Sooo, T3 update and queries again. Sorry, but boy have I messed this up!! Long post... :(

[Josephineinamachine]

Hallo all

Sorry for another long post

I was given a T3 trial by endo and started in earnest on Monday 12 July (nearly 4 weeks ago). He lowered my Levo from 100 to 75 and told me to take 15 (5 x 3) T3 three times a day.

He also wanted to see me (with blood results) 4 weeks after the appointment which would have meant I would have seen him last week. At the time I thought that was really quick and panicked a bit.

Started off slowly while my T4 reduced. 5 T3 every morning for a week with Levo at 4am - felt good in the morning - feet and leg pain gone like a miracle. Go me, being patient (to start with). Then after a week tried an additional 5 in the early afternoon. Fell asleep immediately and felt pretty awful - spacey and weird and not able to concentrate. Better by bed time. Stopped the afternoon dose.

Then after 2 weeks I increased the morning to 10. Felt much better until mid to late afternoon when tired again. Tried another 5 later in the afternoon. Fell asleep immediately and felt awful.

So I thought right, can't do the splitting, I'll take all 15 in the morning. Within 3 days I felt hot, flushy, tired, aches and pains back in feet and legs like mad, and realised I couldn't handle the dose - probably was overmedicated, certainly felt like it. Did this for 4 days and then stopped.

Yesterday then - back down to 10 in the morning. Felt a bit better (no aches and pains) but started the tired in the afternoon thing. Took 2.5 T3 in the hope that I would be able to tolerate. Nope. Ended up falling asleep immediately and having a sofa day (so annoying) and didn't have any energy until 10pm (also annoying).

So today down to 5 in the morning. Have not touched it since. Felt good this morning and then, of course, tired and spacey by lunch time. Ate stuff. Ignored the T3. Did some (what should have been relatively easy) work - emails etc, which was grindingly difficult through the fog. But now getting towards 5pm and feeling okay-ish...

I'm not sure what my question is. I think I'd like to know what others think might be happening. Of course, I've not helped myself by chopping and changing and going up and down! Ridiculous. I was so patient with the Levo as well! (Well sort of anyway). I think I was panicked at first to 'get it right' with the Endo only giving me 4 weeks. Have now had agreement don't need to see him until end of September so that's a relief.

Ooh - this is my question! Have others had the sleepy thing and did they get over it? Thought it was meant to make me 'wakey' not sleepy??

I think it's likely I won't need as much as 15 - maybe only 10. I think I might have been slightly overmedicated on Levo on 100 now that I am starting to recognise that 'over' and 'under' symptoms are really, really similar! This is the good thing about T3 as the effects are quite immediate I think?

Have just ordered a very good Vit c to go with all my other vits recommended on here as am now thinking could also be adrenals? Have had 6 years of stress - work, relationship and bereavement so could well be that?

Am back at work tomorrow after 2 weeks off. Have been given new teaching for next year and I have to prep, which means I have to read, understand, process, plan and regurgitate. This is a big worry as my brain feels very unreliable at the moment.

Just hanging in for retirement now...only 11 years to go....

Sorry - I am absolutely rambling but really struggling to understand this and to know what to do next (especially with working at the same time!).

Thank you

[Josephineinamachine]

Oh, but the positive thing is - no more leg and foot pain in the morning or for the rest of the day and also I think I've lost a bit of weight? That's it. I shall be quiet now.Thank you!

[Hidden in reply to Josephineinamachine]

The only thing I know for certain is that the Endo I have seen has never taken Levo or Lyo and his advice to me when initiating the three month trial of Lyo would have definitely made me unwell .Therefore I have relied on the advice on here from people who have personal experience and more relevant knowledge.

Do you know how much over range your T4 was at the start of your trial ? Or how low your T3 was. I know that blood test results are only a reference range but mine helped me to work out what I would try . And it is trial and error.

