Hi there, following on from earlier posts about getting to grips with T3 I’m stuck!
I’ve being trying to get a good balance of T3 and levo for about six months but each time I start to feel better I eventually start to crash and get fatigue, slow thinking and muscle pain. After eight or so weeks on 112.5 mcg levo and 10 mcg T3 I’ve gone from feeling really improved to starting to crash again. It seems like the T3 leads to reduced T4 levels in my blood that leads to a slow return of hypo symptoms. I’m feeling a bit low and wondering if it’s time to jack in T3 and go back to levo only (as imperfect as that was at least its predictable).
Latest results on 112.5 mcg levo and 10 mcg T3 are
TSH 0.05
T4 14
T3 5.2
I Have an endo appointment in two weeks and they’ll insist I get TSH back to 0.1
On 125 levo only I get TSH 0.93, T4 16.3 and T3 4.5 but just can’t get T4 high enough on a T4/T3 combo.
Results so far on T4/T3 combo ….I end up crashing eventually on each dose combo as my body just wont work on T4 below about 16 .
I take T3 only because whenever I take any brand of levothyroxine I start to itch from head to toe. My T4 is, as a consequence, very low but there’s nothing I can do about it.
We need reference ranges please to make any sense of your test results. Can you please post them like this for ease of reading them, eg
TSH: 2.5 (0.2-4.2)
FT4: 15 (12-22)
FT3: 4 (3.1-6.8)
It took me an awful lot longer than 6 months to find the doses of Levo and T3 that I needed to get my levels where they suit me best (probably nearer to 2 years, but I was also working on optimising nutrient levels and addressing adrenals too). I now know that I don't function well if my FT4 is less than 75% and I also need my FT3 at around 75% too. So it would seem that further tweaking of doses is what you need - just change one at a time though otherwise you wont know which hormone is making the difference. (I self medicate with T3 so don't have to please an endo.)
I agree I need to get T4 up but think the endo will just pull the plug on the trial due to low TSH.
So if the endo doesn't know what results will look like when taking T3, then he has no place to be prescribing it and pretending he understands how to treat hypothyroidism.
Taking T3 will lower, usually suppress TSH, it's just what it does.
My TSh was suppressed on Levo only, now I take T3 as well as Levo my TSH comes back usually as <0.005 or <0.01 or <0.02 depending on who does the test. My GP doesn't like it, but we keep having this never ending conversation where she tells me I'm overmedicated because my TSH is suppressed and I reply with "But look at my actual thyroid hormone levels, FT4 and FT3 are in range so I'm not overmedicated". But she's a TSH robot so she'll never be convinced, nor will I ever lower my dose. It's a constant battle of wills so I avoid her like the plague and see the Advanced Nurse Practioner who actually understands.
Thanks for the reply Susie, I'm thinking of increasing my T4 to 125 but will have a battle on my hands unless I go down the drug medication route. And you are right, the endo I see is a locum covering for the very experienced endo I initially saw. From my experience so far I think he will be very much lead by TSH. I'm going to have to have a think about what next.
How did you manage to get both t4 and t3 to 75%? My ft4 was 78% thru the range but ft3 only 45% so I added very small amount of t3 - 2.5 mcg and that brought my t4 down to 43%. Massive dive with such a small amount. I feel better with the t3 but would like to keep healthy level of t4 too. Its nice to hear it took you longer to find the right dose. I feel like I can't get it right and it takes for ever.
It was just a case of adjusting dose. I was on 100mcg Levo and 31.25mcg T3 at the time. Because my FT4 was, at the time, 75% through range, and it was suggested here to reduce Levo by 25mcg, I did so but that made my FT4 plummet to 8% through range and I was very unwell. So I increased Levo back to 100mcg and it took a year for my FT4 to climb back to 75% through range. During this time I had to change brand of T3 which didn't help, then managed to get a supply of my original brand again so changed back, and it took a further year to find the dose of T3 that I needed to go with the dose of Levo that suited me. It has been a long and frustrating journey!
Long and rocky road indeed! A year for the levels to go back? I thought it takes 6 weeks to stabilize? Maybe I should stay longer on my current dose. I once increased my levo from 112.5 to 118 and t4 went from 17.5 to 19.8. I would assume my body wouldn't even notice such a tiny change. I need to settle on one dose and give it time. Thank you : )
I suggest you need more T3...mine is slightly above what is considered by medics to be the definitive range...or that meaningless word "normal".
They forget about clinical evaluation and focus on numbers which are not always the answer!
I monitor heart rate and basal temp at least twice daily to avoid overmedication....it takes only minutes to do.
Recovery can be a long slow process, it cannot be rushed - the body needs time to adjust after each small increase/adjustment.
