Stopping NDT

[pagegirl]

Hi - has anyone experienced switching back to Levo and/or T3 after being on NDT? I am at my wits end - total TT in 2015, 1 bad year on far too high a dose of Levo as I convert poorly. Switched to NDT in Nov 2016 and although many hypo symptoms have resolved I just can't stabilise. I pool, and even with cutting right down and starting over I am really struggling with dreadful tinnitus and heart palps. I've tried adding T3 but can't raise above 10mcg without palpitations. I've addressed iron levels, adrenals, cortisol levels etc. You name it, I've tested it and treated it, and I just can't get right.

Right now I feel I just can't fight it any more. I've learned how to minimise pooling, so am thinking of switching back to 100mcg of Levo plus 10mcg T3 (which I buy privately). Just wondering if anyone else has made the switch - any advice, experience welcome! Thank you 😐

Sonia

[HIFL]

Have you considered combining levo with NDT? Take a look at the first chart on this page: tiredthyroid.com/rt3-3.html Is that what your labs look like? They just reflect your type of medication. I get the same result if I only take NDT. I feel much more stable taking both NDT and T4. When you lower the NDT, your FT3 won't be so high and some of your symptoms of overmedication should decrease.

[pagegirl in reply to HIFL]

Thanks HIFL, that's given me food for thought. My recent bloods certainly fit the first profile. I had only read negative discussion re combining T4 and NDT, but it does make sense, and I can't seem to settle when adding T3 to NDT. What dose do you take? I appreciate dosing is individual, just wondering where to start. Thanks again.

[Hoxo in reply to pagegirl]

I do this and currently take 50 mcg Levothyroxine and 1 grain NDT. I've had a flare up recently so am having a bit of difficulty managing my dosage. Am getting hypo and hyper symptoms.

[Wolfiesmom08 in reply to HIFL]

I love this blog! I added back my T4 meds to my NDT. It really helped me with the fatigue I started slowly by adding 13 MCG's now I'm at 25 MCG's With 1 1/2 grains of NDT. My levels are still low but I found I can't raise higher than that because I have extremely low ferritin. If I try to go above 1 1/2 grains, the T3 bothers my heart. So while I still have fatigue is not like it was on NDT only.

[pagegirl in reply to Wolfiesmom08]

Hi - that's really interesting, thanks. Do you spread your dosing across the day?

[Wolfiesmom08 in reply to pagegirl]

No I used to as it was recommended on stop the thyroid madness.com but then I started questioning their protocol and someone on this website recommended taking all my meds at once so that the T3 could flood the cells and be more efficient and I do like it better taking everything in the morning . I actually wake up at five AM on my own take it and fall back to sleep till seven for some reason it makes me extremely tired it's almost like my body needs to restart itself. It's been that way with her taking T4 only or NDT. I've had my adrenals checked and the curve showed a normal curve but slightly elevated in the morning.

[Roadrunnergreg in reply to Wolfiesmom08]

For your iron, have you had your copper checked could be high, and suppressing iron. Also get your zinc and GH checked too..

[LAHs in reply to Wolfiesmom08]

That is exactly my problem right now. I take 1 1/2 grains NDT and would love to raise it just a little to push up my FT3 and FT4 which are not exactly in the upper part of the range, but within hours of increasing my dose my BP goes up 20 points! That is the compromise I live with. My health is pretty good but while I can ride my bike I cannot run very far - oh well, not the end of the world I guess.

[FlippinThyroid]

I have had similar experiences and like you got to a point i couldn't cope but i found that the fillers in the tablets were the problems. I can't remember which tree is used in the filler (acacia rings a bell) so after at least a year of struggling with getting the GP on board with this idea plus getting a good Endo behind me i managed to get prescribed very expensive liquid levothyroxine (by Teva, so sugar free too). Now, apart from an horrendous taste in my mouth 24/7 i am starting to feel more like me and my tests are in normal range. I have also been watching The Thyroid Secret (by Isabella Wentz) on YouTube, when it was available, it isn't now ( she has a book out in April/May called The Hashimotos Protocol) and she teaches how to come off Thyroxine altogether with diet, natural alternatives and lifestyle changes. I am currently waiting for my book as it is on order. She also suggests drugs that i had never heard of as alternative to T4 or T3. She has a load of experienced professionals backing her up.

Anyway, good luck.

[Ruthi]

I take NDT because I convert badly. My GP persuaded me to try Levo only and it was a disaster. I slowed down, gained a huge amount of weight and gave my poor adrenals a spanking which reverberated for years.

