I knew I’d be back before too long as I’m totally useless when it comes to introducing T3! Bit annoying as I obviously need it. Here are my results when I was on 87.5mcg Levo daily with no T3.
TSH 0.007 (0.27-4.2)
Free T3 4.1 (3.1-6.8)
Free thyroxine 23.1 (12-22)
Over the last couple of weeks I’ve effectively been faffing about by changing things and now not sure which way is up. I started off by keeping my Levo the same (87.5mcg) and introduced 2.5mcg T3 for a few days, then another 2.5mcg (10 hours apart) held for a few days, then introduced another 2.5mcg T3 and held that for a week before changing the am dose to 5mcg so I was then on 10mcg T3 in total. Somewhere in that, pretty early on, I reduced my Levo from 87.5 to 75mcg.
To start off with, I started to feel better but once on the full dose of T3 for a day or so I got really severe headaches that were unrelenting and lasted all day. I reduced the T3 back down to three sets of 2.5 T3 and the headaches went but then found I could hardly get out of bed in the morning and just felt hungover and couldn’t wake up all day. Just like a zombie waiting until it was bedtime again.
I tried reducing the T3 again (so 2x 2.5) and this didn’t help and wasn’t very smart but I was trying to work out if it was too much T3 causing brain & energy death. I then tried upping my Levo slightly by 6.25mcg so I was on about 81mcg but that made me feel totally awful so I’m now trying 75mcg Levo and 5mcg T3 am and 2.5mcg T3 10 hours later. I’m wondering now when I got those awful headaches in the first place that I should have kept my T3 the same but dropped my Levo further i.e. to 69mcg.
I think I should probably try staying on 75mcg T4 and perhaps three sets of 2.5mcg T3. I just need to find something that’s tolerable for six weeks before retesting. If I feel terrible on this, the only thing I can think of trying is reducing my T4 to 69mcg as I said above. I’m so cross with myself but when your symptoms are intolerable, I try to make changes to understand the cause.
Any words of wisdom greatly appreciated but wondering if I’m a lost cause to be honest!
xxx
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TiredMummy
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When I make adjustments, I need to do this super slowly as I get adverse symptoms otherwise. With Lio, I started at 2.5mcg and didn’t raise to 5mcg until well tolerated. It took me several months to get to 10mcg. However, other members seem to be fine with adding 5mcg in one go.
I’m on Thybon Henning. Perhaps I need to introduce T3 more slowly. I’ll just have to see how I go but I’m not sure what you mean when you say you waited until the T3 was ‘well tolerated’. I don’t get palpitations, increased heart rate or anything like that. How did you know it was time to increase it out of interest?
Different people get different adverse symptoms (yours could be the headaches you mention). It’s very much trial and error to find both a dose and timing regime that suits you. I prefer a split dose of Lio (taking 2/3 with my Levo in a morning) and 1/3 in an afternoon (when I had a ‘slump’ in energy). However, others prefer to take it all in one dose.
bless you this twiddling is such a laborious process isn’t it.
I would stick with 75mcg T4 for at least 8-12 weeks before making another change.
I had a similar issue with FT4 going over range when i introduced T3.
I’ve read here and have come to agree that it seems some of us have bodies that don’t know what to do with T3 and it takes aaaages to up the levels.
Once you are settled on the 75mcg T4 test again, then decide what to do about T3 changes. Change one thing and again stick at it for 12 weeks even if initially you feel a bit weird, it does settle.
Also, as Buddy195 says brand can make a difference, on Roseway compounded I was all over the place going from 5mcg to 7.5mcg, on Thybon Henning I’ve gone 5-10-15-20 over months and months, I split morning and afternoon.
Thank you, yes I think it’s wise to try and stick to 75mcg T4 and try and get through the next couple of months. I’ll just have to go steady with the T3 as well. I’ve no idea if it’s best to take my am T3 dose at the same time as my Levo or take my T3 slightly later.
When Ive made changes in the past - I stick to it for 6 weeks.
No matter what the volatility of the symptoms.
I do this because:
- I have now experienced that weeks building up to 5-6 are the worst. Then magically at 7, 8 and more so at 9, everything settles.
- Even if you are on the dose that will ultimately be right - you can’t truly judge that earlier than 6 weeks.
In my opinion, just dropping your Levo could explain your symptoms. Here you are at week 3… 3 weeks of compounded 7-day half lives that’s just hit.
Ive just increased my Levo by about the same amount at this point (just in week 4). Nothing else different .And I’ve had insane fatigue, have completely lost a couple days in the past weeks to complete dysfunction.
