Thiroyd arrived today-eek

I've been on Levothyroxine since 2012 after RAI treatment for Graves Disease. Currently taking 125/150mcg on alternate days. Having read about NDT I've decided to self medicate without GP input (totally unsupportive). Thiroyd arrived today and feeling scared but hopeful. Trouble is I've read so many posts about dosage I'm confused. I intend to stop the levo today then tomorrow am before any food take half a Thiroyd tablet-do this for two weeks then up the dose to 1 tablet and so on until optimum dose is achieved. Does this sound right? Any advice gratefully received.

23 Replies

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  • I think that can work. Some prefer to go off T4 meds and let them leave them system (which can take 6-7 weeks) before starting NDT, but I did it just the way you describe and it worked fine for me. I was not converting much T4 to T3 anyway, so I had no problems with excess T3 from T4 conversion competing with the T3 in NDT.

    Good luck, and hope you feel better soon!

  • Thanks for the reply-feeling safer reading responses-did you split the dose?

  • I have never split the dose, but I know many do. You'll have to see what works best for you.

    1 grain of NDT is said to be more or less the equivalent of 100 mcg of T4, so I agree with those who recommend you start on 1 grain and add 1/2 grain every fortnight or so.

    Good luck!

  • Some people do leave a gap between stopping one and starting another but I left a break of only 5 days and although I initially felt good I suffered by about day 6.

    Personally I would start at 1 grain given that you were on 125 mcg levo but maybe wait for others to advise.

    You can raise by 1/2 every couple of weeks but it depends how you tolerate it really..I did it in 1/4 grain raises every 7-10 days but experiment and see what feels best. You may also feel better splitting your dose.

  • Many thanks for this-hadn't thought about splitting dose! 👍🏻

  • Agree with Natchap, start with 1 grain as you've been on a decent amount of levo. I've never split my dose though so don't feel that you have to - experimentation is good though. :)

    Give it a fortnight before raising to a grain and a half, and another fortnight before raising to 2 grains (if you feel you need that much). Then stick at 2 grains for a good 6 weeks before raising any more - most find their sweet spot between 2 to 3 grains and if you go too fast you'll miss it. :)

  • This is great-was feeling swamped and unsure how to proceed- coupled with fear of doing it alone without medical surveillance was starting to doubt decision! Now feeling much more confident and not alone-thank you!

  • Hi Handbag99.

    I made the same decision to self medicate. After 13 years on Levo and increasingly unwell. I brought Thyroid Gold over Internet. It was very scary to start, it's been three weeks now. I have started very slowly. Monitoring so far with taking my temperature and checking my symptoms. I am feeling better every day. I am going to see a private Dr to get my bloods monitored. I don't regret my decision to finally take my health back . Good luck

    Jill

  • Thank you for reply-yes it's scary but this forum is great for sharing experiences! Taking back control is empowering especially when such good advice is available here!

  • Hi,

    You may find 1 grain is not enough, but that depends on how much damage the RAI did to your thyroid. Is it destroyed partially or completely?

    1 1/4 grains of NDT is the approximate equivalent of 100mcg of T4, but you may find 1 grain enough, if it works better for you.

    M*

  • Thanq-not sure about level of thyroid cell destruction via RAI was just told that after treatment was hypo therefore Levo introduced gradually but haven't felt well since RAI-regret having accepted that treatment! So seizing the day & giving it a go on NDT & benefitting greatly from advice given kindly here!

  • My friend prefers being hyper, & also regrets taking the cure. :'(

    She's now cold, & suffering from winter ailments for the first time. I've been on NDT for 9 months, & for the first time, I'm warm & not constantly ill.

    Stick with the NDT, & maybe up your dose by a 1/4 grain every week, until you're feeling better. Be prepared for a dip in symptoms, once your body gets used to it, then up the dose a bit more.

    M*

  • Worrying about the switch is almost a clinical sign of hypo! Once you start to feel better all your anxieties will fade away.

