I've been on T3 only medication since the end of November. Dosage of 50mcg per day split over 2 doses.
I've just had a blood test, and results show my T3 is now quite over the top of the range, which I'm a little concerned about. My TSH is under the bottom range, but has been for a long time now (ever since I first introduced T3 alongside T4 medication), so I'm not worried about that. T4 results through the floor, but then as I'm not taking any levothyroxine that's hardly surprising.
Results:
TSH 0.02 (Range 0.27 - 4.2)
T4 <1.3 (Range 11.9 - 21.6)
T3 8.1 (Range 3.1 - 6.8)
I had my last dose of T3 medication at around 10.15pm the night before the test, which was at 8.15am. Fully fasted for the test.
The last blood test I had was in July 2022, when I was on 100mcg T4 and 37.5mcg T3. Results are as follows (ranges same as above)
TSH <0.01
T4 11.5
T3 6.4
Between early July and late November I slowly lowered my levothyroxine dose until I was off it, and slowly upped my T3 medication from 37.5mcg to 50mcg. This process was done slowly, only changing one thing at a time, and I've been stable on 50mcg of T3 since the end of November.
I wanted to get rid of the thyroxine completely as I'd felt so awful on it when I took it at the start of my underactive thyroid (caused by Hashimoto's) journey. From 25mcg right up to 150mcg I felt awful, like a zombie. I didn't get any improvement in this until I started adding some T3 medication in, so I thought maybe I'd do better on T3 alone. I'll be honest and say I've not really noticed any difference in myself from when I was on 100mcg T4 and 37.5mcg T3 and now when I'm on 50mcg T3 only.
My T3 medication is prescribed (after a long fight and an even longer fight to get the GP to continue with the prescription). I haven't seen the endocrinologist since July, so they knew (and prescribed) the 100mcg T4 and 37.5 T3.
My GP was so concerned about my T4 result that she phoned me when it came on, at which point I told her I wasn't taking T4 medication at all. She insisted I go back to the endo (which is fine, I was supposed to have a follow up appointment, and weirdly one came through after that call even though she said she was going to leave it up to me to call the secretary and chase it up).
Anyway, apologies for length of post, I'll do a TLDR!
TLDR - if on T3 medication only, do we still need to ensure that T3 stays within the upper range? Mine has now gone to 8.1 when top of range is 6.8, is that problematic and requiring a lower dose?
Many thanks to anyone that can offer any advice.
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Fluffysheep
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Sorry SlowDragon, didn't think to put all that stuff.
I wouldn't have considered splitting my dose into 3, as that's not what I do normally. I wanted it to be accurate to my normal routine, but are you saying that I shouldn't have done it that way? Ever since starting T3 I've made sure that my last dose of it was 10-12 hours before my blood test, as that's what I always seen written on here.
I'm gluten free, and have been for almost 3 years now. Not dairy free - I'm vegetarian and just feel as if it would make life too restricted for me, so haven't tried it.
Always get same brand of T3 at each prescription.
I supplement with super B complex (wasn't taken for about a month before the test as I was on holiday and didn't take it away!), vitamin D, magnesium, selenium and methyl folate. None of those have been tested since Jan 2021 (except serum ferritin) according to my spreadsheet (need to double check this as I thought they had), but all the levels were really good and in the upper part of the range (supplements really helped all of the levels to rise). Serum ferritin was tested in September 2022 and was 77 with a range of 13-150. Again, this was much improved from what it had previously been (almost doubled after taking methyl folate supplements).
It depends on your reason for taking T3-only...but it looks as if you have exhausted the levo route first, Understood....been there!
The bottom line is that you need what makes you feel well and it looks as if you are not there yet.
There should be a 12 hour gap between last dose and test
Your result may have been a little higher with a gap shorter than 12 hours.
I no longer test, instead, I monitor by signs and symptoms as done before tests were developed.
But I'm not working with an endo.
On T3-only testing becomes less significant....the tests were not devised for T3-only
Your TSH and FT4 will drop....possibly considerably, that's just how the body works.
With your latest results medics begin to panic...and that is where I went rogue and decided I had to self medicate.
Not something I would suggest lightly because it comes with it's own difficulties....source of T3 for a start and no NHS support.
it is absolutely the last resort after all other options have failed
50mcg is a fairly large dose but you say you feel little difference
Just maybe you have a form of Thyroid Hormone Resistance which if the dose is inadequate results in low cellular T3....and symptoms.
There are no tests to measure cellular T3.
For most people FT3 over range indicates overmedication but for the cohort with a form of RTH they mostly need a higher level.
I currently take 100mcg T3 in a single dose at bedtime.
My FT3 will be over range because that is the measure of T3 in the blood. ....not the level in the cells where T3 becomes active. My resting heart rate is 65bpm ( I use a FitBit ) and my heart is healthy(scan), I have no hand tremors or other signs of overmedication
It's a complicated issue and one which medics are unlikely to embrace so we are left to work things out ourselves. I'm very fortunate in that my GPs eventually accepted my decision and don't get involved in my thyroid treatment.