But I am going to hold the line for the full 6 weeks… no it’s not easy, but at least at the 6 week mark I will have sound data for a sound decision. And yes - it’s ridiculous and unbearable the symptoms that we have.
But switching things up too soon may help… or it may not… but in any case you’ll never know what helped or made things worse. And then what will you do!
When I started T3 the doctor made me stop taking Levothyroxine for 6 weeks, then he started me with 5mcg T3 in the morning. After a few days it was 5mcg in the morning and 5mcg at about midday. After a few days another 5mcg in early evening. It then went on to 10mcg in morning, 5 midday and 5 early evening. When I got to 10mcg in morning and 10mcg mid day, I worked up like that until I got to 20 mcg in morning and 20 mcg mid day, but could not take any in evening. That became my optimal dose of T3. Then he added a small amount of T4 in the morning, but I then had to wait 6 weeks before increasing it. It did take time but the transition from just levothyroxine to both T3/T4 went very smoothly. It took a whole year before I woke up one day to find I had been great the whole week. As I had been increasing a lot of my symptoms were decreasing. I started off with a day a week feeling normal, then as time went on it was a few days a week, and then that wonderful day it was every day. My personal optimal dose ended up as 40mcg of T3 and 100 mcg of T4, which I took all at once, first thing in the morning on an empty stomach. That was about 23 years ago and I changed my dose in the last two years to 50mcg of T3 (they no longer do 40 mcg tablets) no problems. Then I decided to take what my GP prescribes which is 150 mcg of T4. Again no problems.
That’s really interesting, thank you for sharing that. I personally couldn’t stop thyroid medication for 6 weeks….id be in a coma but glad it worked for you 🙂
As it seemed levothyroxine wasn't doing very much for me, when I stopped it for six weeks I felt no different , I was already feeling the worst I could be with the T4 lol
For comparison I used to be on 150mcg of levo. My Endo dropped it to 85mcg a day whilst slowing introducing 20mcg of T3. I am now happily settled on 75mcg of levo and 20 mcg of T3.
It takes about 6 weeks for changes in levo to settle, whilst T3 can be a couple of days. I would concentrate on getting your levo stable and then start again.
I can sympathise with you and your struggles. I'm trying to do the same introduce T3. I am a poor T4 converter and went private to get a script for T3. This was for Thybon Hennig 20mcg from Roseway. I've tried 5mcg twice a day then down to about 2.5mcg - though cutting 20mcg down is not easy with crumbly tablets. I've been trying this for about 4 weeks now.
I was taking 119mcg Levo, but reduced this to 100mcg and even missed out the odd day, but that was no good. My side effects are chest pain in various places and feeling generally rubbish, though initially I had more energy.
I've now decided I can't have 6 weeks or so of this so have decided to revert back to 119mcg T4 only, where I was OKish, just lacking in energy. I am considering NDT, but don't know where to get it.
It may be that 2.5 mcg T3 is ok for acclimatising your body to the drug, but not enough of itself to have an effect. Paul Robinson in his book “Recovering With T3” talks about “a threshold level that had to be exceeded before any real benefit was experienced from the hormone” (page 135). I trialled a sustained release T3 and found it sent me very hypothyroid again - I suspect the drip release of T3 wasn’t enough to get through the barriers that it has to go through to get into your cells. Back to the same dose but in split doses of 5 mcg T3, I can now feel the effects of it - a big difference.
it’s many years ago now that I tried adding T3 to my levo , after a decade of levo only, because I was obviously a poor converter: on 133 mcg levo my FT4 would go a bit over range but FT3 at the bottom of its range, TSH suppressed. I had reduced the levo.to get a good FT4 level to 75 mcg, then DIY adding Tiromel 25 mcg, at 2.5 , almost crumbs, just one a day and immediately felt heart going and loosened up hips/ pain…very weird! Adding extra 2.5 mcg of T3 took more like a week/s than days, and did my first bloods on full T3 tablet after being on that dose 8 weeks later. All Frees had gone down: FT4 almost halved, but FT3 also reduced, so naturally levo.put back up…. Adding T3 is a very slow job, try to be patient and stick to altering either T3 or T4 at a time, but just a tiny bit…
Hi. Reading through what you've been doing I would say that you have been introducing the change of dose of T3 too quickly. You started off with a nice low dose then a few days later you introduced another 2.5mcg of T3 , then increased your dose to 10mcg per day and dropped your levothyroxine dose. This has All been done in days !! You really should have let your body get used to the t3 slowly. You really should be giving your body a new dose every 8 weeks really . When you reduce the levothyroxine - yes you are right to reduce to 75mcg when T3 is 10mcg. But please give your body a chance to recover and process the T3 and T4 properly. The headaches are possibly due to the rapid change get in doses.. May be start at the beginning - jeep at 75mcg and 10mcg per day for 8 weeks. Then Increase if you need to to 15mcg. I take 20mcg T3 split into 4 x5mcg per day. My levothyroxine dose is 75mcg during winter and 50mcg during summer. See how you go , but do it a bit slower. I hope this helps you out.
