NTD dose advice please : 2 weeks ago I started on... - Thyroid UK

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NTD dose advice please

HopefulMe23 profile image
35 Replies

2 weeks ago I started on Armour NDT as I wasn’t coping well on Levo. My DIO2 result came back as confirmed on one side so this might be partly a cause if not feeling great on Levo. The prescribing doctor suggested a dose of 3 grains of Armour and said I could start on that dose right away. Following the advice here I knew that probably wouldn’t be a good idea so I did 1 week at 1 grain and then 1.5 grains. Almost immediately with ndt I have been sleeping better and definite improvements. My worse hashis symptom has been horrendous ocd anxiety so when this started again last week I went back down to 1 grain, now I am not sure if it is because I am under medicated at 1 or 1.5 grains (I have now started falling asleep in the day, gained weight etc) or if it is because I stepped up to quick to 1.5 from 1. So do I go back to 1 or stick with 1.5 and push through. Would really appreciate any advice.

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SeasideSusie profile image
SeasideSusieRemembering

HopefulMe23

I don't understand how any doctor can suggest that 3 grains might be right for you, and to start on that amount isn't a good idea. The idea is to start low and build up.

My understanding of the NDT protocol is

Starting dose: 1/4 grain (15mgs) in the morning and quarter of a grain in the afternoon and stay on this for 7 days. If no adverse effects:

Week 2: increase your dose by another 1/2 grain (30mgs) a day. Take half a grain in the morning and half a grain in the afternoon (total 1 grain daily) and stay on this dose for at least 3 weeks. If no adverse effects:

Week 5-6: increase by another 1/2 grain and take 1 grain (60mgs) in the morning and 1/2 grain (30mg) in the afternoon (total 1 and 1/2 grains daily). Stay on this dose for 3 weeks and again, if no adverse effects:

Week 8-9: increase by another half grain and take one grain in the morning and one grain in the afternoon and stay on this for another 3 weeks (total 2 grains daily).

This may or may not be enough. If you are still symptomatic, increase by 1/4 grain (15mg) every 3 weeks. If you feel overmedicated then drop back to the previous dose.

If changing from Levo to NDT then for many people they can stop taking Levo one day and start NDT the next day but I wouldn't have thought swapping to 3 grains without building it up is a good idea, you might overshoot your sweet spot if you don't need that much.

Many people split their NDT dose, taking half the dose in the morning and the second half later in the day.

As I don't take NDT I can't speak from experience nor am I advising what you should do, I am just passing on what I read about the protocol.

HopefulMe23 profile image
HopefulMe23 in reply to SeasideSusie

Thanks SeasideSusie, 3 grains didn’t seem right to me either so I haven’t taken at at any point. I took 1 grain, then increased to 1.5 and now I just can’t tell if the symptom flare is that I am under medicated or that I went up too quickly. On the one hand I am falling asleep all the time, foggy and gaining weight so that tells me my body is asking for an increase, on the other hand I don’t want to go up too quickly. Plus I still don’t know if my anxiety gets worse when I am under or over medicated, I think under might be worse but knowing my luck it gets worse with both 🤦🏻‍♀️. This has been the hardest thing for me, doctors giving wildly under or over doses/changing it a lot and then me trying to guess on my own what the correct dose for me is. If I follow the protocol you have kindly provided then as I am now starting week 3 I should drop back to 1 grain and stay with that for 2 more weeks. The only thing I wondered about the protocols is if they are for patients who are completely new to thyroid replacement rather than those who are swapping from Levo and/or t3. I only wonder this because for those patients dropping down the dose might cause symptom flare up. I so wish I had a doctor who could just tell me what to do who I could rely on and have faith in, I think that is probably what we all want. Thank you again for replying.

radd profile image
radd in reply to SeasideSusie

SeasideSusie, 

‘If changing from Levo to NDT then for many people they can stop taking Levo one day and start NDT the next day ..  ‘ 

No, T3 or a T3 containing meds should always be introduced slowly.  Therefore, people should not switch directly from Levo to NDT if T3 hasn’t been previously medicated.

You have also given a protocol for brand new medicaters that will keep the O/P who has been medicating 100mcg Levo under-medicated for 5 weeks.

    HopefulMe23

I use Armour and get on well with it but Hashimotos can make introducing NDT tricky as without adequate meds you risk thyroid activity and a further increase in thyroid antibodies (Hashi attack). Some functional practitioners such as Datis Kharrizian also consider too much thyroid activity risks activation of that same molecular mimicry that attacked your own gland could be now aimed at the NDT, and this would impede your chances of ever being able to raise.

