Switching from levothyroxine to NDT: your experience?

[Juliet_22]

Hi beautiful people,

I shared many posts here on the forum of how I've been trying to increase my levothyroxine for months and still struggling with the side effects - pulse increase, BP going up, hyper symptoms while hypo, etc.

At this stage, I've been at it for 8 months and I still haven't found a way to increase my thyroxine meds without getting the side effects that just don't go. I take lactose/mannitol free levo and been taking the same brand for at least 8 years.

Basically, I need to increase thyroxine. But each time I do, my body doesn't react well to it. The only increase I'm able to do is alternating 75/88, but I feel very hypo on it and my recent TSH came back above 10, whereas in mid Feb is was 4.9, which was still high. Usually, my TSH is below 1.

I've tried adding small doses of T3 (my T3 on the last test was 28% of the range, so needs raising), but it gave me more pulse and BP issues and so much anxiety, I couldn't bear it and my heart felt very, very uncomfortable. I stopped after a few days, and I tried adding T3 before as well, unsuccessfully.

I tried splitting levo into 2 doses. Same side effects. I take levo away from any supplements and food.

I have a healthy heart and did all the checks. Ideal folate, B12, D, iron, CRP, blood glucose, etc. levels. Healthy diet and lifestyle.

I've seen 4 private endos. Some say what I already know, 2 had suggested NDT. I have a prescription for NDT ready and can start taking it, but have been hesitating switching to it as I've read mixed comments about it. Some people feel great on it. Others don't and go back to levo and then it also takes them a while to rebalance their thyroid again

But after 8 months of my struggle with levo ... would NDT be a better option? If it doesn't work, is it easy to transition back to levo?

Has NDT worked for you?

[pennyannie]

I'm with Graves post RAI thyroid ablation in 2005 and prescribed T4 monotherapy and some years later became very unwell.

i was refused both NDT and T3 by the NHS in 2018 and decided to self medicate and my transition to NDT was easy and am still taking this treatment option.

I monitored myself on blood pressure, pulse and temperature twice daily and had bench mark T3 and T4 readings to compare myself back to.

No thyroid hormone works well until your core strength vitamins and minerals are up and maintained at optimal - especially those of ferritin, folate, B12 and vitamin D.

There are various suggestions as to how to dose -

I see you have a prescription so presume you will follow the instructions of whoever has taken the responsibility for your care whilst on this treatment option.

I stopped 125 mcg T4 one day and started on 1/2 grain NDT the following day slowly building up weekly by 1/4 grain increments, monitoring physical symptoms as mentioned above.

It's recommended that if and when you get to grains you stay on this dose for 6-8 weeks and then run a blood test to track your T3 - if your T3 isn't moving much from your bench mark reading - likely NDT is not the best treatment option for you.

There comes a week where you feel you are not as good as the week before - so you drop back down to the previous weeks dose - stay on that 6-8 weeks - and that's you best dose on NDT at that point in time.

If you have Hashimoto's this can put a spanner in the works as this AI diseases causes erratic swings in symptoms and T3 and T4 levels and you may find you have difficulty knowing whether it's the disease or your new dose causing the hyper / hypo type symptoms.

You may need to heal your gut first and look to exclude certain foods that can trigger further AI attacks - thyroidpharmacist.com

With NDT you track on the T3 - your TSH will likely be low suppressed - your T4 likely lower than when on T4 monotherapy/ T3combo but your T3 should be much higher in the range than when on T4 monotherapy and hopefully your symptoms relieved.