NDT dose, help! I am at a loss .: Hi! New here... - Thyroid UK

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NDT dose, help! I am at a loss .

Marie0606 profile image
18 Replies

Hi! New here. First forgive any grammar/spelling errors as English is not my first language. I suffer from hypothiroidism since I was 34 now 42, always took syntroid (from 25 to 100mg) and always felt misserable; here in my country doctors only test TSH, not even t4 and t3, let alone free t4 and free t3. My symptoms go from tiredness, joint pain, terrible hair loss, acne and the worst two: weight gain and brain fog (sometimes I forgot words, and I am a lawyer so you get the point), anyway as my drs were unable to help me I decided to try NDT thiroyd from Thailand by myself so stopped my 50mg of syntroid for 3 weeks and started 1/4of a grain of thiroyd today a week ago, by the second day I woke up without joint pain and to my rejoice NO brain fog at all, my thinking was super focus and my skin started to clear up. The thing is that I don't know if NDT is making me gain weight ( although I can not blame ndt 100% as have eaten very very bad this week even I am not craving sweets anymore) today my symptoms returned, at least my joint pain and I feel a weird muscle weakness, so my question is: Could this be sympyoms of my body needing to up the dose or should go back to synthroid (which made me misserable all this 9 years)? Or maybe I need only t3 like Cytomel? I can not ask any dr as they only prescribe syntroid or generic levothyroxine. Thanks!!! Ps. After the 3 weeks without syntroid I ordered a blood test: TSH, freet4 and free t3 ( no lab will run reverse t3 as they don't even know what test is that, not even the most prestigious labs here) the image of the results is attached. Help please! Thanks very much!!

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18 Replies
shaws profile image
shawsAdministrator

Welcome to our forum and am sorry you have hypothyroidism and synthroid didn't improve your clinical symptoms.

When you take Synthroid (levothyroxine) it is usual to switch from one dose to another thyroid hormone in an approximate dose. When we self-medicate we can feel nervous about increasing and may be too cautious.

You are taking one quarter of a tablet of Thiroyd which is about 25mcg which is very low.

I am not medically qualified but as you are already on NDT I would increase your dose by half tablet and then increase by another 1/4 every two weeks until you are symptom-free. Take your pulse/temp several times a day and if either goes too fast or high, reduce by 1/4. The following is a list of clinical symptoms.

thyroiduk.org.uk/tuk/about_...

Many of our members have found taking Thiroyd beneficial and I hope you begin to feel better soon. You should also check your B12, Vit D, iron, ferritin and folate. All should be optimum. B12, in particular, the aim should be nearer 1,000. Both B12 and Vit D are prohormones and have essential work in our body. All vitamins/minerals should be optimal. Your FT4 and FT3 are quite good :)

I hope you feel better soon.

Marie0606 profile image
Marie0606 in reply toshaws

Thanks for you advise, you are right, as I have no choice but self medicate I am kind of afraid of an overdose; but I read that, as you said, sometimes the return of symptoms that had been better is the way your body tells you that its need for more hormones, so I will end 1/4 every other week. Do you thin that I might be bloated (or gaining weight) as a result of a too low dose? Thanks again!

shaws profile image
shawsAdministrator in reply toMarie0606

I didn't gain weight or was bloated (thankfully). It has been reported that those on levothyroxine alone can gain weight but I think that's if the doctor didn't raise their dose high enough.

As you are taking NDT and it contains the active hormone T3, I don't think you should have any problems.

shaws profile image
shawsAdministrator in reply toMarie0606

I think the following link may be helpful. It is a chapter from a book one of our Advisers wrote.

web.archive.org/web/2010112...

As Shaws pointed out, your current dose of NDT is very low. Normally, when you start taking 1/4 grain, you add 1/4 grain every other week or so until you reach your optimal maintenance dose (which, for most people on NDT, seems to be between 3-5 grains daily). If your symptoms improved when you switched to NDT, only to get worse after a few weeks, that is a sign you need to increase your NDT dose.

I don't think you should give up on NDT just yet as you got great results at first. Please raise it by another 1/4 grains, stay on that dose for about two weeks, and then add another 1/4 grain.

Marie0606 profile image
Marie0606 in reply to

Thanks Anna! Yes as I wrote to Shaws I remember reading that sometimes the return of symptoms could be a cry of your body for more hormones; I wont quit as I felt hope for the first time in almost 10 years, the only part that concerns me is that I do feel bloated (or fatter); do you think this could be the result of under medication and could be corrected with the gradual increased of the dose?

cwill profile image
cwill

As I am sure you are aware when raising from 1/4 grain you can take the meds at different times in the day and split the dose. So one on waking before food coffeee etc, and another late afternoon 2 hours from food, drink and one hour before. This helped me to get used to the T3 content and to stop the afternoon slump before I was up to the higher doses. After I had been on it a while and settled I then switched to one dose a day. Good luck.

