Advice on T3 monotherapy

[Hashiboy]

Hi there, hope everyone is doing as well as they can I get some advice from someone with experience of T3 monotherapy? I'm now eight weeks on 60mcg T3 only. I had been doing well but this evening my legs feel like jelly,I'm struggling to concentrate and feel kind of is weak and tired.m y TSH 0.13 and T3 4.5 (range 3.1 – 6.8) so not suppressed. Do you think my dose might be too high or am I just getting used to the T3 monotherapy. Thanks.

[helvella Administrator Thyroid UK]

I suspect you mean 60 micrograms (not 6 as you have posted)?

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[Hashiboy in reply to helvella]

Thanks helvella, yes it should be 60 mcg I’ll correct that. I have always had trouble with typos. I actually edited the post once already because the first bit came out in Dutch because I hit the translator. Not sure if it’s my chunky fingers or being too speedy on T3.

[Hashiboy in reply to helvella]

Helvella, can you help with one other question about posting. Do you know how I tag someone’s name. Someone told me but I forgot. I’ve tried @ and # but doesn’t seem to be it. Thanks

[helvella Administrator Thyroid UK in reply to Hashiboy]

Type @ - then the letters of the member's name, in order.

At the bottom of the box you are typing into, you should see a list oif up to four member names. As you get close to completing the name, the number might drop. And one line will be blue. Click on the blue line - just hit Enter. And the name will seem to lose the @ and change to blue/cyan colour.

Hashiboy

[Hashiboy in reply to helvella]

Thanks for that @helvella

[helvella Administrator Thyroid UK in reply to Hashiboy]

You have not selected the name properly - you have just typed my name with an @!

If it doesn't change colour, it hasn't worked.

[Hashiboy in reply to helvella]

😁I think my keyboard skills are a work in progress, thanks for the coaching

[Hashiboy in reply to helvella]

helvella hi there thanks for your help earlier Helvella. I think I've got the hang of it now.

[jimh111]

I would just try reducing your dose for a week or two and see how you do. I find it is important to take a dose at bedtime for good deep sleep and this results in good cognitive function the next day. Spread your doses evenly or at least take the larger dose at bedtime. If you find it takes a long time to get to sleep you are on too much, if your sleep is shallow with multiple awakening then you are probably on too little.

[Hashiboy in reply to jimh111]

Thanks jimh111, I’ve been advised to take 20mcg at 8am, 1pm and 4pm. I’d be very interested to her about your dose schedule as it sounds very different to mine. How much are you taking before bed ? And what about during the day?

[FancyPants54 in reply to Hashiboy]

That’s a lot of T3 very close together.

I tried to get to T3 only, but I can’t do it. I feel pretty awful on 25mcg Levo and 55-60 mcg T3. I’m working my way back down.

For me too much made me terribly fatigued. Rough sleep, almost unable to control my legs, unable to walk properly, afraid of falling. Horrible. I’d reduce that dose and space it out much more. Try 8am, 2pm, 8pm as a first attempt.

How quickly have you raised to 60 T3? A dose of that size should have been crept up to over many months.

[Hashiboy in reply to FancyPants54]

Hi FancyPants, thanks for the reply. took me about three months to transition from levo to t3 so I realize it’s early days. I think the jump from 50 to 60 a month ago might have been a bit too soon. I do need to be patient, after years of crap health on levo I was keen to get to an effective dose of T3. Maybe too keen. So like you and Jimh111 suggest I might reduce a bit and change the spacing. Really hope you have improved and got a better treatment in place. Do you mind me asking what combo you ended up on?

[FancyPants54 in reply to Hashiboy]

Oh goodness you did go fast. Way too fast I'm afraid. It took me around 15 months to get to 60 and I still made mistakes that have cost me a lot of time and upset.

At the higher doses of T3 you should be increasing by 2.5mcg a time if possible, certainly no more than 5mcg a time, and leaving each dose 6-8 weeks to see how it settles out.

I have been struggling with the summer heat and doses. During the hottest part of summer I dropped a further 5mcg of T3 to a total per day of 25mcg. I have now taken my T4 dose back to 50mcg with it. But something isn't right. I am now feeling undermedicated I think, but because of how too much T3 makes me feel, I have to wait and test at the appropriate time (in this case 6 weeks after the increase in Levo to 50mcg) before I decide whether my next adjustment is T3 or Levo.

