Get and and go, has got up and gone.

Could I please get some advise. I am on 50 micrograms of levo and 20 micrograms of T3. My latest blood results were

TSH 1.2

T4 13.7

T3 3.8

These were from two weeks ago, in the last seven days I've become so tired, so sad and have no get up and go. I did not take my meds on the morning of the bloods. Any help my appreciated. ( I do feel my TSH is rising by the day). I have a frozen shoulder and awaiting surgery - prior my TSH was lower but they won't operate whilst its suppressed.

Thank you in advance.

32 Replies

oldestnewest
  • If you have the ranges for your results that would be helpful, due to the fact that labs use different machines so ranges can be different. I think your dose may be too low as your T3 seems to be. Your combined dose is around 110mcg levo and quite a few need a higher dose to feel well. TSH around 1 or lower is good and some do need it suppressed. I don't know why they are on about the dangers of suppressed TSH (I think it's untrue) because people who have thyroid cancer have to have a suppressed TSH and I doubt they feel worse but probably feel better with relief of symptoms. The aim is sufficient hormones to relieve all symptoms.

    thyroiduk.org.uk/tuk/about_...

  • Thank you so much for such a speedy response.

    TSH 1.2 Range ( 0.4 - 5.5 )

    T4 13.7 Range ( 11.5 - 22.7)

    T3 3.8 Range ( 3.5 - 6.5)

    These are the numbers if you can see I need to raise?

    Many thanks

  • You need more levothyroxine, both T4 and T3 bottom of the range and should be towards the top. Your TSH can be lower but many doctors only look at the TSH and if in range they're happy. You can tell GP you're a member of HU Thyroiduk.org.uk who are the NHS Choices for info etc on dysfunctions of the thyroid gland and you'd like levo increased.

  • Thank you so much.

    I am a little confused as to which one I raise first?

    Last year I was so overactive I became very unwell and my surgery was cancelled for my shoulder. I can be very sensitive to the meds.

    Should I do one at a time rather than raising both the T3 and T4 at the same time? Should I raise my T4 to 75 on alternate days? I am under two specialists. Both were happy with these bloods, but I was not! Very tearful and depressed. I have hashimotos, which I forgot to mention.

  • If you haven't had B12, Vit D, iron, ferritin and folate tested, ask for these too as we can be deficient and also cause problems if so.

  • Had all these tests done. I was vit D toxic, but now it's with normal range.

    If you could advise on which meds to raise first, and how my by, I would be so grateful. I suddenly have hope again.

  • I am not medically qualified and have hypo. I will give you an excerpt which is by Dr Toft who was President of the BTA and is his advice. This article was in Pulse Online which is the doctors' magazine:-

    "6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?

    The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.

    In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

    But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

    This ‘exogenous subclinical hyperthyroidism’ is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).

    Even while taking the slightly higher dose of levothyroxine a handful of patients continue to complain that a sense of wellbeing has not been restored. A trial of levothyroxine and tri-iodothyronine is not unreasonable. The dose of levothyroxine should be reduced by 50µg daily and tri iodothyronine in a dose of 10µg (half a tablet) daily added.

    While taking both hormones it is important serum TSH is normal and not suppressed."

    If you'd like a copy, email louise.roberts@thyroiduk.org.uk

  • shaws I don't mean to move this thread ot but I have just read this thoroughly. So if on levo alone Toft says it's ok to have suppressed tsh but not if on both t3/t4? But in my experience it's virtually impossible to raise t3 enough to feel better without suppressing tsh, and even after reducing t3 sometimes the tsh will not return to range, even if your meds are low enough to make you feel miserable. Any thoughts? I'd love to know what Toft would say about that.

    Having said that if all docs followed the advice to keep the tsh low in range (0.2-0.5) probably half the forum members would not be here asking why they are so ill. Valuable info.

  • Very interesting.

  • Sorry furcoatnoknickers (love your id btw) don't want to hijack your thread, just read this Toft quote thoroughly for the first time. :-)

  • What meds do you take?

  • Levo (75/100) and 10 t3.

  • Similar to me. I've just read one of your posts reg emotion. It touched a nerve, so relatable.

