Thinking of giving up on ndt and question re adrenal testing

Hi everyone

Am thinking of giving up on Erfa. Have been increasing dose slowly and am now at just under 2 grains. My symptoms if anything are the worst I have had. I have an awful tremoring through my body. It feels like I have an engine running continually and I cant sleep because of it. I have noticed that as I have increased the meds the tremor has become much worse. Am thinking of going back to levo to see if it stops the tremor.

Am thinking maybe I have adrenal issues. Would it be best to have a saliva test or urine? Which would the GP take more notice of is there was a problem. Which company wuld I go to to get the test.

Am so very low. I get to the point I just want to go to sleep and not wake up. But then I cant sleep due to my body shuddering.

Vit b12, ferritin are all ok as is my Vit d.

Really dont know where to turn next. Sorry I am such a misery.

L x

44 Replies

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  • I have experienced this and it is miserable so don't apologise. I take Armour and don't know how that equates to Erfa but I found sometimes I had to reduce back by 1/4 grain for a week or two but also found this much improved once I reached 2 1/2 grains. I don't know about adrenal testing I am afraid but think the Dr I have been seeing believes problems with slow dose increases. It took me a year to get to 3 grains. I hope somebody else can help more and this resolves for you soon as it is horrible and I spent many days just lying on the bed while experiencing it.

  • Thanks debjs for your reply. Did the doc you were seeing actually think that increasing slowly can cause problems or that you should increase slowly. My private doc likes me to stay on one dose for 4 weeks.

    My body feels wired, really horrid, must be the T3 element my body is not liking.

    Thanks again

    L

  • Dr thought should increase slowly. I found I could increase by 1/4 grain every 2 weeks for a month then had to have about 6 weeks break before next increase. I have had to cut back on several occasions because of fast heart rate & vibrating. I used to feel really wired in the evenings and my legs were really restless so I had to walk around the house until it wore off. I did find splitting my dose helped. Are your calcium levels ok? I have problems with mine and symptoms were worse when my calcium was low.

  • My calcium level is 2.15 which I think is ok. Wonder if a supplement would help. Dont want to cause anymore problems.

    Thanks for the info.

  • I was told after my thyroidectomy that I should not let my calcium drop below 2.2. I was very symptomatic below that and have read that some people can have symptoms at the lower end of the range. Have read that vibrating and internal trembling can be due to low calcium but I know it is due to other things too. When I asked about it was told its very common when hypothyroid.

  • Thank you debjs - very interesting. I have started taking a calcium supplement as of yesterday. I can but try....

    Very useful info.

  • Yes, i have had this on armour.Try cutting back a bit and remember we need more NDT in winter than in the summer.I have had to cut back a quarter grain of armour on hotter days.Perhaps that is just me .Personally I did not get on with Erfa and found it 'stronger' than armour.It sometimes is daunting to make these changes from time to time, but it could help you.

  • Thank you janjan. I have tried cutting back but when i go back up again the vibrating/tremor feelings increase. I have noticed that my heart rate goes up too.

    Appreciate the feedback

    L

  • It is so very disappointing when you switch to NDT and the improvement doesn't happen as you expect. It is a worry for you also when additional symptoms appear.

    There are other NDTs like Nature-throid or Westhroid which are hypoallergenic but if you were doing o.k. on levo before, you can always switch back.

    As the other comments have said, sometimes a small adjustment makes a big difference.

    I don't think doctors or Endos know much about adrenal issues and a doctor I know believes that when on a proper amount of thyroid gland hormone, these should resolve.

    I don't know if you have seen this link before but just in case you haven't here it is:-

    stopthethyroidmadness.com/m...

    Best wishes

  • Thank you shaws. I was pinning all my hopes on Erfa. I feel so let down.

    Sometimes you just feel you have no more fight.

    Thank you for the link, am off to read it now.

    L

  • I do understand just how frustrating this can be as I've watched my daughter go through the

    same anxious process. She couldn't get on with Erfa at all, and had no improvement with Armour or Nature Throid. She was tested several times for adrenal problems and had erratic results each time. She couldn't tolerate hydrocortisone either. Each doctor she saw (all private) tried her on various combinations of the above to no effect - in fact with quite negative effects. The only thyroid hormone that has helped her is T3.

