freaking out! switching from T3, T4 combo to ND... - Thyroid UK

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freaking out! switching from T3, T4 combo to NDT anyone have experience? advice/thoughts needed..

Hi to all, sorry its a long one.

I am in a bit of a dilemma and interested in experience of others. I've had graves for 30 +years and had RAI around a year ago. became Hypo ,was put onto levo and did not do well at all. I was not converting T4 to T3 and my RT3 was high. After finding no help from my uk endo I put myself onto t3 and lowered my t4 slightly to try and lower the rt3. Fast forward four months and my dosing is 25mcg t3 and 75mg T4 first thing and the 18.75mcg afternoon and evening. I have been feeling soooo much better however last blood results

21 December 2017

FT3 5.29 (3.10 – 6.80)

FT4 12.41 (12 – 22)

TSH 0.02 (0.27 – 4.2)

RT3 14.9 (9.2 – 24.1)

my UAE endo having a total melt down about the TSH and told me she wants me off the t3 or at the very least least down to 10mcg a day which is never going to happen!. I decided to see someone else in an Integrative Medicine centre for a second opinion. He has given me 2 and a half grain NDT and told me to switch and he will take bloods in a month. My dilemma is that i think my RT3 is still too high and if I switch without adding T3 it will get higher as I am increasing my T4 by 20mcg ish and decreasing my T3 by almost a third..... I do not want to go back to the place I was 4 mths ago, feeling dreadful and unable to keep my eyes open. Any thoughts etc most welcome. thank you for reading x

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misfitjones

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greygoose7 years ago

If you were feeling bad with high FT4, it's highly unlikely that it was due to the rT3. RT3 is inert, as far as anyone knows, and only stays in the blood for a very short period before it is converted into T2. Your symptoms were more than likely due to your FT3 being too low.

There is nothing wrong with a suppressed TSH. It is low because you don't need it anymore. It does not cause problems of any kind, and is exactly what you would expect for someone on a reasonable dose of T3. However, I have no idea how you would educate your endo on this matter! They are so very ignorant, and it is a universal problem.

misfitjones• in reply togreygoose7 years ago

There is definitely no educating her on the TSH. although she tests both t3 and t4 she will not listen to anything I try to tell her and boy have I tried. She is convinced my bones are going to crumble if i dont drop dead of AF beforehand. Hence the move to the Integrative Medicine centre. The guy I am seeing seems to get that i need the t3 and understands that I felt so bad on the levo alone, also saw the lack of conversion in old blood works. He said there is no issue with the suppressed TSH but he did say that he thought my dose of t3 was high and suggested giving the NDT a go. Which I am happy to try but do not want to go backwards. Am just worried about the large drop in t3 as It has deffo been the t3 that has made me feel better....

shaws• in reply tomisfitjones7 years ago

If we add T3 or take T3 only, our blood tests cannot correlate to the blood tests which were introduced along with T4 alone so if we add T3 or take NDT or add T3 our results cannot correlate.

Also TSH is from the pituitary gland = thyriod stimulating hormone.

greygoose• in reply tomisfitjones7 years ago

And you are right to worry about it. It is low T3 that causes symptoms. And, there's no point in taking larger doses of T4 if you can't convert it. But, most doctors find it difficult to get their heads round that!

If my maths is correct, you are taking 62.5 mcg of T3 at the moment, is that right? Or, you were when those labs were done? I do not understand your doctor's concern about your dose, because it's not the size of the dose that counts, but the result of the blood test. And, your FT3 was not much over mid-range! Hardly putting you in danger of over-dose. These doctors do have such strange ideas!

So, how much NDT is he proposing to put you on? Given that one grain of T3 only contains 9 mcg T3, you would have to take 7 grains of NDT to get the equivalent. Which would give you 266 mcg T4! Which is rediculous! I don't think he's really thought this through. lol I think you should have a serious talk to him about his intentions and understanding of the situation. Does he think that because it's 'natural' you're going to magically need less T3 or something. After all, when you're hypo, you need the dose you need, not the dose that some ill-informed medic thinks you ought to need!

misfitjones• in reply togreygoose7 years ago

Thank you, so glad you can see what I am trying to tell them! yes I am taking 62.5mcg of t3 along with 75mg of t4 he has put me on 2.5 grains which is why i am thinking I will need extra t3 . not sure if i should do the mth and let him see the blood results as I am not sure how rough I will feel......

greygoose• in reply tomisfitjones7 years ago

I'm pretty certain that a reduction of dose by 40 mcg T3 is going to make you feel very rough! What's more, it just shouldn't be done like that. Not 40 mcg at a time! Reductions in T3 should be done by 6.25 mcg every two weeks! It's the craziest scheme I've ever heard and you should resist it with all your might. The man's a loonie!

