Disappointed in my Endo- any advice please. - Thyroid UK

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Disappointed in my Endo- any advice please.

Simplyred57 profile image
11 Replies

Had my bloods done usual protocol advice from the forum. I’m taking 100mcg Thyroxine and 6.25 mcg T3. And my latest bloods are attached.

My T3 has dropped from 6.3 to 4.8 and T4 from 20-19 I very briefly for 2 weeks took some Thybon 7.5mcg , then switched back to Unipharma as didn’t feel great.

He has suggested I reduce my thyroxine by 50mcgs a week and keep T3 the same 🤷🏼‍♀️I’m happy to reduce thyroxine but definitely need to add more T3.

TSH is 0.05 ( undetectable) same as usual but he’s normally ok with that and said his aim is to keep both levels in the upper 1/3 , but now happy with my T3 43% through the range .

Range for T4 ( 9-23) & T3 ( 3.5 -6.5 )

I’ve asked for a telephone call to discuss and definitely not doing anything until I speak to him, he’s normally very good , but I’m back to where I was before I started T3 it was 4.5 back then.

Speechless What should I do ?????

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Simplyred57
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11 Replies
SlowDragon profile image
SlowDragonAdministrator

Have you tried adding 2nd 6.25mcg dose approx 10-12 hours after 1st dose each day?

Do you always get same brand levothyroxine at each prescription

If going to reduce levothyroxine perhaps reduce by 12.5mcg alternate days initially. 100mcg one day, 87.5mcg next day

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

What vitamin supplements are you currently taking

Simplyred57 profile image
Simplyred57 in reply toSlowDragon

I’m just shocked it’s so low , it’s back to where I was before I started T3 and can’t believe his response I’ve emailed his secretary and will try to speak to her this morning , I used to take 12.5 T3 but my levels went really high and have been stable on this dose for approximately 18months , yes same thyroxine ( Mercury Pharma) they were tested in December and vitamin B12 was top of the range so I stopped it and , lots of test done by my GP and folate and ferritin all in good range I take vitamin B complex, vitamin D with K 2, and magnesium citrate.

SlowDragon profile image
SlowDragonAdministrator in reply toSimplyred57

Looking at previous post you are taking a pain medication, are you taking Lansoprazole too?

Either or both of these could have affected absorption

Simplyred57 profile image
Simplyred57 in reply toSlowDragon

No I refused to take it much to the dismay of my GP.

AmberBee profile image
AmberBee in reply toSlowDragon

Which pain meds effect the thyroid?

SlowDragon profile image
SlowDragonAdministrator in reply toAmberBee

Taking any other medications too close to levothyroxine could affect absorption

Buddy195 profile image
Buddy195Administrator

I would also want to ask a lot of questions about the request to reduce your Levothyroxine. I certainly wouldn’t want to reduce so much. I wonder if the endo wants you to reduce Levothyroxine a step towards adding more Liothyronine to raise your T3? Otherwise, I’m at a loss to understand the advice!

My T4 was over range in March (whereas your level is well within range), so I’ve agreed with my endo to reduce Levo by 12.5mcg, then retest in 6-8 weeks. As SD suggested, I’ve done this alternate days as I’m sensitive to medication changes. After testing, I’m going to then consider adding a little more T3. Slow & steady is definitely my approach to making any changes.

Simplyred57 profile image
Simplyred57 in reply toBuddy195

We tried reducing it 2 years with drastic results both my levels went to under 50% through the range very quickly and he promptly increased them , I pay for my T3 so it’s not about cost . He is normally so good and happy with my ranges being in the top 1/3 and I’ve been recommending him on the forum , so his response was totally unexpected I’m going to refuse to reduce until my T3 increase and have already taken an extra 6.25mcg this morning 🤛😂

( he s ent a blood form for 10-12 weeks to retest )

thyr01d profile image
thyr01d

Hi Simplyred, I don't have any advice but thought you might be interested to know that my normally good endo also had a little wobble and reduced my meds recently. He has now increased again. I wondered if there's some new protocol requiring that the endos demonstrate that they have tried us on a lower dose but found we need more.

Simplyred57 profile image
Simplyred57 in reply tothyr01d

Thank you that sounds possible as it’s very different to his usual advice as he said he likes free T3 &T4 in the upper end of the range , I spoke with his secretary on Friday and she has sent him an email to contact me so just waiting for his call. I’ve already added another 6.25mcg so definitely standing my ground on this one . Will post his response after I’ve spoken with him .

Lola2003 profile image
Lola2003

Hi Simplyred57, I am sorry that I don't have any experience regarding T3. I have been on Thyroxine for getting on 30 years and have never been tested on FT 3 or 4. I recently asked my GP and was told 'they don't do this test, unless absolutely necessary'. But I feel that your TSH is much too low, and you are probably taking too high a dosis. I was also on 100 mcg of Thyroxine for years and then was changed to 75mcg. I tend to take my pill when I wake up early in the morning, i.e. 6 or 7am and then go back to sleep. ! I am quite elderly and have problems with insomnia. At least if I take Thyroxine so early and on it's own, it does not interfere with other medecines I take. Wishing you all the best in what you decide to do.

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