    Having said all that, some of the above do work for some individuals, but it is brought home to me again and again that each individual has to look for the best way forward for herself. There is no certain one-size-fits-all cure. Sadly this sometimes takes some real detective work.

    We have thankfully found the way forward for my daughter but it has taken 20 long years of trying.

    If you are looking for a saliva adrenal test this is a good place to try:

    thyroiduk.org.uk/tuk/testin...

    Do keep us updated about how things move forward for you.

    Jane x x

  • Thank you for your kind words Jane.

    Your daughter sounds like she has had such a long struggle.Makes my 5 years look nothing.

    I just so desperately want to be me again.

    Will look up the details for the saliva test.

    L

  • I truly believe there is a way through all this for everyone. It's just a question of tracking it down, and I wish you all the luck in the world. Sometimes it's hard to keep your spirits up, but try the adrenal test first and if that is not the answer there are other things to try. Jane x

  • How do you cope with the vibration and shuddering it has drove me mad and I've tried every thyroid concoction going x

  • It drives me to distraction. Dont know whether it is the medication or my hypo getting worse.My private doc said it is anxiety - which I dont believe. I can be very relaxed and my body is humming like a tuning fork.While I am typing now both feet are vibrating. I worry it is something like MS or Parkinsons (both parents had it).My balance is still so awful too. Am going to do adrenal test to see what is going on. So sick of being a detective. So far I am failing miserably at being able to get myself well, and I am beating myself up over it.

    x

  • I'm exactly the same,drives me mad,told it was anxiety,ive tried most thyroid meds no change x

  • Hi Jane

    Have just ordered the saliva test. Was just wondering if you need to stop any medications/supplements before doing test. I take 10/20/mgs Amitriptyline for sleep as well as the Erfa.

    Thank you

    L x

  • Sorry you are having these problems Lizzie. Just wonder if it might be worth trying a different ndt, as has previously Ben said, we are all so different and one size most certainly oes not fit all. If this doesn't help, I would look at trying T3 only. Xxxx

  • Hi, I had the same problem with Armour. Was on it for 2/3 weeks only, increasing gradually, but then those symptoms started. It's alarming and pretty horrid but common with people whose iron levels or adrenals are very poor. My iron levels were for sure, and I came off thyroid meds for a few days in order that the symptoms stopped. You say your levels are fine, but are they really? Without even seeing your results, I would question them! If I were you I would insist that your doc gave you a FULL iron panel, not just the Ferritin, and have your B12 done again, then post the results here with the ranges of course. And test your adrenals with a saliva test - around £70 if you are in the UK. SO important to have those working well enough to cope with the T3 and T4 you are putting in your body. I found a practitioner online who is doing saliva test on my behalf - Micki Rose - she is a natural health practitioner and therefore you do not need to be referred by your doctor. .And she offers a diagnosis and treatment service too if you feel that necessary. I am sliding towards T3 only, under the guidance of this book - Paul Robinson Recovering with T3. (it arrives today!) Have a look at his website and some videos of his on Youtube which explain a bit about the fine tuning and precise approach to absorbing T3 (whether NDT or T3 only) into your body. There's so much you can do yourself, and it's a long road for some but hopefully worth it in the end!

  • Hi Daisybean

    Thanks for your reply. Came off the ndt for a day and the vibrating was still happening! Dont know what to think at the moment.

    Am going to do the adrenal test though. There is not point taking meds my body cant cope with.

    L

  • Hi Lizzie yes I agree, but as long as you are sure all the issues are dealt with...my doctor said my B12 was "fine" only because it was JUST within range, and actually that is very far from optimal which we really need to be when suffering with thyroid probs. Same goes with your iron. Sorry to say but the NHS lab tests offered for thyroid patients are woefully inadequate. If your doctor won't re-test with the full iron panel, it would also be a very good idea to get that test done privately too. It would be money well spent. When you stop NDT it will take a few days for the reverse T3 issue (if that is what you have - very likely) to sort itself out. The vibrating heart (sounds romantic!) will stop but it takes a few days, so don't worry and don't give up on NDT just yet. . You can really think where to go from here - could be a T3 only approach (as long as you administer properly and carefully) but in meantime, adrenals and iron are the key! Test them both. If the tests show your adrenals are not operating well, you'll have to address that. But unless you deal with any iron issues too, things will be tricky on NDT.

