What's your experience with NDT??

[Nessiam]

Hi! Could anyone please share their experience with NDT? How you felt when you first started, what to expect, how you're doing now.. etc?

Anything would be great, thanks!

[TupennyRush]

I was on levo only for a year and then switched to ndt. With levo my symptoms were alleviated but not sorted out. So my 7 day hormonal migraines every 2 weeks had reduced to 3-4 days every 2 weeks, I had the 'all energy draining out of my feet feeling every few days instead of it being an hourly event and my brain fog had lifted. Cold feeling had gone to every few days.

With ndt my migraines reduced to one with my period and then to a bit of a headache for the day before my period over the course of 6 months. Cold feeling reduced to needing a hot water bottle for a day or two before my period and being normal for rhe rest of the time. Tiredness again only seems to happen a couple of days before my period. The biggest surprise was that my brain started working much better as I hadn't realised that it still had a way to go because I'd improved from completely gormless to functional on levo and hadn't cottoned on that I was still about 30 iq points below par (mainly because I was ill for so long before I was diagnosed so my brain not working had become so normal). Basically after 6 months in levo I had got my personality back rather than being a shadow of myself

I have the di02 gene snp btw.

I lost around a stone on ndt in a year compared with half a stone on levo.

Yes I still had some issues during the first 6 months on ndt, mainly because I tried to do everything I hadn't had the energy for for years and then tired myself out but I was able to do more and more without crashing and I'd say I'm back to where I should be.

So, two years into taking ndt (nearly) I'd say life is back to normal. I have a few grotty days before my period (but I always have) but otherwise I'm back to being me. I try to schedule things so I have rest times but I'm now 50 so I suppose I can't expect to be the same as I was at 20. I'm probably approaching peri menopause (on my mum's side we have late menopause between 57 and 60 so I'm assuming I will have something similar) which may also be a factor.

I am struggling to lose the rest of the weight that I put on (over 4.5 stones and I'm still carrying around 2.5 of this) but the endo insisted I take metformin in Feb this year and it's helping (another half a stone gone).

Hopefully that helps but remember we're all different

Good luck

[Nessiam in reply to TupennyRush]

Thank you so much, I really appreciate the details!

[TupennyRush in reply to Nessiam]

No probs - I was on 100 levo and now on 1.5 grains Naturethroid. Forgot to say my hair's growing back and I have vestigial eyebrows (I lost all hair on side of head plus receding hairline and eyebrows

[Glynisrose in reply to TupennyRush]

Have to say that my cousin who is diabetic, says that metformin stops the production of B12 and thats why he now has to have injections.

[TupennyRush in reply to Glynisrose]

Yep. My b12 dropped while taking it but I'm supplementing (with other b complex to help absorption) and it's helping me to lose weight. Plan is to get to target weight (which is not the same as before I became ill but higher as I don't expect miracles) and then stop taking it. Hoping I can stabilise at an acceptable weight (to me) and go back to just taking ndt.

[chiefengineer]

I went from 125mg of levo to 4 grains of Nature throid overnight! I remember standing in Liverpool street station out of breath, heart pounding and feeling dizzy, Apparently i was bright red too.

When I split the dose 2grain in the morning and 2 in the afternoon things started to settle down. I eventually settled down on 4 1/2 grains and was quite happy until i started to put weight back on and feeling tired again.

I tried upping the dose recently to 5 grains but it was obvious it was too much. Heart starting to race, dry eyes, out of breath after any sort of exercise, feeling excessively hot all the time.

So I'm back to 4 1/2 grains which i split 2 1/5 in the morning and 2 in the afternoon it took me a couple of months before i felt completely comfortable with the dosage and actually taking something that isn't recognised as bonafied medication by the NHS.

Having said all that it's the best thing I've done for my hypo. Stick with it, you need to give it a bit of time your body will tell you one way or another if you are over or under dosing and the good people on here will always help you out, never be afraid to ask.

Rgds

Bob

[Redditch in reply to chiefengineer]

Gee's Bob 4.5 grains of NDT is a chuff of a lot more than 125 of levo. What's your TSH look like in that?

