Saw my Endo today and... (Addison's Disease)

she has agreed to give me all of the tests people on this group have recommended so thank you all so much. I wouldn't have known what to ask for without your support.

She does however seem very set on the ranges being set in stone and this is a little worrying. The reason she agreed to the additional tests is because apparently by blood tests results don't match the symptoms I'm presenting.

Anyway, I will be having a blood test for FT3, FT4, TSH, Ferratin, B12, Vitamin D, Prolactin, Estradiol, Folate, U/E Creatinine, LFT, Bone and FSH (phew!) and she also wants me to be tested at the hospital for Addison's Disease which apparently involves injecting me with some kind of steroid. Has anybody had this done and can shed any further light on this for me?

Thank you again for all of your advice. It really has been invaluable and I hope that one day my knowledge will be such that I can return the favour to somebody else in search of answers.

4 Replies

oldestnewest
  • Hi emma -marie

    yes I had all these tests done sept last year and was diagnosed with addisons(not full blown) as I still produce some cortisol but am now on 25mg of hydrocortisone a day. Have been hashi hypo for 28 years and taking fluctuating doses of levo for this time but about 5 years ago I complained constantly to doctors that I had all symptons of being hypo and very unwell but as with all GPs testing TSH he said all ok with thyroid it must be menopause and stress (which of course do have some impact). I then developed fybromyalgia and C.F.S and felt scared and frustrated that all I felt I could do was rest and sleep so had enough and pushed GP for endo app, I felt they only did all the tests as my father had acromelgy (over production of cortisol) and he had a piturity tumour. I had a short acth test that showed low basal cortisol so they went on to the other tests which showed I have addisons, also had MRI scan which showed empty sella so in fact I had been right as endo agrees that if adrenals are not working efficiently than thyroid meds most probably are not converting into my cells so that will be next step when I see hime in April and then the growth hormone (test showed I have abnormal low). SO its a long haul but I do feel that there is now light at the end of the tunnell, please do let us know how your tests go and the outcome. The tests are not nice and can make you feel drained but to be positive and hopeful that they can sort out your health is all important. Good luck and keep in touch

  • Hi, I had a short Synacthen test for Addisons disease recently and it was absolutely fine. They take your blood at the start to check cortisol levels, then inject you with something that will make you produce cortisol, then take another blood test 20 and 40 minutes later, to see if your cortisol responds in the usual way. I was in the clinic for about an hour in total, maybe a bit less. There's no preparation and whatever they inject you with had no effect at all on me, and the dr said there aren't really any known side effects to the test and it only makes your body produce a little bit more cortisol than usual.

    Luckily I don't have addison's disease, and I believe it is quite rare. Other than it being a slight faff to hang about for each test (take a book or something) it was all no bother whatsoever, and good to know one way or the other whether you have addisons or not.

    L x

  • Same as Lolalois,

    I had a Synacthen test a couple of weeks ago but they only retested once after 30 minutes. It cost me £130. If I had gone to Spire I believe it would have been around £250.

    No preps, no pain, no side effects whatsoever. You can drive or go back to work. Thankfully no Addison's. x

  • Thank you for all of your replys, glad to hear that most people do not test positive for Addison's. I'm surprised that you had to pay for yours though Stormyone - did you choose to go private?

    Still waiting for my appointment but it shouldn't be too long, feeling better about it hearing your experiences so thank you again. x

You may also like...