Has anyone had to go off NDT and back on T4 onl... - Thyroid UK

Thyroid UK

137,755 members161,554 posts

Has anyone had to go off NDT and back on T4 only...?

5 Replies

About a week ago, I went off NDT and back on T4 only, after developing a host of strange symptoms in recent months: intense carb cravings and weight gain, intense itching, dry, flaky skin, racing heart, hair loss and heat and exercise intolerance being the most noticeable ones.

I have gained 25 kilograms since last summer. I suppose HRT is partly to blame, especially since I've taken progestin which is known to cause weight gain, as well as high doses of cortisone that I took for six weeks. But it's both frightening and interesting to realise I've been able to put on that amount of weight in such a short period of time, especially while on NDT since T3 is said to induce weight loss.

I should add that I never managed to lose weight on NDT alone, not even when optimally dosed, but only lost weight (28 kgs) when I started taking berberine (diagnosed with insulin resistance in 2012 but refused to go on Metformin until I had tried natural alternatives).

Anyway, I read in the blog "Tired thyroid" that T3 can cause insulin resistance so weight gain.

Some of my symptoms have subsided or even disappeared since going off NDT: I no longer crave carbs as intensively, I lose much less hair, the itching is all but gone and I can no longer feel my heart beat. I also feel good on T4 only, but it's only been a week so I guess it's a bit early to know for sure.

But, what I wanted to know is if others have experienced the same thing; that is, being on NDT for years, feeling good on it, only to end up feeling hyper and being unable to adjust the dosage (I titrated it down, from 5 to 3 grains, but still felt seriously overmedicated)? The way I feel right now, T4 only is better for me, but why would I feel that way all of a sudden...? The doctor who put me on NDT seven years ago diagnosed me with impaired T4 to T3 conversion which seems common in people with Hashimoto's. Is it possible for that condition to heal spontaneously, thus making you capable of converting enough T4 to T3...?

Read more about...
5 Replies
danym profile image
danym

what dose of levo are you taking and which NDT are you taking? I'm trying armour now and I have the same side effects as you, I feel that NDT does not work for me :(

in reply to danym

I am on Thyroid-S from Thailand and have been for years. I briefly took Armour and Erfa back in 2012 but 1. I did not find them that great and 2. Thai NDT worked better at a fraction of the cost.

The strange thing is that I've done great on Thyroid-S for years, and only recently has my body seemed to reject it. I have no idea why, but I have been on a lot of hormones lately (cortisone, estrogen, progestin) and wonder if there is a connection...now sure what to make of it.

I took Euthyrox for years, working my way up to 200 mcg daily, but never saw much improvement. Back then, I could not convert enough T4 to T3.

danym profile image
danym in reply to

so now are you on euthyrox? what dose?

what were your symptoms on armour that it did not work? thynking if I should try thyroids, i tried np thyroid and wp thyroid and they all seem to dry me very bad, dry eyes, sking, mouth, nose, hair falling out worse than on levo, bone pain, feeling weak, but getting heart palps when I try to increase dose :(

in reply to danym

I went straight back to 175 mcg of Euthyrox. That is what I took when my TSH was low normal (0.2-0.4; ref 0.2-4.5). The doctor I had back then (when I was still on Euthyrox) wanted patients with Hashimoto's on enough T4 to suppress the TSH to somewhere between 0.05-0.1 (he claimed it calmed antibody activity down as the TSH is what triggers autoimmune activity). So he raised Euthyrox to 200 mcg/daily and my TSH dropped below 0...I have now tried to go back to the dose where my TSH was low-normal. Completely irrational, I know, since many things may have changed since then. But I am just desperate...

Because, after feeling great on NDT for years my body seems to be rejecting it (or rather the T3 in it?).

It seems many symptoms of hypo- and hyperthyroidism are identical. Which only makes it more difficult to decide if I'm actually over- or under medicated.

I know many things can make you feel worse on NDT/T3 compared to T4 drugs only, such as adrenal fatigue, vitamin and mineral deficiencies...but other members are much more knowledgeable about this than I am so hopefully they will chime in.

I am a bit disappointed since I have spent a fortune on doctor's fees and labs (a hormone doctor trained by Thierry Hertoghe) and still am not optimally treated, seven years after my first appointment...it often seems I get more sensible advice from this forum rather than my (very expensive) doctor...!:-(

danym profile image
danym in reply to

I totally understand, I feel the same, I have to tell my dr what to do :(

You may also like...

Back on T4/T3 combo after T3 only

I didn't like T3 only after all my T4 was depleted and missed some of the benefits that taking T4...

How do you titrate off T3/T4 to T4 only?

to switch from T3/T4 to T4 only but my GP may give me no choice. If I feel worse I will source T3...

Binned all my Levo - NDT only now but T4 still low

was only getting a very low dose of Levo on prescription. I have been using solely 2 grains of NDT...

Changing back to T4 only - fast heart & tired

to it anyway, am now trying to switch BACK to t4 only which (I was ok on previously)as t3 has be...

Has anyone felt better on just T4 rather than T4/T3?

about stopping T3. A quick summary. I was on T4 only for 20 years after a partial thyroidectomy...