Over the year or so that it has taken me to find the correct dose I've had many set backs but sheer bloody-mindedness kept me going because I was convinced there was a solution....and my confidence to do that came from knowing I had first class support here.
Maybe less levo with more T3 would be worth trying.....but slowly until you are no longer "stuck"
Thanks for the reply. It really helps to hear experiences like yours when things get stuck. I'll have a good think and review my results at each dose to get an idea of what next. I had a great endo who was very well informed and very collaborative. Currently seeing a locum who is basically all about TSH and zero advice on dosing or symptoms.
I’ve being trying to get a good balance of T3 and levo for about six months but each time I start to feel better I eventually start to crash and get fatigue, slow thinking and muscle pain.
This is a perfectly normal process. You feel well on an increase, and then the symptoms start creeping back in again. It just means you need an increase in dose. The difficulty is deciding whether you increase the T3 or the levo. You say you can't feel well with an FT4 under 16, but was that with or without the T3? If you need your FT4 at 16 even with T3 added, then increase the levo. Otherwise, just increase the T3 by 5 mcg.
The problem is that endos are often just too scared to keep increasing the T3 until it's high enough to make you well, when they should be judging by results, rather than the size of your dose. But, you need what you need, even if it is higher than their other patients. Your FT3 isn't much over mid-range, so you have plenty of room for an increase.
Stopping the T3 completely just because you can't find the right dose, is like having a temper tantrum and throwing the baby out with the bath water. Don't let him do it!
Thanks greygoose, I think I'm the one ready to throw a tantrum! I thought I was getting better now skidding back to feeling hypo. I do actually feel mentally sharper at times so not all bad. I definitely need to increase something, maybe upping T4 to 125 and sticking on 10 T3 might help. I'm pretty sure the endo will veto that as he'll focus on TSH. Thank you again for your kind and swift reply,
That's one of the reasons we're better off without endos.
If you have been hypothyroid for a long time, you could suffer from adrenal fatigue, a condition not uncommon in hypothyroid patients although most doctors are unfamiliar with it. Without sufficient cortisol, the body may not be able to handle adequate levels of thyroid hormone, especially T3 which is more potent than T4.
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Thanks that's helpful. I had low morning cortisol when tested 2 years ago but a 24 urine test came back normal range so not sure if I should follow up again?
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I think it would be a good idea as your cortisol levels may have changed since then. Do you know if your cortisol levels in 24 h urine were just "in range" or "optimal"?
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Think in range
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Ok. Many doctors only look at that, when they should be looking at optimal levels...if you have new tests, can you get a copy of your lab results?
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Thanks, I'll ask for a new test
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Good luck!
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Thanks
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It would be interesting to know if anyone here knows what optimal cortisol levels in 24 h urine should look like, as opposed to in range levels...
Hi there. Yep I dropped from 130 Levo to 75 when I added 20mcg T3, that was the endocrinologist advice. Slowly increased Levo back to 112.5 and T3 to 10 in response to returning fatigue.
I’m becoming increasingly unsure about the drop in Levo before adding T3. The reason we add T3 is because we’re so poorly to begin with. I think the ‘professionals’ are just guessing. It’s like the blind leading the blind. A drop from 130 to 75 was insane! A 25mcg drop is bad enough. I’d rather stay at the same Levo amount and add T3 slowly to get where we need to be. ESP if we’re shown to be converting well or not but converting
And I think that when we are too cautious we can put our bodies in freefall. Although I agree being too aggressive can be just as hazardous but overall your endo has been far too cautious. Have you tried upping your Levo to 130 again?
Hi Paula, yes I found out the hard way. I was great for a few weeks but when the drop to 75 took effect I was floored with fatigue worse than on T4 only.
I found this too. I started on T3/4 combo in March. I felt fab initially on 125 levo and 5mcg T3. Endo wantedme to drop to 100 (from 175) but I knew this was too much for me. A few weeks in I felt awful. Knowing it takes me a long time to adjust to a levo dose (12-15 weeks!) and thanks to this forum I knew this might happen. I stuck it out and I felt better again a couple of weeks later. Ive been finding though that each increase lasts a few weeks (2, maybe 3) and then I need to increase again. Its just dawned on me typing this that maybe this is a T4 thing 😳 - maybe I’ll be readjusting again!
I’m finding it hard to stick it out for 6 weeks or so before doing bloods.
However, I last increased about 2 weeks ago so I’m determined to stick it out this time and check bloods before I change anything. I’ve had no “over” symptoms though.
My T3 on last checking was about 5.2, and my T4 was 18 using the same ranges as you. Given my increases I’m not sure what to expect from new bloods!
I guess what I’m trying to say is keep trying. From reading lots of others, seaside susie included, it can take a very long time to find your sweet spot. You’re actually further down the road than me but I’m determined to make this work for me!
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