If this were me I would reintroduce Levo asap and switch over to Armour slowly, whilst decreasing Levo dose. Another reason for keeping thyroid hormone levels optimal is your anxiety and you might find Armour T4:T3 ratio isn’t right for you and so necessitates a final dose combo anyway. 

Manufacturers claim 1 grain of NDT's biological equivalence is that of 100mcg Levo but its commonly thought to be about 88mcg Levo. Whilst you won't know your final dose until you get there, a switch from 100mcg Levo would work out equivalent to roughly 1 and1/4 grains. I take 1 grain and 1/4 grains topped up with some Levo as found the Armour T4:T3 ratio to be too T3 potent for myself.

Are you g/f? Have you taken steps to try reducing thyroid antibodies? Did you get oestrogen levels tested?

HopefulMe23 profile image
HopefulMe23 in reply to radd

Hi Radd,

I have just reread my post and I missed an important point which is that as well as Levo which I never seemed to cope well with, I was also on 12.5 Tiromel so I have had t3 but I read that some people get on better with ndt so I stopped both Levo and t3 to switch to ndt, did 1 grain for a week then 1.5 grain. I am so exhausted but also anxious, wired and tired would be a good way to describe it. I think I might be under medicated now but I also don’t want to miss my sweet spot, I am finding it so difficult to know what to do. I am really committed to making it work with NDT and the private doctor said I need to give it 3 months to know if I get on better with it but I am just really struggling with working out how to get to the optimal dose and whether to go up or down now.

HopefulMe23 profile image
HopefulMe23 in reply to radd

sorry also forgot to reply to your questions, I have been strictly gluten free for a couple of months now. My gp agreed to check my oestrogen and iron in a blood test but she has written on the form that I can only have that test in June 🤦🏻‍♀️ I have got the regenerus saliva adrenal test coming and will do this on 19th as that is correct point in cycle. I need to contact them to ask if it is ok for me to take ndt on the day I am doing the saliva test.

radd profile image
radd in reply to HopefulMe23

HopefulMe23,

Oh perfect then, you can do a straight swop.

That's what I did when I switched to WPThyroid and it all worked well. However, when I then switched to Armour several year later I had symptoms of over medication almost immediately, so reduced Armour dose and topped up with some Levo. This is usual practice as the set NDT ratio doesn't suit everyone.

Remember over medication and under medication symptoms can overlap and when we are in the middle of it, it is hard to rationalise what is going on. If I were you feeling so bad after the NDT switch I would reduce to 1 grain, add 25mcg Levo and test in 6 weeks to see what is going on.

Jodypody profile image
Jodypody

I have to agree with your doctor on this one which might throw up some negative comments but I went against my endos advice and slowly introduced and basically wish I hadn’t. It wasted so many weeks of hardship and suffering. Unless you are frail or have a weak heart you can swap across was his advice and I for one agree. As I believe Shaws who was an incredible admin on here says this isn’t poison we are dealing with. Weight gain and anxiety coupled with daytime sleeping is most definitely an under dose thing. Why don’t you speak with your endo again for reassurance maybe.

HopefulMe23 profile image
HopefulMe23 in reply to Jodypody

Thanks Jodypody, that is much appreciated.

FancyPants54 profile image
FancyPants54 in reply to Jodypody

Ah, but anxiety and daytime sleeping is also a sign of overdosing Armour for me. My symptoms of too little and too much are identical really, until the point where my HR will increase, which looks to be around 2.5 weeks into a higher dose.

HopefulMe23 profile image
HopefulMe23 in reply to FancyPants54

That is what makes it so tough, when the symptoms are the same both ways, so difficult to know what to do 🤦🏻‍♀️

Jodypody profile image
Jodypody in reply to FancyPants54

I hear you but I doubt it’ll be an overdose situation at 1 or 1.5 grains if the doc has specified 3

FancyPants54 profile image
FancyPants54 in reply to Jodypody

I would not take a doctor's ideas too seriously if they wanted to straight swap to 3 grains. That's potent. I did my switch to 2 grains and it was a bit lively for the first couple of weeks but worked out about right.

HopefulMe23 profile image
HopefulMe23 in reply to FancyPants54

I am starting on 2 grains today, 1 in the morning and 1 in the evening, so will see how that goes. Thank you again for your help and support, I am very grateful.

