Newbie on NDT having problems: I was on 50mcg... - Thyroid UK

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Newbie on NDT having problems

Dramlouie profile image
6 Replies

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.

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Dramlouie
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6 Replies
shaws profile image
shawsAdministrator

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.

Clutter profile image
Clutter

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.

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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.

HIFL profile image
HIFL

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: tiredthyroid.com/blog/2014/...

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.

Dramlouie profile image
Dramlouie in reply to HIFL

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.

HIFL profile image
HIFL in reply to Dramlouie

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!

Dramlouie profile image
Dramlouie

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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