My Endo appointment

I saw an endocrinologist for the first time today, and I've come away feeling absolutely baffled! She was very nice and listened to everything I had to say regarding my symptoms and history. She even agreed that taking T3 would be an option if my test results suggested it was appropriate. However, she thinks that, looking at my test results over the last 18months, I may not actually be hypothyroid! I'm not autoimmune anyway, but she thinks my symptoms could be caused by taking levothyroxine, and that the real problem could be my pituitary. I'm now waiting for an MRI and a cortisol test, along with another thyroid panel.

11 Replies

  • Do you have a copy of your results when you were diagnosed? That's the only way you'll know whether you are or not. Endos don't always know what they're talking about, even if they are nice, I'm afraid.

  • The hospital didn't have my old notes, but I've just heard from the GP surgery that they have the paper copies now, and are collating all relevant test results and letters for me to collect. I'll be able to pass them on to the endo when I go for the cortisol test next week.

    I had been considering the possibility of a pituitary issue, anyway, hopefully I'll get some answers soon.

    Thanks Greygoose.

  • Well, don't forget to make copies for yourself. You really need to keep you own records. You need to know exactly what was tested, and exactly what the result was.

    Seems to me unlikely that you have a pituitary issue, because doctors know nothing about that, and it's rarely diagnosed. If you have a pituitary or a hypothalamus problem, you TSH would have been low as well as your Frees. If you now have a low TSH, after x number of years being treated with thyroid hormone replacement, a low TSH just means that you're taking thyroid hormone replacement, that's all. It doesn't mean that you don't have hypothyroidism, and it doesn't mean you have a pituitary problem. That is why you need to know what your results were when you were diagnosed. You, as well as your endo. :)

  • Thank you, I will keep a copy myself. I'm still chasing the missing link, that being my records from the 14 years I lived in Spain! I had a head injury and my TSH shot up, which started all the problems I'm experiencing now.

    I'll post my original results when I get them, it will be interesting, as I have little recollection of that time!

  • Were you diagnosed in Spain, then? I don't know what thyroid care is like in Spain, but it's perfectly possible that you might have got a diagnosis more easily there, than you would under the NHS.

  • No, I was diagnosed in England 22 years ago. I moved to Spain in 2002, and lived there for 13 years. I hadn't had any problems at all and had a full range of blood tests done every year as a matter of routine. It was after being hit by a car, and going head first into a stone wall that my TSH shot up. Since then, every blood test has signalled a reduction in Levothyroxine dose, and my symptoms have got worse and worse. Alas my GP won't test FT3, hence my referral to the endo

  • Ok well, that does sound more complicated than it first appeared. Be interesting to see your results.

  • I have obtained the notes from my original diagnosis in 1994, although not complete with ranges. My TSH was >100 and FT4 <3. Microsomal antibodies weakly positive thyroglobin.

    This clearly shows that I was at least then, hypothyroid, as I wasn't on Levothyroxine on diagnosis!

    I'm having to jump through hoops to get my Spanish records, but they've responded to my request. I just have to complete a 3 page form and send certified copies of all my Spanish ID documents😱!

  • If you were hypo then, then you're hypo now. It doesn't go away. But, if your doctor is just dosing by the TSH, then you're never going to get anywhere! They are so dumb!

  • Jackiez,

    If your TSH was high and FT4 and FT3 in normal range when you were diagnosed you have primary hypothyroidism due to thyroid failure.

    If your TSH was low-normal and FT4 or FT3 low in range or below range when you were diagnosed you have secondary hypothyroidism (pituitary dysfunction) or tertiary hypothyroidism (hypothalmic dysfunction). If you have secondary or tertiary hypothyroidism Levothyroxine is prescribed to replace the low FT4 and FT3.

    If the problem is with your pituitary gland sex and growth hormones should be checked in case of deficiencies.

  • Thanks Clutter, I will have some answers, hopefully, next week. At my age I would have thought any issues with growth or sex hormones would have shown up by now😊!

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