[Nessiam in reply to chiefengineer]

Thank you so much! This forum is so great, I finally don't feel so alone in all of this! & im glad it's working for you now (:

[Redditch]

I was diagnosed with Hashimotos 4 years ago. I'd already quit my job I was exhausted, brain fogged, incompetent, and in pain in my legs.

I started on Levo and my TSH went from 13 to 3. Doc said I was fine. I was not.

I tried T3. That worked instantly but made me itch all over.

I bought NDT Armour online

Started taking it and felt better in about two we. I found a sympathetic endo and started getting in prescribed but now the prescriptions are much more expensive (private) than buying it myself. So I have found a reputable on line pharmacy and self medicate. I started on 1.5 grains and now take 2 grains.

New job, Director with demanding hours and brain use.

All good.

I have had Armour, Erfa and Nature thyroid, I like Erfa the best.

[Nessiam in reply to Redditch]

Congrats on the new job, I'm glad it's working for you! So you would say NDT worked better than just taking T3?

[Redditch in reply to Nessiam]

I think if I could take T3 I would because it's instant. 20 minutes after taking it you get your beans back. But there are supply issues, at one point we couldn't get it, that worried me and also it made me itch. I've done Two plus years on NDT and it works and recent bloods show I am converting really well, which I didn't with Levo so T3 would be a retrograde step. I think T3 is great to get you out of a crisis or for people who don't convert, but long term I think NDT is best

[estrellaliliana]

I self medicate on ARmour thyroid and feel ok. I was on too much of a low dose when docs prescribed and had lots of symptoms then I started to self medicate to get better and I did. Tried once levothiroxine for 5 days and felt horrible, a huge change, so I went back on Armour. Lately I was nervous, heart rate a little faster and decided to bite off a piece of the pill so instead of 60mg I must be taking 50mg and I felt right away better, more calm, that level of nervousness is gone. I have read quite a bit on hypo to self medicate. NDT is better but it may not be for everyone. Usually when you start a specific med you stay on it and don't change to another one, unless you really don't feel good at all and want to try another one like I did (because Armour was not available to me at that time).

YOu can find more info on what you want by searching with keywords, people talk about how they feel on NDT.

good luck

[Nessiam in reply to estrellaliliana]

Thank you so much, I really appreciate it!

[jacquelis2]

Hi Nessium - Started ThyroidS last Wed. Felt OK at first but dreadful by Sat. back on levo. yesterday. To be fair I have had a virus so back on ThyroidS this morning and will stay on this until the weekend unless I feel ill. That will be 10 days apart from the one-day break so will see how things go. I have been OK on levo. but thought it would be nice not to be putting chemicals in my body everyday. Jax

[Nessiam in reply to jacquelis2]

Oh we started at the same time! I'm on Naturethroid. No improvement yet, still feeling SUPER sick 24/7 but I've heard it really takes about a month to start feeling the benefits. Crossing my fingers for us both!

[NatChap]

I'm on Nature-throid, have been since March after being on levo for a year. Click on my profile, lots of info on past posts x

[Nessiam in reply to NatChap]

Thank you so much, I'll definitely look through it! (:

[jacquelis2]

Hi Nessium - Hope I have made the right decision trying Thyro.S but difficult to tell with having bug. I don't want to mess things up again and I hope your sickyness goes soon. I do feel brighter mentally so could probably mix the two. Good Luck, Jax

[Geniler]

Changed my life. I was like many of the others on this forum. Chronic joint pain, migraines, fatigue so bad I couldn't work. Found a dr while living in Homg Kong who prescribed NDT after 4 years on Levo. She also advised eliminating grains (not just wheat) and dairy. I also ditched sugar and alcohol at the same time. I dropped 13kg in 5 months. No more migraines or joint pain and now I run 2xweek, do yoga, play squash and I'm back working in a pretty demanding job which I love. Only hiccup was getting NDT when I moved to the UK. That's now resolved.

[Nessiam in reply to Geniler]

Wow that's so amazing to hear, actually gives me some hope! I'm so happy for you!

