Hi, I've been reading posts on this forum a long time and learning lots about thyroid disease. I recently saw an endocrinologist privately due to having constant symptoms despite "normal" blood tests results. I asked him about a prescription of t3 and he said he could not give this to me privately or on the nhs but that it does help a small number of people and many of his patients buy their t3 from abroad. He said if I increased my levo I would be close to becoming thyrotoxic.
My most recent results are as follows from beginning of the month.
TSH 1.80 (0.35-4.94)
T4 18.6 (12-22)
T3 4.07 (3.1-6.8)
Folate 8.9 (3.1-20.5)
B12 603 (187-883)
Ferritin 67.8 (10-204)
I don't have vitamin D results as they haven't tested it despite me requesting, but I've been taking vit D supplement for 6 months. The b12, ferritin and folate are all much higher than previous results last year and due to me taking supplements.
I am not able to stand my symptoms anymore and after the endo app i ordered some T3 called Tiromel and have started taking it on Friday. The Endo said I would have to drop levo from 100 mcg to 50mcg a day, and take 5mcg lio morning and afternoon. I haven't dropped the levo as my T4 isn't that high in the range. But I'm now thinking maybe I should have. I took the first quarter of a tablet on Friday and had an instant "boost" but Saturday, Sunday and today I've felt so tired after taking it, and I just fell asleep on the sofa at 5.30pm which is not usual at all for me. I get very fatigued but not to the point of not being able to keep my eyes open. I've woken up feeling very shaky and like my heart is racing. I know its only been a couple of days and the heart racing/shaking may be normal but I wasn't expecting to feel this tired. Maybe I should have reduced the levo before starting after all? And i know i should have probably posted here before I even started the t3. Maybe i don't even need T3 and should have just upped my levo! Should I ride this out and see how I feel in a few weeks? Or should I change anything? I'm taking 100mcg levo and 6.25mcg lio at 6am, and 6.25 lio at 3pm. Thank you in advance for your help!
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Laiah
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What supplements are you taking to improve B vitamins? I benefited from getting key vitamins higher in range before increasing thyroid medication. The drop from 100- 50 Levo suggested by your endo seems very drastic. I’ve been on T3 for 6 weeks and reduced from 150-125 Levo for week prior to adding T3.
Hi, thank you for your response. I take vitamin B12, folate, vitamin D and ferrous fumarate. My levels were all alot lower at the beginning of last year, ferritin was down to 7! I've been trying to improve them for months. I know I should have waited until they were a bit higher than this but I was so fed up of the constant aches and pains I was having, the weight gain, the fatigue. The aching has almost gone and for the first time in years I wasn't as stiff as a board when I got out of bed this morning which is great! I thought a drop from 100mcg levo to 50 seemed quite extreme so thats why I didn't drop it. Maybe I should have dropped it to 75mcg for a week before starting to lio. I've been too impatient 😒 Just concerned about the sleepiness as it doesn't seem usual for others when starting lio and I definitely don't want to feel more tired.
I suffered with aches and these improved greatly when vit D, folate and ferritin became more optimal. I understand the ‘rush’ you feel to get better, but honestly it’s better to sort one thing at once, then you can monitor the effect of each. I tried to go gluten & dairy free at same time, which was in hindsight pretty silly, as I couldn’t work out which was beneficial (when I tried separately/ going GF had largest positive impact). My recommendation is to test your vitamins privately (I use Medichecks) and make sure they are optimal.
Yes I think you're right. I need to go back to the beginning and sort one thing at a time. Going gluten free seems to help alot of people. Its something I need to look into more as I'm not even sure what foods contain gluten apart from bread and pasta. I think I will come off the lio, get vitamins up to optimal levels and see how I feel then. Thank you.
I actually think, on those numbers, that they would have been better increasing your levothyroxine and don’t understand why they didn’t. Your conversion of T4 to T3 looks OK and there is plenty of room for more T4 and plenty of room at the low end on TSH. I assume I am right that your test is you on 100 mcg levo only?
Hi, yes thats correct, results are on 100mcg levo only. I thought the endo would suggest levo increase, and looking again at those results i think you're right, there is room for some more t4. I thought that T3 is usually better when its nearer the top of the range, and thought maybe i wasn't converting well. So thats the reason for trying to add some T3. Its so hard getting to grips with all this, especially when you can't rely on doctors to know what they are doing! There was a time when my TSH was 0.88 and my T4 was 20 and I didn't feel too bad then. The last 3 blood tests have shown my TSH gradually creeping up and T4 gradually dropping. I will stop the lio, work on vitamin levels and increase T4 i think. Do you think if I increased levo to 125mcg a day that would be too much? I'm not sure whether to alternate or maybe try 112 a day to start with? Thank you for your reply!
Assuming you were with the same lab/ were tested at the same place, a TSH of 0.88 would still be in range and nothing to worry about. The more T4 you have the better chance of converting some of it into T3, so in theory, that should rise with an increase in levo.