Brightness14 profile image
Brightness14

When I switched to NDT from Levo. I started with one half in the morning, no Levo then after 7/10 days I added another half in the afternoon and so on. Taking my temperature and BP each day. Slowly is best. I landed up with 2.25 grains for years. 1.25 at around 6am and the other one in the early afternoon. It took a few months to sort out. After about 12 weeks I had a blood test to find out what was happening. I have no thyroid and no gut problems either.

Alanna012 profile image
Alanna012

I tend to agree with JodyPody

Anecdotally, I question whether this conventional wisdom to always start really low on NDT is always right in every case.

The first few times I tried (then natur-thyroid) I followed the protocol starting low. Felt awful, anxiety , shaking etc, and dumped it. Inbetween this, angelic forum members reached out privately with support and advice, but I couldn't make headway.

A year later tried again, and came back to this forum complaining it wasn't working, had horrendous symptoms and literally couldn't walk without shaking. Sleep was terrible, I felt like I was dying. Advised it might just not work for me.

Dumped it again and more time went by....then after an intense period of feeling suicidal on Levo only, I decided to give the NDT one last chance.

This time I said 'F this' and started straight away on 3 1/2 grains. I took two grains in four hours...felt extremely shaky and had intense fibromyalgia pain. But then waited another four hours and took another, then a half grain at bedtime.

Stayed awake all night. Decided to drop the half grain before bed. Then took one grain again in the morning etc etc.

After just 4 days I felt So. Much. Better!! Slept like a queen. And that was when I finally discovered the miracle of NDT. I improved from then onwards.

All the previous bad symptoms of taking it before evaporated. I eventually weaned down to 2 1/2 to 3 grains and after a few months could get by okish with just 2.

I have tried to work this out, and my conclusion which isn't based on any science, just theory, is that for some people who have been undiagnosed hypothyroid for many years, then had the situation compounded by being on levo only and underdosed (lethal combo) they are in a state of living myxoedema . Then you go on a half grain of NDT twice a day or worse a 1/4 grain and actually you may become more hypo. There's also something I find consistently true when I supplement with T3. My body always needs another dose at regular intervals over time, or I get an extreme drop (feeling suddenly freezing, extreme lethargy etc) so starting low with wide gaps between doses actually makes these symptoms worse. That could (and did in my case) lead one to conclude that NDT or T3 doesn't work for them.

It could also be that more T3 helps the adrenals and too little is actually worse than none. In hormone therapy... even when supplementing sex hormones via pill or cream or gel....it often is this way. Not getting enough so only supplementing halfway, which suppresses your feedback loop without correspondingly raising the desired hormone can be worse than not getting any. You can feel awful in this space.

I have seen suggestions before, that a person continue taking levo and slowly reduce it while simultaneously attempting to slowly start titrating up in NDT and I wonder if that is why. I personally recommend experimentation. We are all so individual.

I will say though there are some NDTs that may just not suit one despite various attempts to get on with it. All my attempts to do well on Erfa and Thyroid S failed. So there's that to consider. If we had genuine choice in the medical system, it would help considerably in the process of finding what works for us individually and what doesn't.

HopefulMe23 profile image
HopefulMe23 in reply to Alanna012

Thanks Alanna, I just checked a conversion chart and it seems like 2 grains might be closer to what I need. I am so desperate for some relief from the mental health symptoms I have been experiencing for the last year. The first couple of days on ndt I noticed an improvement but now I seem to have slumped right back down. Perhaps I should go to 2 grains split through the day today and see how I get on with that.

Alanna012 profile image
Alanna012 in reply to HopefulMe23

Yes, try it and see how you get on.

It is also very common to feel ok on a certain dose then the body catches up and you find you need more. This even happens to people who are using levo only. They may get to say - 100mcg - feel good then after several weeks or months start feeling lousy and need to go up again. Works in reverse too.

When you are stable, the symptoms won't come back. You should ultimately always go by how you feel. Charts are great and all, but it's what YOU need that matters at the end of the day.

HopefulMe23 profile image
HopefulMe23 in reply to Alanna012

I really feel like that is the hardest part, if you were on 100 Levo for example, ok for 2 weeks and then very symptomatic but bloods in range it is then hard to know if you need to go up or down with meds. With NDT I haven’t given it long enough to have bloods yet (and I know we are meant to go more by symptoms than bloods) so I really feel I am flipping a coin on whether I need more or less. I just wish I could go back to before I every got diagnosed and started on Levo in the first place. I could live with my symptoms fine back then, I feel so awful now, every area of my life is being affected and wonder if things will ever get better 😔

FancyPants54 profile image
FancyPants54 in reply to HopefulMe23

If you are determined, and you are because you are here experimenting with NDT and talking to us, things will get better.

