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  • Turquoise
      Post count: 20

      I was diagnosed with Graves last spring following a referral to an endocrinologist. She recommended RAI, and I saw her once more after that for a followup visit. That used up all of my referrals, so we communicated via her patient portal for the rest of the year, mainly about lab results. She made it clear that she thought a primary care doctor could manage my condition, so there’s no point in trying to get further visits authorized (besides, she was out of network, which caused various difficulties). Although I made sure my primary care doctor received a copy of lab results, he wasn’t really involved with management of the Graves. He closed his practice late last year, so I have an appointment with someone new coming up and would like to know what’s important to tell her (plus I need an order for lab tests). After the RAI, I was eventually put on levothyroxine, initially 88 and then 100 in late November. I haven’t had tests since then so don’t know how I’m doing. The only two issues I’m currently concerned about are an unusual degree of mood swings, irritability, etc., possibly related at least in part to the synthetic hormones, although I acknowledge some exceptional business and personal stress factors at the moment. Also, my path to diagnosis began when a doctor finally took my complaints of unintended weight loss seriously (roughly 20 lbs. over several years). I gained about 8-10 lbs. after starting the hormones but have now dropped back to roughly what I weighed before the diagnosis, although still a few pounds over the very lowest point I ever hit. I’ll mention it to the new doctor but wondered it this is significant in terms of my status. Any tips on how to start off with a new doctor? It’s up to her, but should I press for a referral to a specialist?

        Post count: 305

        I am managed by my internist and her nurse practitioner. Basically, you are dosed by your lab results so once your thyroid is gone or dead, I saw no need for an endocrinologist. It has worked well. I had a total thyroidectomy so I am not sure how long until there is no thyroid after RAI, but I would imagine if your dose has gone up you must be there. 100 micrograms seems to be an average dose for average weight women. All your internist needs really are current labs. At this point, I only get TSH and have dosed only by that for the past 4 years. Any symptoms are important but as you said, it is hard to tell what is causing them. I keep TSH between 1 and 2. Weight loss can make you require less levothyroxine.

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