Your Consultant’s advice is only a best guess anyway at what might work for you.

I think you initially felt pressured by the 4 week follow up appointment , together with the need to get your meds into one dose so that your working day wasn’t interrupted ?

We have a wise mantra in the horse world when working with horses, which is :

“make haste very slowly”………

and I have had to repeat it to myself 100 times a day wrt this T3 trial. Like you, I’d love to do it all at once ! I have now stopped tying myself in a hundred knots trying to preempt every possibility .

I’m not knowledgeable enough to advise you what to do. I’ve never had the leg pains you describe, and I haven’t fallen asleep after taking T3.

I can share what I’ve done.

I have reduced my Levo and have 5mcg of Lyo at the same time every morning . I have had episodes of being tired in the afternoon and 2 ‘dead days’ .

This is day 9 so today I have added I 5mcg of Lyo at 2pm and had no side effects. I feel fine so far and have had a busy day .

If I continue to feel well on this, I won’t change it until I feel I need to . If I don’t feel well I’ll go back to 5mcg for longer.

I can honestly say that I’ve had a few good days that have been better than I’ve felt for years .

Wherever I am in my dosing, I plan to do a blood test at 6 weeks and again at 10 weeks before seeing the Endo at 12 weeks. This should help me formulate whatever I need to tell him .

WRT work - you are going through a significant health episode and your employer needs to support you in that . Is this something you can discuss with them ? I know from personal experience what a massive pressure that can be .

Re- reading your post, I think you pretty much know what you are doing and maybe just need to give yourself longer to adjust before making any further changes?

Not sure any of this helps or is even right !

I can agree that it does feel like a bit of a ride on the waltzers 😊

[Josephineinamachine in reply to Hidden]

❤️

[SlowDragon Administrator]

Yes…..I found initially adding 5mcg T3 in afternoon I would almost immediately want to go to sleep

You need to stick with it …..it should improve after 2-3 weeks

Obviously when you add third dose at bedtime…..it can help give wonderful sleep

5mcg waking, mid afternoon and bedtime……roughly 8 hours equal intervals…..definitely works for me

I can’t tolerate single dose, or even just twice day (12 hours apart)

[Lalatoot]

It is very much a personal trial and error . Your ft4 was 18 before you started T3 so not near top of range T3 tends to lower ft4 a little so you could have stayed on your original dose and not reduced. Maybe increase levo back is something to think about rather than keeping trying to increase lio.I was on 100mcg levo with ft4 60% through range. The endo decided I should be on 50mcg levo and 20mcg lio. I slowly worked my way there over 6 months. I have spent the last 18 months altering doses to feel better using symptoms and blood results as a guide. I am now on 2 X 50mcg levo and 3 X 2.5 mcg lio.

[PixieElv]

Hi thereI am sorry I have no advice, other than I am exactly the same. Really tired at 2:30/3pm and have to sleep. Not really feasible if you have to work…

I added 5mcg of T3 at 12 noon as I’d hoped that would help with the sleepiness and it did for a few days and then I went back to really tired again.

some folk on here suggested that it could be the adrenal glands.

I did a Saliva test but that wasn’t very meaningful, so I am planning on repeating that.

Sorry I can’t be of any help, but I hope your situation improves.

I’ll let you know if I find a solution 😊

[BB001]

What I've learnt from my experience of adding liothyronine (T3) prescribed by an NHS endo:

Even with T3 you need to be patient. Immediate effects will be experienced that are not the same as the longer term effects you will experience once everything has settled down.

I increased by 5mcg every 7 days. Immediate effects (next day) were mixed. Legs were no longer puffy as though there's inflammation under the skin. Muscle weakness improved - I could walk downstairs without legs wobbling/ being unstable. I had a dull headache. After 3-5 days headache went away.

My conclusion is you haven't given each dose change time to work before you changed it.

Based on my experience, I would start on 5mcg, stay on that dose for a week, then add 5mcg. As it makes you sleepy I would add the next 5mcg dose in at nighttime.