Kell-E• in reply tomisfitjones7 years ago

Taking more NDT instead of T3 will increase RT3 for sure. I feel terrible when I take more T4 in the mix.

Kell-E7 years ago

I am in the same situation and I totally agree with you. I take 2 grains of NDT and 37 mcg of T3. My endo does not approve of adding T3 to NDT and wanted me to increase the NDT instead. Every time I tried I would feel worse. So I will continue to self-medicate if it comes to that. I am seeing a functional medicine doc at the end of Jan and I hope he will be on board with NDT plus T3.

misfitjones7 years ago

Think I may just stay where I am for now and see if I can talk about it when I go again in two weeks. it is so frustrating as there is nowhere in this country I can get my own bloods done without going through an endo or the new clinic. Although right now my t4 is still low and I have no idea how to fix that without raising the rt3 . I thought once i got the right dose of t3 the rt3 would go right down and I could add some more t4 back in to get that to the mid range and everything would be sweet. I have read sttm and some of recovering with t3, plus all the fb groups but there is so much conflicting info out there of what to do I feel overwhelmed now.

humanbean• in reply tomisfitjones7 years ago

Which country do you live in? Some countries allow testing by private individuals without the interference of a doctor or insurance being required.

See this link for more details (about half way down the page) :

stopthethyroidmadness.com/r...

I'm in the UK but I don't use the suggestions given for the UK in that link. Don't assume the list is exhaustive for every country mentioned.

misfitjones• in reply tohumanbean7 years ago

I am from uk and that's where my permanent home is and where I started adding the t3 which I ordered from andorra and had shipped over, getting bloods there was no problem and I did it all myself but I am currently living in abu dhabi. I checked the list and there is nothing on there for the UAE I was seeing an endo here but had to bring the t3 with me as they do not prescribe here ether. As I said my endo is not happy about the amount of t3 I am taking and only ordered the rt3 to "prove" everything was in order there! so I travelled to dubai to see another clinic which is more functional medicine and that was where he gave me the NDT he said it was not good to be on such a high dose of t3 too which i was surprised about. He is checking a lot of blood to see if he can find a reason behind everything but obs that will all take time.....

humanbean• in reply tomisfitjones7 years ago

If you make trips back to the UK it might be better to get full testing done privately here. Ask for help on private blood testing without a doctor in the UK at the appropriate time.

The problem with the doctor doing lots of blood tests is that, no matter what they do in relation to the thyroid they misinterpret the results and make life harder for patients. And when it comes to nutrients doctors think anything within range or even under the range is "normal", so again the interpretation is not helpful.

If you are "trapped" in UAE then I'm afraid I don't know what to suggest.

MaraMontvell7 years ago

I am in the same boat (American in UAE). Would you mind sharing who is your doctor that prescribed NDT for you here? tnx

misfitjones• in reply toMaraMontvell7 years ago

not sure if i am allowed to put links on here but have pm you.

misfitjones7 years ago

Hi guys, posting here in the hope that you will still see it after all this time. mths ago when I posted I decided to stay on the t4 t3 combo and see how a reduction in t3 would go after talking to the integrated medicine doctor about my concerns about the switch up on t4 if I changed to ndt at that time. Fast forward 4 mths and I am now on 75mcg T4 and 37.5mcg t3 my current bloods are :

23 April 2018

FT3 5.7 ( 3.10 – 6.80

FT4 12.8 (12 – 22)

TSH 0.022 ( 0.27 – 4.20 )

RT3 13 ( 10 – 24 )

I saw him again yesterday and he said he thinks I am now in a better position to do the switch over to Bio Thyroid now ,although he thinks I could need to add a little t3 to it down the line.

He said he wants me to start on 1 grain and see how I feel then according to how I feel possibly add in another 1/2 grain if i am symptomatic. He said to re take bloods in 4/5 weeks but he is more interested in how I am feeling rather than what the bloods are..

I think maybe I should go straight to the 1 and 1/2 grains to start? Do I split the doses or take all together? I did not ask him! He has given my 1/2 ,1 and 2 grain tablets to take home with me.

Thanks for any advice

sulamaye• in reply tomisfitjones1 year ago

I think ultimately go with how you feel, if you feel good on your concoction stick to it and don't try NDT. When I try adding t4 in or NDT (I am now t3 only) things definitely get worse.

pennyannie• in reply tosulamaye1 year ago

Are you aware you are replying to a 6 years old post ?

sulamaye1 year ago

are you self medicating or is your endo prescribing? If self medicating ignore her. That's what I did with a new GP who took away my t3, I just switched to sourcing my own.