Has anyone gone back to levo after years on NDT?

I have recently had pretty bothersome hyper symptoms, such as increased sweating, rapid heartbeat (resting pulse +100), body temp of 37.9 in the early afternoon, along with increased appetite and increased hair loss.

These symptoms appeared on 3 grains of Thyroid-S daily. My latest labs (from Oct' 19, on 3 grains):

TSH <0.01 (0.4-4.2)

FT4 0.7 (0.7-1.5)

FT3 2.7 (1.7-3.7)

Based on these labs, I even thought I could add 1/2 grain, but that made things worse.

A few days ago, feeling completely desperate as sweat was literally dripping from my forehead, I went back on levo only. After 72 hours off T3, my heart rate has come down, I don't sweat as much any more, and don't feel overheated all the time.

This comes as a complete surprise to me as I've been on NDT for the past nine years, and have previously taken much higher doses (6 grains daily) with no hyper symptoms.

The only things that have changed recently are:

1. I have been treating slightly out-of-range cortisol levels (confirmed by 24 h saliva test) with 100 mg of PS at night along with ashwagandha;

2. I have been working on correcting suboptimal levels of vits B, D, and iron.

I know that optimal levels of these vitamins and minerals are important for T4 to T3 conversion, but is it likely that optimising them could lead to hyper symptoms...?

I have always considered myself a poor converter, and assumed I'd have to be on NDT for the rest of my life.

I went back and checked my last labs on levo only (200 mcg daily), and interestingly enough they didn't look that bad:

TSH 0.05 (0.4-4.2)

FT4 1.4 (0.7-1.5)

FT3 2.7 (1.7-3.7)

I note that my FT3 levels were the same on levo only as on 3 grains of NDT, and only my FT4 levels are very different (which was to be expected). Back then, in 2010, I had a doctor who wanted a TSH of 0.05-0 in patients with Hashimoto's, as he claimed the the TSH is what stimulates the immune system to attack the thyroid. For whatever reason, I have noticed that I feel much better with a suppressed TSH.

My main complaint on levo only was weight gain and an inability to lose weight. NDT did not change that, however, and I could only lose weight after I got my insulin resistance under control using berberine. But, unlike many other people on T4 mono therapy, I never felt cold, nor was I excessively tired and sluggish.

I have been wondering if the T3/T4 ratio in NDT is no longer optimal for me, and if I need more T4 and less T3...also, I've seen rumours about a possible recent reformulation of Thyroid-S, but not sure they are true. Of course, I know that people who have been stable on a particular brand of NDT for years suddenly felt worse after it was reformulated, but not sure that applies to Thyroid-S (nor is the manufacturer likely to confirm any such reformulation). However, it would be interesting to know if anyone else has noticed recent batches of Thyroid-S working less well or causing symptoms?

Has anyone else had to go back on levo only after years on NDT?

I am not sure levo will be optimal for me in the long run, but at least the most bothersome symptoms have disappeared.

[Timsywhimsy]

Hi Cat,

Don’t have a lot of help to offer, but I can say I’ve thought of going back in levo only. Now I’m on 1/2 grain NDT and 25 mcg levo. Most I’ve ever taken was 2 grains. Like you, what I’ve found interesting is that my Ft3 barely moves. I think it was the same on 2 grains as it was on 10 mcg of cytomel (plus some levo). Makes me think we have set points or something that our bodies try to maintain. I’m also like you where if my tsh gets too suppressed I feel hyper (even if the frees don’t indicate hyper at all). It’s. So. Frustrating! And combination therapy has been such a rollercoaster—free t3 too low, add some, free t4 goes low and I feel bad so I add some and then I start feeling hyper. It’s the pits.

Another thing I’ve been wondering about is this: so 65 mcg levo suppresses my tsh but I can add t3 to that and tsh doesn’t really change. I wonder if the t3 isn’t really ‘registering’ in some way, but you’re still ‘getting’ it or too much total of t4 and t3????? It’s tricky deciding if you are over or under medicated, right? Like different body parts respond differently and you can’t find the balance.

Oh, and what’s the ps? You said you take it with the ashwaganda. I’ve had some bad reactions to herbals and it can feel hyper.

I’d love to hear how you feel going forward!

[Hidden in reply to Timsywhimsy]

Very interesting and helpful post, thanks for sharing! It's annoying when you think you've found the right drug for you, only to start feeling worse again...

PS is short for Phosphatidylserin and is known to lower cortisol. My cortisol levels were slightly out of range at all four times (morning, noon, afternoon, bedtime), and that can also affect thyroid hormone levels.

It's only been a few days on T4 only, but I did not wake up drenched in sweat this morning, nor can I feel my heart beat any longer.

Back when I was on levo only, I needed quite a high dose (200 mcg daily) to function. Many doctors seem uncomfortable prescribing more than 75 or 100 mcg daily, so I guess I was lucky to find one who wanted my TSH somewhat suppressed which required 200 mcg daily.