It sounds like you are having a very tough time with some crazy doctors! If it was me, I would be quite comfortable to go up to 125 levo and see what happens with optimising vitamins, because I think there is plenty of room and that you should feel better with a TSH under 1, as you did in the past. But I don’t consider myself at all expert, just to caveat, it’s just a “this is what I would do if it were me” thing.
Just to edit to say that I didn’t check your % through range on T4 and T3 to think about conversion. If you click on my profile you can see my posts. In early Dec I asked for help before an endo appointment and @SlowDragon responded with a link to calculate % through range on T4 and T3. T3 will usually be slightly lower in % but they should be fairly close. Optimal
Vitamin levels will help conversion, also. And I find a selenium supplement very worthwhile - it is also supposed to help with conversion.
Yes I feel completely on my own to be honest. GP doesn't seem to know anything about thyroid issues. It was a struggle getting levo in the first place. Been feeling progressively worse over the last year and getting desperate. Paid to see private endo at beginning of the month which has turned out to be a waste of money. I think I'm going to try 125mcg of levo, see how I feel and test everything with medichecks in 8 weeks. Will be good to see what T3 does with that dose. Thank you!
If you read my profile you will see that I too had a dodgy private appointment! It is just so desperate, isn’t it? I can quite understand you not knowing where to turn. I should have put my trust in the experts here sooner, but funnily enough, not being big in conspiracy theories or anything like that, I thought that medical professionals were a better idea than a bunch of strangers on the internet! It turns out that I was very wrong! 😂
I will have a look! Funnily enough, the endo I saw mentioned this site, and said stuff I would read here is simply not true 😂. I didn't even mention any forums or groups, but I felt he was definitely trying to get an idea of whether I had been doing much reading. I've always found doctors seem to hate us doing on own research, but can't quite understand why they seem to want us to stay ill! Why don't they want to help us
I've just read your profile, you really have been through the mill. Reading it made me feel emotional, I can relate to so much of what you say about your symptoms and experiences. Some bits did make me smile aswell 😊 I see you're on a t4/t3 combo now. I hope you will find the right dose and get your mojo back once and for all! Best wishes.
Thank you, that’s really kind! My current best guess is that I need another 25 mcg T4, but the tests will tell! I hope you feel better soon too. It’s one helluva ride, this thyroid business!
Folks often start by taking only one dose of one quarter tablet of liothyronine. Usually sticking on this dose for the first week and if all is ok adding a second quarter dose. So I would say you have started on too high a dose. Then if necessary adding a quarter tablet every 2 weeks.It isn't straightforward adding T3 to levo. Levo and liothyronine give you 2 doses to alter and with hormone interaction it is not always easy to see which dose to adjust and how to fine tune the hormones.
I would either drop one of the lio doses and leave things to see if they settle or as you have suggested above try an increase in levo and forget T3 for the moment. Either way you will need to give your body time to settle after the recent changes.
Yes from reading here I can now see that people tend to start on one dose a day. I went with what the endo said and went straight onto 2 doses a day, but also didn't decrease the levo like he said. I've messed right up by the looks of things! The huge crash I felt this afternoon made me realise that! Should have researched much more before I started changing things! Thank you for your help. People on this forum have so much knowledge, I think ill be spending more time here!
I'm in the same boat as yourself. I was on one dose of Levo for quite some time and tried to add T3 then tried to lower the T4 and I kept getting more tired. I paused the T3 and increased the levo by 12.5mcg. It will also put me over the T4 reference range but it does not mean your levels are toxic.
I still have bones that crack and some achy feeling and fatigue, cognitive issues, but I've had some improvement in the arm and leg weakness. My fingers no longer hurt either. It's only just been two weeks and I don't think that's enough time to give it. I'm hoping over the next 4 weeks T4 storage will build up which will result in more T3. At that point if I'm lacking in T3 and experiencing symptoms I may try to add small amounts of T3.
all your blood tests look fine except perhaps the T3 is a tad low. I would have left at 100mcgT4 and added in just 1mcgT3, or perhaps dropped T4 to 95 (just shave a whisker off the tablet) and added 1mcg T3. you tiredness sounds like you are hyper with too much T3 to me. For me 18 for fT4 is ideal..no more than 19. TSH could be a tad lower..fo me 1.1 is ideal. I have no idea why any endo would make such a great change in an ideal T4 dosage!
Thats the annoying thing. Test results look ok but symptoms say otherwise I cannot deal with the achy joints and muscles anymore, just feel so weak all the time. Thats the worst symptom for me, I'm 31 and feel more like 81. Interesting what you say about just 1mcg of T3. I wonder if that would be enough to make any difference to my symptoms?
it does with me. For your symptoms you need ESR, CRP anti-TPO and anti_TG antibodies at least.(they can do others). Did an endo do all of those.. and other stuff like LUpus? Rule out things like inflammation from somewhere and HE (if severe and extremely high antibodies)
No GP only did CRP, bone profile, liver function, full blood count, eGFRcreat,HbA1c along with thyroid tests and vitamins. Endo didn't ask for anything. The only thing that came back abnormal was eosinophil and basophils. Thats happened loads of times in the past though. They only did one thyroid antibody test when I was first diagnosed, which came back normal. But when I did private blood tests the other thyroid antibody test came back with antibodies over the range, but not by much. Endo said I have hashimotos. My sister does too but was diagnosed as a child about 17 years ago.
