Should I add T3 to my NDT?: I have been diagnosed... - Thyroid UK

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Should I add T3 to my NDT?

HarrietJW profile image
42 Replies

I have been diagnosed with hypothyroidism and was put on Levothyroxine (50) initially my TSH was 16.0 / FT3 4.5 / Antibodies 400. After a few months on T4 my results were TSH 5.3 / FT3 3.3 / Antibodies 300

I believe my issues have come from dieting and over exercise.

I have now found a private doctor who has issued me 1 grain p/day of NDT (Armour) which I have been on for 2 weeks. I have not seen any changes in my symptoms as yet, 35.5 temperature, 51 bpm pulse, weight gain, cold hands and feet.

I am not sure what the T4 is doing for me and if I need it at all?

My question is, should I add some T3? I believe that I might have a) a reverse T3 problem b) Adrenal fatigue (I also had a 9am cortisol text which came back as 301)

I have done reading on this forum and this is my first time posting. Thanks for any feedback!

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HarrietJW
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42 Replies
soupybp profile image
soupybp

I'm definitely not an expert...just have recently been in the position of starting meds.

On the levo, it looks to me like you were due for a dose increase. The starter dose was working on your feedback loop and brought your TSH down some, but it wasn't enough of a dose to push your fT3 to a higher level (in fact lowered it).

As far as the NDT, 1 grain is still a very low dose. I felt absolutely miserable on 0.5 grain (TSH came down to normal range, but fT3 was lower than when I started). I felt almost as bad on 1 grain as I did before I started medication (TSH suppressed, but fT3 only slightly improved). Felt slightly better on 1.5 grain (didn't get tests yet). Feeling like I am gaining ground when increased last week to 1.75 grain (because I had the tablets on hand to do it - not because doc increased).

At 2 weeks on 1 grain, based on your temp, pulse, etc., it is time to increase dose. I have seen suggestions of increasing by 1/4 grain or by 1/2 grain. My (somewhat inept) doctors have been going by 1/4 grain. There really isn't anything there yet to point to a rT3 issue unless you have blood work showing that it is increasing.

HarrietJW profile image
HarrietJW in reply tosoupybp

Thanks that's really helpful! I have ordered an RT3 test so will see what that says too

soupybp profile image
soupybp in reply toHarrietJW

Also, the lovely, really really smart ladies are going to come back and ask if you have gotten your other tests - vitamin D, ferritin, folate, and B12! If you have gotten those, then get them posted with ranges so that they can give you more advice sooner!

HarrietJW profile image
HarrietJW in reply tosoupybp

Oh yes. Thank you. I know that initially my Vit D is ok and ferritin is low. I need these re tested.

soupybp profile image
soupybp in reply toHarrietJW

They would still love to see your actual initial numbers with ranges, what if anything you are doing to supplement. If ferritin low, did you get full iron panel...

HarrietJW profile image
HarrietJW in reply tosoupybp

Hello, I went to the GP and requested those extra tests which have come back as follows:

TSH 0.7 (previously 5.7)

T4 11 pmol/L

Cortisol 279 nmol/L (9am)

Ferritin 124 ug/L / 5-204 range

Vitamin B12 736ng/L / 189-883 range

Serum Folate >20 ug/L / 4.8 - 19 ug/L

I am waiting on T3 and antibody results. I am still on 1 1/4 grain of NDT and also took some on the morning of the above test.

Would love to hear your thoughts?

Many thanks!

Angel_of_the_North profile image
Angel_of_the_North in reply toHarrietJW

rT3 is a bit of a red herring as no test can tell you why you have high (or low) rT3, although excess exercise and low calorie diets are common causes. Therefore, you can't tell how to fix it

HarrietJW profile image
HarrietJW in reply toAngel_of_the_North

Thanks! If it is that the causes it is NDT still the right treatment? My drs have mostly ignored the exercise/diet side of it all. I also have lost my period as a result

Angel_of_the_North profile image
Angel_of_the_North in reply toHarrietJW

I would just ignore rT3, but make sure that you eating enough calories, and look at the thyroid hormone levels, plus ferritin, B12, folate and vitamin D. Can't tell if NDT is right (but it is for many people) until your TSH is below 1. High TPO antibodies suggest that you have autoimmune thyroid disease, which is often improved with gluten free diet.

HarrietJW profile image
HarrietJW in reply toAngel_of_the_North

Thanks! that's great guidance. I am currently 3 month gluten/dairy/soy free and 2 weeks into AIP - no idea how to re-introduce or what I am looking out for? Have you any experience around this?

