Endo visit!!

Informed today that all thyroid tests were normal. Asked why I am still suffering from all the symptoms. 'You have a little thing called Graves my dear' I told him in so many words that I know this, but want to know why I am still suffering with the symptoms if normal thyroid values and I am concerned that my mind seems to be 'cloudy' and I am becoming forgetful. 'Get your GP to send you to the memory clinic, perhaps it is early onset of dementia or you are suffering from depression' This tipped me over the edge as you can imagine. Now he is threatening to stop my carb because of the symptoms and my behaviour as it could be a reaction to the carb. OMG just when I thought I might be coming to terms with it and thought one day soon I would feel better and supported.

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13 Replies

  • What a **** of an endo. Have they all totally forgotten that the purpose of the medical profession is to help us get better?

    After all, you don't need a medical degree to read a set of test results and adjust meds accordingly - we could all do that for ourselves!

    The thing we CAN'T do is work out why something is not making us feel better. That what they are for, hence all the very expensive and, apparently, pointless training.

    I really do feel for you. (((HUG)))

    Marie XX

  • What a nerve. If there is one thing - well one of many things really - that I can't stand it is being called 'my dear' - so patronising, the cheek of him! And to think he would hint at early onset of memory problems etc and threaten to cut your carb!

    Maybe you should go to the memory clinic and tell them why you are there to give the idiot a complete showing up. Honestly!

  • Still would like to know why I still feel like **** I am really pleased test are within normal range, but just want to know if the graves goes on? Thank you so much

  • Have a feeling that once you have graves you can get rid if the symptoms but still have Graves (I've got Graves) but I'm open to being corrected on that.

    You might be feeling rubbish because even though you are within the range you are not at the best point within 'the range' for you.

    I know I am very sensitive about where I am within the range, I do better right down on the TSH scale and right up on the T4 scale - I felt good at TSH 0.68 (0.35 - 5.5) and Free T4 - 16.90 (10 - 19.8) but bad ( very cold, constipated etc) when I had TSH - 1.4 (0.35 - 5.5) and FT4 - 15.4. (10 - 19.8) all it took to improve me was a little bit more levo, the numbers don't look much different really but the difference in how I felt was huge, that is just me though, I'm sure everyone has their own best place on the range and you could be different.

    Hope that's some help.

  • Thank you. I do know that Graves doesn't go, but we go into some kind of remission. I think also we 'run' better at different ranges, just wished these endos would give us (me) the time of days and not make me feel like I am making it all up!!

  • Do you have your results GeorgieB? It might be worth posting them because as LizH says it does matter where in the range you are as to how you feel. Also, just from my own experience, I felt worse when I became euthyroid than I had felt before, because I also had untreated nutritional deficiencies. I didn't feel better, and my thyroid levels didn't stabilise, until these were sorted out. Have you had all the usual vits and mins tested?

  • Meant to add your Endo is a disgrace. If your thyroid is "normal" in his eyes, but you are suffering from brain fog and memory issues, then he should be investigating for linked conditions that also cause those symptoms. As an example B12 deficiency (Pernicious Anaemia) is a linked condition, and has very similar symptoms to thyroid disease:


  • As my 18 yr old grandaughter said to the endopratt " do you have hashimiotos ....NO...well then you have no idea just how lousy i feel "

    My husband originally had Graves and his head was a ball of wool the entire time he was on carbimazole

    majority of doctors and endos are a total and utter disgrace

  • Hi , your endo is a ass, sorry. Graves as you no is autoimmune d, and it's your antibodies that are making you feel ill, the cause of your antibodies needs investigating, this could range from vitamin and mineral deficiencies or food intolerance. Graves can not be cured but can I believe be managed. The problem is no thyroid meds are going to work because the underlying cause has not been addressed. I am quite shocked at your endos responce. Xxx

  • Hence, taking thyroid meds have a honeymoon period, where the patient is well, then the doc increases med and the circle starts again. Sorting out your thyroid is not the issue here,it's your immune system attacking your gland. The tsh is useless without all the other parameters of the thyroid taken, this is why you still have symptoms, it is autoimmune not thyroid problem, if that makes sence, correcting the root cause will stabilize your thyroid / aka graves. X

  • what a prat . As usual we are forced into submission to keep quiet or we risk having to give up the treatment which we need. That is why so many patients don't cause waves because they are scared they will get substandard treatment.

  • Went to my GP yesterday and now claims it is depression! Ok I might be down due to everything but why oh why do I feel like I've been hit by a buscetc etc.

  • Go to an Integrative Physician who deals with thyroid and hormonal issues. This is the ONLY way to get the real help you need as well as the right meds/suppliments/support. It took me 8 years of suffering to finally throw in the towel to the NHS Endos and GPs who were not only ignorant but so damn self righteous they made me suffer all these years! SCREW them! I pay for my Integrative Physician but at least I am getting the RIGHT treatment and YES he GETS it and knows exactly what to do! No more nonsense or being told "you have a little health anxiety, don't you dear?" as some kind of diagnosis for why THEIR form of medicine and test results (mine were all "normal" too!) didn't do jack s*** for me! I lost my eyebrows, my hairline receeded, I gained 3 stone in weight, I got carpel tunnel (a KNOWN symptom of thryoid disease and was told it was from my pregnancy with my daughter, when in truth that is when my thyroid issues were showing and no one even looked there then. I had post natal depression, she did not breastfeed and all these were thyroid related, no one did a thing, and then came the menopause, (Oh, gee, take HRT and we can make it all go away) the post natal (take Prosac and we can make it all go away) Go to the Hair clinic and use ROGAIN , a toxic chemical on your head daily for the rest of your life! For the weight gain (would you like a by pass operation, I can get one for you!) For the carpal tunnel (I can schedule you in for an operation on both your hands!) and for the endless tiredness (oh, that is because you are a single parent, we call that singleparentisis!) NOW this is just the tip of the iceburg! I suffered so much, my daughter suffered and guess what? It was my own mother who has thyroid who actually said to me, "Has the doctor done a thyroid test on you? I have hypothyroidism and so might you?" This is having 7 or more years of symptoms when I finally asked my Doctor to do this, based on what my mother said. OH, ok then, she did and guess what? YEP! Now the fun begins, ups and downs of amounts of levo and still fill like shit, and so 17 years later, since my daughter was born, I finally found the right doctor who is addressing first my adrenals as he said, you have severe adrenal exhaustion! Then the thyroid when my adrenals are back to strength. People I urge you to stop looking where there really is no help. Take the time to look on the internet for an Integrative Physician, all those who did are very glad they did. If you must pay, then at least you get the right help, the right attitude and knowledge and are on your way to becoming well! and just as an aside...before I found my new doc, I asked my GP to do a thyroid test on my daughter. She did NOT want to do this. When I asked why she said, "she looks healthy." !!! I then said to her, "My Mother, Sister and two brothers all have hypothyroidism and so do I, do you think since it clearly runs in our family, she might NEED TO BE TESTED???" IDIOTS THE LOT OF THEM...ENDOS AT THE HOSPITALS EVEN WORSE!!! SHAME ON THEM ALL!!! Get thee to a new doc who knows what he/she is doing and that can be found in an INTEGRATIVE PHYSICIAN! Best of luck to you all and to your good health!

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