    And there is no right way to switch, no-one has researched it, so just do what seems right to you. If you go under you can speed up the switchover a bit, and if you go over and can feel it, then miss a dose and go down a bit.

    Mostly with NDT you are dosing on the T3 content, at least to start with. Once you have stabilised the converted T3 plays more of a part, and you can fine tune your dose. But that is probably 3 months down the line, by which time you will have learned to read your body better.

  • Great thanq-yes it's a case of trial & error-biggest thing is taking first step! Patience & perserverence key!

  • Start on a low dose, get a good pill cutter, its all a matter of easing in to it. Personally I stopped levo for 2 weeks before starting NDT simply because levo is T4 alone and can stay in your system for up to 7 weeks!

  • Hi thanks for this-purchased a pill splitter 2 day-started with 1 tablet today with a view to upping to 1.5 tablets in 2 weeks time unless conditions dictate different! This 'grain' thing needs getting used to!

  • I was on T4 and T3 but was not well, so I bought some NDT and went for it, but I was nervous - looking at the bottle as if it was an unexploded bomb! I misjudged the dose to begin with and was underdosing, but still felt better than before! I went straight from one to the other. Now 9 months later and I have upped the dose three times and now can work all day and sleep all night. Go for it - you will not regret it, and in a few months you will look back and wonder why you had not done it before. Welcome to the world of feeling human!

  • Ha ha so accurate-was staring at tub of tabs as if they cud destroy me if I so much as took the lid off!! After a lengthy period of contemplation this morning I stole myself to take 1 tablet & I'm still alive!! Intend to take one daily & increase gradually if necessary😀

  • Hi, can someone help me with my blood test results received today from Blue Horizon please? I switched from levo to Thiroid 5 months ago following dosing advice given on here. I am currently on 3.5 grains with normal bp and pulse and body temp, feel fine apart from tiredness. No hyper symptoms:

    TSH < 0.005 (0.27-4.2 IU/L)

    T4 Total 93.6 (64.5-142 nmol/L)

    Free T4 13.91 (3.1-6.8 pmol/L)

    Free T3 5.0 (3.1-6.8 pmol/L)

    Antithyroidperoxidase 9.1 (<34)

    Antithyroglobulin Abs 13.2 (<115)

    Vitamin D 39 LOW

    B12 820 HIGH

    Folate 13.95 (10.4-42.4

    CRP 10.4 (<5 mg/L

    Ferritin 253.9 (20-150 ug/L)

    Advised to reduce thiroid dose but I feel fine! What should I do?

    Any help much appreciated X

  • Congratulations on getting your NDT!

    Do not fear taking it it will either make you feel a lot better or it won't.

    The TPAU guidelines below (see link) to are very good indeed and the background info is really helpful.it tells you exactly how to find your ideal dose. I am like you-self medicating with no GP knowledge/support -best thing I ever did 😉 I feel so much better than when I was on levothyroxine. I take the sister NDT to yours: ThyroidS.

    I slowly switched substituting 25mcg Levo with 1/4 grain of ThyroidS and just worked up as advised by the guidelines.i was on 120/125 mcg Levo 3/4 days a week. Initially I only needed 1.25 grains but I feel better in 2.25 grains these days. I just go on how i feel improvements were very rapid noticeable after just 3 days on .25 of a grain. Later I had to split the dose as I felt a bit odd but these days I don't bother (just another thing to forget to do 😂😂😂)

    tpauk.com/main/article/how-...

    I hope you get a similar benefit Good luck ☘️☘️☘️

  • Thanks ever so much will read article now! Onwards & upwards👍🏻

  • Are you in the UK? How did you get NDT as I'm intrested and would also like to know how much it costs? Best of luck and hope it helps you.

  • Hi I got it via a popular online shopping site that sells everything-not allowed to name it-product comes from Thailand & was delivered swiftly & easily! It cost about £35 for 1000 grains so will last a while!

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