Angel_of_the_North profile image
Angel_of_the_North in reply toHarrietJW

What do you want to reintroduce and why? Most people with autoimmune thyroid disease are sensitive to gluten and soya is no-no for anyone with thyroid problems. You might be OK with dairy (if you are sensitive to lactose, you can usually eat/drink kefir, real yoghurt, butter and some cheeses - casein is more of a problem). Many people do well on a low carb or keto diet

HarrietJW profile image
HarrietJW in reply toAngel_of_the_North

Hello, so right now I am following auto immune diet which as well as gluten, dairy, soy includes cutting out nuts and seeds, eggs and nightshades, so it’s all very restrictive. I would like to re introduce nuts and seeds, eggs and nightshades but am unsure what to look out for or how to do it. I am following low carb but also worried as I think Keto was a contributing factor to my hypothyroidism. Thanks again!

Angel_of_the_North profile image
Angel_of_the_North in reply toHarrietJW

One thing at a time for a few weeks, then the next one, as far as I know. But I've never reintroduced anything

HarrietJW profile image
HarrietJW in reply toAngel_of_the_North

Hello, I went to the GP and requested those extra tests which have come back as follows:

TSH 0.7 (previously 5.7)

T4 11 pmol/L

Cortisol 279 nmol/L (9am)

Ferritin 124 ug/L / 5-204 range

Vitamin B12 736ng/L / 189-883 range

Serum Folate >20 ug/L / 4.8 - 19 ug/L

I am waiting on T3 and antibody results. I am still on 1 1/4 grain of NDT and also took some on the morning of the above test.

Would love to hear your thoughts?

Many thanks!

Angel_of_the_North profile image
Angel_of_the_North in reply toHarrietJW

If you took NDT on the morning of the test, the results will be inaccurate. Free t4 and free t3 are probably lower than the test shows, but we don't know by how much. If you haven't got a free t3 and antibody results, I suspect the lab didn't do them. How long before test did you take NDT? Did you eat or drink before the test? What time of day was the test? Are the ranges the same?

HarrietJW profile image
HarrietJW in reply toAngel_of_the_North

Hello, the test was at 9am and I took NDT at 6. I also had breakfast and water/tea at 8am. I wasn't expecting the dr to do the test as I was only there for my 9am cortisol, which as expected came back low. Is TSH/Free T4 useless without T3 and antibodies? I am wondering whether to get a private test now or wait untill I have more signs of the NDT working

Angel_of_the_North profile image
Angel_of_the_North in reply toHarrietJW

Well, basically you need to leave 8-12 hour between NDT and blood test, and free T3 is the most important test when on NDT or T3. I would wait another few weeks and then get private tests done

HarrietJW profile image
HarrietJW in reply toAngel_of_the_North

Ok thank you, could I re-message after I have done that?

Angel_of_the_North profile image
Angel_of_the_North in reply toHarrietJW

Just start a new post with your new results (with ranges) and dose

HarrietJW profile image
HarrietJW in reply toAngel_of_the_North

Thank you. Would you recommend a dose increase in the meantime - currently 1.25 grains and no change in temp or pulse or symtoms

Angel_of_the_North profile image
Angel_of_the_North in reply toHarrietJW

I would stay with 1 1/4 for another couple of weeks at least

HarrietJW profile image
HarrietJW

Hello, yes that's what I was prescribed, should I increase?

HarrietJW profile image
HarrietJW

I am worried that the T4 is turning into RT3. Has Dr Google made me paranoid or could this be the case?

Angel_of_the_North profile image
Angel_of_the_North in reply toHarrietJW

Even if it was, it wouldn't stop the T3 in NDT from working as it has its own receptors and is very quickly converted to T2 and recycled. You need TSH, free t4 and free T3 tested at the same time

greygoose profile image
greygoose in reply toHarrietJW

Dr Google doesn't understand rT3. About 20% of T4 is always converted to rT3, but that's not a problem, that is normal. More than 20% will only be converted to rT3 if your FT4 is too high - it's a safety valve preventing your from converting too much T4 to T3. But, as you're only on 1 grain of NDT, it's hardly likely that your FT4 will be too high. But, in any case, it should always be tested, along with the FT3.

You could, of course, still have high rT3 because it can be caused by many, many other things, which have little or nothing to do with thyroid hormones. As I said, it's a safety valve. But, it's not a problem in and of itself. It just indicates that there's a problem somewhere else. And, the problem with an rT3 test is that it will only tell you if the rT3 is high, it won't tell you why.

HarrietJW profile image
HarrietJW in reply togreygoose

Hello, thanks for this. So helpful. My FT4 is 13 after Levo and was initially 11. Is that helpful? I was told it was normal

greygoose profile image
greygoose in reply toHarrietJW

Not in the least helpful. Not without the range. Ranges vary from lab to lab so we need to know which ranges go with your results.

Normal just means in-range. It does actually mean it is normal. 11 looks rather too low for anybody to be called 'normal'.