Stay on that dose for a week, then add the 5mcg dose afternoon dose in. Stay on that dose until endo appointment. That way you'll have done as instructed. Otherwise how will the endo know what the effects of his recommendation is? And be able to advise on how to change it? IF you end up overmedicated, be reassured that it will only be for a few weeks and that it is unlikely to cause any long term problems.

[Lotika]

For some of us, the timing of the doses is really important.

My endo has recently stopped my T3 prior to an appointment- brave man… although other words also spring to mind - so I feel foggy and unable to remember where my info comes from… so I think I’m right but… I feel like you need to google my claims. I feel they mainly come from the consensus document on T4 and T3 monotherapy and thyroidpatient.ca. If you google consensus document and T4 T3 it should take you to the journal article, which is freely available.

Looks to me like your body does not like a big hit of T3. I read somewhere that if you take a massive hit of T3 which takes you over range, the first thing your body does is ditch fT4 because it’s worried you’ll be hyper and is trying to compensate by making sure you’ve no T4 to convert to T3. I think this is from thyroidpatient.ca… I was looking at information on T3 day curves some time ago and I suspect this is where it came from.

So… I recall (correctly or otherwise) that T3 takes 2 hours to hit your system properly from when you take it and will be at peak between 3-5 hours, starting to crash after that so that you don’t feel any benefit after about 8 hours. If that’s correct, then your second dose would need to be taken at around peak time, or shortly after - in that 5-6 hour window. Ditto dose 3. Worked for me. Don’t wait until it is wearing off.

So if you are crashing after your fisrt dose, I think it could be because you left it too long before taking the second… because of that 2 hours for it to sink in?

Taking my 2nd T3 sooner after the first worked for me. Like you, taking it at once wasnt so good. My personal view is that some of us are a bit reactive to having fT3 suddenly over range, which is what would happen with a big dose all at once.

Sorry I am so vague with this… short answer: experiment with timings.

[Josephineinamachine in reply to Lotika]

Hi Lotika why has your Endo stopped your T3 by the way?? 😳

[Lotika in reply to Josephineinamachine]

He hasn’t had the good grace to tell me! I’d run out so I asked for more and got radio silence and an appointment in September… I emailed again and no response. Lord love NHS endos!

[Josephineinamachine in reply to Lotika]

😳 no!!! That’s awful! God I hope you get through it and your blood test results make him feel ashamed of himself!! 😖

[Lotika in reply to Josephineinamachine]

I am certainly doing everything I can to drive down my natural conversion 🙃… so that I can say “I told you so…” and if he’s a good man, he’ll feel bad and sort it out!

[Josephineinamachine in reply to Lotika]

Good! Fingers crossed for you 😊

[Josephineinamachine]

Thank you so much Hidden SlowDragon Lalatoot PixieElv BB001 and Lotika

I was in a right spin with it all yesterday. You have all given great advice and support which I will think about.

I really appreciate your time with this and also for sharing your experiences. It helps me plan and also, more importantly for me, makes me feel less alone with it all of the time.

I know I'm overthinking everything and I'm getting really fed up with thinking about my thyroid all the time

🤪

I think the point made about timing is really interesting - the bit about the window of time, Lotika. I hadn't even considered that. I was sort of waiting for a feeling that T3 was leaving my body before taking another dose. Huh. So that's something to think about.

I like the 'make haste very slowly' advice, Fancymare. Will go with that! Thank you Did speak to my manager 2 weeks ago. He didn't say much at all. He's probably too overwhelmed himself. I have a great team that I work with though. Am hoping I'll get through it - have done so far by taking my annual leave to cover when I'm feeling particularly rough. Sigh.

PixieElv yes, I think adrenals might be playing a part. I'm trying hard to eat three meals a day and have now added good quality Vit C to my army of vitamins. Trying to de-stress as well... I hope you get yours sorted so you don't have this problem as well. I read eating regularly is good?

