What is the procedure for thyroid patients in UK?

I just moved to UK last Spetember, I´ve been on thyroid medications since 2011, first on Levothyroxin wich was fine, even tough I was only on 75mg, I got my life back. But in 2014 I totally crashed and was on bedrest for about 6 months with doses up to 300mg of Levothyroxin. They finally found out that a hip implant I got in 2010 was leaking Chromium and Cobalt into my body destroying my thyroid. The implant was removed and I was put on Thyroid IBSA which is supposed to work like Armour but is made in the lab. I felt horrible on this medication and lasted only 3 months, then I just went back on Levothyroxin. Finally in july 2015 I was put on Armour. I am still not sure if it made a huge difference...there were so many difficault things going on in my life...but when thinking back I went through them easilly so I guess the Armour helped.

Anyway... I saw a GP here in UK last week since I´m out of Armour and he said it´s not prescribed in UK, he had never heard of it!! Well...I guess he is one of those GP´s who just havn´t put much thought into thyroid function and just goes by the "old" way of doing things. I got the feeling I knew more than he did!! Only blood test he did was TSH and T4.... So I´m back on Levothyroxin. Only been few days but I already feel like I can sleep through the day, normally I get up around 7am and just go about my day after the kids are off to school, but now I go back to bed and have a really hard time getting up again...

So my question to you guys... Would you recommend I see a endocrinologist ? And if so can I make an appointment myself or do I need to go through my GP? I live in Leeds so if any of you know any good doctors in the area I would appreciate all tips and tricks :-)

8 Replies

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  • Bless you and welcome to the UK and the crappy NHS thyroid control.

    I'm not overly experienced so I'm sure someone else will help.

    What I do know is that a lot of people self medicate here. The reason being is that our doctors do not prescribe NDT. Some endo''s will prescribe T3.

    As for the Endo''s a lot of people aren't happy with them either. I know thyroid UK have a few endos who you can't get in touch with on a private basis.

    You would have to ask for a referal to an Endo for nhs but if your doctor doesn't think you need it you will struggle.

  • Thank you :-) 

  • I guess he is one of those GP´s who just havn´t put much thought into thyroid function

    That describes 99.5% of doctors in the UK. Thyroid diagnosis and treatment in the UK is inadequate and sadistic. The only thing that matters is TSH being in range. Free T4 might be tested if you are lucky.

    Would you recommend I see a endocrinologist ? And if so can I make an appointment myself or do I need to go through my GP?

    Endocrinologists in the UK are mostly diabetes specialists. Thyroid treatment is rarely good even with hospital endocrinologists, but there are some exceptions.

    To see an endocrinologist in the NHS

    Your GP has to refer you. The referral will only be done if the GP thinks it is necessary. Referrals can be difficult to get. If the referral is allowed, you can say who you want to be referred to, otherwise the GP will decide for you.

    To see an endocrinologist in the private sector

    Your GP usually has to refer you. If you are paying out of your own pocket (rather than through an insurance company) then some doctors in the private sector will see you without a referral, although this isn't common. The GP will be more likely to refer if they are not paying for it out of their budget, so referral shouldn't be a problem. You specify who you want to see, otherwise you will see someone of your GP's choosing - not a good idea!

    Warning : Doctors in the UK usually work in the NHS and the private sector - e.g. they may work privately one day a week, and for the NHS four days a week. So the doctors you see privately are not necessarily any better than the NHS ones.

    To get a list of the endocrinologists and doctors who have treated thyroid patients well, send an email to Louise Warvill (she works for Thyroid UK, the charity which runs this forum). Her email address is :

    louise.warvill@thyroiduk.org

    It must be email because attachments can't be sent via the forum private messaging system.

    Other alternatives

    Private testing can be done without a doctor's permission being necessary. You deal directly with the lab yourself, you order tests online and the whole thing is done by post and/or email. Blood testing can be done in some cases with finger prick testing. In other cases phlebotomy is needed. Depending on what you order you may have to arrange phlebotomy yourself which can be a sticking point for some of us. Or phlebotomy may be included in the cost of the test.

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

    If you decide to self-medicate this is legal under certain circumstances. It is illegal to buy prescription only drugs from the UK without a prescription. It is legal if you buy from a website based outside the UK. You are allowed to buy enough meds for yourself or your household for 3 months. But customs don't know how much you usually take, so that isn't usually a problem. If customs miss your parcel then it will just get delivered as usual. But if they intercept your parcel there may be VAT to pay if the package and its contents cost more than £15. If the company delivering your parcel has to collect a fee on behalf of customs they will charge an admin fee themselves.

  • Thank you so much for your reply 

  • You can get NDT (Natural Dessicated Thyroid Hormones prescribed in the UK) unfortunately you would probably be better to dig in the back garden to retrieve a pot of gold :) The doctor would have to put on the prescription 'On a Named Patient basis'

    thyroiduk.org.uk/tuk/treatm...

    thyroiduk.org.uk/tuk/treatm...

    The guidelines of the BTA etc recommend only levothyroxine despite NDT being used successfully since 1892. The pharmaceutical companies have done a sterling job in replacing NDT with levo but not content with that alone, rumours appear to have been spread which is believed. Fortunately there are doctors who have scruples:

    thyroidscience.com/Criticis...

  • Thank you :-) 

  • About Armour prescribing in your area, if you click "Show on map" and zoom in at: openprescribing.net/analyse...

    you'll see that none of the three Leeds CCGs prescribed Armour in November `15, but there's a tiny glimmer of hope in the adjacent CCGs to the north and west.

    Very interesting (though horrible for you) to hear about the heavy metal toxicity, and to also be mindful of the potential danger of mercury amalgam tooth fillings.

  • Thank you ;-) 

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