Newbie on NDT having problems

I was on 50mcg levothyroxine although I felt hypo before starting on NDT Thiroyd. At the moment, after receiving Stop the Thyroid Madness book yesterday and having a read I realise that I might be low in iron or not raised enough. I have got to two grains, one in morning one after lunch but realise I should increase the dosages throughout the day. So today have taken half on waking, half mid morning and half lunch time. I have been feeling more and more breathless and for the last few days been getting a lot of palpitations. Last night I was watching tv and got a quick bit of chest pain but when I got up I got some acid reflux. Today I am still feeling breathless and out walking with my elderly Mum I couldn't keep up with her. I also got a couple feelings of short chest pain. I had a bit of air hunger before but was ok walking, now I am getting breathless walking. I have also been getting leg cramps as I get into bed. There is a lot to take in with the book but its got so much information. I have changed my doctor recently and asked if I was low in iron and she said that I wasn't but will give me a ferritin test in a months time.

Jan 2015 blood test results showed serum creatinine 89 (44-80), GFR calculated MDRD 57 (60-90), free T4 14.4 (12-22), TSH 1.73 (.3-4.2).

May 2015 blood test results showed serum ferritin 65 (12-230), folate over 20 (4.6-18.7), B12 1282 (197-866), Serum Thyroid Peroxidase AB 195.8 (0-35), free T3 5.3 (3.1-6.8).

I am also taking two Nutri Thyroid tablets.

Pulse is 66 resting which is higher than my pulse whilst on levo.

Bit confused now, any help would be appreciated. I heard that you shouldn't increase too fast or can go hyper and then if got antibodies its all confusing now.

6 Replies

  • If you were taking 50mcg of levothyroxine and then switched over to 2grains of NDT it might be too high a dose at present. I've never split my doses of thyroid hormones although I know some people do. I cannot be bothered with remembering etc - carrying tablets around.

    If you were on 50mcg of levothyroxine your first dose of NDT should have been 1/2 grain for 2 weeks then another 1/2 dose increase to 1 grain and so on till you feel much better. I cannot figure out how people titrate doses when splitting.

    When on NDT. I took my pulse/temp before getting out of bed (Basal Temp Test) and then a normal pulse/temp several times a day to start. Once I felt stable on a dose I didn't need to take pulse/temp.

    When I take either NDT or T3 only I am aware very much how my body feels and adjust/reduce accordingly by 1/4 dose when I think I'm near my maximum dose.

  • Dramlouie, 2 grains is equivalent to 150-200mcg Levothyroxine. I think it's likely you are overmedicated. Breathlessness, fast heart rhythms and leg cramps are a common symptom in hyperthyroid patients. I recommend you order a thyroid panel including FT3 to check levels.

    Ferritin is optimal half way through range.


    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.

  • Because you're complaining about breathlessness on exertion, chances are that you're overmedicated. Both too much or too little thyroid hormone can affect your breathing. Some good reading here:

    FYI, not everyone needs the high doses of NDT that STTM recommends. I would be undermedicated on 50 mcg levo too. A lot of people need something in between; you know, more than 50 mcg T4, but less than 3 grains NDT. Some combine T4 with T3, and others combine T4 with NDT. Don't get fixated on just one medication, because just like T4-only doesn't work for some, neither does NDT-only.

  • What an excellent article, clearly explained, now I can see what is happening. A few days ago I had air hunger but when I went for a walk I was fine. Now today my air hunger has gone and yet when I went for a walk I was out of breath. On levo T4 I had air hunger at 50mcg. Apart from that I wasn't feeling too bad. But as my air hunger was getting worse I presumed it was the levo but now I realise I needed a slight increase. I can feel myself going up and down like a yoyo on Thiroyd. Perhaps I need a combination of levo to keep it more steady. Food for thought. But stupidly enough I saw a psychiatrist after I had a heart attack last year, my doctor reduced my levo by half and I kept having anxiety and panic attacks feeling I couldn't breath. I ended up in A&E and again at the doctors. I did tell them about the levo but it was ignored as the TSH was in range. I can now see that I had all the symptoms including the air hunger, I just felt as though I couldn't breath, but the psychiatrist said I was over breathing and getting into a panic attack. I am going to send him the link, would have saved 20 sessions. Thanks for your help.

  • Glad you found it helpful. Being able to breathe while walking is a good indicator for me of whether I'm too high or too low. I think my breathing is actually better when I'm slightly low, but then my hands and feet are cold. Can't win!

  • I have actually passed the info onto my psychiatrist. It might spare some yet undiagnosed thyroid patients a life of psychiatric appointments! I think I might be swinging high low, the cramps are usually when I am low, a few days ago I was walking ok but air hunger. I did have the flu 4 days ago, or at least a temperature now got a cold. I wonder if that was linked, I had the temperature for a day, had horrendous teeth aching.

    Just seen your info on speech, oh my, I speak absolute gibberish sometimes, I can't type properly, it comes out back to front and my tongue seems too big for my mouth, I feel as though I have a mouth full of marbles and I say totally wrong words, my friends think I am hilarious and my children say they are getting the white jacket ready for me! I hate talking in front of people because of this and I have had it for years. I know what I want to say then out comes bananas and elephants. So do people on NDT find improvement, it mentions only people on levo?

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