The website and book Tired Thyroid mentions that when on NDT (which contains a relatively high percentage of T3 compared to what the human thyroid normally produces), the body starts converting more T4 to reverse T3 as less T4 is needed for conversion. That may be a problem for someone who needs her T4 levels at a certain level, as I seem to do.

[fixit]

I spent 5 years on varying doses of NDT and am now on 150 Thyroxine and feeling much better.

I had the same as you. A continual feeling of being overheated with hot flushes no matter the dose of NDT. That has now gone on Thyroxine.

[Hidden in reply to fixit]

Thanks, that`s great to know! It`s really awful, that feeling of being boiling hot and sweaty...That must put a strain on the heart. I have also developed high pressure difficult to get under control even with meds, so I suspect there is a connection...

[fixit in reply to Hidden]

Definitely- mine was always borderline high.

[Hidden in reply to fixit]

This is my fourth day on T4 only, so by now pretty much all of the T3 from the NDT should be out of my system.

So far so good. These are the most noticeable changes in the past few days:

-heart rate has gone down to ca 100 bpm to 75-80 bpm,

-far less sweating,

-better sleep,

-less itching (interesting enough, I read in a blog by UK thyroid patient Paul Jones that he had intense itching when on NDT; I put it down to the cold, but maybe my T3 levels also had something to do with it),

-decrease in appetite (which is good as I need to lose weight),

-more even energy levels, with no sudden jolts of energy.

So far, it would seem that going off NDT and back on levo was the right thing to do, at least for now.

Re T3 and insulin resistance, there is conflicting info. US doctor Westin Childs claims that insulin resistant patients often need to be on T3 (along with a low dose of NDT/T4) or even T3 only, the reason being that insulin resistance leads to higher levels of reverse T3 (which he claims are problematic). On the other hand, thyroid patient Barbara S. Lougheed, author of "Tired Thyroid", claims that T3 leads to or worsens insulin resistance. She advocates mostly T4 with very low doses of NDT.

Both cannot possibly be right.

But one thing is certain: being on NDT never helped my insulin resistance. Nor did it help me lose weight. "Tired thyroid" claims that T4 is more important when it comes to weight management than T3...so it's not easy to know what to believe...!

[humanbean]

I have been treating slightly out-of-range cortisol levels (confirmed by 24 h saliva test) with 100 mg of PS at night along with ashwagandha;

How long have you been on the adaptogens for? Have you tried reducing or stopping either the PS or the ashwaghanda or both?

It may be that the supplements you were taking have been too successful and you have reduced your cortisol too much.

There has to be a balance between cortisol and thyroid hormones, and that balance is very hard to find.

I have been working on correcting suboptimal levels of vits B, D, and iron.

I know that optimal levels of these vitamins and minerals are important for T4 to T3 conversion, but is it likely that optimising them could lead to hyper symptoms...?

If you had high cortisol it is possible that optimising nutrients could have lowered your cortisol levels. Since you are taking supplements to lower cortisol as well it is possible your cortisol levels have dropped too far.

People think of cortisol as being affected by mental and emotional stress e.g. having a flaming row with your partner. But stress is far more complicated than that. Having a cold is stressful. Having the wrong levels of thyroid hormones is stressful. Not eating enough, eating poorly or erratically, being malnourished, not sleeping enough, over-exercising, under-exercising, they all add to the stress that your body is under every day. Fix one of these things and it could reduce your cortisol without you even realising it.

[Hidden in reply to humanbean]

Thanks for your input, Humanbean!

I know, trying to get the right thyroid-adrenal balance is no easy thing...to use an understatement!!!

I've been using PS and Ashwagandha for a month (started on Dec 20), so maybe it would be time to stop. The problem is it's difficult to find info on high cortisol (most articles talk about adrenal fatigue). So I don't really know for how long you are supposed to take adaptogens to lower, not raise, cortisol levels...

I was surprised when all my cortisol test came back highish, as I have been hypo for years and also was diagnosed with adrenal fatigue back in 2011. As far as I know, high cortisol is the first stage before developing adrenal fatigue, but I seem to be doing the very opposite...?

But you're right, I should probably have a new saliva test done. It was rather complicated as I had to order overnight delivery by DHL to the UK from mainland Europe, but probably worth it. I want to avoid my cortisol levels dropping too low at all cost...!

[KT77]

I have read somewhere that hypothyroid people should not take ashwagandha because it influences thyroid hormones levels. I dont remember the details though. Personally I have given up on adaptogens. They either raised my cortisol too high and I couldn't fall asleep or lowered my cortisol too much and couldn't wake up in the morning.

[Hidden in reply to KT77]

Thanks, I know there are many things that influence thyroid hormone levels one way or the other, and I was planning to go off adaptogens anyway in order to have my cortisol levels retested in a couple of weeks...