[Jendon]

Hi guys I'm new to this site although not new to taking Levo which I take 125mg and have done over 20 years give and take. The dosage I've taken over this time goes up and down. I've recently had blood test back again last Friday and doc says that the results are satisfactory?? For who I don't know, because for me they not, my mussels ache, I'm cold all the time, constipated, put on half a stone in 2 weeks and only sleeping a few hours a night. I know my own body and after suffering with an under active thyroid for over 20 years I know the dosage is no right. I've only recently heard about T3 and NDT so please help. You keep mentioning grains? sorry for being so thick but I presumed they would be in a tablet form? Would I still need to take my Levo with them? Can any body send me privately direct to me email address any links to be able to purchase them from? If I go a head and decide that this would be the right medication for me, would I need to ween my self off the Levo first?

[Nessiam in reply to Jendon]

Hi! Hopefully someone will come and answer your questions better than I can, but if not, make your own post with this and people will answer on that! I'm new here too and so far it's bees so great! Good luck! (:

[Jendon in reply to Nessiam]

Thank you Nessiam, I was unsure how to start a post, but I have managed to suss it out now. Thanks for getting back to me to let me know.

[Rainbow100 in reply to Jendon]

Hi Jendon, welcome to HU TUK, you're in good hands here, there are lot of friendly and supportive people who will help you out, I know this from experience.

A "grain" was the traditional measure of NDT dosage and it's still use today. Regardless of which brand of NDT you buy they all have the same amount of thyroid hormone in them - 38mcg T4 + 9mcg T3.

Some people take levo + NDT together, some switch from day 1. It would seem that most are happier doing a gradual transition but you should read up more about this on here and decide for yourself.

I suspect by now you have prolly received pm's about where/how to buy your own NDT and T3, Thiroiyd NDT from Thailand and T3 from Greece are prolly the cheapest. Let me know if you still want this info.

Good luck and keep us updated :o)

[vixvixvix]

Been taking thiroyd for nearly 7 weeks now and it's amongst the best thing I've done healthwise (funnily enough they all seem to be related to ignoring the nhs and gp advice and go off big pharma).

I've been really lucky and felt amazing within the 1st week and now it's more tinkering with supplements and exact amount. B12 and nutriadrenal seems to help me and I'm going to try to add some ashwanger.

Was on 75mg levo (but felt terrible) and now on 2 grains. I tried to increase 1/2 then 1/4 grain last week to see if I'd feel even better (I still have brain fog, awful memory and tingling arms) but felt hyper on both so I guess no more increase!

[Nessiam in reply to vixvixvix]

Thank you! Wow that's awesome, I'm glad you're feeling better and made the right decision!

[BadHare]

Hi,

My experience has been very good with WP Thyroid, good with Nature Throid, but very bad with Thyro-Gold. There are lots of other brands I haven't tried, bit intend to stick to the first two.

I self-medicate, after doing the Barnes basal body temperature test, then started with a 1/4 grain dose & increased gradually for two months before I noticed a change after a few weeks on 1 grain. Initially, 1 1/4 grain felt righ, but I then needed to increase again a few months later. I now take 2 1/2 NT with 12 1/2mcg of T3, or 2 WP & 12 1/2mcg T3.

If I don't take enough, I ache & feel sluggish, & have to sleep in the afternoon. I'm not cold for the first time in 40 years, & can eat normally. It's been a real life changer, & all positive aside from the month on T-G. Other people like it, but we react differently to different compounds in meds, so if one doesn't work well for you, try another. I also take the cheap Greek T3, but find that weaker by half, in comparison to WP. Again, that's just my experience.

M*

[Nessiam in reply to BadHare]

Hi! Thank you so much for going into detail! Im so glad it's working for you! I'm self medicating too on Naturethroid but I'm seeing more and more about T3 and wondering if/when I should add it? My FT3 was at the lowest level of the range so I'm thinking it could really help but I want to do it correctly to get the best result possible and I just started NDT a week ago. Any advice?

[BadHare]

You're welcome!

A friend brought me the T3 from Greece, where it's £1 for 30. I'm mainly using it because it's so cheap. There are a few posts about its efficacy, so maybe take a look at those before you buy. For me, importing enough to work would work out the same cost as my NDT.

I find the WP a little stronger than NT, which is odd as they're both made by RLC Labs. I've only been taking the latter for a week, so i'm not sure I'm imagining it, or it's the weather!

This is interesting: stopthethyroidmadness.com/a... I've seen a similar page for synthetics, but can't find it.

