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Having listened to you all, I have phoned the doctors and made an appointment, can u believe, 10th May, just as well I'm not going anywhere lol, ( sorry, my sense of humour) I'm house bound at the moment. Now, I need some advice, what do I ask, especially regarding T3. I'm on 200mg levothyroxine but feel awful, I can't walk at the moment. I don't think the levothyroxine is working anymore, I had a blood test a few months ago, which they said was fine, and no change to meds was needed. What T4/T3 medication can we get in UK, it would be helpful if I knew what to ask for. Many thanks

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  • tina2026 10th May isn't bad, that's less than 2 weeks. At my surgery it's at least 3 weeks unless it's an emergency and you might get one of the few 'ring on the day' emergency appointments if you're lucky.

    While you're waiting, order the Blue Horizon Thyroid Check plus Eleven test, it's 20% off over the bank holiday weekend bluehorizonmedicals.co.uk/T... (use code at top of that page) and if you're quick you might get the results back before your appointment. This will test the full thyroid panel including both types of antibodies plus all important vitamins and minerals.

    To be on 200mcg Levo and still be so unwell could mean that you are not absorbing it properly. For thyroid hormone to work we need optimal levels of vitamins and minerals, not just in range, and that test will tell you if you have any deficiencies.

    Optimal levels needed are:

    Vit D - 100-150nmol/L

    B12 - very top of range, even 900-1000

    Folate - at least half way through it's range

    Ferritin - at least 70, recommended is half way through it's range

    Also, gut problems can prevent absorption, so can certain medication, so can taking Levo incorrectly.

    Do you take your Levo on an empty stomach, one hour before or two hours after food? Do you take it with water only? Tea, coffee, milk, etc shouldn't​ be taken with Levo.

    Do you have your last test results? If not ask for a print out and post them for members to comment (it is your legal right to have them under the Data Protection Act).

    When having thyroid tests, always have blood drawn at the earliest appointment of the day, fast overnight (you can have water) and leave off Levo for 24 hours - same applies for the Blue Horizon test.

    As for T4/T3 medication in the UK, well there's very little chance of that. T3 is very difficult to get prescribed, most doctors either don't know anything about it or don't believe it helps, and most CCGs are now refusing to prescribe due to it's extortionate cost. Natural desiccated thyroid (a combination of T4/T3) can only be prescribed on a named patient basis' and very few doctors are willing to do that.

    You could ask your GP to test everything the Blue Horizon test covers but you won't get FT3 nor Thyroglobulin antibodies tested because the NHS rarely does them. Ask for

    TSH

    FT4

    FT3

    Thyroid Peroxidase antibodies

    Thyroglobulin antibodies

    Vit D

    B12

    Folate

    Ferritin

    Whether you do the Blue Horizon test or have them done by your GP, post the results with reference ranges and members can help.

  • Really empathise with you, I have been practically house bound for eight months now. I was on 100mcg Levothyroxine. Eventually I worked out my symptoms got much worse approximately 2 hrs after taking the dreaded Levothyroxine. Was on it for 13 years, over last 5 years gradually became more and more unwell. I am definitely having a bad side effects to Levothyroxine ( excessive fatigue, dizziness, balance problems, feeling like I am going to collapse, headaches, memory problems and brain fog) I have had private tests done which does say I am not converting T4 to T3 as efficiently as I should be. Through Thyroid UK I am now seeing doctor in Exeter (there is a list of private doctors on Thyroid UK, in UK who can privately prescribe range of alternatives to Levothyroxine) who can privately prescribe Armour T4/T3, still very fatigued but other symptoms have improved. There are a variety of alternatives to Levothyroxine which he prescribes Efra which is a T4/T3 combination, Nature Throid T4/T3 combination, Slow release T3 and T3. Although some of my symptoms have improved on Armour don't think it is right for me. I don't understand enough about it yet to make decision on doses of these alternatives, so my plan is to go with doc in Exeter until I get it right then source appropriate treatment abroad.

    I had tests done through Regenerus Laboratories which included TSH, T4, Free T4, Free T3, conversion problems and Reverse T3. Genova diagnostics also carry out these tests. Some people have a faulty gene which I also have called DI02 (test available for DIO2 as well).

    Good luck

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