I too have recently started T3 medication, for the first 1-2 weeks I was insanely tired and falling asleep at any time of the day, this was on 5mcg. I then increased to 10mcg (my doctor said to aim for 20mcg but achieve this slowly). The fatigue was a whole new level until someone suggested I take my dose at night just prior to sleep. The difference was instantaneous. Hope this may help you 😊
Yes 100mcg for the past nine years, my doctor did not mention altering the dose when he prescribed T3. I think maybe the body takes time to adjust to T3...??? I have gone backwards with symptoms since starting T3, feeling very unwell like when I was first diagnosed. However I am determined to push on with it.
I've been reading others posters experiences when adding T3 and some seem to feel the benefit instantly, whereas others it takes weeks. Was youre FT3 below the range when you started?
I am not sure of my FT3 results (still waiting on a copy) but the doctor said my RT3 was very high, therefore he believes I am not converting. My antibodies are >1300
Oh dear! I know nothing about RT3 and what it means, but sounds like you've got a doctor who knows more than the rest. I hope you get some improvement soon 🤞
I see you have no info on your profile about your self or your thyroid journey so have no way of knowing your thyroid history . However I am amazed any GP has tested rT3 as it is so expensive and even more that they are so unaware that rT3 can be caused by FT3 being too high, rT3 can also be high if fT4 is high. As you have not posted your results there is no way of knowing if either of these apply. In addition it can be high high if you are on a strict diet or have a severe illness.
Finally it is important to note that rT3 blood levels vary considerably so any result is not much use as rT3 only stays for about 2 hours before being converted into T2.
I assumed your doctor thought it was as you two of your posts suggested that he did.
I am not sure of my FT3 results (still waiting on a copy) but the doctor said my RT3 was very high, therefore he believes I am not converting. My antibodies are >1300
I paid for the test $100, he is a highly recommended thyroid savvy doctor in Australia.
Certainly to me that is NOT the opposite of using rT3 results in your treatment. Sorry I cannot see that charging you for a test demonstrates a total disregard for its relevance.
I appreciate you have to pay for the test in the UK we are lucky to have the NHS for basic testing although many use private labs or doctors for additional help which of course is at a cost. Here in the UK it’s not used or trusted much by anyone which is why I offered the advice I did. It is the advice we see regularly on here. I continue to find some of your comments contradict each other regards his position on rT3. However I am happy to accept that is my misinterpretation of what you have said.
I really do not want to be disagreeing with you , especially as you have every faith in your doctor.
Let’s agree we have a communication problem, Inwish you good luck on your journey to better health. Take care
Yes I think you've added in the T3 too fast. Perhaps just do one dose a day for six weeks. Yes you'll stop feeling sleepy when your body acclimatises. Yes, perhaps you could just have had a small increase of Levo instead. But I'd stick with your T3 and give it a good try (just less).
Hi Laiah I've just been reading your post with interest. 2 weeks ago I was prescribed T3 along with T4. Was on 100 T4 and he prescribed 15 T3. Endo asked me to reduce T4 to 75 which I did. He did not suggest I start slow - I have started slow though due to advice on this site. I am now on 5 T3 first thing and then 5T3 at noon. Not sure how this will pan out as I think it takes time for the body (and the brain!) to adjust. So far have had relief from physical symptoms (pain, stiffness etc) but my brain is very tired (woolly and hard to concentrate) and a sense that I could fall asleep, but then if I lay down I just stare at the ceiling and don't sleep. Sleeping well at night though and night heart rate is starting to drop from before I was on T3 so I think that's good. Riding it out to see if this gets better. How are you getting on? Did you lower your T4 in the end?Having said all that, it could be the weather?? Very hot - everyone is struggling!
Hi, I'm getting on really well thank you! I eventually managed to optimise my dose, and felt alot better. I raised my T4 up to 88mcg as the drop was a bit too much for me. Recently I started to feel very tired again, so I did a private blood test and both frees had dropped lower. I have now upped my T3 and seen great improvement. I will assess again in a few more weeks and test, and then decide whether I think I need to up the T4 aswell. It definitely took me a while to get used to the T3 and this forum was a huge help. I wasn't given the correct advice on how to start it by the endo. I definitely feel better when my T3 is quite high in the range. Keep persevering. Im sure I've read that taking T3 tends to lower T4 levels, so you may need to go back to 100mcg. The weather is definitely taking it out of everyone, keep hydrated 😀 And good luck.
Just realised I didn't quite answer your question correctly. I dropped the levo from 100mcg to 75mcg after my original post, not 50 like the endo suggested. Then I upped it to 88 later on after test results showed it was a bit low.
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