Update on Endo appointment today: This afternoon... - Thyroid UK

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Update on Endo appointment today

Purplesash profile image
15 Replies

This afternoon I had my 12 week follow up appointment after a trial of T3 and still feeling under medicated, appointment couldn’t have gone better, he is increasing my T3 from 20mcg to 49mcg and leaving my levo at 100mcg. I have been told to take the additional 20mcg T3 half an hour before dinner and continue taking 20mcg in mornings with my levo.

I understand that T3 is as fussy as levo and I normally take my Vit D around dinner time, will this still be ok, I.e about hour after second dose of T3?

I am hopeful and optimistic this will be my therapeutic dose.

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Purplesash profile image
Purplesash
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15 Replies
SeasideSusie profile image
SeasideSusieRemembering

Lordy! Is he suggesting you go from 20mcg to 40mcg T3 in one fell swoop? T3 should be gradually increased in 5mcg increments, waiting a few weeks between, testing and see how you feel to know if you need to increase further. If he has suggested doubling your dose I really, really suggest you give it some very serious thought.

I don't take any supplements anywhere near my Levo or T3, I apply the same time gap to both.

Lalatoot profile image
Lalatoot

I would go cautiously. 24 hours after your lio dose your ft3 was 5. Personally I feel that a large increase in lio will put your t3 over range.

shaws profile image
shawsAdministrator

25mcg of T3 is approx equal 'in its action' to 100mcg of levothyroxine. Plus 100mcg of T4 (levothyroxine). If you find you are developing palpitations, reduce your dose of either T3 or T4.

Purplesash profile image
Purplesash in reply toshaws

Well I am going to give the extra 20mcg a go as advised by my Endo, I realise this is a big jump, but I highly suspect I have some form of hormone resistance. On 225mcg of levo and well over range I still had hypo symptoms but better than I am currently. He has advised me of what to look out for regarding over medication i.e. hand tremors etc.

shaws profile image
shawsAdministrator in reply toPurplesash

I don't take thyroid hormones on the morning of a blood test. Neither do I split T3 dose as I take T3 only and I've had no problems with my results.

I follow the advice given by one of TUK's Advisers and he was a brilliant person/sympathetic and knowledgeable.

He would never prescribe levothyroxine but he would prescribe Natural Dessicated Thyroid hormones (the very original replacement from 1892 and thereafter people didn't die an awful death). NDTs contained all of the hormones we'd usually have if not hypo. He would prescribe T3 for those patients who were resistant to levothyroxine.

healthunlocked.com/thyroidu...

Helvella put Dr Lowe's website into the dropbox below:

"But this link will take you to a sizeable chunk of his website that I was able to retrieve some time ago:

dropbox.com/s/w7cjut689r1w1...

Definitely not complete - but might be of help".

Purplesash profile image
Purplesash in reply toshaws

Thanks shaws very helpful as always. I am going to take my T3 as directed by my Endo for now, but I hope to move it to a single dose in the future as I think that will work better for me with fitting in my supplements and allowing a suitable time lapse before & after food and drink.

I will take a look at the link, I have certainly found the other links to Dr Lowe very interesting and informative, thanks again.☺️

shaws profile image
shawsAdministrator in reply toPurplesash

Our instinct usually works well for us and enables us to make decisions that suit us.

SlowDragon profile image
SlowDragonAdministrator

Suggest you only increase by 5mcg ……initially

Hold at that and retest after 6-8 weeks

You might need to increase again …you might not

Test early morning and last dose levothyroxine 24 hours before test

Day before test divide T3 into 3 smaller doses spread through the day and take last 1/3rd of daily dose T3 approx 8-12 hours before test

But it’s very easy to miss “the sweet spot” if increase too rapidly

JAmanda profile image
JAmanda

Maybe compromise and just try adding 10 and test tsh T3 and t4 in six weeks time to see if you need the extra 10. I agree with people above that jumping from 20 to 40 could mean you miss the sweet spot and could make yourself quite poorly.

iancpriestley profile image
iancpriestley

I was in similar situation to you. Local surgery prescribed 275mcg T4, but this just didn't work for me, I was still totally wiped out. Moved to self-medication as the surgery forced me away (they insisted I go private!) and NDT which worked well for me, but at quite a "high dosage". Changed to T3 only when NDT costs doubled. Circa 2 years on, I'm on 250mcg T3 only pd, (which might seem a huge dose?) but we're all different.However, private test results are good and I'm full of energy once again and easily able to pursue my full range of interests including long-distance walking. Fully endorse comments of shaws et al, take it easy, T3 is powerful stuff, but you will get there if you take things gradually and let yourself acclimatise.

shaws profile image
shawsAdministrator in reply toiancpriestley

One of TUK's Adviser's was an expert in the use of T3 and he took it himself. I believe he took 250mcg daily but it was because he had 'Thyroid Hormone Resistance'.

Unfortunately for us, patients, he had an accident that cause his demise. His name was Dr Lowe and I posted few things from his website.

playtime2 profile image
playtime2

We are all different, but that is a huge amount of T3. T3 is considered 4 times stronger than T4. I take just 2.5 T3 at a time and just 5mcg a day and it has an impact. In terms of figuring out if you are hypo or hyper just from your lived experience is difficult. Some of your same experiences can be from being over or undermedicated. The only way I know if I am experiencing too much medication is from having the gitters and feeling as if I just had three cups of coffee. The other various symptons of over or undermedication seem too uncertain. All to say, taking too much T3 can create as many problems and taking too little. An objective look is a Free T3 and Free T4 blood test.

Purplesash profile image
Purplesash

Thanks to everyone for your input, I understand your words of caution but as it is so hard to get T3 prescribed I feel I should give my Endocrinologist the courtesy of taking it as prescribed. Other than that I have a follow up in 10 weeks, which would not allow me the time to increase at the rate suggested by going ‘low and slow’. If I was self-medicating I would certainly be following your advice, but under the care of a specialist I will follow their advice, rightly or wrongly

Best wishes,

shaws profile image
shawsAdministrator

I don't think I'd eat after taking T3 - just in case food interferes with its uptake and I am not medically qualified. I take T3 only and am well and symptom-free. I follow the method by Dr John Lowe who was an Adviser to Thyroiduk before his accidental death.

healthunlocked.com/thyroidu...

Purplesash profile image
Purplesash

I am giving it an hour after before I eat.

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