should T3 make you feel worse?: good morning all... - Thyroid UK

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should T3 make you feel worse?

Bentley-boo profile image
21 Replies

good morning all, further to my post last week, I commenced T3 2.5. at the start of this week following 5 days reducing my levo from 100 to 87.5( as my T4 was at the very top of the range). I am taking the T3 together with my levo first thing in the morning. My question is how should I feel? I felt ok at the weekend but now feel unwell, anxious heart racing stomach churning and trying to establish if this is something I’ve got to accept as part of getting used to T3 until I get to a dose my body needs?

I’ve started so slow as I seem to react to any changes in meds and I’ve read so much about slow and steady on this site.

Any advice would be so appreciated as I’ve had such a terrible night, and I don’t want to give up this soon worrying I don’t get on with T3 but I’m struggling already🥹

thank you

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Bentley-boo profile image
Bentley-boo
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21 Replies
Buddy195 profile image
Buddy195Administrator

What brand of T3 have you started? I had a bad reaction to Roma (massive anxiety) & reported via Yellow card.

You are right to go ‘low & slow’ if (like me) you are sensitive to changes in medication.

Bentley-boo profile image
Bentley-boo in reply to Buddy195

Hi Buddy195, thanks so much for replying.

The T3 is Morningside 10 which I’m cutting into 4 with a pill cutter. I just feel terrible (my years of Graves’ disease haunting me I think with these symptoms I hate feeling like this again!). Should I wait a full week if I can tolerate feeling like this and then try and introduce 2.5 in the afternoon ?

I’m so grateful for this site and the amazing wisdom of people, my private endo hasn’t a clue, if I had followed his instruction of drop to 75 levo and add 10 T3 all at once I cannot imagine how I would be right now.

Buddy195 profile image
Buddy195Administrator in reply to Bentley-boo

The decrease in medication might be too drastic for your system, so yes adding another 2.5mcg Lio in the afternoon may help. It’s important to restart levels 6-8 weeks after being on a consistent dose. I prefer to wait the full 8 weeks. Adjusting medication can be a bumpy path; keep posting to let us know how you are getting on 🦋

Bentley-boo profile image
Bentley-boo in reply to Buddy195

Thank you again buddy195. think I’m panicking which obviously isn’t helping symptoms, and I reacted so badly when my endo reduced my levo a year or so ago. I guess it’s such a shock to my system. I am so grateful for this site 🤗

SlowDragon profile image
SlowDragonAdministrator in reply to Buddy195

It’s important to restart levels 6-8 weeks after being on a consistent dose

You meant

It’s important to Retest levels 6-8 weeks after being on a consistent dose

Buddy195 profile image
Buddy195Administrator in reply to SlowDragon

Absolutely. So sorry, I’m in my mobile phone (on the train) and predictive text is at play! 🤣

Simplyred57 profile image
Simplyred57

When I started T3 my T4 was at the top of the range too, but my Endo advised to keep thyroxine the same as reducing and adding would be too much, and I started slow on the T3 in split doses and it automatically reduced my T4 , it was a slow process but I’m now stable and take it once a day with my thyroxine , T3 is a lot more powerful so very slowly is my advice.

Bentley-boo profile image
Bentley-boo in reply to Simplyred57

Hi SimplyRed57, thank you for responding. It is so encouraging to hear you are now stable, can I ask how long it took you to feel as you do now?. I did wonder if the levo reduction was causing symptoms but I was told I had to drop to start T3 as at the top of range. I think your endo is def more clued up than mine. Now I’m wondering should I just drop to 87.5 levo a few days a week and stick with the 2.5T3 and see how I am before adding any further T3?

Buddy195 profile image
Buddy195Administrator

I would suggest only making one change at once; so maybe add another 2.5mcg Liothyronine in the afternoon and keep Levo as it is (as yourFT4 was high in the range).

Bentley-boo profile image
Bentley-boo in reply to Buddy195

I always only felt as well as I could when FT4 was high in range that’s why I wondered if I’ve dropped too much expecting the 2.5 T3 to make the difference - I think I have so much to learn from you all. Thank you

Simplyred57 profile image
Simplyred57

It’s taken me a couple of years altogether but I’m very sensitive to changes and lucky my Endo did bloods regularly, I would email or phone his secretary if I felt I wasn’t quite right and she would speak to him for me and send me a blood form, I was usually right and my levels were off. I know everyone is different but if myT4 is too low I definitely feel it, I’ve only recently dropped my thyroxine from 100mcg a day to 2 days a week to 75mcg and it’s made a massive difference in my T4 level so only 50mcg a week . I only felt well before T3 if my T4 was top or over range.

