[emmtee]

in reply to: What should I ask my Endo at my first appt? #1169975

Kimberly – It will be good to meet some fellow Graves patients. I’m gathering info, but I don’t want to make my final decision until after the meeting. I made a second appointment with the Endo on the 28th, but if I decide on drugs or surgery, I can call in and get a prescription before then. All my doctors (GP, surgeons, endo) are affiliated with the top hospital in Phoenix, and the specialists work out of the same office. My endo suggested that I might want one of the general surgeons do my thyroidectomy (if I chose that option) since I already have a relationship with them. She said they do a lot of thyroidectomies, but not usually for Graves. I had an appointment with the general surgeon (treating my abscess) on the 30th, but I moved it up to the 23rd so I can see him before I go back to my endo. I can ask then what he thinks.

Bobbi – Thanks for the info on RAI. That makes a lot of sense and is a big relief. My cat follows me around and likes to lie on the bed with me, but she’s not really a lap cat, so it would probably work out okay. I was afraid I might have to lock her in the spare bedroom and have my mother come over and feed her for a week. I saw my scans, and they were pretty even. The doctor said there were no nodules. I’m wondering if my dosage would be lower since my uptake was so high.

My symptoms have gotten worse even in the few weeks since my diagnosis. I have heart palpitations almost every night when I try to go to sleep, and my BP has gone up a bit – even with 50 mg of Metropolol 2x a day. This morning when I woke up, my left eye was sore and red. I’m really, really hoping I don’t have eye problems.

[emmtee]

in reply to: What should I ask my Endo at my first appt? #1169972

My labs didn’t include a T3 test and I haven’t had the test for antibodies. I assume that my symptoms and other tests are so classic that the doctors don’t think the antibody test in necessary? That was another question I forgot to put on my list.

I’ve never smoked, and my eyes aren’t that bad. I’m not even sure that there’s a change in my left eye, but the lid of my right eye is definitely raised. If they are bulging, it’s slight enough that it wouldn’t be noticeable without the lid thing. My vision is a little blurry, but that could be due to the fact that I’m overdue for an eye exam.

Kimberly – I noticed that you’re in Phoenix. Are you going to be at the support group meeting on the 12th? I plan on going, so if you’re there you can see my eyes for yourself. ” title=”Smile” />

Timing will be a major factor in my decision. I’ve been out of work for over a year due to an intestinal illness. I’ve had 2 surgeries and been hospitalized 2 additional times because I developed abdominal abcesses. The second abscess was 5 1/2 months ago and still hasn’t healed. I was just about ready to go back to work when I was diagnosed with Graves. I’m eager to get treated and get on with my life.

I’m making a "Pro’s and Con’s" list. Drugs seem like they might be a quick fix, but they really wouldn’t be "fixing" anything. I’d need a permanent solution at some point, so why not now when I’m not working anyway?

RAI seems like it would be a lot of trouble. I’ve been reading things about covering everything in your house with plastic, staying away from people, staying away from pets, etc. The people aren’t a problem, but my cat is kind of clingy. Also, I’ve read that it can take a long time for your hormones to stabilize after RAI.

Surgery no longer scares me, and thyroidectomy has the advantage of making you hypo immediately, so it was winning in my mind until I started seeing pictures of scars on the internet. I already have so many scars. ” title=”Sad” /> I have a referral to a dermatologist, so maybe I can ask her what I can do about scarring.

[emmtee]

in reply to: What should I ask my Endo at my first appt? #1169970

Well, I made a list and got all the answers. There are a few things I forgot to put on the list, though, so I’ll try to remember them for my next appointment. The main thing I’m still wondering is when my GD started to develop. I’ve had so many stressful events over the last few years, I’m wondering which one might have triggered the disease.

One big question I had that I wasn’t finding answers to on the internet is whether or not hyperthyroidism affects wound healing. I have an incision from an abcess that is over 5 months old, and about the only healing that’s happened was during the 6 weeks I had a wound vac. My endo confirmed that the slow healing could be due to being hyperthyroid.

I got copies of my labs. Quite impressive, in a bad way:
TSH: <.006 (.450 – 4.500)
T4: 4.31 (.082 – 1.77)
Uptake at 4 hours: 57% (normal 5 to 15%)
Uptake at 24 hours: 73% (normal 10 to 30%)

My endo told me that the left side of my thyroid is about double the normal size and the right side is about triple the normal size. One good thing is that she thinks my eye issues are more due to lid retraction than TED.

Now I have to make a decision about treatment. My endo said that, due to the size of my thyroid, she thinks it’s unlikely that the drugs will be a permanent solution. I was worried that RAI might make my eyes worse, but she doesn’t think so.

[emmtee]

in reply to: PLEASE HELP, NEED DOCTOR IN PHOENIX #1169062

I checked the two websites that Kimberly posted, and they only list three endocrinologists in the entire city of Phoenix. There aren’t enough of them, but I know there are more than that. I was just diagnosed (have yet to actually see my endo yet) but I definitely plan on going to the next support group meeting. It’s coming up on November 12th.

I do suggest you find an endocrinologist as soon as possible, though. Don’t wait for the meeting to make an appointment. I was referred to someone by my primary care physician. When I called to make an appointment, they were booking them in December. I called another clinic listed on my insurance website and they’re booking appointments next year. If your case is severe (like mine is) your doctor may be able to call and get an appointment for you sooner. That’s how I managed to get an appointment next week. My PCP knows the endocrinologist; they’re affiliated with the same hospital.

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