T3 has never been the miracle for me that others find it can be. Hence being able to increase as far as 60mcg a day and feel nothing other than worse.

First try spacing out a bit better and secondly start a slow and monitored reduction in T3. You should be checking your pulse, BP and temperature and noting them down so you can see the changes over time. You need to check before a dose and 2 hours after a dose through the day. If taking a dose causes your HR to rise then it's too big a dose. For me too much results in my temperature dropping quite a lot and then creeping back up 3-4 hours later. Have you read Recovering with T3 by Paul Robinson? If not, you need too. His work is excellent and he's a T3 only patient, on a lot less T3 than you per day. He also has a blog of the same name and that contains a lot of case studies as well as good ideas and suggestions and information.

[Hashiboy in reply to FancyPants54]

Hi there FancyPants54 I keep posting a reply then crashing. Just to say sorry you are feeling rough really hope you improve soon. Hypothyroidism is a pain in the butt. I'll take your advice and consider a dose reduction. I skim read the book you mentioned but must look at it properly. I'm also going to consider jimh111 advice and consider the timing of doses.

[FancyPants54 in reply to Hashiboy]

The book deserves more than a skim read if you want to do T3 only. And yes, dose timings is important too. You peak T3 in the blood 2 hours after taking and it starts to fall again slowly about 4 hours from taking it. So your doses are much too close together for sun large doses.

[Hashiboy in reply to FancyPants54]

Thanks for taking the time to reply and give some helpful advice. I really appreciate it. I'll do my homework and give it a read. I wear a medical grade heart rate and ECG watch that tracks me heart rate over the day so that should be helpful. On T4 only at any dose I had a resting HR of 50 to 55 . In T3 that's now averaging about 75 peaking in the 90s about two to three hours after a dose. So I should start tracking that properly to get the spacing right.

[FancyPants54 in reply to Hashiboy]

Yes, you need to track and record that HR. That is not right. You don't want your HR in the 90's that shows your dose is too high, at that point in time anyway. I live with permanent atrial fibrillation which gives me an erratic but also consistently high HR even with a Beta Blocker. The erratic nature of the beat makes tracking the HR harder, but I bought an Apple Watch to help me that that's done a great job. I was able to see that even though my HR goes up and down a lot, with higher levels of T3 the trend was relentlessly upward. Not what it should be at all.

If I were normal, ie not AF, I would want my resting HR in the lower 70's and sometimes in the higher 70's. I would not want it in the 80's or above.

[Hashiboy in reply to FancyPants54]

Oh I'm so sorry to hear about your afib FancyPants54 hope it's not leaving you too dizzy or breathless. I've contacted my endo to ask him to discuss a dose reduction.

[FancyPants54 in reply to Hashiboy]

Oh it mostly doesn't bother me at all. I inherited it from Dad. Lot's of his family have it. My thyroid issues is way worse. I can exercise with Afib. I can't in my current thyroid state.

Beware following endo advice to the letter. I had been struggling with my condition for years and learning all I could about it and how to diagnose, monitor and increase the different hormones. I found a private endo. who is lovely, but he wanted me on T3 and came up with a very fast and odd dosing schedule. I was desperate not to have to do it all myself at that point. His schedule raised alarm bells with me, but I thought I just needed to be supine for a while and let him look after me. And he got it wrong and then we just kept thinking more would do the trick.

Now I have to unpick all that and walk it backwards trying to find the sweet spot for FT4 and FT3 that I presumably galloped past. Now I use him for tests and prescriptions and discussions because he is good and he cares. But I dose myself. No more listening to doctors on that front because they just don't know enough about the things that can go wrong.

You don't need your endo's permission to experiment with timing or reductions. Just keep picking up the regular prescriptions so that you end up with spare stock. Always helpful.

[Hashiboy in reply to FancyPants54]

I think you're right, like jimh111 says medics can have an idea of what schedule or dose is needed but you have to find what suits you. The good ones usually know that and work with you. I've generally been lucky and have a very helpful GP so I really feel for some of the people who post here who don't have much collaborative medical help.

