Levels of medications and vitamins etc for non thyroid post cancer as opposed to hypothyroidism

Is there any difference for me as I have no thyroid! I keep experiencing from GP's that they havent a clue, are shocked at how suppressed my THS is and high my T4 is and want to cut my levo currently 200/ day! I was very stable for 11 years on this level but for 2 years increasingly unwell, brain fog to not functioning( like early altzheimers) and pains from knee to foot in both legs so cant walk far. I feel chronically hypo! Exhausted and continually ill yet Drs keep talking about being hyper and need to decrease levo.

Having bloods on Mon and will post as soon as I get! Meanwhile will start Dr Wentz diet and supplements protocol.

Just wondering others experiience with no thyroid of switch to NDT and levo/ t3. My instinct tells me I have more needfor this as cant convert T4- T3!

12 Replies

  • Sometimes TSH has to be suppressed after thyroid cancer to prevent a tiny chance of it reoccuring. So, you should try and check with the doctor who managed your thyroid cancer to see if your TSH still needs to be suppressed. As for getting better maybe your latest blood tests will give a clue. I've heard that some people in your situation do better on NDT although nobody knows why it does seem to happen.

  • Lol- it was in Doha Qatar and have been in 4 countries since and scores of different doctors telling me different things!

    Taking back control thanks to info from sites like this- it makes biochem sense that I might do better on NDT thanks gor confirmation 👍

  • The thyroid produces T4 and T3. Levo supplies only T4.

    The body converts T4 into T3, but many people aren't good at converting so they are constantly running too low in T3. This problem is likely to be especially acute in people who don't have the T3 produced directly by the thyroid because they no longer have a thyroid.

    NDT contains T4 and T3, which helps a lot of people. If the levels of T3 are still too low to feel well when on NDT you could try :

    1) NDT + T3 (not many people try this, don't know why)

    2) Levo + T3 with a higher proportion of T3 than you would get in NDT

    3) T3 only

  • I would also suggest you get nutrients tested. The basic ones are ferritin, iron, vitamin B12, folate, vitamin D. They all need to be at optimal levels, not just within range, for you to have a hope of feeling well.

  • Getting tested tomorrow at Gp will check these are included

  • Thank you so much where do I get NDT and T 3 if dtts wont prescribe?

  • You would do some research first into what they are, then decide which one you are going for, then you would have to write a new post asking people where they buy their NDT or T3 from on the internet. Give some details about your thyroid history, and why you want it.

  • I have no thyroid and refuse to be blood tested by my GP as they would not understand the results! The endo argues with me about the suppressed TSH but I am on NDT so I just claim the NDT is doing its job!

  • Hi Glynisrose, I always enjoy your posts. Hadn't realised you were thyroidless like me. I would love to hear your full story, have you written it anywhere?

  • I yad RAI some years ago wich left me without a thyroid it did not grow back. I do not believe that everyones does. Its like the liver it can recover but not in all people. I did not do well on levo. In fact it was less than uselesss but I did find an endo who tried NDT lucky me. After the trial I was doing so well he kept me on it. He did try to stop it because of cost but ended up leaving me and my sister on it. To date you are the only one who noticed and commented.

  • SarahPk, I also have no thyroid due to cancer. It's hard to find out the differences, as nearly all that is written about hypothyroid is primarily about Hashimotos. But I think the basics are true of many illnesses.

    1) Check the vitamins, ferritin, folate, vitamin B12 and vitamin D.

    2) It sounds like your thyroid medication is not right. The most obvious explanation is that you could do with some T3 added in. Your doctor may or may not do this.

    2b) After a good trial of Levo+T3 if you don't get improvement the next step is to try NDT (natural dessicated thyroid), your doctor will definitely not do this.

    Or maybe I've missed out a prior step, which is that you may just be undermedicated on what you've got. Actually almost anyone on Levothyroxine-only treatment needs a suppressed TSH in order to have a high enough dose. The TSH is pretty unreliable and not important once you're on thyroid replacement, it is the amount of hormone in your blood that's more important, and that is measured with freeT3.

    So the best first step is to post your results in a new thread when you get them. If they haven't done the freeT3 test, you can get it done privately with a home testing kit, look on the ThyroidUK website. You also might have trouble getting a doctor to do these vitamin tests, and they can also be done by mail order.

  • Thank you so much, makes more sense than any Dr has since surgery 13 years ago

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