Giving up NDT

I've posted before about my switch from 175 levo to 2.5 grains NDT. It is 6 weeks in and I am going to revert to levo. I am becoming so I'll and my symptoms much worse. I am sick of either not sleeping or fitful sleep waking soaked with tinnitus and shakey which now persists all day. It is making normal life impossible along with the lethargy, weakness etc. I intend to try levo plus t3. I wonder if it is the Thyroid S that doesn't suit me. I would try an alternative NDT but have not been able to source any. I would be grateful if anyone has similar issues or advice on how to switch back safely. I wanted to give this a good trial but life is grinding to a halt and I am worried about continuing the way I feel. Thank you

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  • I am sorry NDT isn't working as you expect.

    You switched from 175mcg of levo to 2.5 grains of NDT- equal to around 250mcg levo so it is probably too high a dose (I am not medically qualified).

    So starting off at 1.5 NDT then increasing gradually, (i.e. 1/4 tablet) every week or two until you are symptom-free. If either pulse/temp goes too high drop to previous dose..

    Maybe if you don't take any for a couple of days and try at a lower dose before you switch.

  • Ok, I started on 1 grain, but was so under I increased. I will give it one more week, reduce to 2 and get bloods done. I don't think I have felt this awful since diagnosis 5 years ago and pre-ndt I was bad! Thanks for the advice, sometimes I just need to be heard by someone who' gets it. I had such hope on NDT.

  • Don't be too disappointed - I tried several myself. We are desperate to feel well again so are disappointed.

    Due to T3 being in NDT, its effect is stronger than levo alone.

    Take your pulse and temp several times a day. Sometimes we feel quite hot but temp might be normal for us. If we didn't take temp we'd just 'assume' it was too high. If pulse is too fast, reduce dose slightly.

    I assume you are taking one daily dose?

  • I was taking 1 grain before bed and 1.5 in the morning. This morning I have left it out. Pulse is 68, temp 98.8.

  • Seems every one is suddenly suffering from thyroid meds i havnt felt this bad either ever #!!. Im going into my pharmacy today to try and get some information out of them.if i can manage it. Im also not taking my eltroxin today. As its making me feel worse. I have tinnitus all day long plus so depressed its off the charts. I tried a higher dose and was worse then this also. All my hair fell out. I have lost half my hair at least. I started mollases and black seed oil im on al the vitamins. Selenium zinc. Vit b digest enzymes paleo diet.im taking adaptogens.my heart feels affected my hearing my eye s feel affected im stiff and feel 200 years old. My eyes are just feeling dull and heavy. Ive also started taking cannbis oil as im anxious. I hope there wil be light soon

  • Get b12, folate and ferritin checked too.

    Www.b12deficiency.info

  • Yes, only after finding this site and all about supplements did I start my vitamin regime so hope all of these will be rising steadily now. I'm throwing everything I can at this blasted disease!

  • Ive been so il last 3 weeks. And for the headaches my doc suggested magnesium and it had helped quite a bit for me anyway.

    Im also trying everything but yes its aweful disease and nurses and docs have no idea how aweful we really feel. No words to describe this hell.

    God help us all

  • This might be helpful:

    web.archive.org/web/2010103...

  • Hi shaws . What should our pulse and temerature look like ?

  • Usually, if hypo our temp and pulse are low that's why many complain of feeling cold. When we are on an optimum dose our temp should be towards normal range and pulse around 65. If we took too much our pulse would be racing and temp higher than normal and we'd feel uncomfortable.

  • HVE JUST DONE PULSE IT IS 88BPM

  • Hi. You need blood tests to be sure. They will tell you if you overmedicating. Okay, temp. and pulse are important, but it's a good idea to know your levels. It's like hitting the problem from two directions.

  • Skye maybe this would help. Agree with shaws that you've probably increased too quickly / too much

    thyrophoenix.com/adjusting_...

    All trial and error. Has to be done s-l-o-w xx

  • Yes, I realise now, I read so much and took advice that suited me (increase too fast in the hope of improvement). Lesson learnt .... No NDT today, will start again tomorrow night 1.5 grains and go slow. I have ordered bloods to see where I am and will do them tomorrow morning. Frustrating being so crap when I want to be living a normal life!

  • I do not believe that 2.5 grains NDT is equivalent to 250mcg levo.

    I would suggest that one grain of NDT is roughly equivalent to 65mcg Levo. So 2.5 grains is roughly equivalent to about 160mcg Levo.

    1 grain Thyroid-S contains 38mcg T4 and 9mcg T3.

