Hello. I am hoping for some advice/reassurance as my thyroid doc is on hols so no response. I have switched from levo to NDT Erfa. I was on 125mcg levo which I stopped altogether then I've built up over a few weeks to 2 grains Erfa - one morning, one evening. I got to this full dose last Wednesday. I've been feeling stupidly tired, and pretty stupid as well as my mental exhaustion is the worst. I've had a period 2weeks after my last one, which stopped after 4 days and a few days later I have spotting. I've never had that before. Also the PMS and headaches for 3 days before my period were debilitating. I'm wondering if the NDT is too low/not right for me OR is this just a crazy adjustment period and everything will settle down? If so, how long? Thank you in advance, would SO appreciate some words of experience or wisdom of what on earth is going on!?
Switched from levothyroxine to NDT - feeling so... - Thyroid UK
Switched from levothyroxine to NDT - feeling so tired & having crazy periods - is it wrong for me or is there an adjustment period?
Hello. Well, I would say that you’re right in the middle of the after effects of stopping Levo cold turkey (you say you stopped altogether then built up your NDT dosage?). So there will have been a period of several weeks when you were significantly under-medicated while you built up your NDT dosage. 2 grains is likely to help a lot (it may still not be an optimal dosage for you) but it takes weeks for the T4 and T3 in the NDT to build up (particularly the T4) in your system. Those few weeks of being undermedicated are likely to be what’s done a number on the rest of your hormones (they all work together).
So, I’d say now—stick with 2 grains now for at least a month, preferably 6 weeks. Give that 2 grains a chance to reach optimal levels in your bloodstream. And then get your FT3 and FT4 levels tested. You may see then that there’s room for an increase in NDT dosage (or possibly a small reduction—it could go either way).
Try not to worry—it should start to sort itself out over the next few weeks.
But Levothyroxine has a long half (c. 6 weeks) life so in theory by the time you have titrated up the NDT it will have replaced all the T4 the Levothyroxine was providing.
I personally titrated down Levothyroxine by 25mcg whilst titrating up the NDT by 1/4 grain increments, but only because I was scared of NDT because of all the complete rubbish that is pedalled about it with no basis in fact - literally just scare mongering - and wanted an easy get out if it didn’t work for me. I used this guide (bar my approach with staying on and reducing Levothyroxine): tpauk.com/main/article/trea...
My fears were not founded and I had a remarkable improvement on NDT. I am still fine on it after 7 years.
Can I ask where you got your NDT from please
I can’t disclose this on the forum it’s against the rules only via private message
Can you private message me re NDT please
I went from 125 mcg Levo to, eventually, 3.25 grain NDT. You may be still undermedicated. I would further increase dose with 1/4 grain per 2 weeks until you feel better. Or until you feel overstimulated, and then decrease again. Then do labs when 6 weeks on optimal dose symptomwise. See if it corresponds with FT3 being top of range and FT4 being at least midway the range. Adjust from there.
That would have been too much for me but we can all react differently but I do think you may have increased too quickly. It takes each new dose 6 weeks to get fully into your system so the way is to keep constant for 6 weeks then retest. If high then drop back but if still low then a small increase and repeat.
OK thanks
When I switched I remember I went through a couple of weeks of suddenly falling asleep. It was so strange as I’d sit down and next thing I was in a deep sleep. It passed as I got used to the meds.
That's good to know, hopefully I'll feel better in a couple of weeks too.
Hello Pamela ;
i doubt NDT is wrong for you, but question the speed at which you arrived at this dose.
I switched from 125 mcg T4 to 1/2 grain NDT the following day and then took 1/4 grain increments weekly.
Levothyroxine takes around 6 - 8 weeks to finally leave the body and in that time, as the T4 decreases you slowly start to take the NDT in small weekly increments and build back up your thyroid hormones to the relief of symptoms.
I only managed to reach 1 + 3/4 grains when I felt I wasn't as good as the previous week so dropped back down to 1 + 1/2 grains and have been on this dose for over 3 years.
