I am trying to wrap my head around this. Several weeks ago my ft4 was 40%, ft3 59%. I actually decided to increase my t3 as increasing levo was giving me bad symptoms.
I have gone up from 112 levo 17.5 t3 to 112 levo and 20 t3 initially. My ft4 has gone up to 70% again, ft3 to 73%. Decided to up my t3 as I am still feeling very hypo (pain in arms legs, bloating, water retention plus many more). 4th day in on 112 and 22.5 and I am more hypo than ever! Tsh is always suppressed in case anyone wonders
Could someone shed some light? I am sick of looking and feeling like a Michelin man, it is very painful. I have gone from weighing 63 to 78 kilos in a year and eating healthy.
I know a few people told me before that not everyone can have a high ft4, some people need it low and my endo says the same (he always wants me to reduce t4 to 75 and up my t3 to 30 or 40...).
Also, can I trust labs, they almost never correlate with how I feel...
Thank you Murphysmum greygoose SlowDragon Hidden jimh111 diogenes
Hope you dont mind being tagged, I would like to see your opinion on this, please - really appreciate it!
Grey you are not sleeping yet! Same here, too hot in this weather. Thank you for responding so late at night
Apart from the swing, is it possible that levo gives me bad symptoms? I have water retention since I started high doses of levo last year. I have also noticed that a few times now my ft4 increases as I add t3, it is so weird. When I had hyper swing 3 years ago, I had mixed hypo-hyper symptoms, now just really bad hypo only, also tsh has gone up to 0.04 from below 0.01...so confused.
I had been asleep but woke up for the loo. Then thought of something I wanted to look up… I went back to bed after replying to you, and have just got up again. My sleeping is somewhat erratic since lockdown began. But it's not hot here, it's damned cold!
It's perfectly possible that levo doesn't suit you. It didn't suit me. It always makes me feel not quite right, and the higher the dose, the worse I feel. But, I don't know why your FT4 would increase when you add more T3. That is weird. I think the only way to find out if it's the levo that's causing you problems is to go T3 only. That's what I did.
Mixed hypo/hyper symptoms can happen to anyone as they work their way up to an optimal dose. The exogenous hormone isn't distributed evenly amongst all those cells, some get too much, and some get too little - or even none at all if the receptors are still switched off. We just have to hope it all evens out with time. But, as I said, beware of symptoms, because so many can be either hypo or hyper. The dividing line is very blurred.
It's not easy, I know. I've given up the struggle and self-treat. My last doctor knew nothing about thyroid - didn't know what T4 and T3 were - but was reasonably compliant with my wishes. When he retired, I couldn't be bothered anymore.
Oh dear, well at least he was compliant, but then I sometimes ask, should they not pay us for advice? I have seen all the other endos privately and I think they should be paying me for knowledge
I would say exactly the same as Scrumbler has said so well. NDT has worked best for me. Much better than Levo and Levo with T3 though its meant to be equivalent. Also my NHS Endo told me a lot of people cant tolerate Levo above 75mcg x
Interesting, thanks Michelle, my endo thinks the same, most people he treats can't have levo over 50 or 75 mcg..we might be onto something here..NDT didnt suit me ratio-wise, please see my response to Scrumbler below...
I would be tempted to trial your endo's plan. I believe that with a subnormal TSH (lower than it should be) there is reduced type-2 deiodinase (D2) and the brain is reliant on D2 for its T3 supply. With a very low TSH you need extra T3 to get enough into the brain (the brain will not be converting enough T4 to T3).
It's important to take half your L-T3 at bedtime. I find the bedtime dose cruical to getting good deep sleep. We produce 80% of our growth hormone (GH) in deep stage 4 sleep, GH is used to repair micro-trauma that occurs during the day. I find with good sleep I don't get aches and pains.
It may be that you need NDT, it seems that some patients need it. Hidden report is the first I've seen where someone has tried similar T3/T4 ratios in natural and synthetic hormones (not identical because of different absorption rates). It may be that NDT contains a substance that some patients miss. Another thought crossed my mind a few days ago, possibly NDT maintains antibody levels and TSH stimulating antibodies help - wild speculation but interesting.
thanks Jim, that does make sense, when I came off all meds 3 years ago, from when I was taking 3 grains of NDT, after 5 weeks my tsh was 0.01, had low ft3 ft4. I suspect that taking doses as high as 4 grains of NDT downregulated my tsh therefore deiodinases don't work, if that makes sense.