In my case I have learned that when I feel bad, I want to move up in dose but I had best try a reduction first. But you are younger and need more hormone perhaps. Don't be scared of it. If you take more and feel worse, it's soon out of your system. I just had a few days of high heart rate and feeling anxious about it, 2.5 weeks after increasing to 2.25 grains of Armour NDT. It hadn't felt right at that dose at all but I wanted to see if it would settle. That increase in HR was enough of a clue for me that I needed to go back to 2 grains. So I skipped a day's meds to let some flush out and then started again on 2 grains. It took about 36-48 hours total to have my HR back where it was and for most of that time I was starting to feel better. So it's not so terrible to experiment.

For me, I have a supply of T3 on hand (as do you I suspect) so you could try taking a small dose of it, a 1/4 tablet perhaps, at the point the anxiety is bad and see if it helps or hinders. I find for me if I get anxious, a 1/4 T3 will calm me within 3/4 hour. If it makes you feel worse, then you know you need to back off a bit not increase.

The really hard part about all this is that we have to make these big decisions at the points when our brains are in the worst place to make them from!

HopefulMe23 profile image
HopefulMe23 in reply to FancyPants54

Thank you, I am really grateful for your kind words and there is lots of wisdom which I needed to be reminded of and will refer back to on tough days through this journey.

Geography1 profile image
Geography1

Hi, all I can say is that in 3 years I was never able to raise up armour dose from 1/2 a grain because it gave me extreme anxiety and at the end I even got Rynauds and my antibodies are four times higher than when I started, and was feeling awful, now 2 months on Levo amd no anxiety, no rynauds so far and overall feeling better. I read somewhere that people With Hashimotos risk reacting to Armour and making symptoms worse. I would go back to your previous meds If O were you, and see if you feel better and make a decision based on that. Good luck

Alanna012 profile image
Alanna012 in reply to Geography1

Dr Berg has a video on NDT tolerance on YT.

In the case of people having autoimmune reactions to the NDT, he recommends stopping the NDT then taking taking a bovine glandular as opposed to a porcine one (slightly less bio-identical) for several weeks/months then reintroducing the NDT.

But it's important to remember that levothyroxine is also bio-identical and some people (including myself) react to it as well. I found Armour did cause more of a reaction than NP thyroid or even Erfa and I'm not sure particularly why. Sometimes I take antihistamine at the same time as thyroid meds. That said I have extreme allergies.

I also find upping the my doseage of selenium and zinc helpful.

Hey there I've been on Natural thyroid for over a year , I had started on a grain , felt very sick went down to 1/4 grain and have been on that . It took me 3 weeks to feel better while my body adjusted to it. Maybe talk to Doc and see if dose can be adjusted more. Wish you well!

HopefulMe23 profile image
HopefulMe23 in reply to

Thank you, I appreciate it.

NIKEGIRL profile image
NIKEGIRL

hi. I did a straight switch 150mcgs of levo tablets to 1.5 grains of NDT. I had capsules of NDT made for in a compounding laboratory. so couldn’t do the gradual tablet change over. I have found the change over to be ok. If anything I could do with a bit more NDT.

HopefulMe23 profile image
HopefulMe23 in reply to NIKEGIRL

Thank you, that is good to know. Do you think you will go to 2 grains next time you get NDT?

NIKEGIRL profile image
NIKEGIRL in reply to HopefulMe23

I’m on 1,5 grains for another 4 weeks then I do a blood test. I live in New Zealand and a laboratory makes my NDT. But yes I would like to go to 2 grains as I have some lingering symptoms. But coming off the levo helped me considerably as I am a poor converter. I had a thyroidectomy 4 months ago and I had severe graves for 3 years .

Imaaan profile image
Imaaan

Hello

It took me about 3 weeks for my symptoms to settle after every increase. My symptoms were horrendous and I started feeling better on the 3rd/4th week.

I was on 75mcg of t4 and slowly decreased it as my ndt was increased. Initially began with 30 mg of ndt morning and 50mcg t4 taken at night.

I can look up my dose changes if you'd find it helpful.

HopefulMe23 profile image
HopefulMe23 in reply to Imaaan

Thank you, I am wondering whether to go to 2 grains, stick on that and push through those tough initial days until my blood test in 6 weeks time.

Imaaan profile image
Imaaan in reply to HopefulMe23

Honestly I went very slow. It took me about 11 months to get to optimal. My free t3 was below range when I started so my whole system wasnt in the best shape.