My temperature rose from 35.4 to 36.6 and my blood pressure and pulse remained stable.
NDT takes time to settle and I found my symptoms improving months into this final dose.
I think you may have increased too much too quickly, and would suggest you drop back down a little, stay on a more comfortable dose for 6 - 8 weeks, take a blood test, and see where your T3 is in relation to where it was when on the T4 Levothyroxine only.
On NDT you dose to the relief of symptoms and not a blood test, but if your T3 hasn't moved much from your bench mark numbers, prior to starting this experiment, NDT may not be the best option for you.
I found on NDT testing my TSH was 0.01 : my T3 was at 110% through and my T4 was 25% through the range compared to when on T4 only my T3 sat at 25% and my T4 sat at 110%.
No thyroid hormone works effectively until your ferritin, folate, B12 and vitamin D are optimal.
I'm with Graves post RAI thyroid ablation and managing lingering Graves, thyroid eye disease and hypothyroidism.
Yes the warmth was one of the things I first noticed. I had become like a brainless shadowy zombie on Levo within days of taking just a 1/4 grain my personality returned and I felt human again it was truly magical things just got better from there on in. I am a super fast reactor to medications according to 23&me so it could explain the very dramatic improvements I felt even on the smallest initial doses. I have never looked back since swapping to NDT I got my life back. This forum has been a huge support - thank goodness it’s here for us.
Thank you. My ferritin is permanently suboptimal, and my vit d is low too I recently discovered, despite taking supplements - I've upped these to compensate and I've started taking dessicated liver too. I also have low oestrogen so it's hard to know what symptoms come from where sometimes. I just had an operation too so unwise timing really, but there has definitely been a crazy reaction but I will do tests in a few weeks and see how I feel then and what my doc says. Thank you.
No thyroid hormone works effectively until your ferritin, folate, B12 and vitamin D are optimal.No thyroid hormone works effectively until your ferritin, folate, B12 and vitamin D are optimal.*Spot On*.
O I increased 1/2 grain a week not a day. Thank you for the info and for the book recommendation, I'll look it up.
I started at 1 grain. 1/4 grain weekly increase from there would probably also be good. 2 weekly increments makes for a long time of being undermedicated.
Hi there - took me a while to realise when I went on NDT that the T3 component was putting a strain on m body - I was so exhausted - it is like a plant - if you over water it -it will wilt - if you under water it - it will wilt. Same with thyroid medication - if you take too much for your needs you will be exhausted - hair loss etc. etc. and if you don't have enough you will be exhausted and hair loss etc. etc. - so difficult - took me ages to realise my exhaustion was over medication due to NDT.
Thanks. Gosh it's hard isn't it. That's why I got a doctor on board so I didn't gave to guess and try and figure it all out anymore, won't be long though til she's back and I'll see what she says.
I didn’t didn’t find it hard at all, I wonder if it’s merely a case of lost of knowledge of how to dose with NDT, which was the only treatment since c 1889 to modern times, but with Levothyroxine and blood tests pushing NDT out, doctors were no longer trained in its use. Now few have any idea and many just label it dangerous, when it is nothing of the sort. They are are the dangerous ones if you ask me.
Even if they prescribe NDT, many still go by normal instead of optimal levels. This makes a huge difference. I'm in normal range on Tru Thyroid at the moment, but due to a batch switch, I went from optimal to suboptimal levels. Many symptoms have returned already. I hope your doctor takes this into account.
Most endos and GPs are less knowledgeable than people on this site. Listen to them but do your own research because sometimes their advice is questionable at best.
Have a read of this guide (see link below) to dosing with NDT, how to titrate up to optimal dose, including how long before increasing and by how much:
tpauk.com/main/article/trea...
You may have gone too quickly too soon. It can take a while to adjust to the T3 you may have been starved of.
I took 125mcg of Levothyroxine (felt like pants) but any more made me feeling totally wired and any less comatose so it was as good as it was going to get after two years of suffering on it.