Bentley-boo profile image
Bentley-boo in reply to Simplyred57

That sounds like me, the slightest change and body reacts, most I’ve ever been able to drop of levo is 12.5 once a week without getting symptoms, I’m now a week of 87.5 daily and I feel it everywhere, definitely too much reduction for me and I guess too much to ask of my body to accept T3 introduction on top.

Simplyred57 profile image
Simplyred57

hi how are you feeling this morning?

Bentley-boo profile image
Bentley-boo in reply to Simplyred57

Good morning, thank you for thinking of me. I felt like I was in shock yesterday all day but I feel calmer today. Going to up my levo a bit alternate days over the week as I think the reduction is just too much for me personally and see how that goes with the 2.5 T3. Not sure what I would have done yesterday without the support of this site and knowing others understand and can help, thank you 🤗

Simplyred57 profile image
Simplyred57 in reply to Bentley-boo

Good morning thats so good to hear . I remember I was all over the place when I first started taking T3 , I re read some of my old posts yesterday and realised without the support of the forum I don’t know where I would be they kept me right 🙌

I started on 6.25mcg as I had some Unipharma and increased up to 18.75 before coming back down as it was just too much for me, Im now on Thybon and have settled on 10mcg so sometimes a little is just enough, stayed on 100mcg thyroxine until very recently and my levels on T3&T4 are good so hang on there 😊

Bentley-boo profile image
Bentley-boo in reply to Simplyred57

Gosh, you started on much higher dose than me, perhaps I’m starting too small but I just want my body to tolerate it so I figured baby steps would be best rather than listen to my endo who has a sledgehammer approach. Day at a time I think at the moment, still feel out of sorts and on edge, trying to carry on as normal with kids and work but it’s not easy is it😰. I think I’m going to be relying on you all on the forum for quite a while yet, the advice is priceless! Thanks again for thinking of me 😊

shaws profile image
shawsAdministrator

Levothyroxine did not help me at all. In fact it gave me severe palpitations during the night and I never felt any improvement.

The local hospital's Cardiologist was also linked to me overnight but still couldn't find any reason why this was happening.

When I read Dr John Lowe's advice, which I follow and it resolved all symptoms. I have felt well since and some years have now elapsed..

It was T3 (liothyronine) alone.

He was a Scientist and when a teenager he began to search for the reason someone would take their own lives as his father and his father's brothers took their own lives and he knew how this affected family/friends,

Dr Lowe also had an accident that caused a bleed in his brain and it caused his demise.

drlowe.com/thyroidscience/c...

I still take T3 when I awake with one glass of water and wait an hour before I have my breakfast. I feel well. and am symptom-free.

shaws profile image
shawsAdministrator

I take T3 and found it miraculous. I have been taking it for some years now.

I followed Dr John Lowe's advice as he was a scientist and and expert on taking T3 and it resolved any problems I had.

He was also a Scientist and researcher and Adviser to TUK but had a bad fall that caused a brain bleed and he died.

p.s. his website is still shown as his widow will be helpful.

tpauk.com/main/article/the-...

Bentley-boo profile image
Bentley-boo in reply to shaws

Hello, thank you so much for your message, it’s so encouraging to hear the difference T3 has made for you, and it really helps knowing positive times hopefully are to come✌️. It’s such a long road dealing with thyroid disease isn’t it, plagued me from my teens when Graves first took ahold. I have to say having this forum and the knowledge it presents means so much, just wish such knowledge and support had been available thirty years ago!

I am up and down, some days worse than others symptoms wise, but I am taking a day at a time, not always easy coping with normal family life but I’m doing my best☺️.

I hope you have a lovely Easter 😊

shaws profile image
shawsAdministrator

T4 (levothyroxine) was awful for me and I developed severe palpitations that caused both my husband and myself to have disturbed sleeps.

I found a very knowledgeable scientist/doctor/expert on the use of T3. He took T3 himself.

I take T3 with one glass of water and wait an hour before I eat. I feel well and am symptom-free.

drlowe.com/thyroidscience/c...

DandyButch profile image
DandyButch

Hello Bentley-boo, like Shaws, I was on levothyroxine only for two years but it made me really ill. I am now on liothyronine only, and have actually started to improve, although 4 months between endocrinology appointments is dire. Also, struggling to get NHS endo to understand how the thyroid works, and the relevant blood tests etc etc. So frustrating. So, poor health and hypo symptoms continue. I am currently having difficulty trying to explain to endo that TSH only testing is not useful when on T3 only. I know I need an increase, but she says she cannot increase it because my TSH is 2, which is normal!!!!! Goodness help us.

I definitely did not experience the awful downturn in my hypo symptoms that I experienced when on levothyroxine. And, any increase in dosage, which was small, took many months to show any obvious improvement. Although, even when I accidentally took a double dose, it didn't make me feel bad, which I was anticipating , I actually felt better

Good luck with it, perseverance is key.

A lot on this forum have had to do a lot of jiggling to find their best place.

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