I agree BB001 - I watched myself in disbelief as I kept chopping and changing my dose. Definitely found my legs stronger with no pain and some water weight gone which is great. I did sort of assume that the 'effects' of T3 would be immediate so thank you for pointing out it takes longer than I thought.

Thank you SlowDragon. I really am looking forward to a good night sleep at some point

Lalatoot, thank you. Yes, I have no idea where my T4 is - not sure what impact that will have on me if it lowers. Both T4 and T3 were sort of low to mid range but TSH very low and Endo was fixated on that.

Thank you again all. Onwards and upwards then!

🙂🙂🙂

[Hidden in reply to Josephineinamachine]

Not ‘overthinking’ is so hard 😂 your post has resulted in some really interesting points that I’ve found helpful - so thank you for all the sharing everyone .And after saying I had not fallen asleep when taking T3 - this evening I did just that !

[Josephineinamachine in reply to Hidden]

Morning 😊 lol. Did you fall asleep in the day, or just get a good night sleep?! 😊

[Hidden in reply to Josephineinamachine]

It was late afternoon, around 4ish,, and I did sleep ok that night as well . After that I decided to increase my dose and I’m now on 100mcg levo and 10mcg Lio in the morning, then I have another 10mcg around 4pm - and the last two days have been good . More than good tbh. I feel a dip towards 4pm but it passes. I shall stay on this now and maybe try a single dose months down the line .I think I hadn’t had that ‘sleeping after T3 ‘ experience before because my T4 had been very high to begin with .

How are you doing ?

[Josephineinamachine in reply to Hidden]

I’m okay thank you. Glad you’re feeling better! I’m now taking 5mcg at 4am with 75 Levo, 1.25 mcg at 12 and then 5mcg at 8pm. Having a bit of trouble falling asleep but had that without T3 anyway. My sleeping heart rate last night dropped a lot which is good. Resting heart rate going down a bit which is also good. Yesterday had a full day of concentration and felt pleased with myself. Today a bit of a decline? Felt very tired earlier and had to nap! Bah! I don’t know…

My biggest problem is that I’ve become seriously constipated on the T4/T3 mix. I have no idea why 🤷‍♀️

[Hidden in reply to Josephineinamachine]

Funnily enough, I have been tired today but I had busy day yesterday - and then went out for dinner - so altogether too much fun! My friend, who is an ex colleague I have known for over 20 years, said that it was noticeable during the evening that I wasn’t ‘searching for words’ : I was very surprised . You don’t realise what people notice in you.

I’m sticking to my twice a day meds . I am definitely hungrier than I used to be and am eating better than I did . I can no longer go all day on 3 coffees and a banana, and eat in the evening . I have a meal late morning now and am really hungry later . I don’t like snacks.

My pulse has always been low and I expected it to go up but it hasn’t really changed .

If I say I haven’t been constipated you can guarantee I will be tomorrow 😂😂

It sounds like we are just adjusting and in time will really feel the benefits of the change .

I’m lucky enough not to be working just now. I have cut down on some activities to take the pressure off myself and allow for needing a quieter day .

Great to hear how you’re doing 😊

[Josephineinamachine in reply to Hidden]

I think I may have overdone things yesterday too. Maybe that happens when you get good days? You want to do everything you haven’t felt able to all in one go!! Good that your friend noticed…were you aware of it as well? Lovely feeling to get your words back!! Pleased you’ve got some down time to give yourself space to adjust. I’ve booked next week off now. Visiting friends and family but no work responsibilities which takes the pressure off! Good luck going forward…! 😊

[Hidden in reply to Josephineinamachine]

Oh that’s absolutely what I do - overdo things, which is why I’ve cut back while making this change. Yes, the brain fog has been very, very frustrating to the point where conversations were sometimes embarrassing for me . All my life, particularly at work, I’ve been known and relied on for having a good memory and being able recall any amount of names, numbers, contract details etc. Lately I struggled to recall words for everyday objects in conversation and I was the same when first diagnosed almost 20 years ago.

