Hello peeps - help re. TSH please?

Hi, I had mt thyroid completely removed back in 2006. It took time to get my TSH and symptoms balanced but for the last coupe of years I've been on 100mcg Levothyroxine and 20mcg Lyothyronine. Over the past few months I've been struggling with terribly low energy and seem to pick up every virus/bug going. My GP did a range of blood tests and my TSH is showing 0.01! He now says to come off the Lyothyronine and just take the Levo. I'm in despair as I feel SO tired all the time and am dreading lowering the dose in case I feel even worse. I've had my iron. Vit D etc checked and all is in normal range so why am I SO tired? I've a history of heart palpations but have seen a cardio who has confirmed all is fine but also agrees that I'm being 'over-medicated' with thyroxine. I have several friends who have there thyroids but are on levi and they're ALL on higher doses than me with NO thyroid whatsoever!! I'm completely at a loss. Any ideas anyone please? I'm waiting a referral to an endocrinologist to try and sort things out but I would just like to go armed with a bit of info of my own. THANK YOU xxx

13 Replies

  • Because TSH by itself tells you nothing. You need your free T4 & free T3 measured to know if you are properly medicated

  • If your doctor is adamant, you can also be and say you'll reduce T4 by 25mcg but not lio at all. You have no thyroid gland whatsoever, your billions of receptor cells need the Active T3, and you are not converting sufficient to T3 because you need it direct for you to feel better.

    That's the worst thing they can do is to adjust our meds according to the TSH. No wonder people get so unwell. I've often had the same TSH and GP didn't bother at all.

    Did you leave 24 hours since your last dose of hormones and the blood test and fast (you can drink water).


    This is a link to the back cover of a book Dr Lowe wrote (he died accidentally a couple of years ago). He only tested the TSH on diagnosis and ignored it until his patients were well.


    You can give your GP a copy of this Open Letter which is self explanatory. They have to be educated.


  • LizzyB40, I'm also thyroidless and endo targets TSH <0.1 but it is usually 0.01 or lower. I'm taking 75/100mcg Levothyroxine alternate days plus 30mcg T3 daily.

    Suppressed TSH does not mean you are overmedicated as long as FT4 and FT3 are within range. Ask your GP to test FT4 and FT3 and say you will reduce dose if either are over range. Read Treatment Options in thyroiduk.org.uk/tuk/about_... which discusses thyroid levels and tiredthyroid.com/tsh.html

    If your GP won't do the tests you can order private thyroid tests from Blue Horizon and Genova via thyroiduk.org.uk/tuk/testin...

    Thyroidless patients benefit from T3 because they no longer have thyroidal conversion of T4 to T3 and Levothyroxine alone doesn't always enable good conversion.


    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Hello again and thank you for your kind response! Just to be clear - is T3 the Lyothyronine? And T4 Levothyroxine?

    Thank you,

    Liz x

  • Thank you for your kind reply. It's good to hear from someone with no thyroid like me! I had mine removed in 2009 and it took a while to get my meds sorted. I wavered between 125-150 of thyroxine a day - too much and I got jittery, too little and I was exhausted. After a couple of years I had a change in gp and the new one suggested I reduce the thyroxine to 100 and to start taking 20mcg of Lyothyronine daily as well. The difference the lyo' made was amazing. (I gather this is the t3 that people are discussing?) I'm really interested to see you're taking thyroxine on alternate days? And the Lyothyronine daily? Is that correct? I've been told to stop taking the lyo' and I just desperately don't want to! It was the one thing that made me feel ok. I wonder if I might suggest to my gp that I stay on it but lower the thyroxine like you? Thank you again for your response. I'm brand new here and am a bit desperate.

    Liz x

  • Liz, I'm taking 75mcg Levothyroxine (T4) one day and 100mcg the next, plus 30mcg Liothyronine (T3) every day.

    It's ridiculous that your doctor suggested stopping 20mcg Liothyronine. That's a huge dose reduction equivalent to 60mcg Levothyroxine. Dose reductions and increases are usually 25mcg Levothyroxine or 10mcg Liothyronine increments.

    An endo (not the one I usually see) said my TSH should be less suppressed and reduced Levothyroxine dose from 100mcg daily to 75/100mcg alternate days plus the T3. TSH didn't budge but FT4 and FT3 dropped. Usual endo said to stay with the dose he didn't want FT4 and FT3 to drop further. The dose reduction didn't worsen symptoms but if it had I would have promptly increased dose.

  • Hello again and thank you for your kind responses! Just to be clear - is T3 the Lyothyronine? And T4 Levothyroxine?

    Thank you,

    Liz x

  • LizzyB40, yes Liothyronine is T3, and Levothyroxine T4.

  • Hello! im new on here i was just curious about the whole t4 med and t3 . i had a total thyroidectomy in 2010 and have only ever been given levothyroxine 100mg do i need this t3 med also ? its all so confusing

  • Hi Binska, how do you feel on 100mcg - are you ok?


  • HI Lizzy I'm not even sure what normal feels like, but put it this way I felt a lot better before my opp I'm gluten and dairy free and if I dont ​take magnesium regular I get severe joint pain and stiffness can't sleep etc ​etc ,i generaly have to have 10hrs a nihgt sleep or i feel dazed and foggy all day.​

  • I've always wondered why GPs think you need TSH when you haven't got a thyroid - what's it supposed to do?

  • You say you have had your Iron - VitD checked and they are normal. Do you have the actual results ? - also for Ferritin - Folate - B12. Normal is not a result - just an opinion :-) When these are low they can cause problems with the heart palpitations.

    If you want to look at the book on Amazon - called The Thyroid and Heart Failure - you can look inside and see the word Liothyronine again and again - T3 is the star of the show ! Heart problems are systemic and not just in the vascular or heart system. The endocrine system and the thyroid are very much involved. The book is full of research papers on the connections between the heart and the thyroid.

    If your Iron is low then so will be the oxygen levels in your body which causes the fatigue. Oxygen sticks to the iron in the red blood cells so it can be transported around the body to give energy to all the cells.....

    I am T3 only and after 4 years of being on it I no longer have a funny heartbeat - it seems to have settled down well.

    Hope all goes well with your appointment....

You may also like...