Continuing with T3 - advice please

I have been on T4 alone for 7 years with no improvement in symptoms, so eventually, 4 weeks ago I started on T3 - 15mcg (on NHS) with reduced T4 (from 150mcg to 125mcg T4). After 10 days I felt really bad again and emailed my endo (private) who didn't reply. So I increased my T3 to 20mcg a day and reduced my T4 to 100mcg. I immediately felt better again, although not as good as when I first started on T3. But after 9 days I started feeling unwell again, and this continues.

Now, I think that I should now increase my T3 and reduce my levo again (having posted before on here and got advice), but I have spoken with my endo on the phone (he eventually rang me several days later) and he was a little miffed (to say the least) that I had increased my T3 from 15 to 20mcg and decreased my levo to 100mcg, on my own, and has told me not to increase it again until my blood test result are back - blood test on 21 May (6 weeks from first starting T3).

What should I do as I now feel very unwell again? Do I increase T3 (and if so by how much and decrease T4 and if so by how much) anyway and hope blood tests don't look odd and how would I explain to him that I had increased my dose again without his say so? If so, how do I get the extra T3 that I need on top of my prescription (do I buy it and if so where from? My doctor wouldn't prescribe T3 without an endo's say so). Should I try and bring the blood test forward a little, although the endo knows when it is? Have I read somewhere on here that the blood tests when taking T3 are not very accurate anyway or did I dream that? Or do I just persevere until the blood test on 21 May?

I would be very grateful for any advice/thoughts anyone can offer.

Best wishes

Kathy

13 Replies

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  • I don't think you are giving your endo a fair chance to help you. If you increase your T3 AGAIN this would be in direct conflict to his instructions and you are in danger of seriously peeing him off. You can increase all you want yourself but whether your endo will still be willing to treat you is another matter and then you will lose your T3 and have to go it alone, which is not an ideal situation.

    I know its hard when you are not well, especially when you have had a glimmer of wellness, but you really need to give your body the chance to adjust and your endo the chance to do his job.

    Do you know what bloods you are having - are you having RT3 done.

    Sorry if this isn't what you wanted to hear and maybe others will disagree with me but I think it is much better to be on T3 under medical supervision than going it alone.

    Moggie x

  • Can I also ask at what times you are taking your T3 - have you tried changing these times to see if you feel any better, have you tried keeping your T3 well away from food and drink (except water) as with certain people this helps.

    In what way do you still feel unwell?

    Moggie x

  • Hi Moggie.

    Thank you. No, that is what I wanted to hear - I am just so confused I needed someone to tell me.

    I am having TSH, T3 and T4 done not rT3 - the endo did not ask me to get rT3 done (should I?). I have all the usual symptoms again, depressed, brain fog, headache and aching all over, irritable, tired, no motivation, etc which, as you say, is so hard when I felt really well for a short space of time.

    I take 10mcg T3 and 100mcg T4 on waking - usually around 6.30am to 7.30am. I have a cup of tea 30 mins later and breakfast after another 30 mins. I then take 5mcg T3 around 12.00 noon leaving 30mins to 1 hour before lunch and the other dose of 5mcg at around 5.00pm with evening meal at 6.00pm I find the timings difficult because I take omeprazole, which I now take at night (although I felt better when I took this in the morning acid wise), and find it hard to fit my vitamins and suppliments in around the T3 because I understand I shouldn't take these near T3 either?

    What do you think? Should I change the way I take my T3? Any other suggestions please?

    Best wishes

    Kathy

  • I think you are eating to close to your T4 let alone your T3 - you need to leave at least two hours before eating or drinking (except water) after taking T4 so you could be, in effect, not absorbing your T4 properly. Do you take milk in your tea as this is a big no no when taking T4 as it contains calcium.

    If I were you I would stop your vitamins (unless you are really, really low in something like VitD) and just concentrate on thyroid meds and timings just for a little while. Get your thyroid meds right first and then slowly re-introduce your vitamins around your thyroid meds.

    If you found it better to take your omeprazole in the morning I would go back to that (can you take these with food?) and then take your first dose of T3 about 8.30am. then the second dose a couple of hours after lunch at about 3pm and then the last dose I would take, with your T4, just before bed making sure you have had nothing to eat or drink (except water) for at least two hours. I found T3 helped an awful lot with my sleeping - which I know sounds weird but a lot of people on T3 take a night time dose as it can also help with the adrenals as well.

    You might not get on with these timings but taking T4 only 30mins to 1 hour after food really is not good. Unfortunately there is no set pattern with T3 and its a case of swapping and changing timings until you find the right combination for you.

    If you still feel really bad after changing around your meds and being strict about food and drink timings (what you are trying to do is to give your body the best chance it can to use your thyroid meds to their optimum) then I would be asking the endo what is going wrong.

    Have you had your ferritin (iron) checked? and what other vitamins have you had checked and what are you taking.

    I don't know much about reverse T3 (RT3) but I do know that if you are taking 20mcg's T3 and 100mcg's T4 and still feeling no better then something is a miss and it will be down to your endo to sort it out. It could be as simple as your body not using the T4 correctly because of the food so I would try to correct that first.

    How does all that sound to you?

