What can I expect from my first visit to Endo please?

I have finally got a referral to see an Endo (although the doctor did warn me not to pin my hopes on it). It isn't for about six weeks so I want to make sure that I have all the info I need in advance. Everything takes so long and I am struggling, especially with the dreaded brain fog. I don't want to turn up only to be sent for more of the same blood tests and come back in another six weeks. Any advice or experiences would be really gratefully received. Many thanks. Jenny

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  • Hi Jenny.

    Dont want to put a dampener on things, but yeah, you will be sent for yet more bloods, have your height and weight done, and go back in 6 to 12 weeks for the results.

    Dont be surprised if you get the old lines of.... within normal limits..... no treatment necessary...

    They go off the be all and end all of the TSH level, and the one that I saw even said that he would never treat anyone unless the TSH was nearer to 10!! I did tell him that he wouldnt be treating me at that point, as I would be dead.

    There are a few who got a decent endo, but unfortunately I got the one that thought he was God.

    Good luck

    Ann xxx

  • Thanks, unfortunately I suspect you are being realistic but I have to keep trying. Fingers crossed that I get a good one! Jx

  • Hi Jenny ,

    Good news you've got a date for your endo appointment.

    I've just recently had my first endo appointment and its helpful to get your bloods done a few days before your appointment. The results will be ready for you and your endo to access on the day.

    Another great tip I received from this forum is to take someone with you into your appointment and also write your symptoms, questions etc down to take with you on the day.

    Hope this helps, take care x

  • Thanks I certainly plan to write everything down and take info with me. I am determined to remember everything - even if I bore him into submission . Jx

  • Jenny, ask to see your test results. Explain that though they may be in range (if they are) and you have symptoms, request you wish to go to upper ranges as that will relieve symptoms and you are one of those people who needs to be in the higher ranges. (No law against that). Have you had the other tests like B12, folate, iron? If they are low and he will not allow a raise of thyroxine or NDT, these other tests may have to be improved and possibly also improve your conversion rate. Just don't leave without a promise that they are going to help you and you will only be forced to return if they don't.

    These are the test results that you need to have. stopthethyroidmadness.com/l...

  • Thanks should I be able to get the GP to do them in advance? Jx

  • For my first endo visit I was sent a form to take to get bloods done at my GP surgery a week before I went. I had been started on Carbimazole as soon as my GP got my initial blood test results, then I was retested three weeks after that and got a letter from the endo doubling my Carbimazole along with the request for bloods.

    When I got to the hospital I was weighed, had my BP taken sitting and standing, went in to see the endo - it turned out to be her senior house officer - got told everything I had read here and in books. At one point he mentioned antibodies and I said 'like in Graves' he looked at me and said ' Yes, Graves, that's what you've got, Graves' I was left wondering if he would ever have told me if I hadn't brought it up myself. There was nothing wrong with the guy but he didn't have the best patient manner, I felt if I had taken my husband in he would probably have spoken to him instead.

    Anyway he gave me thyroxine, told me to stop the Carbimazole for 'a few days' - but to start the levo at once then take both together eventually. He asked if I had any questions I said I was worried about my heart - pounding heart was one of my main symptoms - he dismissed that right away. I fact I have since read that my levels when I was hyper and then made hypo while I was on carbmazole only were both at levels that could cause problems!

    I was disappointed really, don't know what I expected but I didn't get it.

    My follow up visit a couple of months later was much better, I went expecting the worst and got the head lady, she was just amazing and understood exactly how I had been feeling and I came out floating on air along with a 25 mcg increase in my levo.

    My third visit was not with her but the young guy I saw was good with patients so I was happy with that visit too.

    Take a notebook and bullet point any questions or worries you have - I dont think they are surprised by that at all - especially as so many of us have the dreaded brain fog - also make sure you ask for and get the results (with ranges) of any blood tests you have done - if they ask why just say it is for your records.

    Liz x

  • Thanks Liz - this is really helpful. Jx

  • No problem, have just been through and sorted out all my predictive text typos - might make more sense now :-)

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