  • The rage one? Lol, that's my speciality.

  • Yep. That's the one!

  • If I ever go hyper again I will end up in prison.

  • I have to say, whilst I can't seem to find the correct dose for me, I'd rather be slightly under than over otherwise the devil comes out.

  • Nicely put.

    I sometimes read that to feel well some people need enough t3 to put them over the top of the range, and in fact that's when I felt my best, but while I might be happy I can't help but think I'd be the only one.

  • Ha ha. Good humour - I like it!

  • PB,

    I think that's an error. It doesn't matter what medication suppresses TSH as long as FT3 remains within range.

  • Clutter do you mean it is an error of Toft's?

    The way I read it it seems to say very clearly that suppressed tsh is fine on levo but not on levo/liothyronine. Or is there a different way to interpret it and I'm just not seeing it? If you read something and think you understand it it can be difficult to see it any other way so perhaps I've got it wrong.

  • PB,

    I think it is Toft's error or Pulse's error. It can't possibly matter whether Levothyroxine, Liothyronine or NDT suppress TSH.

  • Clutter unless/until Toft or Pulse corrects it or someone equally respected in the field proves it to be untrue it it remains a statement of fact. It seems to be clearly stated as Toft's belief.

    This is why we show his book to the gp w a thumb over the ndt bit and a finger over the tsh bit. :-)

  • I have just watched Dr T on Trust me I'm a doctor. He does waffle and says that there's not enough evidence about T3 which we know full well this isn't true. Being a member of the BTA I assume he has to watch what he says and he also mentions in the Pulse Online taken years ago I believe that some need T3.

    I think more than half of members would not need to be on here whatsoever. It is the disgraceful guidelines in the UK in particular that causes untold misery and some suicides too plus loss of jobs - we could go on and on.

    Dr T also said that there's no evidence about NDT - is not being in use since 1892 successfully not sufficient evidence plus Dr L's Rebuttal to the BTA which Dr T has obviously not read.

  • Thank you for your response. Very interesting.

    I couldnt walk without T3. I was bedridden for 18 months and could barely spell my own name, let alone remember it. It was through a specialist (private as per usual) it was recognised I was depleted of T3.

    Without him, I would not be here today, that is for sure. I think unless the Big Wigs have witnessed loved ones, or indeed themselves having to be put through such misery they will never understand the constant day in, day out battle we face.

    (Fighting the disease itself is more than enough, but to have to beg for the correct meds as well, is nothing short of barbaric).

    Like you say, we could go on and on ...

  • I will raise my T4 to 75 a day and keep the T3 at 20 micrograms. Thank you so very much.

  • Ha ha. Thank you, yes, it's a good id. I am the author of the book Fur Coat No Knickers and Fur Coat BIG Knickers. I've been to every specialist there is regarding Hashimoto's. When my levels get too low, I can't write, or concentrate. Interesting article from Toft though. This is a fab forum and very helpful - I am so very grateful.

  • Furcoatnoknickers,

    TSH 1.2 is no longer suppressed. If you increase dose it is likely to become suppressed <0.1 so you may want to wait until after you've had surgery.

  • Thank you. I rang endo after the suggestion was made this morning about upping my dose. He said a big fat NO. sadly I will have to wait. Thank you for messaging me.

  • Has anyone told you that frozen shoulder is connected to thyroid issues......but can be due to hyper and hypo so it doesn't really help.

    verywell.com/thyroid-patien...

    I developed mild frozen shoulder when taking vitamin D. It faded when I stopped the vitamin D supplements.

  • Thank you for the link, that's very kind. I will take a look.

    I did something really silly and went T3 only due to feeling so unwell on levo. My TSH went to 60. My joints were very weak. After leaning on my elbow, my shoulder went pop. I haven't been able to move/rotate it since. After 4 months of agony I had a steroid injection, it helped with the pain - but then the shoulder muscles all collapsed. Surgery is in 8 weeks time, providing my TSH remains stable.

  • I regularly have these times. They just start for no apparent reason, I don't want to do anything when the 'go has gone'. That said when I get my mojo back, i'm enthusiastic about everything, and tasks get done.

You may also like...