Where can I get NDT in the UK ?

I am at my wits end :( I have been on Levo for 12 years . I started at 50 and I'm now on 125 , I have also been in b12 injections for about the last 3 years . I have never felt well since becoming hypo after giving birth to my 2 nd daughter but was borderline for years before .About 6 mths ago my hair started falling out , this was the last straw , cold constantly , fatigue , joint pain , teeth grinding to just scrape the surface. I was referred to an Endo who interrupted me before I'd finished my first sentence, sent me for adrenal tests (all ok) and discharged me . When I had no improvement in my hair I returned to GP only to be told , tough there's nothing we can do , your depressed and left me sitting there trying to stop myself from crying so that I could face my daughter , who was outside waiting. My GP has grudgingly referred me to a second Endo but I am under no illusions . I need to take charge and help myself. I am grateful everyday that this hasn't beat me ! I sound like such a whiner lol and I'm well aware that there are people a LOT worse off than me but I feel I shouldn't not just keep suffering when there could be help out there .

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10 Replies

  • Sorry to hear you've been so ill. Have you tried t3? It is usually plan b and ndt is usually plan c. :-)

    You don't sound like a whiner and you will never do anything about there being people worse off than you - they will always be there. Your job is to feel as well as you can for yourself and the people who love you. :-)

    If you have some blood test results (tft and the usual others - b12, d, iron, ferritin, folate), post them here and maybe someone can figure out what is going wrong for you.

  • Can't help you with the NDT but you are certainly not a whiner so don't even think that. You are obviously not well, when I became hypo during my Graves treatment I had so many of your symptoms - my hair coming out in handfuls was like the last straw for me, fortunately when I got to the correct amount if levo the aches and pains and hair loss etc all disappeared but it was not a fun time and I'm not surprised you feel as you do. You must have felt dreadful when your endo interrupted you mid sentence. So humiliating for you and just incredibly rude of him.

    Do you know your blood test results with the lab ranges. I know at times I was 'within the range" but I wasn't at a point in the range where I felt good. It is such a wide range unless you are practically dying on your feet everyone seems to fit in there somewhere. Hearing people say they have been told they are within the range while they still feel dreadful just drives me round the bend.

    Hopefully someone who knows about NDT will come along and help you , but whiner? Never!

  • Thank you both . My GP is always very reluctant to give details of my blood results but I do know that my last lot my levels were all ok except the iron was high which indicated a slight marker for joint pain ?? But no action was needed . I can understand without the blood results it's difficult to see the whole picture . I just want to feel well , as do we all . I do love hearing that people have found the correct meds and feel great , it gives us all hope .

  • You are entitled to physical copies of your lab reports. Your GP or surgery receptionist can simply print these off for you.

    Without your numbers, and the ranges the lab uses to define "normal", you cannot get a good picture of what's really going on for you. My TSH was "normal" for decades; only when I saw my numbers did I realise they were like .001 into the "normal" range!

    I, too, have been looking for a means to obtain NDT in the UK; as long as the NHS *only* supports levothyroxine, it will be difficult to get NDT through the NHS. That said, I have learned one can import small amounts of NDT from overseas for personal use. However, if the value of the medication is above £15, the shipment will be held at Customs pending payment of VAT.

  • Like HashiGirl says, you need to get your printouts so at least you know if/how they've been neglecting to treat you correctly, and then you can base your next steps on that. Even if you get your ndt and self-treat, you'll have to know the appropriate dose and if they've been undertreating you, using the same amount may just result in more undertreatment.

    Can you ring the surgery and ask the receptionist for printouts? Mine requires the gp to give approval first (I assume so they make sure they've interpreted it before they give it to you) but I don't mind as long as I get it.

    Even if gp disapproves, there isn't anything they can do to stop you. If they try to charge you stupid money for printouts, you can make an appointment to see your records so you can write them down yourself.

    The alternative is private tests.

    Good luck.

  • Buy online like many others have been forced to do

  • Sorry to hear all this. Really can't understand GPs. I can't say much reading and learning myself. But can share my experience of almost having a hysterectomy, being sent to a mental health clinic and after being discharged by the psychiatrist - who said all my symptoms are physical, I've been referred to an endo. Still waiting for the results though. The only thing I can say is you are right they are wrong and keep searching for the answer/right treatment. One day we will get it!

  • Thank you all so much , I will ask for printouts and also at my next appointment I'll ask about t3 . If all else fails there's ordering from overseas . I just hate that we have to be made to feel rubbish about ourselves and the Gps just wash their hands and walk away . Thanks again

  • Not an authority on this but while I was googling stuff came across nutri- med, sold as a supplement in states. It apparently contains all thyroid hormones with nothing removed during processing.There is now a UK dispenser, there is a link on the site. There are also chemists supplying NDT but you need a private script.

    I just can't understand how so many people get bad/no treatment and unhappy with GP/Endos, yet nothing is done about it. It beggars belief !!

  • Oh lots of options :) I've tried the private script route , my GP told me that the local endo had called them to a meeting to say that he is sick of people asking for NDT and that no GP is to support it as he says there is no proof . They are so closed on the whole issue . Thanks to you lovely people though I have hope . My app with the second endo is the beginning of May , and if it goes as I suspect it will there is still hope :) thanks all

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