would love to hear members experiences of changing from T4 only medications to a combined T3/T4 or NDT?

Hi All, I was diagnosed with Graves disease at 26 years old (9 years ago). I had radio-iodine treatment in 2006 and subsequently suffered hypothyroidism since. I have been suffering significant symptoms for around the last 3 years, including anxiety, palpitations, fatigue (which doesn't improve with lots of sleep), brittle nails and hair loss. My GP's recommendation is to send me to a chronic fatigue specialist as with the age old story 'my lab results are normal'. The more I read into the topic I feel I would benefit from combined treatment which could hopefully improve my symptoms and take me out of this misery. I am thinking of going for private as I cannot face a battle with my GP, I will be moving to the London area although prepared to travel. I would love to know if anyone has suffered anything similar and could offer me any further advice?? Many thanks in advance for any help or support

11 Replies

  • Have your FT3 and FT4 been tested in addition to TSH? If FT4 is low you may be struggling to convert to FT3 which is the active hormone we need to feel well. If your GP won't test FT3 you can order a private test from Blue Horizon or Genova via thyroiduk.org

    I did very poorly on Levothyroxine after thyroidectomy and became extremely ill, getting worse instead of better. Levothyroxine (T4) and Liothyronine (T3) combination has made a huge improvement and I'm now recovering.

    You should also ask your GP to test ferritin, vitamin D, B12 and folate. Deficiencies and low in range results are common in hypothyroid people and symptoms similar to hypothyroid symptoms can be experienced. We need them high in range to aid absorption of thyroxine and to feel well.

  • thanks very much Clutter, this is really helpful.

    I have had my FT4 tested and has always been between 19-26 which is maybe within the higher range? I am not sure about my FT3, I need to ask tomorrow but I am going to see a new GP beside my parents in N.Ireland this week, hoping they will be sympathetic. I will ask if they can check what you have indicated, I haven't looked into any of these.

    I am glad to hear your health is improving, you must be starting to feel like a different person now?

  • UK labs often won't test FT3 unless TSH is suppressed so a private test may be your only way of finding out. My FT3 was below range but endo said to continue with 100mcg T4. I decided to self medicate and 6 months later endo agreed to prescribe as my health had improved so much. I no longer feel ill but have absolutely no stamina and need to pace myself else I'm wiped out and fit for nothing for days. I'm sure this will improve as I become fitter.

  • We are on about then same time scale, except I am much older than you. I had Graves and then TT in 2006 and felt well ish until 2010 although I had lots of niggly symptoms which it did not occur to me to attribute to thyroid loss.

    I have tried Levo only, T4/3, T3 only and more recently Armour thyroid (NDT). I tried Armour two years ago but could not tolerate it. Only through this site did I learn I must have good levels of ferritin, iron, B12, Vit D and folate, although I think the most important has been iron. I take Spatone daily and have found I can now tolerate Armour. I fear saying it, because the moment I do, something will go wrong again, but so far Armour has left me with the best daily temperatures and I no longer ache all over in muscles and joints. I am not perfect but certainly much, much better. Hair is still thin but I think my eyebrows look better. Nails, not sure, maybe a bit better. The most dramatic change has been to be free of aching. Please let it last! It is still early days, about a month.

    I buy my Armour myself. Can let you know where if you pm me. Hope this helps.

  • Could you pm please Hennerton with details.

  • As soon as I added 10mcg T3 to 75mcg T4 I felt a great improvement. I then went onto T3 alone and felt well but wanted to try NDT. I tried several but settled on Naturethroid and was well (both privately). In October my GP said he would prescribe T3 but not NDT so I've been taking T3 again and feel well. No pains/aches, etc etc.

    You have to try as it can make your life more or less normal again.

    This is a book which may be of interest.


  • It may be worth trying an increased dose of thyroxine before trying T3 combo or NDT, as your symptoms may just be due to taking too low a dose of thyroxine. T3 is magical if thyroxine has stopped working, but a bit tricky to manage, so stick with thyroxine for a long as you can, though make sure you're taking enough to feel better

  • My husband originally had Graves then surgury and then into hashis although not treated for many years

    12 years on thyroxine made little difference

    several years on t4/t3 combo and then straight t3 made things slightly better but the real change came 8 years ago when he was switched to armour thyroid and now at 72 he is able to lead a pretty full life free of most of the symptoms of hypothyroid

  • Thanks for the responses, this is really helpful and giving me plenty options to consider to improve my symptoms and if lucky, get rid of them :)

  • I have done thyroxine alone and with added t3 but didn't feel much better until I took Nature-throid. I am not "well" but better. I suspect after going hypothyroid for 25 years, and with undiagnosed Celiac until just 12 years ago, there is probably a lot of damage to my body that just isn't going to get better. I definitely am better, though, on Naturethroid, but I add a little t4 with it because high t3 doesn't do well for me.

  • Hi

    I've been on t4 for several years and never felt really well on it and after a long battle I've been prescribed t4/t3. But to my great disappointment I must say that for me it hasn't made any difference. I am now hoping to try t3 only but not holding out much hope of getting it as at my last visit to the endo I was told the reason I was feeling lousy was all probably menopause symptoms ......!!! (I'm 53 and yes I'm well aware I'm going through the menopause, but the easy option was to put ALL my symptoms down to that when I absolutely know for certain that half of them are thyroid related!) However, I've just started taking high dose Vitamin D3 alongside Vitamin K2 and can honestly say I don't feel as tired as I did and it's only been a week since I started taking them. I know that's only one thing that might be on the up but I'm truly grateful for any improvements in my general wellbeing! I also noticed my hair seriously improved in condition when I started taking B12. It's not a cure for the mistreament of my thyroid condition, but the great thing about this site is that it allows us to share our results and we can then opt to try things we might not have given any serious thought to otherwise.

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