I followed the TPAU guide, I had to split the dose and titrate up gradually, as recommended. I felt much better with each increase until I felt completely well again and stayed on that dose. Perhaps I was lucky that it went to smoothly but I suspect the guide is spot on.
I take ThyroidS, initially I needed 125grains but over 7 years I have had to up it to 1.75 grains. I did try some American NDTs (not erfa) but they have been reformulated since. I found ThyroidS was as good if not superior to them. Each person will have their ideal dose, I trust you find yours.
I hope this helpful.
Interesting article thanks. I had the adrenal test before I started and it's not a problem for me so probably why I was allowed to go up quicker than some people suggest is OK. It makes me think I'm simply not on enough, I was OK for a few weeks during switching and then so deathly tired, probably when the levo started to wear off.
Could be. As the guide says if you go up gradually even if you overshoot it’s not for long given the short half life of T3, it’s only hours not weeks like t4 and you can drop back down. Just under a quarter grain over optimal is not going to kill anyone.
Great, I might just try it and see. I have started to take the second grain in the afternoon, I literally feel the first one wearing off. Then I feel better after an hour of taking it. I also wake up tired and feel better after taking a grain and eating so it seems the T3 just isn't lasting long enough and it's enough to stop me feeling bad for awhile but not enough to make me feel great. So I need more I'm sure.
Could be so. I found I had to split the dose initially but after a year or so I could take it in one go a day and felt exactly the same. Hopefully the next increase will reduce the lulls - you can only try and see if that’s the solution. You will know of you’ve taken too much, it feels very unpleasant .
My transition from T4 Levo to NDT was seamless. I went right from Levo to NDT. I am sorry it was not that way for you. Everyone is different, but I was on 125 and with NDT 3 grains of Thyroid-S. You might need to take 1 grain more to feel better. Also, the different brands make a difference. Perhaps another brand of NDT? Also, just as there are those of us who do much better on NDT, there are some who do better on Levo. Good luck!
Thank you all, really useful, enlightening and encouraging comments, links and suggestions. Basically I'm taking from it all that there IS an adjustment period, I'll wait til it's been 6 weeks before judging. Also, I think I don't have a problem with a relatively quick move over as I was tested for adrenal issues prior to switching and I have none, so it's more my body waiting to get to the right levels. I may need a higher dose. Also, my low ferritin and vit d may be affecting my move over too - I'm working on those! Fingers crossed within a few weeks I'll have adjusted to the NDT or I may need to adjust the level and take a bit more. And I may just need to treat low oestrogen too!!
I use betteryou vitd3/k2 and their iron spray, I feel better for them, my iron was not optimal last test and I had serious vit D deficiency when I was on Levothyroxine, although that was a long time ago. The sprays avoid any problems absorbing via the guts and are easier in my opinion as they aren’t likely to interfere with the NDT although I take them at night and NDT am can’t sleep if I take NDT before bed also easy to forget it in a night time sleepy stupor. I take mine sublingually although many here say it’s a waste of time and ThyroidS is not designed to be taken that way, it still works fine and I saw no improvement just swallowing the grains whole, I hope it allows some absorption of the calcitonin. I’ve been told the T3 molecules are too big to pass through the mucosa in the mouth but I could not find any academic studies to back up that sublingual ingestion is a waste of time. It still goes down the gullet ultimately. Acella NDT is designed to be taken sublingually, it’s in their PILS sheet, but I think it’s the only modern one that is, now. The taste is not bad considering what it is, like papaya curiously. I suppose all those sort of gubbins were called the sweet breads but I think the thyroid glands are always removed, eating a whole one unbeknown might be a dodgy proposition.
Hi, when I switched from levo to NDT I needed the same amount of t4 from levo(125mcg like you) otherwise I felt low(no matter how much t3 I took), on Thai ndt I was on 3,5 grain. My transition was shorter than others, about 2 months.
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