Please can someone help answer this as I'm so angry with daughters endo

daughter born with underactive thyroid and on levo for 26 yrs and no probs till last year. Put on 3 stone in a couple of months and large goitre in neck which is intermittently painful and now affecting breathing. Lots of other issues appeared at same time also. At endo appt (she hasn't seen an endo since she was a child) she disagreed with him when he said to up the levo as her gp had been doing this n she had overactive symptoms. The endo described her as a very anxious lady (which she wasn't, she just disagreed to up her levo coz of subsequent symptoms), he then described her goitre as palpable and non tender?? (not true) Should she even have developed a goitre when on high dose levo?he then said he'd see her in 3 months?? I'm very worried about her

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  • Hi,

    Have you read hypothyroidism in childhood and adulthood by C Phillips and D Roach? They are identical twins and they had terrible problems. They now take Natural Desiccated Thyroid and lead normal, healthy lives. I think you can buy it from Thyroid UK.

  • Thanks.. Because my daughter's feeling so unwell at moment she won't mess with the levo as I have tried to talk to her about the desiccated thyroid. I just find it difficult to believe that she hasn't seen an endo for 17 yrs, is having all these problems and he's not going to do anything for her! All I seem to do lately is come across lazy Drs who try to write inaccurate letters so they don't have to do anything!

    apologies for the rant but my family seems cursed by these particular types of Drs and my patience has gone re them.

  • I am sorry your daughter is so unwell. It is a worry and we expect our doctors to know how to relieve symptoms but they don't know one symptom from another and rely only on the TSH. I also understand her not wanting to adjust her medication as she has been on it for years and is not really better but sometimes the thought of change makes you feel worse, you cannot cope with being messed about. We want answers from our GP and proper medication but unfortunately it's not always forthcoming.

    If you email louise.warvill@thyroiduk.org and ask for a list of NHS Endos/private doctors one of whom may be near you and who are sympathetic.

    Breathing problems, in particular, need to be investigated and I hope your daughter will agree. I was another person who didn't get well on levothyroxine. I am now on T3 alone and am fine.

  • Hi , I think that swelling needs to be investigated and ultasounded. She needs to insist that if it affects her breathing and I bet she also has the preassure/strangly feeling there too. They were my 1st symptoms and since have had my thyroids removed.

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