHYROX,,,have about 50 of 25 mg left over from another time...JUST in date..not take Levo for a long while now ..been on NDT and then this year t3 only.Had bloods done....typically though they did NOT do all go asked for..

Left off TGOab and free t3 ...useful isn’t it ....

Got results for ones you mentioned..

Vit D 82nmol

Folate 11.4 ug/L

Ferritin 82 mg/mL

B12. 1286. pg/mL

And tpo antibodies 194

Jollypolly profile image
Jollypolly in reply to SlowDragon

Thanks for advice....I’ll up the thyroid to 50 then...But I just took about 3 mcg t3 as I’m worried about how depleted I am..

Maybe if I just take that much t3 as well as the Levo as you said I’ll be ok...

Lalatoot profile image
Lalatoot in reply to Jollypolly

If you mix it up like that you won't know which thyroid med or which dose is giving you problems. I would also suggest you up the levo as slow dragon advised.

Jollypolly profile image
Jollypolly in reply to Lalatoot

Ok..thanks for that..but it takes ages for the Levo to kick in doesn’t it? It’s about 6 years since I last took it..

Lalatoot profile image
Lalatoot in reply to Jollypolly

It does but which is why bloods are 6 - 8 weeks. Starting dose is usually 50mcg. I have been adjusting levo and lio doses for 1 year to get them right for me. Others on here have been the same. It takes time and for a lot of that time we are not often feeling at our best unfortunately.

Jollypolly profile image
Jollypolly in reply to Lalatoot

Thanks for this it’s helpful to know ..

just read your bio and seen your photos ! Helpful to read your story AND see your face .. someone on HU is actually a real person !

All sounds reasonable .. will have to keep trying

I’ve only been off t3 completely the last three weeks

When do you think I can reasonably add in even say 2.5 to start ? I’m very keen to crack on with it and get out of this awful low state !

Lalatoot profile image
Lalatoot in reply to Jollypolly

If it was me I would get onto 50mcg levo wait 6 - 8 weeks then do bloods. Then I would add in 2.5mcg lio. Wait a week and if I felt ok add another 2.5 mcg lio to that dose. Wait 2 weeks and if ok add another 2.5mcg lio as a separate dose. Wait 2 weeks then add 2.5mcg lio to that second dose. Then wait 6- 8 weeks do bloods and post results on here.The endo suggested that my dose would be 50mcg levo and 20mcg lio. I built up to that but did not feel well. Over the year I have found I needed more levo to reduce symptoms and as it also pushed my ft3 up a little, less lio. I am currently on 112.5mcg levo and 15 mcg lio. Dosage is a very personal thing which is why you need to change only one thing at a time and then after 6 - 8 weeks do blood tests then look at results and how you are feeling and decide from there.

Annacat69 profile image
Annacat69

I have had the same problems in recent months. I just saw a doctor specialising in difficult thyroid patients and he ordered a lot of tests, both blood and 24 h urine.I don´t have all the results yet, but I do know that I tested positive for candida albicans. The doctor says I likely have food sensitivities and the lab results will tell us which one(s). He said the most common ones are gluten, dairy, and eggs.

That means I don´t absorb thyroid hormone very well. Even on 200 mcg of T4 daily, my labs were low...especially my FT4 levels which should be at the top of range on that high a dose. My levels in 24 h urine (which shows what is being used on cellular level) showed below range T3 and T4. My symptoms scream hypo.

No doctor ever considered food sensitivities as the reason I have problems absorbing thyroid meds.

My thyroid antibodies have been in range for the last couple of years (+6000 at the time of diagnosis 20 years ago). So my new doctor ordered an ultrasound which showed my thyroid gland is completely atrophied, so there is no hormone-producing tissue left to destroy which is why the antibodies dropped. According to the doctor, a patient with end-stage Hashimoto´s should be treated like a patient who´s had total thyroidectomy, so with both T3 and T4. But, in order for that to work for me, we need to find out what is causing my absorption problems.

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