M*

[Nessiam in reply to BadHare]

So are you saying you're going to stop the T3 when you run out? Do you not notice a significant difference?

[BadHare in reply to Nessiam]

I'll continue to use it if kind friends can bring me some from Greece.

25mgs should be stronger than 1 grain of WP, but feels more like half a grain. Lots of people find it's great, but I can only rate my experience. The maths on taking 100mcg a day at import price worked out the same as 2 1/2 grains of NDT. Perhaps I''d feel differently with a split dose, but then I'd have to go hungry twice a day.

I took T3, hoping to grow more hair, but all that's grown so far is 1 mutant eyebrow hair, which is the only one I've had to remove in over 12 years!

[helvella Administrator Thyroid UK in reply to BadHare]

So that you are aware, so far as I can make out it is illegal for friends to bring prescription-only medicines into the UK for you. It is only legal for yourself and members of your household.

This is NOT meant to be telling you what to do - just so that can make your own decisions with some understanding.

[BadHare in reply to helvella]

Thanks for letting me know!

[Hidden]

I was on NDT for year and a half and it did absolutely nothing for me. I tried several brands, I think WP Thyroid was weakest of them all, even Thyroid S from Thailand was better. Now I am taking only T3 for several months and I feel much better. I am on Greek Uni Pharma and it's a good potency T3 and cheap in the same time so I am finally satisfied.

[Nessiam in reply to Hidden]

Wow that's so awesome to hear, stories like this give me some hope! Thank you, I'm so glad you're feeling better! How much are you taking now?

[Hidden in reply to Nessiam]

My "sweet spot" is 87.5 mcg of T3

[Rainbow100]

peanut5, I too am thinking of adding T3/replacing altogether. Did you phase out the NDT gradually whilst adding small amounts of T3 or did you switch from day 1 ? after how long on the T3 did you notice an improvement ?

[Hidden in reply to Rainbow100]

I just stopped with NDT and took T3 instead. I was on 4 grains so I calculated how much it would be in T3 but just to be on the safe side I started with lower dose since obviously my conversion of T4 to T3 wasn't good. So I started from there and increased over time until I reached my sweet spot. I think I wasted 18 months of my life on NDT listening what STTP website was telling about it - that it's some kind of "miracle drug". It is not and it is not the right medication for many - but they won't admit that, otherwise how this woman (owner of that website) would be selling all these books she wrote

[Rainbow100 in reply to Hidden]

thanks peanut5. 4g NDT = 36mcg T3 so did you start on 25mcg T3 tabs ? did you split dose or all at once ?

agreed about STTM, they only give a very brief mention to T3. i've only been on NDT for 6 weeks, worked up to 2g now, i hadn't been on levo before that, and not seeing any change. i realise it's early days so i'm trying to persuade myself to hang on with dosage increases of 0.5g per fortnight and get to 3g and stick with for a few months at least.

i jumped the gun somewhat and already ordered greek T3, guess i'd better not rush things, i'm impatient and frustrated though :o(

[Hidden in reply to Rainbow100]

Yes, you can calculate how much of only T3 is in NDT and start with that dose. I calculated how much T3 it should be in T4 as well but I still first took less T3 than it should be if my conversion of T4 to T3 was ideal, because I knew that it was not. I think taking first just the amount of T3 you are already taking from your NDT and later slowly increasing is a better way to start.

[Rainbow100 in reply to Hidden]

thanks peanut5, that all makes sense.

[Glynisrose]

I have been on NDT for a long time now and have had no side effects and I am now even losing the weight I put on when I took levo!

[Nessiam in reply to Glynisrose]

That is so nice to hear! I'm so happy it's working so well for you, really hoping I have the same results!

[Glynisrose in reply to Nessiam]

Please do not do a direct swap. Build your NDT from a low dose to whatever is right for you. DON'T worry it is fine to panic at first, I did too! I thought about what I could do if it didn't work etc. but it did!

[Nessiam in reply to Glynisrose]

I'm actually starting from scratch, not swaping. This is my first time taking anything for my hypo. I'm 19 and I was just diagnosed after years of feeling severely sick so I'm really hoping it'll work for me like it did for you! I need my life back.