I have tried NDT for couple of years. I felt very good when I started it at 1.5 grain, but as my tsh was suppresing I needed more and eventually ratio was not good for me, tried it for about 3.5 years in total. I was hypo on 2 grains of ndt, on 3 grains I felt hypo and hyper, then on 4 grains I was overdosed. On 3 and 4 grains my ft4 was high in range and so was ft3.
Interesting enough, when I was increasing NDT at first, I was feeling great, but weeks after something was blunting this response so I wonder if that was the t4 compound in it.
I'm guessing, only a guess, that as we increase our dose TSH falls and this causes problems. So, we end up chasing our tails. It would be nice if a slow release TRH tablet was available so we could restore our down-regulated TSH.
Yes, I've studied this. I'd love to find a doctor who can do a TRH stimulation in an attempt to restore my axis. (I have blood tests from 1999 before I needed high dose L-T3 and my axis was fine then).
Similarly here, due to bad tweaking by my GP, my tsh has never recovered.
I will ask my consultant about TRH stimulation, he is very open to all ideas and maybe it is possible to have it done privately. I will also email my private lab to check if they know anything at all. Will let you know, but won't see my endo until November.
The lab doesn't do it, but I see that two local public hospitals do. I will talk to my consultant in Nov and will message you, take care and thank you for your help!
Unfortunately - due to False Statements made about NDT in the UK - so that it could be withdrawn from being prescribed - means that people who'd benefit from it can no longer even get a trial. They are forced to source their own.
What kind of people are 'at the top of the tree' who decide what should be prescribed to patients especially those who don't have an improvement on levothyroxine.
NDT was the very first replacement hormone given to patients - without blood tests - from 1892 onwards and saved lives from then on. Safety of it is proven.
Unfortunately, False Statements were made about it in the UK, so it also could be removed.
One of Thyroiduk's Advisers (now deceased) wrote the following to them and requested every year for three years for a response - they never did.
Why do those who make these decisions - obviously have never had hypo - can dictate what should be prescribed if patient isn't improving on levo. In fact I was much more unwell on it than before I diagnosed myself when TSH was 100.
Before blood tests were introduced we were given NDT - slowly increased until symptoms resolved. So NHS saved money as it was doctors who knew all of the clinical symptoms and we got a trial of NDT.
Thank you shaws, thankfully my endo has an open mind, I was on NDT for 3.5 years, he had prescribed it for me, but I didn't do very well on it, ratios were off it seems.
He is trying to convince me move to t3 mainly and some 50-75 mcg levo as most of his patients are doing well on it
Thank you SlowDragon! Do you think reducing to 88 mcg would be a big of a jump? It is a possibility. I am still planning to hold 112 and 22.5 for another week or 10 days, as I only increased from 20 to 22.5 about 4 days ago. Want to see if anything changes and want my body to settle a little. Do you think that is sensible or should I reduce straightaway?thanks as always
This is really interesting! We have a similar experience. I was improving with ft4 just under midrange, added t3 and suddenly both are high and feeling worse.
Okay, I think I will wait another 10 days max, let my body settle, and then drop levo to 100 at first, of symptoms come back after a few weeks, will drop to 88 and so on..
Your Endo sounds very sympathetic and is putting his patients first before guidelines. He is obviously aware that some people can only improve with the other options if they're not improving on levo.
I was forever in and out of the A&E cardiac dept with levo as I had the most awful heart problems and he was puzzled and was considering putting an implant in heart to 'see what was going on'. Just at that time T3 was added to T4 which resolved most of symptoms but taking T3 alone did resolve all of them and I felt I had oxygen in my body for the first time in ages.
Doctors seem incapable of knowing anything about a dysfunctional thyroid gland. Your doctor does seem to know how to treat patients.
In the past we were always diagnosed upon our clinical symptoms alone and given a trial of NDT. Why cannot they do that nowadays? It would save lots of money for the NHS if doctors knew about clinical symptoms first and foremost and then treated the symptoms with NDT or T4/T3 rather than levo alone. They would save lots of money on blood tests too and also save on consultations.