I take my NDT all at once in the morning with no problem, but I know some need to split their dose. I adopted a ketogenic diet six months ago and needed to lower my dose, presumably because of better conversion on the diet. I am not inclined to repeat the Levi experiment again. I feel heaps better on the diet, the way I did before hypo, basically, and that is 20 years ago.

If you are a poor converter then I cannot imagine the answer is levo. Surely you should be looking at T3 only spaced through the day?

[pagegirl in reply to Ruthi]

Hi - yes I've tried T3 spaced out, with 1.5 grains of T3 - did that a few months ago when I had to lower the NDT due to high RT3. I feel fab on small doses of T3 but my heart starts doing powerful, painful palpitations if I raise above around 10mcg/day.

I think my heart is sensitive to changes in thyroid hormones as when I was increased to 150mcg of Levo ages ago it put me in cardiac care for a week!

I hear what folks say about not increasing T4 if I have a tendency to pool, but I think I started pooling on NDT because I raised too quickly and hadn't addressed other issues. Honestly, the time I felt best over the past 18months was when I took 100mcg Levo plus 10mcg T3, which at that time was prescribed, so I think I'm going to give that another go even though I do believe Levo isn't the best option.

[Roadrunnergreg in reply to Ruthi]

First thing I think of with poor conversion is a high RT3 cos of flagging adrenals, and believe it's a safety mechanism, as the thyroid pucks up the slack if weak adrenals

[Cyclegirl]

What is pooling? I too, wonder about switching.

Thank you

[pagegirl in reply to Cyclegirl]

Hi - I understand that 'pooling' refers to the build up of RT3 which happens if you don't convert T4 into T3 effectively, and/or you aren't able to make efficient use of the FT3 in your blood stream. Unfortunately you can get 'hypo' symptoms from pooling, which makes it hard to identify without a blood test to check your RT3 levels. I think that's right, but I'm sure someone else can explain it better than me

[HIFL in reply to pagegirl]

I'm not sure pooling isn't just a sign you're taking too much T3. There's a better explanation and graphic here: tiredthyroid.com/blog/2015/...

[SilverAvocado]

I agree that if you're a poor converter, and are experiencing pooling of T4, then you probably shouldn't take Levothyroxine. Have you tried T3-only? There are several members who didn't do well on NDT, but found success with T3-only.

[Clutter]

Pagegirl,

I'm also thyroidless and didn't convert well on Levothyroxine. Levothyroxine only also caused a lot of adverse effects which were calmed by the addition of T3 which also raised my FT3 from below range. I've been well on T4+T3 for 3 years now.

[pagegirl in reply to Clutter]

Hi - thank you, do you get your T4 from Levo or NDT now? If Levo, what dose of T4 + T3 have you found works for you?

[Clutter in reply to pagegirl]

Pagegirl,

I take 75mcg Levothyroxine + 30mcg Liothyronine. I'm expecting a dreary conversation about suppressed TSH with my endo in a couple of weeks. It's become an annual thing

[Dthomps in reply to Clutter]

I'm also a poor converter...am. Am now trying Synthroid and T3, I have Mitral Valve and take a beta blocker...started having more palpitations...very sensitive to T3....armor didn't work either

After 2 weeks of Cytomel 10 mcg and 50 synthroid 4 days per week and 75 3 days per week here are my numbers

RT3-16.4

Free T3-2.7

FT 4-1.39

TSH-.34

How can I balance my meds so I stop the palpitations? Also, have crazy eye twitches-3 years! Ugh I think I've been to every doctor possible to figure this out....fatigue is gone but can't kick the palps and twitching....RBC mag is 4.7 and have been trying to incr add that for 3years as well. Thx for your help!

[Clutter in reply to Dthomps]

Dthomps,

Please write your own post and include the lab ref ranges (the figures in brackets after results) when you post your results and members will respond.

[Clutter]

Pagegirl,

I've read through the thread and see that you have felt unwell adding T3 to 1.5 grains NDT. 1.5 grains contains 57mcg T4 + 13.5mcg T3 so perhaps you would do better if you added 25mcg Levothyroxine to 1.5 grains. This would give you 82mcg T4 + 13.5mcg T3 which is almost equivalent to the 100mcg T4 + 10mcg you were previously comfortable with.

[pagegirl in reply to Clutter]

That makes a lot of sense - thank you, I'll do that from tomorrow and see what happens. Thanks for your help - much appreciated.