HarrietJW profile image
HarrietJW in reply togreygoose

Thanks! Here are the most current results:

Free Throxine 15.700 pmol/L (range 12-22)

Free T3 3.67 (range 3.1-6.8)

TSH 5.77 (range 0.27-4.2)

Peroxidase antibodies 334 (range <34)

greygoose profile image
greygoose in reply toHarrietJW

And that's on 1 grain of NDT? You really do need an increase in dose then. Do that before you think about adding anything.

Your TSH is much too high - you're still hypo.

Your FT3 is much too low.

Your FT4 is under mid-range, so definitely too low to cause high rT3.

I think, if I were you, I would increase my NDT by 1/4 grain every two weeks until I got to 2 grains, then hold for six weeks and retest. That will give you a more reliable guide to how you're doing, and if you need to add T3 to your NDT. :)

HarrietJW profile image
HarrietJW in reply togreygoose

Thnanks so much, that's great tips. I will follow! So just 1/4 a grain for now and not 1/2? Do you propose dosing throughout the day or all at once. Sorry for all the Qs.

greygoose profile image
greygoose in reply toHarrietJW

Increases shouldn't be more than 1/4 grain every two weeks. You must not increase too quickly, it can be counter-productive.

Dosing throughout the day, or taking it all at once is a personal choice. You do what suits you best. As long as you always take it on an empty stomach and wait an hour before eating, etc. just like levo, it doesn't matter when you take it, there are no fixed times that are best for everyone. Once again, it comes down to trial and error. :)

HarrietJW profile image
HarrietJW

Hi Paula! Thanks, what should t4 be ideally?

greygoose profile image
greygoose

Not on NDT, it shouldn't be. That's for T4 only. :)

HarrietJW profile image
HarrietJW in reply togreygoose

Ah ok. What about on NDT? So much to digest!

greygoose profile image
greygoose in reply toHarrietJW

FT4 will be much lower on NDT, because taking T3 lowers it. But, in any case, there's no exact place anything should be as far as the range is concerned. No number to aim for. What you're aiming for is feeling well. Optimal is a feeling, not a number.

I just made that comment because it would be silly to expect your FT4 to be close to the top of the range when taking NDT, although that's probably where it should be when taking T4 only. The presence of T3 changes everything. :)

silverfox7 profile image
silverfox7

I started my thyroid journey on NDT prescribed by the NHS in the 1980's. A strike in Canada were it came from forced me onto Levo and to be fair that worked well for me for many years till it started to fail. I'm now back and well established on NDT and to swap over I followed the same plan that Greygoose has suggested. So adding to that in case you have the same problem. I got up to two grains and feeling well and so conutinued by quarters until I reached 3, still feeling good but not any different really from being on two grains.

Sensibly I had decided to make the change knowing that if I was struggling I had my Endo appointment due so I turned up to get my results!

He told me results are read differently when taking any form of T3 but TSH should be suppressed, FT4 can reduce in its range but FT3 should be high in its range but never over! Mine was over!

I wastold to lover the dose to 1.75 which I though a lot but he was spot on!

By going from 1.5 grains to 2 I had already missed my sweet spot! So now if I'm unsure about a dose I always reduce my medication to see how I feel. If I feel better then I needed to decrease. If I feel no different or worse then need to increase. I found the danger is if you assume you need more then take more then don't feel any different then the danger is you will keep taking more and end up over medicated. So I would always advise if unsure about dose to reduce first so you feel whether that is the right way to go then reverse if it's not.

Donna5658 profile image
Donna5658 in reply tosilverfox7

Just wondering what NDT you are using? There have been recent problems with both Naturethroid and NP Thyroid and I am looking for an alternative.

Thanks!

HarrietJW profile image
HarrietJW

This is great advice, thank you. I was inclined to increase by 1/2 as that’s what a lot of the online posts around say but will be starting with +1/4 today. Do you split throughout the day too?

SilverAvocado profile image
SilverAvocado

HarrietJW, my approach, with each format of thyroid replacement is that you should give it a good trial on its own before adding in T3 or anything else complicated. That means staying on the NDT for 3-6 months (6 months is better), retesting and adjusting your dose several times until your blood tests look optimal.

NDT is a very complete form of thyroid replacent, and is one of the maybe two things that patients tend to like the best and feel the best on. There is a very good chance you'll feel well on it, too.

Unfortunately as with all thyroid hormone, patience is required. Looks like you are undermedicated at the moment, but you'll have to slowly increase up to make sure you don't miss your own ideal dose.

HarrietJW profile image
HarrietJW

Thanks very much. I will stick with it and slowly increase and hopefully find my optimum dose. I had an ultrasound today which showed inflammation and small cysts which is apparently normal for hypothyroidism.

You probably need an increase in NDT not to add T3 I grain is very little 38 mcg of T4 and only 9 mcg of T3. You should do well on Armour when taking the correct dose.

HarrietJW profile image
HarrietJW in reply to

Thanks, that's great advice.

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