Beyond Frustrated

Well just back from seeing Endo - she concluded subclinical thyroid and that i should not be on levo as my TSH levels are normal. She explained that yes my immune system is attacking my thyroid but my thyroid is functioning normally (WHAT) she then said my symptoms where fibro related and needed to wait for new symptoms to indicate the thyroid is starting to decline (after saying fibro and hypo symptoms overlap significantly). She went on to say she wants further tests - re celiac disease and that my thyroid should be checked yearly as high risk due to antibodies. I swear i could cry with frustration, she indicated putting me on levo now could do harm to my heart and bones - this is what she is going to report to my GP. She finished by telling me that in a younger woman they would treat subclinical thyroid (again WHAT - is this not discrimination). She indicated that she thought 'something' was going on but it was not my thyroid. OMG just as i was getting somewhere back to square one

7 Replies

  • So, from the above, I assume you do have thyroid antibodies? If so she should have prescribed levothyroxine. Email and ask for a copy of the Pulse online article by Dr Toft (he was President of the BTA) and he recommends prescribing if the person has antibodies - to 'nip things in the bud'. I believe it's question 6.

    Take a copy or send a copy and highlight the fact that you should be prescribed.

    For goodness sake, your thyroid gland is fading but she ignores your symptoms. She also wants your symptoms to get so bad and the TSH above 10 before she prescribes.

    God help us against people we expect to know more than us, particularly with regard to such a 'common' autoimmune condition as hypothyroidism. The British Thyroid Association must take the blame for the unexplained ignorance of many who are supposed to know more than the patients. Not so, it would seem.

    You can also copy the first page of the following as well as Dr Toft's article :-

    It's the arrogance of some that annoys but it is the inability to acknowledge the patients suffering which is worse.

  • Yes my TPO was 172 IU/ml (<34) High when tested in Sept 2016. However because my TSH was 1.65mU/L (0.3 -4.2) and Free T4 was 13.6 (10.6 -23.2) she said my thyroid was functioning normally. Despite T4 being bottom of the range, the Erythrocyte Sed rate being high at 14 (1-12) and my Serum Thyroglobulin level also being high 78 (1.6 - 60). She said something was going on due to high E Sed Rate but not thyroid. Refused other blood tests except for those she decided noted above. I showed her articles from Dr Lowe and she basically ignored his evidence

  • Oh and retest since GP put me on very low dose of Levo is Free T4 14.5 and TSH 1.23 (same ranges) - which she is gonna tell GP to stop :( .

  • They will follow the guidelines laid down by the BTA unfortunately and not take into consideration our clinical symptoms.

    This doctor died of a stroke after being hounded by the BTA for treating patients other doctors would not. He took account of their clinical symptoms. He went before the GMC quite a few times and he wasn't an Endocrinologist but a Virologist but was trained in clinical symptoms (before blood tests and levo were introduced as the only way to diagnosed). 2,500 letters from grateful patients were sent to the GMC and some even went to the hearings.

  • When you email Louise also ask for current list of recommended "thyroid friendly' consultants.

    Many of us on here have sadly often had several disastrous consultations before finding one on the right wave length.

  • Hi graine_fosse.. that's a shame you were Up against an Endo like that.. I go tomorrow for first appt wish me luck!! This Endo I am seeing ....told my GP by email.. don't prescribe anything to this patient as I might cause heart problems !!! Shocking !! Luckily another consultant prescribed Levi recently.. felt the benefit after 5 days... fluid reduction in ankles and face.. Haven't got as far as antibodies yet not been tested, but will request it .. and my own privately, if required. The ignorance around Thyroid issues and the depletion of essential vitamins because if it .... ridiculous. That sounds a good idea to get a copy of the guidelines .. think will print them for myself too!! We will get there ! ! Big hugs xx

  • Good luck hope it goes well

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