Why they withdrew NDT when it is a proven 'grandfathered' replacement and then they insist that T4 alone will do is unbelievable and through misinformation they have let down those who are suffering unnecessarily due to statements published, despite many patients recover on NDT. I suggest they get their thyroid glands removed and let's see how quickly they would change rules.
They give the impression that they are saving the NHS money(by withdrawing T3 rather than sourcing a cheaper one) but in fact the poor patient has to be prescribed more (usually anti-depressants rather than T3) and the professionals seem not to be interested in relieving the patients symptoms. Nor saving the NHS money as many patients have to be given 'other' prescribed drugs to try to relieve clinical symptoms. They're on a roundabout of trying 'this and that' but not what they need - proper thyroid hormones.
agree Shaws, the problem is that some individuals, I call them, businessmen doctors, profit from prescribing us antidepressants, statins, blood pressure pills, even supplements. They go on sponsored holidays by pharma companies, get incentives. Small guys like NDT manufacturers can't afford that kind of carry on. This is why I think public service can be worse than private. In public they want added benefits, incentives, in private - they get a lot of money from you anyway so they don't care. Of course, not everyone is like that at all. Then there is a group of doctors called 'should never be a doctor'who don't even know what's what and go the easy way. They don't keep up with researches etc they just are generic mainstream doctors.
Dr John Lowe (RIP) stated that it was due to corruption by the pharma companies who paid the professionals to prescribe levothyroxine. Of course the profits they also make through blood tests (doctors used to diagnose us by our clinical symptoms alone and they knew them all) keeps them happy.
Before blood tests we were all diagnosed upon our clinical symptoms alone and given a trial of NDT. If we improved we stayed upon it and doctors slowly increased dose until symptoms were relieved.
Scrumbler thank you so much x
I remember you were saying that you couldn't tolerate it at all.
That is it, I feel worse when my t4 is for some reason increasing in my blood, even though I have not chaned the dose.
I have also noticed that my trouble sleeping is from undermedication.
Thankfully my endo is more than happy for me to move more or t3 only direction. He says he has one patient on over 100 mcg t3 doing well, but most are on 50-75 t4 and 30-40 t3.
The plan would be to drop levo to 100 or even 88 to check if this gives me some relief. As ft4 for some reason keeps increasing.
I have taken NDT for 2 years, but the ratio didnt suit me for some reason once past 2 grains. On 2 grains I was very hypo, then I took 3 grains and felt just hypo and hyper, on 4 grains I started to feel overdosed. Then for another 1.5 years I have been trying doses between 2 1/4 - 2 3/4 grain and nothing has worked but what is interesting is that anytime I have increased my ndt I would feel great at first and then terrible. I wonder if increasing levels of ft4 were causing that after a while.
We did, and I chickened out and wanted to see how far I can push adding t3 on this levo dose 😇 we need to make new chats! Scrumbler, my runaway buddy😁
I have never tried t3 only, no!
I think adding t3 to your current dose could be a good idea. You said you felt very good on t3 only so this should work
I’m not sure if we’ve said before but it seems (this week being a point in case!) that I can only tolerate a very small amount of levo alongside my T3.
I feel like the levo gets to a certain point and blocks the action of the T3. Quite if that’s why I feel completely rubbish just now I don’t know but it would fit.
I used to be on a much higher amount of levo, ie 100mcg plus 10mcg T3 when I started. I’ve been reducing it down as my T3 has gone up and don’t yet seem to have found a sweet spot but I have felt a massive improvement on dropping levo down to almost nothing.
Just FYI really. As you’re well aware, I’m far from settled on a dose yet (much as I think I am, for like, 6 weeks or so!) but I just thought I’d mention it.
Thank you Murphysmum, this is very helpful. It seems that I do need to find the level of levo I will be tolerating so I will be dropping it from 112 to 75 in stages, and increasing t3 to keep it top level.
I remember you said you dropped all levo one day and felt a huge improvement. This makes sense to me!
I know, but you have gone a long way and improved, that is what matters!
Thank you, definitely need it same to you, best of luck and chat soon
I dropped down to nothing in stages, but only when I actually stopped it completely did I feel like a weight had been lifted. Or rather, the lead sucked out of my legs!
Yes, I have improved and we must all look back and remember how far we’ve come when we get these setbacks.
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Murphysmum greygoose SlowDragon Hidden jimh111 diogenes 
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