And very unfortunate in that I ( and others like me) have to fly solo!!
I cannot advise you...all I can do is share my experience. What you do with that information is up to you
My journey is recorded in my bio if you are interested.
Thank you, I'll have a good look at what you've linked.
I've got no doubt that my endo will have a fit when I next see him (the appointment that came through is for May). He was already very unhappy that my TSH is and has been below range for a long time, but fortunately that didn't stop him finally giving me a prescription. Obviously because I've not seen him since July, he doesn't know I've 'gone rogue' as you put it, and upped my T3 and got rid of the levo completely.
I really thought that getting rid of levo and upping the T3 would help me feel better. It hasn't (I don't feel any worse, just feel the same), and I kind of feel a bit stuck as to what to do next. I had been thinking of upping at after my blood test to around 60mcg (but slowly, not a straight 10mcg increase), as I've read that in general, 60mcg is about as high as you should go. But the high T3 result has scared me a little bit, hence the asking for advice.
It's possible I've got what you suggested, but without a test for the thyroid hormone resistance it's hard to know isn't it?
Other than going dairy free, I've tried everything else that's ever been suggested on here, and nothing seems to have much of an effect, other than when I first added T3. I'm definitely improved from how I was when I was on T4 alone (I am NEVER going back to that), but it's frustrating that I haven't had the marked improvement I'd hoped for. I'm gluten free (eat as if I was coeliac, so no cross contamination), I supplement and have really improved all my levels, I've gone on to HRT as thought maybe some of my symptoms were down to me being perimenopausal, but to be honest, I still feel pretty awful. Tiredness, brain fog, joint pain (I walk with a walking stick and use a wheelchair on days out) and breast pain for most of the month are my worst symptoms. I've got to the point where I wonder whether it's actually anything to do with my thyroid at all, and is actually something like chronic fatigue syndrome or even fibromyalgia or something else.
GPs really don't care about symptoms, they only look at your numbers (and they certainly don't care about T3 levels in general, although I guess my high result for this test may make them extra jumpy which is why they want me back at the endo asap). My endo is similar, I think I just managed to wear him down enough that he gave in and finally gave me a T3 prescription! It also helped that I'd been on it for a long time prior to seeing him (self sourced buying over the counter in Greece). I don't want him to panic either and stop the prescription.
It's a frustrating situation going round in circles trying everything I can to make myself feel better, when nothing really has helped other than when I first added T3 in.
Anyway, thanks again. So sorry for long reply, and I'll go and read what you've linked.
The only test for RTH is a genetic test to identify a mutation on the beta thyroid receptor gene....this is a very rare form of RTH. I'm not even sure it's done in the UK
Genetic RTH involves elevated levels of FT3 and FT4 and non suppressed TSH level.
My endo flatly refused to consider RTH, in any form, because my labs did not follow that profile. Lovely man with very limited thyroid knowledge!
But...
RTH can be acquired rather than genetic.....mine must be the former
I read info from a thyroid expert that if I comfortably tolerated higher doses of T3 ( eg roughly more than 60mcg) then that was enough to indicate some form of RTH.
Medics basically are not interested and if they cannot fit us into the round hole they consider we should inhabit, then they look no further. Some of us are created to fit into a square hole but it takes an open mind to work that out.
Desperation pushed me into a leap of faith....the alternative for me really wasn't an option. I'm afraid only one thing drove me...sheer determination. I became my own guinea pig.....and I found the answers.
The highest dose I reached was 112.5mcg before I felt overmedicated....without RTH that may have killed me!! As some inactive T3 receptors " revived" i've been able to reduce my dose
The only advice I would venture to offer is to read as much as you can get your hands on .....then decide.
Anyway, I'm ranting again as is my way these days.
hello, i am 67 and have been very sick for many years ( Thyroidectomy 1994, 100 mcg T4, that was is. I tried everything to get better and found a private doctor who titrated me with T4 and T3, I felt better but not well. Maximum Dosis was 125 mcg Novothyral and 25 mcg Thybon. Sometimes T3 was over range, most times in the upper quartile. TSH since about 2020 <0.01, always commented on by GP. Last September I found out I had Dexa -2,4, next to Osteoporosis. Every doctor tells me it comes from the “overmedication”. Yet I never had Symptoms of that. Finally I got an appointment for a Parathyroidectomy April 3, 2023. I suspected having that disease for at least 5-6 years ( Calcium high, Parathormon high) but was always brushed off by mentioning my “ overmedication”. Now the adenoma has shown on Ultrasound and sestamibi Scan and will be removed. I am very curious and hoping that my bones will afterwards remineralise. I just wanted to remind you of this possibility, since the symptoms overlap pretty much. To find out, one has to have Calcium, Vit D3, and Parathormon ( EDTA Tube) in the same sitting, and possibly Calcium in 24 h-urine. All the best wishes for your recovery!
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