    Moggie x

  • That sounds brilliant - thanks Moggie. I will certainly give it a go and will start tomorrow. I will also stop vitamins for now (except vit D which I have to take one a month 50,000) because I think this will help me to get into a routine as you suggest.

    I do take milk with my tea and didn't give this a thought!

    Not sure about omeprazole with food (think it has to be before food), but if I take it first thing, say 7.00am and T3 at 8.30, hopefully there won't be any interaction with the omeprazole and T3. What time would you suggest breakfast with the 8.30am t3 please?

    Thank you very much Moggie. I will start tomorrow and let you know how it goes after a couple of days. PS I didn't realise about the T4 and food either, I have taken it that way for years!!

    Best wishes

    Kathy

  • Just try and leave as long a gap as possible between the T3 and breakfast - sometimes its not always possible plus some people on here don't think it makes a difference with T3 and food but I, and others, found that eating within at least an hour of T3 did make a difference (although the longer you can leave it the better in my book), plus a university professor told a T3 user on here to avoid food with T3 so that is good enough for me.

    You might also want to change your 10mcg's T3 from first dose to second - just to see if that makes a difference - if it doesn't then change it back. As I have already said it is all trial and error with T3 but at least you now know how important it is to keep food and drink well away from your thyroid meds (more so the T4) so maybe you will start to see a difference in how you feel.

    Have you got a leaflet in with the omeprazole - this will tell you when to take it and with what.

    Glad you think I have helped and please let us all know if changing timings and eating habits have/have not helped (lets hope they do). You can also mention this to your endo the next time you see him so that he can actually see that you are trying hard to help yourself, which often goes a long way.

    Also you might want to get in the habit of using the "reply to this" button, in blue, under the persons name you have replying to. That way they will get an email to say you have replied to them and will stop them missing any further questions or comments you might have.

    Moggie x

  • So sorry Moggie. I did know to click on the "reply to this" button but forgot (foggy brain today).

    I have just found this about Omeprazole:

    "Taking omeprazole 20 mg capsules with food and drink

    You can take your capsules with food or on an empty stomach."

    So it seems it doesn't matter when I take them but I think I read somewhere not to take it near T4 or T3.

    I think increasing the 10mcg dose to the second dose is a good idea, as I always find myself flagging more by lunchtime and dose 2, which then doesn't seem to have much effect.

    Does not taking food with the T4 and T3 by at least an hour mean an hour either side, ie could I have breakfast at 7.15 and T3 at 8.30am or are you saying not to have breakfast or a cup of tea until at least 9.30am or more?

    Thanks so much for your help Moggie.

    Best wishes

    Kathy

  • Yes an hour either side - but that's with T3 (although I always tried, but didn't always succeed, to stick to the 2 hour rule with T3 as well). With T4 is should be at least 2 hours, although if you start taking this at night and make sure you haven't eaten for two hours that's one of your problems solved, and remember not to drink any milk or milky drinks just before bed . Your stomach needs to be empty for the tablets to be able to absorb into your system and if it is filled with food there is a good chance of it not being able to do this.

    No, have breakfast as normal at 7.15am and then your T3 at 8.30 - that would be ideal. I wouldn't suggest anyone not eat for hours just because of tablets, but this was one of the reasons I also suggested changing your bigger dose of T3 to around 3 oclock'ish as that way you will know for definite that you have left enough time - even is you eat your lunch at 1 oclock that will still give you almost two hours, but I wouldn't stress, or live your life around these times too strictly or you'll find it really hard. With the T3 leave as much of a gap as possible when and if you can but with the T4 its a must.

    Could you change you lunch time to 12.30 and then take your 10mcg's of T3 at 2 o'clock instead of 3 o'clock. I only say this because I know how dreadful the 3 o'clock slump can be (its a very common thing) and you really want to take your T3 BEFORE this happens. I used to just alter timings to suit - if one day I couldn't take my mid morning dose on time I took it as close to mid morning as I could - as I have said, don't be to strict or you will drive yourself mad. I think the most important thing is changing your T4 time and keeping that well away from all foods and drinks (except water).

    Hope I haven't confused you even more and if you want to ask anything else please feel free, I found it all very confusing when I first started on t3 and if it wasn't for people on this site helping and guiding me I wouldn't have gotten very far so I'm only doing for you what others did for me.

    Moggie x

  • Hi Moggie

    Thank you so much once again. You are a mine of information! I can change my lunch to 12.30pm and will start this tomorrow along with the other things you suggest. I have already given up the milky drink! I will make a list of timings for everything so I can follow it and, hopefully, stick to it as much as possible, and hopefully get into a routine that works.

    Best wishes

    Kathy

  • Hope it all works out well - but as I have said, don't stress if you have to take a tablet late on occasions.

    You never know you might find that taking T3 with food doesn't cause you any problems but until you start taking it away from food and see if you feel any better you will never know will you.

    Moggie x

  • Just an after thought - here is how I used to take my T3.

    5mcg's at 6.30 because I never eat breakfast.

    5mcg''s at 11 o'clock which is an hour and a half before lunch

    5mcg's at 3 oclock to help stop the dreaded slump

    and my final 5mcg's with my T4 just before I turned out my light.

    Moggie x

  • Thanks Moggie x

  • thyroid-rt3.com/backgrou.htm

    A lot about T3 and reverse T3.

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