    There are differences of opinion about how much T3 is "worth" in relation to T4.

    I think T3 is 3 times as potent as T4. So 1 grain Thyroid-S is equivalent to 38 + 27 = 65mcg T4.

    If T3 is 4 times as potent as T4 then 1 grain Thyroid-S is equivalent to 38 + 36 = 74mcg T4.

    If T3 is 5 times as potent as T4 then 1 grain Thyroid-S is equivalent to 38 + 45 = 83mcg T4.

  • Yes, I thought I was roughly near my levothyroxine level. I may have moved too fast though but on a lower dose I felt under dosed. It's tricky, I felt a bit better today having taken nothing but supplements. I guess I need to drop back and go slowly​ but I frankly can't take another month of being worse than levo which was bad enough.

  • Oh god im feeling like u too. Im worried im dying its so bad. Im on a low dose eltroxin but feel worse on a higher dose.

    Im waiting to be tested.i may have adrenal fatigue.have u had a adrenal test done?

  • You will have felt under doses when you first started as it's recommended you start low to get your body used to the T3 and remember you would have had a store of your previous T4 to help you bridge the gap. I think you may be started on too high a dose and your body didn't like so much so soon.

    I was pretty good on Levo, I had addressed my conversion problem to almost spot on but I wanted to go back to NDT where I started my thyroid journey as I found it easier to adjust my dose if necessary. I got up to 3 grains having been on 100/125 Levo and then realised I was on two much and cut back to 2 grains and now alternate 1.75/2 and feel really good but it took me a long time to get there, about a year. My waking temp is 36.9 and when I remember my 3 pm dose is 37.0. I take my meds once a day in the morning. I did try taking it before bed and did feel a slight improvement but it was difficult not to nibble on something if I had been out for the evening!

  • Am wondering what kind of thyroid issue you have been diagnosed as having? The reason I ask is that, I had my thyroid tested and was given the standard response that my 'thyroid is fine' when I knew it was far from being so. I suspected undiagnosed Hashimoto’s so I got it tested privately - thinking that, if I got a diagnosis of Hashimoto's, that could be addressed by supplementing with some form of T3. When the results came back, they showed that not only do I have Hashimoto's but I also have Graves so I swing between hypo- and hyper- thyroids many times in the course of a day. That being the case, I would imagine that it would be extremely difficult to get the balance of treatment right since, if treating the hypo element, that would result in my thyroid function speeding up and, if the hyper element were treated, would it not result in it slowing down? The question I am left asking myself is how can symptoms that fluctuate between the two extremes of hypo and hyper- thyroidism be treated together? Am wondering if this is similar to your situation and if anyone else has encountered this issue and been treated successfully for it and could share how these issues were addressed?

  • Gazebo I don't have graves according to my private bloods. I also got my sister to check them for me as she is a senior consultant (sadly not endo). But I am pretty scared at the moment, very ill this morning, I took solpadeine to take care of the headache and limb pains! It's made my tinnitus worse! I was diagnosed hypo by the GP 5 years ago, diagnosed hashimoto's on private bloods 6 weeks ago.

  • Hope things balance out soon for you.

  • Gazebo, your situation is quite unusual, but not unheard of and occasionally talked about in the forum. I suggest you make your own new post to ask for advice, as not many people will see it here. You could also try using the search to find older posts where this has been talked about.

  • Not sure what you mean by my situation. Can you clarify, I thought I pretty much feel like most people who failed to improve on levothyroxine. I am having issues switching to NDT and either I have gone too high too fast or Thyroid S doesn't suit me.

  • Sorry Skybeardie, I was trying to reply to Gazebo. I should have been more clear about the situation, as I meant having both Hashimotos and Graves antibodies.

  • Phew, as if I wasn't feeling weird enough, thank you for replying 😀

  • Hehe, sorry to give you a shock!

  • I had been going to say to you that if I was in your position I would get a blood test to see if you are on a dose that's far too low or high. But it sounds like that's what you're planning to do, so I didn't write it that the time. I wish you good luck, it's a tricky thing to get right.

  • Thanks for the suggestion. Trust me. I never seem to do things simply. I have a supposedly one - in - a - million neurological / auto-immune syndrome and now I have unusual thyroid issues - again relating to auto immune issues.

    Am still fairly new to this site and am a bit of a techno-dinosaur. Still finding my way around and haven't worked out how to access previous entries.

  • I bet the doctor told you to do a direct swap! I'm sure they do that so they can say they ruled it out! Try other forms of NDT before reverting to levothyroxine.

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