  • Thanks daisybean, I appreciate your reply.

    My iron is 12.0, my ferritin was in the 30's , I know that is low and have been taking iron since so it will have increased since last year. B12 was in the 500's and have again been taking a good B12 supplement since last year when I had the tests.So I think both will have improved. I take more supplements than I know what to do with!

    The vibrating does not affect my heart - its all the way through my body. Feels like an engine is running. My heart rate does increase by the evening though, presumably its the T3 element stoking things up a bit.My feet are vibrating as we speak.

    I got tested for reverse T3 and it was fine, so the search goes on but will start with adrenals. I anticipated my adrenals not being happy and took nutri adrena,l vit c and a good vit b in order to help them.

    Thanks again

  • Why would the T3 element "stoke things up" in the evening? Are you taking it all in one dose?

    I take my NDT in 3 split doses; as close to 8 hours apart as I can manage - when I was on T3 only, that was even more necessary and 4 or 5 doses were better then (which is why it is a bit of bind!), even though the half life of T3 is not as short as that would imply, it seems to provide much less of a roller coaster ride.

    I have at various times found I was feeling what I thought was hyper with jitters as you mention, when in reality I was well under... (on one occasion I actually reduced the amount and weaned myself off) presumably as the exogenous thyroid hormones suppressed what remains of your natural production, and isn't quite enough to provide what you actually need.

    Have to say that it is vital to have Adrenals sorted first though, especially so when taking anything with a T3 component.

  • Hi Picton

    I take my NDT in 2 doses. Two half grain tablets in the morning and one in the afternoon about 2. Was told to do this by my private doc. I find my heart rate is ok until I take the afternoon dose. I dont know whether its an accumalative T3 thing but my heart rate does increase from about teatime onwards.

    My latest blood tests showed my T4 being bottom of the range so it could be that i am undermedicated.

    Will order the arenal test and go from there.

    Thanks again

  • Adrenals are a big issue, no doubt, but that aside, you are having half of the total at say 7 or 8am and the rest just 6 or 7 hours later, means that you are going 17 or 18 hours before one dose and 6 or 7 for the other, that difference is self evidently pretty big.

    I know my body *really* doesn't like that, (the T3 component not the T4) it doesn't even like 2 doses a full 12 hours apart, so it's no surprise to me that yours doesn't either.

  • Hi again

    How do you split the doses up during the day?

    Thanks

  • I have been up to 2.5gr before, but currently on 1.75 after a viral(?) thyroiditis some time ago had me suddenly very hyper, my thyroid seems to be producing more on its own than it was before, so never needed to go back up to those levels again although I am considering fine-tuning it by going back up to 2 again... (or even just add in the extra 0.25gr every other day) until then, currently 8am - 0.75gr; 3.30 to 4pm - 0.5gr and same again Midnight (more often about 11.15/11.30 though!). I used to take the larger dose at midnight, but trialled it this way round and found little difference, so it stuck.

    On other websites and forums, I had thought it was pretty much universal to dose NDT 3x daily, until I came on this site, where plenty seem to do once or twice only.

    Remember there are other thyroid hormones in NDT in addition to T3 and T4 (T1: mono- and T2: - di-iodothryonine ), and I am not actually sure or not whether they might be also short acting too.

    If I go back up to 2gr, I will probably bring back the extra 0.25gr at the late night dose. I seem to get faster heart rate if I take more during the afternoon, this way, it varies far less, although either way my heart rate is still lowest in the morning.

    When I took t3 only some time back, (in an attempt to lower RT3, it worked, but it came back!) I did 4 times dosing, as 5 times (which was better) was such a bind during the night.

  • Thanks for this. I think I am going to be a bit more inventive re dosing.

  • Great your working on the iron and B12. The ranges are all important though. Your region in the UK will be different from mine for instance so it's quite meaningless unless I know the ranges. I think the vibrating you have and fluttery heart thing I have are probably one and the same....and it'll ease off after a few days. My Recovering with T3 book has just arrived in the post! I'm going to devour it and work out a system whereby I can get T3 into my body without the heart side effects. I suspect for me that will be slowly and methodically to begin with - I've bought a good thermometer and have been plotting my temps every 3/4 hrs so that I can get some idea of what my adrenals are up to (until test results come) Hopefully if I decided to follow P. Robinsons CT3M I'll be ready! Also I've splashed out on a blood pressure monitor too.

