Hi has anyone seen any of the doctors on the thyroid UK list?

Hi all, I posted this a couple of days ago but I had no response. I've been ill a v long time and would like to try and get my recovery sorted . I have started ndt but am still unclear on several issues and I am too low to be able to understand and figure out the correct treatment. I gave started ndt at a low dose but done want to be months in and find I'm not much further .

Please respond thanks xx

16 Replies

  • I'm sorry you had no response re a doctor on the list. Occasionally a post does get overlooked if it's pushed off the page too quickly or whoever has seen a doctor wasn't online.

    Re NDT. You start on a low dose and increase by about 1/4 or 1/2 grain every two weeks and when you feel better hold that dose to see if you are stabilised. Hopefully it wont be too long. Sometimes we can overdose slightly so just drop back to previous dose. Also take your temp/pulse regularly throughout the day as our temp/pulse can change ie. if pulse too fast you're on too much etc.

  • Thanks Shaws. I wondered if it was worth reposting, thanks for the advice. I felt drowsy on ndt so have taken it at night for ten days of my 2 weeks . I started waking up again through the night so have just increased to half a grain ..

    It's strange but it makes me drowsy and a bit tearful but it was helping the slee. It feels like it has ccalmed my system down so no problem yet with a racing heart. I have taken my temperature on waking and see it is a low basal temperature but I didn't know about doing it during the day. What should it be ? Many thanks sorry to post so much but my brain really hasn't been working. !

  • I feel fine on my dose of thyroid hormones. I feel warm but temp hasn't raised from 36. Usually if we are low we feel cold or very cold. When on a new regime, I think temp/pulse is just to give us a guide if there is a change in either.

    Our body has to get used to thyroid hormones again, so it does take a while to get to an optimum dose in which we feel 'normal' again. I hope you feel better soon.

  • Many thanks, that's interesting about your temperature remains the same but you feel better.

    I am less frozen but still cold but that's an improvement even if it a a little.

    Can I ask the question I know it varies and is different for everyone but how long before you felt a marked improvement.on ndt?

    On a positive note I raised my Ferritin to 91 just in time to start ndt. It was incredible as I had borderline v low and was supplementing for ten years..it then dawned on me it wasn't working.. I was so delighted. I changed the iron

  • It didn't take too long on NDT as I had taken T4/T3 before that and felt an improvement. My GP then prescribed T3 only and I take that at present and feel very well, thankfully, but I had a hiccup with the UK T3 (at first you don't realise it's the hormone replacements - what I mean is that you wouldn't think it was the make) so have taken my own for a while now with no hiccups/symptoms.

    Sometimes you only need a very small tweak to hit the 'spot' as you might say and I hope you find yours quite soon.

  • Shaws,

    sorry to 'chase' you from post to post, but this one also caught my eye.

    Would T3-only be a good place to start before resorting to NDT? In the past I have wondered if I had a problem converting t4 to t3 (twice I had tests where my t4 was relatively high, while TSH not suppressed, and t3 still relatively low -- once while I was under the care of my very good private endo, whom I can't afford to see on an ongoing basis, and once while I was pregnant and managed to get the hospital to test all thyroid parameters, since I can't get it done via GP. The endo thought at the time -- probably May '13 -- that i was just coming off a hyper swing in my Hashimoto's, and the obstetrician not quite a year later just shrugged it off as unimportant). Are there other ways to diagnose a problem converting? What would I expect to see in my test results if that were the case? Thaaaaaanks!

  • I am away from home at present so only have occasional access to internet.

    I was just very unwell on levothyroxine, cannot remember blood test results but they never do T3 anyway (or very rarely). Usually if not converting sufficiently your T3 would be quite low even if taking an adequate amount of T4. I would add T3 to your T4 first (i.e. 20mcg T3 for 50mcg levo) and see how you feel with some direct T3 (it doesn't need to be converted). I did this then gradually reduced T4 and increased T3 and the better I became. Many feel very well with the addition of T3 to T4 and if GP/Endo wont prescribe it might be difficult to source T3.

  • Thanks for your information Shaws. I see someone else has replied into this thread if that's the right word. It's great that your gp has been educated and is prescribe ing t3 only. Can I ask why you went onto t3 only therapy...this is something which I wonder I may need to do ....

    Many thanks, Kafe

  • I just felt so unwell on levothyroxine plus severe palpitations for which I was given betablockers (I know now that bbs can interfere with the uptake) and was told levo was all that was available that I found Thyroiduk.org.uk (before we had this forum) and from then on it was a step by step recovery. My first Endo added some T3 to T4 and it immediately made a big difference.

  • Don't be afraid to experiment with timing and number of doses. Just because a dosing regime feels okay right at the beginning, it doesn't mean it will stay right for ever. So if something isn't working try changing your dosing regime. Divide your dose into less or more doses, or change the timings.

  • Ok thanks yes I will do that, The night time dose did work I will try again tonight with the new upped dose and see how I do. Thanks for your reply as it helps me not to be so worried

  • Hi! I follow the "Stop the Thyroid Madness" web site and have the book. My problem is adrenal fatigue and many people who have had hypothyroidism, untreated, can end up with some degree of adrenal fatigue. So if you notice feeling worse, after starting on NDT, that's a big red flag you have adrenal fatigue. I too had to get my ferritin level up. Mine was in 40s and I got it up to 91, like you did! But still have to fix adrenals before thyroid, and I'm doing that now. The adrenal fatigue messed up my hormones. it steals pregnenolone and progesterone to shunt all the energy into making enough cortisol....I'm estrogen dominant and have zero testosterone....this all just makes me feel worse. See how everything is connected? Thyroid+adrenal+sex hormones....I did do saliva testing and it showed my cortisol to be all low throughout the day. It can be quite a puzzle to get put together.

  • Hi thanks v much for replying and for the links . Apologies for delayed in coming back to you.

    I was actually reading some of your stuff 're angry about adrenals only the other day and was going to message you as I have been ill 16 years and I know my adrenal s have ended up totally messed up!

    i eventually saw an endocrinologist in 2013 when I was crashing in a whole new way .. first time I was listened to and he put me on fludrocortisone. When I was first ill I did do adrenal support but to be honest it didn't rescue me then. This has saved me from completely crawling but stress and a move back to the UK all took its toll. I'm picking up last month but did start ndt 3 weeks ago. I'm sleeping better and my adrenals feel a bit support ed. Massively got my fingers


    Its such a chicken and egg thing and there's so much cconflicting views hence me thinking I will use what money is left to try and see a so called specialist! I know adrenals need to be fixed but until they also get some thyroid hormone as well in the mix I'm not sure if they can be. Like u say its all a loop and from what I gather a poorly understood one as why is it so hard to treat! I've also been put on loestrine and you're right I need some sex hormones....and perhaps some sex! Sadly as I was ill I wasn't using contraception. It may have helped my hormone levels as I feel better on it but again am sure that could be tweaked !

    Hope that u don't mind a long message, you seem to be on similar journey I suppose I feel like why can't I have got this sorted after all these years. I tried but couldn't get anywhere with doctors etc so muddled along and now I'm 41 . There's more information out there now when I got sick there were no mobile s let alone being attached to the internet so there is hope I think . I just can't afford to lose anymore of my life x

  • you're very right about how poorly understood and hard to treat this all is. I try and go to support groups on Facebook, having to do with "Stop the Thyroid Madness". There's one for Thyroid, Adrenals, sex hormones, etc... You just have to learn all you can and it seems like you are.

  • To help with temps....http://www.drrind.com/therapies/metabolic-temperature-graph

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