I recently reduced my T3 from 15 mcg per day (taken in 3 split doses) to 10mcg (5mcg morning, 5mcg afternoon) Levothyroxine is 100mcg per day.
My recent bloods are:
TSH 0.78 (0.27-4.2)
T3 4.02 (3.1-6.8)
T4 16.8 (12-22)
My reason for reducing the T3 was that I was feeling very jittery and had quite bad tremor, very early waking and not being able to go back to sleep, generally feeling unwell and weak. I noticed this peaked a couple of hours after my T3. I’m wondering if maybe I’m struggling to tolerate it? I’ve been on the trial since March and after a lift initially, the honeymoon period seemed to be over and I’ve felt back to feeling quite unwell and incapacitated by fatigue again.
I wanted to trial a small reduction in T3 to see the impact. My jittery feelings and tremor are subsiding and I’ve managed to sleep a little longer in the mornings now, which is a relief. However, I’m feeling very fatigued and have little energy to do anything. This is marked since reducing the T3 slightly, although I’d not had very much energy beforehand.
I’m intending to begin a trial of liquid Levo soon so was wondering if I should begin this at my current Levo dosage with a hope I may absorb more efficiently, or hold off on the liquid and tweak my Levo dosage. I’m just not sure what these bloods indicate so any help or suggestions would be gratefully received
My vitamin bloods are optimal in the top third- B12, folate, Vit D etc and my Ferritin has improved on last bloods.
If any one has thoughts, I’d be happy to hear from you! Thank you, as ever, for any help you can give.
Hi Butterfly1942, my best guess would be that you’re not taking enough t3 and should have increased, not decreased your t3 dose. If t3 is too high, then I have difficulty falling asleep but if it’s too low, I wake very early and can’t get back to sleep. Of course you may not be like me? If your t3 is too low and has been for a while you may be very sensitive to it, hence the jittery feelings. Bloods don’t indicate overtreatment.
T3 can be much more effective taken in a slightly larger dose, so if you do decide to go back up to 15mcg I’d suggest taking 10+5 in two doses rather than over 3 doses. ( See Paul Robinson’s analogy / description of waves hitting the shore).
I’d try and get the best result from t3 that you can before making changes to Levo as there is a danger you will feel very strange and not know what to do if you change both at the same time.
This is really helpful. It’s so hard to know what’s going on and I’d found the jitteriness really unpleasant. It’s interesting what you’ve said about the early waking as well as this does sound like me. It had crossed my mind whether to take 10 in the morning and 5 at lunch to avoid the later dose before I decided to do a little reduction. I’m concerned about his tired/ weak I feel as I’m not really functioning in these levels.
Thanks for taking time to respond! It makes sense not to mess with 2 things at once, as you say, or I’ll not know what’s doing what. I’m feeling very confused and feel I’ve lost my way with all this as I’ve been unwell a long time now. Thanks for the advice! I’ll look up the PR quote and read up on this too!
Your FT3 is very low which will cause the symptoms you describe.....undermedication can feel like overmedication which can add confusion!
The initial improvement would be the body reacting positively to the increase then after a time it realised that the increase still wasn't enough ...and symptoms returned A cry for help if you like!
It sounds as if you need more T3.....I very much doubt you are " struggling to tolerate it" though symptoms may make you feel like that. Instead, I'd say it's your body signalling that it needs more!
I need high dose T3-only (75mcg) to function and take my full dose at bedtime....splitting didn't work for me. Some of us need to medicate like this ( in very basic terms) to ensure the hormone is "pushed" into the cells.
The T3 must reach the nuclei of the cells to become active.
We only increase one thing at a time so that the body does not become confused by multiple changes.
In your shoes I would initially change T3 dosing to 2 x 10mcg doses.....timing to suit your daily routine and avoiding foo and drinks. I would leave levo as before at 100mcg....adding T3 will reduce FT4 and TSH in any case.
T3 is the active thyroid hormone and for good health must be available in a constant and adequate supply in order to continually flood the cells
Low cellular T3 = poor health.
T4 absorption isn't your problem ....low T3 is the problem!
Hold that suggested dose for at least 6 weeks then test again. You may not feel great for a while - that is the body adjusting to dose change - but stick with it.
Patience is a vital part of treatment.
So long as FT3 remains within ref range you will not be overmedicated....and yours is far from over range.
The next set of results on that new steady dose. will point to the way forward....post them for advice
It does sound like maybe I need to go back up as my T3 level is very low and around the mark where I felt very unwell when first diagnosed. There’s literally nothing in the tank energy wise and I can’t function so whilst I’m glad the jittery feeling has subsided, I’m not going to be able to function like this.
I’d felt as if I was overmedicated but as you’ve said I’m a long way off that. I’m wondering now if my tremor and jittery feelings are an undermedicated symptom then for me and I’ve been misreading this. It’s so hard to read what’s going on in my body at times
Thanks so much DD and I’m glad your dose is working for you and you’ve found your set point I know it’s a long road to get there so I need to be patient x
i don't think there is any doubt that you are undermedicated.....low T3.
