Any advice greatly appreciated

Hi everyone I'm new and only just joined. I wish I'd found this site 20 years ago !

Everyone is so lovely and if I'd been armed with some of the info on here I'm sure I would have been living a better normal life.

I've been on levothyroxine for years and now on 200 mg since 1 November .. I know it's early days and we are all different but I really want to try a different medication. Either NDT or by adding t3 ? As I'm sure this will help But I've paid to see an endo here in the uk twice now and he refuses to try anything different !

I'm at the end of my tether and want to write a letter to him as my next appointment is not until next year !

Has anyone got any good points to help me compile a letter to him. I'm afraid I'm not as sharp as I used to be and can't think straight

Any advice would be greatly appreciated

9 Replies

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  • Sporty-mi,

    There's no point in trying to persuade an endocrinologist who won't trial alternatives to Levothyroxine. Email louise.roberts@thyroiduk.org.uk for a list of member recommended endos but contact their offices to check they will prescribe T3 or NDT before you book a consultation.

    Alternatively, you can buy T3 and NDT online and self medicate. You can post a request for sources which members will send via private messages. If you post your recent thyroid results and ranges members will advise how to dose.

  • Thank you clutter. I've applied for the list from thyroid uk paying for the pack. I'm waiting for it to arrive. I suppose I'll have to be patient. Lol

    Thanks for your kind advice.

  • Can I ask do you know your blood results? also do you take your meds on and empty belly at least half hour before food and any drink except water?

  • Thank you for replying. Yes I posted them a while back I'm due some new tests in another 3 weeks so I'll post them when I get them 😊 Everyone has been so unerdstandung and kind. It helps when I live on my own and think I'm going mad ! Lol.

    I used to take it in the morning but now I take it on an empty stomach at night.

  • I was silly and did not read the instructions I used to take it in the morning but not on an empty belly till I went to a thyroid meeting and found out I should take it on an empty belly and my tabs were reduced from 225 to 200. x

    I too have been on meds over twenty years it is amazing the help we get on this site

  • I know I have only just found this site it's amazing

  • Thanks yes I'm hashi and pa.

    I get b12 injections every 10 weeks.

    My levothyroxine has increased over the 20years I've been taking it .. my TSH is over 20 so they've increased it from 150 to 200.

  • I have no thyroid as a result of RAI removal after hyperthyroidism. The resulting treatment on Levo did very little for me and I bought Armour on line. I was pretty lacking in knowledge other than the fact that my mother was on it for 30 years until she died of natural cause aged 87.

    I was referred to an endo who insisted that this was not good treatment and that I really needed T3 with Levo. He wrote to GP accordingly but wanted me back on Levo first. I had another appointment with him but by then he was not allowed to prescribe T3 ( new rules from NHS). Eventually with no improvement at all I decided that I would use my in date Nature Throid cluttering up a cupboard and fridge and provide my own T3! I combined reducing amounts of Levo with increasing amounts of NT over a few months. Now on 1 and half grains and am getting better all the time. I had a meeting with my GP ( not a consultation) and told her the story and shared my BH test results. She was not impressed but agreed that she couldn't get FT3 tested nor prescribe T3 on lab and NHS restrictions.

    Their hands are tied unless they risk their careers.

    janveron

  • Wow that's awful though .. as you showed improvement on nature thyroid and they still won't listen.

    Where about are you in the uk ? I'm in Wirral but I have a friend who's in Manchester that has been prescribed t3.

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