I made changes every 4-5 weeks or so at increments of 15mg of NDT and took blood to see where I was at. It's not advised to do bloodwork before 6 weeks but I was using it as a marker of my free t3 and free t4 to figure out my next move. My doctor gave me the freedom to proceed how I wanted to, thanks to God.

Symptoms of being on too much and too little are the same for me and it confused me so I just relied on getting bloodwork every 4-5 weeks.

Personally I would stick to 1.5 grains for another 2 weeks to let your body catch up because you've moved too quickly for my liking.

In your shoes I would stay on 1 or 1.5 grains for 4 weeks. Then I would increase 15 mg.

I have to say using the t4 (levo) and splitting my ndt doses through out the day and night helped me cope better rather than taking it all at once. Currently I'm splitting my dose 3 times .

Also, I had to support my adrenals with adaptogens to help me get through but I still suffered a lot after every dose change

I'm currently taking 150mg of NDT and weigh around 46 kg

lauraleeds666 profile image
lauraleeds666

I started on NDT (Armour) in Sept 2022. The private thyroid doctor said to stop taking the levo one day and start taking one grain of NDT the next day She recommended one grain for three days then take 1.5 grains for three days then the full two grains after that UNLESS I had typical 'over' symptoms (palpitations, anxiety, tremor). I left slightly "buzzy" for the first fortnight then everything settled down and nearly all of my unresolved hypo symptoms that I experienced on levo have resolved. The only thing that is still bad is my sleep. NDT is dosed on weight so depends on how much you weight as to whether three grains is right for you or not. Two grains is about right for my weight of 75 kilos. If you weight around this or less than this then I would query three grains.

HopefulMe23 profile image
HopefulMe23 in reply to lauraleeds666

Thank you, I am the same weight, around 75kg. I have gone to 2 grains today split into 2 doses and will see how I get on with that. Very grateful for you reply and info about what has worked for you.

lauraleeds666 profile image
lauraleeds666 in reply to HopefulMe23

Glad I could help. I was told to split the NDT into two doses (one upon waking and one around 3pm). I found it quite difficult to time eating around the second dose. I recently swapped to taking both grains together when I wake up and I haven't noticed any difference in afternoon/evening alertness.

pennyannie profile image
pennyannie

Hello HopefulMe :

Personally I think you have gone up too quickly on your dose of NDT :

I have Graves Disease and post RAI thyroid ablation so can only speak from my experience in self medicating with NDT.

I stopped 125mcg T4 one day and started NDT the following day and slowly built up my dose in 1/4 grain weekly increments as the T4 takes around 6-8 weeks to fully leave the body so as one treatment options reduces in it's strength you slowly build up the next treatment option.

The plan was to get to build up to 2 grains which I would then hold for 6-8 weeks and then run a blood test to compare with my bench mark readings of Free T3 and Free T4 from before starting the experiment.

Throughout this period you monitor your physical symptoms of blood pressure, pulse and temperature twice daily and these first two remained constant for me but I tracked my temperature rise from 35.4 to 36.6 where it still tends to hover some 5 years on now.

There comes a week when you feel you have gone a little bit backwards - so drop back down that last 1/4 grain increment and stay on that slightly lower dose for 6-8 weeks letting it settle and bed into the body and then run a blood test to see where your T3 and T4 sit compared to before you started this experiment.

Hopefully by this time your symptoms are relieved but if not and your T3 especially hasn't moved much from your bench mark reading NDT may not be the most suitable treatment option for you.

If everything is going well but you still have some symptoms of hypothyroidism you continue up slowly from 2 grains in 1/4 grain increments and repeat the process.

I only managed to get to 1 + 1/2 grains and after I let this dose bed, and settle in to my body I ran a blood test and my T3 and T4 had swopped positions as to when on T4 monotherapy.

My T3 was 110% and my T4 25% through the ranges - i was very well and not over medicated and my TSH was at 0,01 just as it was when onT4 monotherapy.

Having Hashimoto's does tend to throw a spanner in the works as you are liable to erratic own thyroid hormone production and there is a school of thought that suggests that patients with Hashimoto's AI disease tend to do better with synthetics rather than organ derived NDT which can trigger further AI response.

No thyroid hormone works well until your ferritin, folate, B12 and vitamin D are up and maintained at optimal levels.

HopefulMe23 profile image
HopefulMe23 in reply to pennyannie

Thank you, I managed to get b12 up but still have some work to do on Vit D, folate and ferritin (for that one I am waiting on full iron panel blood test before I supplement) so I still have a way to go unfortunately.

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