[jimh111 in reply to Hashiboy]

I’m currently on 50 mcg so I take 25 at breakfast and 25 at bedtime. I would suggest you try the same or 20 at breakfast, 10 mid-afternoon and 25 at bedtime.

Lots of doctors suggest taking T3 earlier in the day, I suspect they are guessing that this will give you energy during the day and that you don’t need T3 at night. I have found that I really do need T3 for restorative sleep and this makes a great difference to my physical and mental capabilities during the day. In healthy people fT3 is a touch higher during the early hours when we are asleep. The brain works very hard during sleep and I conclude that it needs T3 to do so.

I don’t remember my dreams but I have trained myself to at least remember if they were sharp and vivid or fuzzy. I need the former to feel well and function normally. I think doctors who recommend taking T3 earlier in the day have got it wrong, an understandable mistake but not well thought out.

[Hashiboy in reply to jimh111]

Thanks Jimh111, I might give that a try. I think you are right that doctors aim for a boost in the morning and top ups during the day but this might not be how the body prefers it. I generally feel better first thing before the morning dose when I’m still running on the previous days doses if that makes sense.

[Hashiboy in reply to jimh111]

FancyPants54 jimh111 Just to say thanks for the advice. I started very close tracking of heart rate and it showed I was probably on too hgh a dose. I was starting to hit 120bpm just walking.. I dropped T3 altogether for av few days (it was lovely having a holiday from pills after all these years). It took about two days for my heart rate to come down and three days for hypo symptoms to return (so it was interesting to see T3 effects last so long). I've now reintroduced T3 yesterday in two doses of 10mcg and will slowly increase in small increments tracking symptoms and heart rate. As I'm now fully clear of T4 this will be a great opportunity to start T3 in a structured way without having to account for residual T4. Anyway thanks both for your support and advice. Feel like I'm in the right track now.

Also wanted to share that there was a golden few hours when I'd been off T3 for a day or so when it's effects were reducing I hit a sweet spot where I was symptom free. I got to experience a day of feeling well and not taking meds. It was like not having hypothyroidism. Obviously didn't last and as T3 effects fell further fatigue set in. But it was a magical Goldilocks zone. So hopefully I can gently climb back up into that range. I think it's going to be around 40mcg.

Anyway big thanks to you both

[FancyPants54 in reply to Hashiboy]

That's such good news. I know about that good feeling that it's possible to get for a while on the process of reducing meds by stopping them for a few days. Now take that build back up very slowly. Be prepared to be tired and fatigued but to bear with it because for example, it takes at least 2 weeks for a dose change to settle down for me. In that time I can feel better and all over the place, worse, even worse, back up and generally rocking around. So try to never change things for at least 2 weeks unless you realise you made an obvious mistake and wish to reverse it. It's very hard to be that patient. I'm in the same position now as I gently increase my Levo again and have bought my T3 down. I'm now on 62.5 Levo and 25 T3.

You did the right thing. HR for someone with a normal heart function is a very good indicator, as is temperature. Did you monitor that too? I find if I take a small dose of T3 at the wrong time, it can push my temp right down quickly. That probably means I took the dose too soon and should have waited a bit longer. I'm adjusting that at the moment.

[Hashiboy in reply to FancyPants54]

Hi and thanks again FancyPants54 good luck to you too getting that dose balanced. Really get what you mean about small changes. When I was on levo I was pretty unwell and a small increase could wipe me out. I could see a pattern where a dose change on levo never fully settled until about six weeks. Take care and hope the changes really help.

[FancyPants54 in reply to Hashiboy]

I had hoped I could go T3 only, but my body was no happy with that idea. I got down to 25mcg Levo and 60 T3 and felt horrible. I seem to need a bit of Levo. I'm just being ultra cautious not to go too high on it. Only increasing by 12.5 mcg a time now.

[Hashiboy in reply to FancyPants54]

Yep, dosing is so personal. I was once out on 87 levo and 20 T3 felt great for a week then could barely wake up. Felt miles better on 20 T4 and 40 T3. TSH, T3 pretty identical both times so no clue there. On 50mcg I'm just about ok but asi posted 60 gives we a sky high pulse and the shakes..... If you find the magic formula be sure to post here 😀