That sounds like hard work. When I could get it I was on 75mcg T4 and 25mcg UniPharma T3. Now on Armour 1.5gr x 2 and feel normal. In Somerset endocrinologists can now prescribe up to 10mcg on NHS. But that would have been too low for me. Should you be fiddling with your doses without medical assistance? Ask GP to see endo and take Armour if you afford it. Will have to be private. About £390 for 1.5 x 100 I think. Or get on a plane to Rhodes or Crete. See a doc, get script from him, buy UniPharma at 2.5 pack and get Greek pharmacy to post to you. Disgraceful that NHS docs can't prescribe T3.
It is often key to reduce the T4 dose when adding T3, elsewise, the total thyroid med may go too high (leading to many issues including, sometimes, headaches). This is especially true when overall thyroid status is *already* high (i.e., high free T4 and low TSH, as in your "pre" labs), and conversely, it's not as essential if one's thyroid status overall is low and so a bit of T3 could be added without pushing thyroid hormone levels toward the thyrotoxic. A few additional nuances include half life and potency; T4 has a longer half life in the body, and so ideally, the T4 dose should be lowered *prior* to adding the T3, so that the body's T4 stores may decrease some. Potency is another important facet: T3 is usually about 3 to 4 times as potent as T4 in its TSH suppression ability, microgram per microgram, and so lowering the T4 dose by 3 to 4 times as much as you are adding/raising T3 can help keep your TSH about the same while transitioning from T4-only to a T4/T3 combo. In the specific case of adding 10 mcg of T3 per day, then, you might reduce your T4 by around 35 mcg, down to say 50 mcg, when adding 10 mcg of T3. Slow (gradual, small changes) and steady (allowing time for said small changes to accrete and manifest fully) wins the race. All the best.
I experienced a headache and inner heat when I first introduced T3. These symptoms lasted two or three days before disappearing, only to reappear after each T3 dose raise.
I have read of others experiencing the same. The trick is to raise slowly (as you were) and never raise until these temporary side effects subside. If side effects continue even with no dose raise, then it’s worth reducing to previous dose for a while before trying to raise again.
Should side effects continue or further appear, it’s worth stopping and supporting cortisol levels first. Also ensure iron is adequate.
I think with FT4 nearly top of range, you should reduced Levo dose further to allow room for the T3. As it is not only were you introducing a hormone you were deficient in but likely over medicating yourself. It’s a lot for the body to deal with.
Hi! Your story sounds similiar to mine in that I too suffer from severe headaches. One episode lasting over two months, constant and severe. It didn't matter what I did, it persisted, and nothing helped. It was an awful time. I differ in that I take NDT, but difficulties occur when starting new batches or different NDT types. It could well be the T3 component to blame. I've tried synthetic T3 in the past, but could only tolerate 5mg in total, not enough. The NDT T3 seems more tolerable but can cause issues if doses need to be raised. I am just starting a new type of NDT and trying to get the right dose. I too are having a very muggy head today, as I tried to up the dose. My conclusion for me at least, is to restart at small doses and build up very slowly. T3 seems more difficult to tolerate than T4 even though good levels of T3 are needed. Perhaps, stop the T3 all together for a week, see how you feel, then reintroduce it at the smallest dose you can cut and keep on that for a week or so, see how you feel, if ok, then add a tiny amount more until you can gradually build up or stay at the tolerable level. The key I've found is tiny and slow! This is the only way that I can do it. It's a pain for NDT users as batches differ, at least with synthetic T4 /T3 it's consistent, so you should only need to do this once. Worth a try! All the best!
Thank you for the response, I’ve had amazing responses from so many people but struggling to respond to all at the moment as I feel so ill. I think I will keep the Levo at 75mcg and stop the T3 for now, I will see how I go but when it comes to trying T3 again….i think I’ll literally try crumbs to start! Some folk on here do better if they introduce T3 fairly swiftly (and worse if they do not) and I now know I’m not one of those people. I think I might be in for a rough ride but then it’s been like this for over 13 years so may as well carry on and hope one day I start to feel better.
I really do hope that you can find the medication and dose so you can feel better. Absolutely nightmare I know, especially when we're just expected to get on with things as normal and push through the pain and tiredness. I am still trying to sort out my medication too, but we have to live in hope that there's light at the end of tunnel 😀. Wishing you all the best as you seek wellness!
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