Marie0606 profile image
Marie0606 in reply tocwill

Thanks! I will take 1/4 first thing in the morning as I have beed doing and the other 1/4 in the middle of the afternoon. thanks for the advise!

Lozzer66 profile image
Lozzer66

Hi ,you need to up your dose .Tsh should be 1 or below.levels .T3/T4 look pretty good but ...are those results accurate? They could be looking like that if your bloodtest was taken too soon after your dose of ndt and giving false readings ?...when testing your levels the bloodtest should be done early morning and 12 hr after your last dose of ndt and should be a fasting bloodtest so nothing but water (you can take your usual dose straight after your bloodtest )for the most accurate readings.

Marie0606 profile image
Marie0606 in reply toLozzer66

Hi! these results were after 3 weeks without the levo, but I am confused, I have read that at free t3 must be at least in the upper range to be a good result, but mine is in the lower end but it looks pretty good to you, so I don´t know :( Can you explain me please ? thanks!

Lozzer66 profile image
Lozzer66 in reply toMarie0606

Sorry for any confusion. ..I don't think it's that good , but it looks almost mid range ..I just thought it could be a lot worse to say you are only taking a very small dose of ndt though and some people actually don't feel too bad at mid range ..BUT...in reality it's probably worse than that unless you did the fast and leaving 12 hr from your last dose ...you are definitely undermedicated with that tsh.

TSH110 profile image
TSH110

I used this guide slowly replacing 25mcg levothyroxine (synthetic T4) with 1/4 grain ThyroidS NDT as I was very apprehensive and could pull out if it did not suit me but it went fine. I had to split the dose initially or I felt a bit odd. If I had done a straight swap the T3 would have been too much for me especially as I had heart problems caused by the hypothyroidism being untreated for so long. You are on a very low dose of NDT hence your readings which are not optimal.

tpauk.com/main/article/trea...

Good luck ☘️🍀☘️

Marie0606 profile image
Marie0606 in reply toTSH110

Thanks for the link! Yes I am at a very low dose because of fear of an overdose, but will try to increase it!

TSH110 profile image
TSH110 in reply toMarie0606

@Marie0606

No worries re overdosing on 1/4 grain! If you increase slowly and for the duration TPAU advise you should be fine it sounds like the initial shot was very effective and it ought to work long term when you have the correct dose for you. The article mentions about overdosing and that it is not dangerous if you have gone slowly plus the T3 leaves the body very quickly not like if you takeT4 which is much slower to break down.

I found NDT was my salvation after 2 years of hell on Levo and I felt noticeably better within days of starting it. I hope it is the same for you 😊

ElleBee71 profile image
ElleBee71

Your tsh is way too high! This is normally under 1 for those of us hypothyroid and medicated.

Also, 1/4 grain of NDT is not sufficient if you were on 100mcg Levo. Out of interest - what were your blood results when on Levo? Was your tsh also high then?

I was on 120mcg Levo and switched to NDT, getting to a dose of 2 grains/day (but suspect this needs increasing to 3). 1.5 grain is roughly equiv to the 100mcg t4 you have been taking so you have some room to increase without worry of overdosing.

Monitor temp and pulse and most importantly how you feel, along with your blood work to reach your optimum dose.

Good luck!

Marie0606 profile image
Marie0606 in reply toElleBee71

Hi! this test were done after 3 weeks without the levo, and before starting NDT. My results when taking Synthroid were sometimes TSH above 5, depending the dose I was taking then, but never ever under let´s say 2 let alone under 1. Unfortunately I can´t compare the other results as doctor never ran those test to me before. I used to be on 50mg of synthroid before NDT that is why I decided to start with just a 1/4 of NDT, I will take another quarter today at noon and see how it goes. thanks! :)

Howard39 profile image
Howard39

Hi

Your dose is minimal.

One grain is 38 mg of thyroxine and 9 of t3. So roughly t3 is 4 x stronger so 4x9 plus 38 gives an average of approx 75mg if t4 not 100.

On stopthe thyroid madness web page they suggest it’s even less at 60/65 mg,

It’s a good idea to split your dose as with t3 and your cortisol levels and minerals have to be optimal too.

You need to steadily increase your dosage until your tsh is under 1 / when you feel better.

Slow and steady.

Good luck.

Marie0606 profile image
Marie0606 in reply toHoward39

Thanks! I will increase the dose today, I will take my other dose in the afternoon, Does this help with cortisol levels? I am kind of afraid or reverse t3 due to low or high cortisol. Thanks!

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