Small group this evening, but still a very lively discussion. I shared a little about my current issues - my ultrasound results, my FT4 being too high (because I take my meds before my blood draws), my watery left eye, and my discoveries on my medical records. We covered all four, and the meeting wasn't dominated by my issues - amazing. We all got to share, which is nice in the smaller groups.
One person was taken off this new T4 med called Tirosant, while another was put on it. It is a gel or liquid form of T4, with nothing added to it. One of our members is on Armour, which is T4 from pigs - it is natural, and it works for some, but most ENDOs will not prescribe it since they do not know enough about it, and/or they were told it wasn't as good as the chemical forms of T4 when they were in med school. The rest are either on Levoxyl or Synthroid.
No matter what form of T4 we take, a recurrent issue is that some ENDOs go by our TSH and FT4 levels, and never take into account how we are feeling. Worse yet is when our ENDOs tell us something, or manage our care with guidelines that are either out-dated or are for non-ThyCa patients. We really need ENDOs and ENTs that specialize in thyroid cancer in San Diego. I have heard about an ENDO somewhere here in the US that is a ThyCa patient, so I can only imagine that this ENDO is giving his or her patients the best possible care because s/he knows exactly what we are going through. When is San Diego ever going to get one of these?!? We need one!, no, we need a few!
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