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Thanks so much! I just keep on fighting the fight and hoping for the best! I did get good news that my 2 hospital stays have been forgiven by the company that owns both hospitals. That has been a blessing! Now I just have to work out some sort of payments with the doctors, ambulance service, labs and the others that were brought in as consultants. That is managaeable
” title=”Very Happy” /> Hopefully my disability will go through so that I will be able to qualify for Medicare. Fighting this Graves Disease is a fight in itself not to mention the Charcot-Marie-Tooth disease on top of it. Thanks again everyone for the advice, information and words of encouragement! They mean a lot!Hi again everyone! I wanted to give a quick update and find out about some things. I still haven’t gotten anywhere on trying to get insurance
I have only seen the endo once and wasn’t happy with the way that visit turned out at all. He put me on 150mg of PTU 3 times daily and I am due to go back in March. In the meantime I have been seeing the heart specialist monthly- he is very concerned because of the endo not keeping a closer eye on my thyroid levels after them being so off the charts when I ended up in the hospital and has been testing my levels himself. Today’s results were T4-6.7 and TSH-0. I don’t have a clue what the levels were when I had my ‘thyroid crisis’ but what do these levels mean anyway and how far off from normal are they? He (heart specialist) had me on 100 mg Lopressor twice a day and had told me last month to cut back to 50 mg twice a day for 2 weeks then to 25 mg twice a day. When I was in there today he said to stay on the 50mg and not cut back anymore because of the thyroid levels. He told me they should have straightened out after a few weeks of being on PTU. How long does it normally take for the PTU to level things out and does it ever ‘level’ out if you are not able to have RAI?
I have been told that the longer you are on beta blockers the less effective they become? Does anyone know about that? I am really scared to have my heart act like it did before and end up once again in Afib. With my thyroid levels being what they are now should I call and let my endo know? I know he wanted to do the RAI but it just wasn’t feasible at this point with me not having insurance.The only difference that I have physically noticed at this point is that I am getting some strength in my legs back and my energy level is a little better but I really bottom out in the afternoons and have to have a nap most days and I’m to the point of needing to go to bed really early. I have stopped losing weight unfortunately because I could really stand to lose another 40 lbs to be at an ideal weight. The hand tremors seem much better but I am getting ‘eye twitches’ fairly often and can’t seem to read for very long periods now. Any thoughts or help would be greatly appreciated!