We can experience the converse effect where undermedication feels like overmedication.....and vice versa. Been there! I guess this is what you have experienced.
Introducing T3 is a challenge which even most medics fail to really understand.....I think we need a degree of lived experience before we come to understand our bodies and how we react to medication. We often learn from within.... so listen to your body and give it time.
I take T3 alone but I follow the advice of one of TUK's Advisers. He stated that one dose saturated all of our T3 receptor cells and they then 'sent out waves' throughout the day. (I did trial this by taking one dose and none on day 2 or day 3 and I had no bad reactions.)
This brilliant doctor/researcher (Dr John Lowe) also had a dysfunctional thyroid gland as did some of his relatives but found a way how to restore his health through T3.
Unfortunately, due to a bad fall, it caused his demise.
Dr John Lowe took his dose of T3 once daily (when he awakened in the middle of the night) so that his stomach was definitely empty.). He was an expert in the use of T3.
I have recovered my health through his method but take mine when I awake with one glass of water and wait an hour before I eat. I don't need a high dose of T3. I feel well and am symptom-free.
I do wish the UK would prescribe T3 more willingly but due to its cost they don't.
I do wonder if I’ll end up trialling T3 only but it’s finding a willing doctor/ Endo to try. I’m very scared about branching off on my own just yet as I don’t feel confident in my health or decisions. It does seem like I ought to try taking it in either one or two doses. I’ve nothing to lose on this as I feel awful at the moment.
I’m so glad you are feeling well! It gives hope we can get our lives back. I will have a look at Dr Peatfield’s work as I’ve heard him mentioned in here. It is a shame there’s a taboo almost around T3 as it is a real option for everyone to trial if needed but you feel like you have to go to the ends of the earth to seek it out, or pay huge sums to private Endos to prescribe.
Such great advice on here, especially about only changing one thing at a time. In scientific experiments, a founding principle is to only change one variable at a time.
I went through ups and downs when upping my levo doses. I also kept a diary of when I took dose increase how long before I started to feel better, how long that lasted before symptoms returned and indeed which ones returned.
I cannot recommend this enough. The detail I was able to capture in a few lines, as and when I noticed something (not a daily dear diary). It was good writing it on a month to view. I could spread my months out and see it all before me. I could see as I worked up the doses towards optimal;
Time it took to feel better after a dose increase shortened.
Feeling of wellness period lengthened
Drop back to symptomatic slightly less severe each time.
I knew when I asked GP for dose increase and they said I was already in range, I could say, but room for a dose increase within the range (they never look at it like that). Unable to argue against my logic each of the 5 GPs I dealt with on my quest to optimal dose gave way to me.
My diary was an essential part of my evidence. I’m optimal doing well thanks to this forum.
Thank you so much for this advice. You are right in how helpful members are giving their time and efforts to help, yourself included
I did start a symptom diary with results and dosage etc but very much lost my way with it a number of weeks ago- not helpful but it coincided with me beginning to feel quite unwell again ! Your suggestions have made me think about restarting but with the detail you describe as mine was more general points and a score for health that day. I’ve also found I was trying to cross check against my blood results in a separate diary so it all got a bit confusing. What I should have done was when I had a period of feeling much better I should have had my bloods taken at that point as this could have been my preferred level, but an opportunity missed. I’ll remember to do this next time.
I’m so glad you’ve found your wellness and optimal dosing. It’s great to hear the positives as you do begin to think things are not going to change. Well done, too, for managing your GPs! It’s clear we have to be our own advocates in all this, don’t we, to get some control of our own health. I think I’ve been relying on my consultant to ‘get me well’ but he is more than happy with bloods in range, even if woefully low, and I think the big mistake was having my T4 reduced to introduce the T3. I don’t think this was necessary and effectively and it has added on months to crawl towards a decent set of bloods. I think my body needs time to catch up with my bloods now. It’s pretty worn out with all the change in the last 12 months, so I shouldn’t be surprised I’m struggling still.
Thanks so much Charlie-Farley for your kindness and advice x
might be relevant or not Im also on 100mcg and 10mcg T3 (split dose) and I was also having odd palpitations and just exhausted had Iron checked and I was anemic been on Iron tabs for about 3 weeks now and my palpitations and extreme exhaustion are gone.
I’m glad you got to the bottom of this and those symptoms subsided. I know my Ferritin has been low but it’s increased quite a bit recently and it wouldn’t mean I need to supplement. I did a couple of posts here to check as my gut feeling is something is not right with my iron. My GP said all was ok too so very confusing!
I had to pay for my own Iron testing since my doctor doesn’t react to anything I complain about…. She eventually did another Iron test which was a little better then the one I did couple of weeks earlier (I was trying to boost my iron) at that time with more meat … that was a struggle for me. Hope you get answers not fun feeling bad.
It’s good to hear your GP finally ran tests. It shouldn’t have to be like this, should it? It’s horrid feeling rubbish every day. Not like a normal illness where you get incrementally better. I think that’s what’s so draining, but you are right- I’m going to keep going and keep an eye on my iron as I’m sure something is amiss here.
Thanks Batty for sharing your thoughts. It really helps
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