    Just a word on Nutri Adrenal. It may, or perhaps definately does, contain a small amount of adrenalin. I took it for a few weeks happily, but when the heart/tingling issue started I switched to Adrenal Cortex instead which contains no adrenalin. I've been on it for a week, off NDT for about 2 and the 'weird' symptoms have gone. Good luck xx

  • You sound very organised. Hope the book is a help.

    Hope it works well for you. XX

  • I've come to believe that internal tremor is due to your adrenals. Some think it may be adrenaline spikes. If you can possibly get a saliva test, it would help. Then you can address that and figure out the cortisol problem. I've also read that T3 can help heal the adrenal issues.

  • Hi Heloise

    Do you have to be on straight T3 to help the adrenals or would NDT (containing T3) help.

    Thanks

  • Straight T3. I thought it was in one of these articles but they are interesting to read about the essential need for your adrenals to be functioning well:

    drlam.com/articles/adrenalf...

    thyroid-rt3.com/adrenals.htm

  • Thanks for this.

  • Hey there!

    I would get some DHEA if I were you... you stop the NDT for two days and take NOTHING (prepare to stay in bed). then you take DHEA first thing in the morning for 2 days then you add in your NDT slowly, whilst keep taking the DHEA for 6-8 weeks...

    I started this around 6 weeks ago, and feel really quite good... I got it out or Dr Peatfield's book

  • Thanks Redditch, its given me food for thought.

  • ooh,, should add.. I once took the DHEA at three in the afternoon and it kept me up all night!

  • But it was rather pleasant... I was a little energizer bunny!

  • I am in the same place too Lizzie I feel for you, I have a inner tremor and my hands and head too have a noticeable tremor. My legs don't feel like they belong to me. I started Nature Throid nearly 6 weeks ago and its not getting any better I built up to 2 grains, and I still feel so under medicated but have a whole host of other symptoms now, skin has what only can describe as brown age spots and a spider web pattern on it, especially my arms and legs, feel very weak all over, I have a continue buzzing in my ears and my hair has gone so thin and falling out like crazy! My iron, ferritin, B12 and vitamin D are all in the good range. I too am thinking of returning back to Levothyroxine and I do hate taking chemicals, one of the reasons why I went on to NDT.

  • Hi Katherine, its been a while since i posted and have now gone onto T3 only. Am taking a while to build up the dose. My legs used to feel so very heavy but they are feeling a lot better. Still have the buzz in my ears but the tremor has calmed down, not gone but quieter.

  • Oh Lizzie I do know about the heavy legs and having to push them a long to walk a little way. Going to my local shops 10 minutes walk away felt like someone had asked me to walk to Australia. I knew something was wrong because on the very odd occasion when I would take some nurofen my legs would feel light and normal and I could walk far. So I knew there was inflammation or some sorts causing this heavy walking in mud feeling.

    I would sit in an armchair and think why can I not just get up and do like everyone else. I am not good at all at the moment.

    xX

  • Lizzie, Katherine and others dealing with the inner trembling/shaking--have you learned anything that has helped your situations? I'm going thru this for 3 months now. It's so miserable.

  • Hi Amy. I am on t3 only now. Still have lots of symptoms but can say that the trembling has improved. I sometimes get it across my head and face and have it all the time down my left leg. However the ghastly vibrations through my tummy have improved.

  • I was on levothyroxine for 15 years. Although I had weight gain and occasional anxiety, I was otherwise ok. S New Doctor Switched ME To Ndt IN October 2015. Since December 2015, my body has been completely out of whack. The worst is the constant trembling and shaking throughout my entire body. Also, I have frequent heart fluttering/palpitations. Blood test show ferritin/iron panels are fine. In dact, ferritin serum is high. But is also in range, but gave started a supplement to improve it. Vitamin d was low, but I've also started supplement. No one seems to have an answer. Even switching back to levo only has not helped. Adrenals did not show any problems on saliva text ing. So very confused about this vibration/shakung. They said my levels for reactivated epstein barr virus were very high. Any thoughts/suggestions appreciated.

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