Levothyroxine + NDT: Hello folks, hope everyone... - Thyroid UK

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Levothyroxine + NDT

DoeStewart profile image
8 Replies

Hello folks, hope everyone doing OK. Forgive me if this question has been asked before or of it's a really stupid question 😁. I take 100mcg Levo every morning, GP only tests TSH unless it is below range and then tests T4 as well. I am thinking of adding small amount NDT to my Levo to bring my T3 up, I would lower Levo to maybe 75mcg and add 1/4 grain NDT to start with and see how it goes. My big problem is the GP's in my practice are TSH obsessed. I take it that my TSH would go even lower if I added NDT to Levo and they would freak out even more? I am doing this under the cover of darkness as fed up with the lectures and arguments after every annual surgery blood test. I had my bloods taken with medichecks recently ( on my profile), I have restarted all my vitamins but as I have a stock of Thyroid S I wondered if it was worth a go or to just stay as I am. Any advice gratefully received. Thank you.

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SeasideSusie profile image
SeasideSusieRemembering

DoeStewart

My big problem is the GP's in my practice are TSH obsessed. I take it that my TSH would go even lower if I added NDT to Levo and they would freak out even more? I am doing this under the cover of darkness as fed up with the lectures and arguments after every annual surgery blood test.

I have this same problem, TSH obsessed GP and refuses to discuss the fact that FT4 and FT3 are within range. My TSH is always suppressed, has been for over 20 years, but it doesn't matter to the GP even when my FT4/FT3 are very low in range, she's still obsessed about the TSH. So when she says "Your TSH is suppressed, you are overmedicated", I just reply "But my FT4 and FT3 are well within range and they are the thyroid hormones". She just keeps repeating, so do I. It gets neither of us anywhere but I refuse to reduce my dose. Whether at some point she would turn round and say she would refuse to prescribe if I didn't reduce I don't know, but I would just tell her that if she did that then I would self source Levo.

Oh, and yes, adding some NDT is likely to lower your TSH.

DoeStewart profile image
DoeStewart in reply toSeasideSusie

Thanks for your reply SeasideSusie - yep, snap. Thar sounds pretty familiar to me, same old every time. When I try to have a discussion about my results I am ignored and just told I am over medicated. I have refused to drop to 75mcg and they have left me alone for the time being ( too busy keeping people out of the surgery). I just dread the annual test coming around, its like flippin groundhog day.

If you want to add NDT to levo, and it ends up lowering your TSH too much for your doctor´s taste, you have decide if it´s worth staying on it. If you feel much better, I´d say it is. But then you have to be prepared to fight your doctor all the time. I´m not saying it´s not worth it, only that your doctor is unlikely to change his or hers opinion on the importance of the TSH. If you start NDT, you may have to increase it after a while (after all, 1/4 mg of NDT is a tiny dose, about 2.25 mcg of t3 which may not be enough for your needs in the long run), and this is likely to suppress your TSH further. You can of course switch to NDT entirely and self-medicate, but I doubt your current doctor will ever listen to you.

Do you feel bad? Or what is the reason you want to add NDT? Not everyone needs T3. 100 mcg of levo is not that much either. If you still feel symptomatic on it it, might be worth adding 25 mcg daily and see how you feel.

DoeStewart profile image
DoeStewart in reply to

Hello PurpleCat71, thanks for your reply. I took small amount NDT (1/4 grain) about 2 years ago, added it to my 100mcg Levo. I felt really well, hair felt better, I was very energetic and even on that small amount I felt different. I did try to increase to 1/2 grain which was ok but couldn't go any higher as I got palpitations. When I knew my annual bloods were coming round I stopped the NDT and just took Levo for a few weeks so it didn't show in the blood test - what a faff it all is. I didn't re-start the NDT as other people's health problems over took me. There is no chance of me getting an extra 25mcg Levo from the GP, they want me to drop to 75mcg because of under range TSH. I just know there is a tweak to be made which would make me feel optimal instead of not quite there. I suppose I could always purchase extra Levo but I suspect this too would lower my TSH even further.

in reply toDoeStewart

Yes, but whatever you need to feel well - extra levo or NDT - is likely to lower your TSH further, so you will either have to switch doctors or self-medicate. Not an uncommon problem for thyroid patients, unfortunately:-(

DoeStewart profile image
DoeStewart in reply to

No your right, most of us on this site have the same problems with the GP's. Trouble is, you change Doctors and there is no guarantee that they will think outside the box either, catch 22. I have been having the same "discussion" for nearly 35 years, gosh it gets very disheartening doesn't it. I Al always aware I am a step away from being refused my Levo script for not conforming to the Drs advice.

in reply toDoeStewart

Is there any way you could self-medicate if needed? You should never accept a decrease just because your doctor is TSH-obsessed.

DoeStewart profile image
DoeStewart in reply to

Yes I could self medicate, I would just need to request from the forum a site to buy some Levo from. No idea of cost of it on line as never had to purchase my own.

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