Although physically I am having tired periods just now , the brain fog seems to be lifting unabated - and it’s wonderful ! Like my brain is being released from prison and handed back to me.

I was tired all day on Friday after a v active day on Thursday and I’m hoping this will improve over the coming weeks . Last night I had the best night’s sleep for years - not sure if connected / but it was wonderful!

I hope you enjoy your week off - take it easy !

[Josephineinamachine in reply to Hidden]

Must feel so amazing! Really pleased for you. I had some days of clarity last week and felt so confident at work - haven’t felt like that in nearly 10 years. Woke up feeling calm and happy this morning after a good sleep too. A lot less anxious… Good luck with this coming week! 😊

[Hidden in reply to Josephineinamachine]

Good to hear ! Onwards …..😊

[BB001 in reply to Josephineinamachine]

Just in case anyone new reads this, T3 is dosed in mcg not mg. 5mg would kill you!

[helvella in reply to BB001]

Too true!

helvella - Micrograms Milligrams and Grams

An introduction to some of the units used in thyroid medicine.

dropbox.com/s/h63dzfr9o4jr8...

[Josephineinamachine in reply to helvella]

Edited my post now so as not to mislead peeps

[Josephineinamachine in reply to BB001]

Sorry 😳

[FancyPants54 in reply to Josephineinamachine]

My endo told me to reduce my T4 from 125 to 100 and then to 75 in a 2 month period whilst adding T3. I looked at my results. No way! I ignored him. T4 has tanked as a result of T3 tablets anyway.

[Josephineinamachine in reply to FancyPants54]

How has your T4 tanking affected you? Does it mean you have more fatigue? I’m a bit confused by what happens to people when T4 is lowered by taking T3? Thank you.

[FancyPants54 in reply to Josephineinamachine]

The T4 dropped a LOT and as a result any conversion I was getting from it has dropped so despite taking 25mcg T3 now and 125 Levo every day, I have lower blood results than just about ever before and my TSH is starting to rise. It's crazy. Makes no sense to me. I feel exhausted. I sit down all the time. I'm not doing anything but the barest minimum in life.

I am wondering if my HRT is affecting the thyroid hormones negatively because my oestrogen level has got high. So I need to experiment with lowering it. Endo said I could go up to 40mcg T3 if I needed too. But I want to know what's going on first because this is not normal. I expected a bit of a reduction, but not like this.

[Josephineinamachine in reply to FancyPants54]

Oh no 😖 did you have a time when you felt ‘optimal’? Was it a very brief time and then you felt unwell again? What about sleep at night?

…oestrogen dominance can be really debilitating. I had that several years ago. Puffed up like a balloon and was exhausted. That’s ANOTHER set of hormones difficult to both replicate and to balance.

Took several years to get all that right and now here with this bloody hormone. It’s a nightmare!

Stopped HRT strangely enough just before diagnosed with Hashis. Haven’t thought about it since but it could be this is all out of whack as well. I know I’m not oestrogen dominant though because I still need topical cream for ‘down there’ 🙄

I’m sorry you’re having such a time of it ☹️ Wouldn’t it be nice for just a while to not have to think about it all?

Fed up hugs in solidarity for you.

[BB001]

I really think it would help you to read some of thyroidpatients.ca articles or paulrobinsonthyroid.com blog to help you understand what is going on.

As your endo is TSH fixated search the thyroidpatients.ca site for TSH some great articles come up and all are research based. thyroidpatients.ca/2020/01/...

thyroidpatients.ca/2019/09/...

thyroidpatients.ca/2021/08/...

[Josephineinamachine in reply to BB001]

Thank you for these! I shall read them today 😊 really helpful, thank you for sharing.