[emmtee]

#1058782

I’m having my first appointment with my endocrinologist on Thursday and can’t wait. I’m so anxious about my condition. When I initially tried to make my endo appointment 2 weeks ago, I couldn’t get in for 7 weeks. After a day of crying and phone calls, I was able to get my appointment moved up to thursday. I don’t know how soon I’ll be able to see my endo again, so I want to make this first visit count. What should I ask her?

My GP told me my hyperthyroidism is severe. I’m not sure of the numbers, but the notes she sent home with me said my TSH is low and my T4 is high. I had a thyroid uptake and scan, and the technician told me that my 4-hour uptake was 50% (or something like that) so it would only take 3 1/2 minutes for my scans. I peeked at the monitor during my 24-hour uptake and I think the number was in the 70’s. The nuclear medicine doctor who reviewed my tests told me I have Graves Disease. He based that on my enlarged thyroid and lack of nodules. He also pointed out that my right eye is bulging. I think I have just about every symptom possible. Lucky me.

[Bobbi]

#1169969

Make a list of the questions that you have, that you would like the doctor to answer. Try to keep it limited to your most pressing concerns. We can have LOTS of questions, but our endos don’t necessarily have lots of time for us. Anyway, it is quite common to forget questions while we’re caught up in things at the doctor’s office, but it’s easier to ask them of the doctor than to try to get an answer from the office staff if you should call in later. And, one thing y ou may have noticed recently is that your memory is not as reliable as it used to be. While we are hyperthyroid, our brain is also affected, and it is harder to remember things, harder to concentrate.

A quick primer: TSH stands for Thyroid Stimulating Hormone. It comes from the pituitary gland, which acts as a kind of thermostat for thyroid levels. If the pituitary detects too little thyroid hormone, it raises its production of TSH to try to stimulate thyroid cells to make more hormone. Conversely, if it detects too much, it reduces its level of TSH to try to discourage thyroid cells from making hormone. When we have Graves, the thyroid cells no longer respond appropriately to the commands from the pituitary to reduce hormone production. So, it is very common in our early diagnosis for there to be little or no TSH detectable, and high levels of the true thyroid hormones, T4 and T3.

One thing you can do in the future is request a copy of your lab results to take home with you. It can be helpful to actually "see" it. The lab that does the test will give their range for normal levels, and you can watch your progress better that way.

I wish you good luck with your appointment.

[emmtee]

#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.

[Kimberly]

#1169971

Hello – The latest guidance on RAI from the American Association of Clinical Endocrinologists and the American Thyroid Association is based on whether the patient has visible and active eye involvement, how severe the involvement is, and whether the patient is considered “high risk” for worsening eye involvement. (Smokers and patients who have extremely high T3 or antibody levels are considered “high risk”). For patients with no risk factors and no active eye involvement, the guidance says that all three treatment options (RAI, Anti-Thyroid Drugs, Surgery) are equally acceptable. For patients with mild and active eye involvement, RAI is considered an “acceptable” therapy, although the guidance recommends that patients who are “high risk” should receive steroid therapy concurrently with the RAI treatment. For patients with active and moderate-to-severe or sight-threatening eye involvement, the guidance says that methimazole or thyroidectomy are the preferred treatment options.

Hope this helps!

[emmtee]

#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.

[Bobbi]

#1169973

It sounds like you have made good progress in organizing your thoughts and trying to establish priorities.

Knowing your T3 levels isn’t really going to provide any diagnostic help. What the doctors look at during the scan that you had done is the location of the radioiodine that collected in your thyroid. Sometimes it collects in globs, here and there: this they call hot nodules (among other things). When it collects rather uniformly throughout the thyroid (the terminology used is "diffuse"), they diagnose Graves.

What type of precautions you might need to take after RAI depends on the dose you are given, and just how cautious the attending physician is. Some of the more extreme precautions you might read about on the web (which include, sometimes, overnight stays in hospital) are typically associated with thyroid cancer patients who have their thyroids surgically removed, and then receive huge doses of RAI (several times the dose we get) to make sure that every last thyroid cell in the body is gone. Since they don’t have the gland any more (due to the surgery), the vast majority of the RAI they ingest is eliminated from their bodies via urine, sweat and saliva. And there can be a significant amount of it, so, yes, the precautions that need to be taken are generally much, much more than we have to consider. Since you are doing good research, y ou might want to make sure precisely what precautions you would have to take, based on the estimated dose you would be given. While you wouldn’t be able to pick up your cat and hold him/her against your neck for a week, he/she might be able to sit on your lap, or next to you. Perhaps not, but if RAI is still in consideration, you could find out more precisely. I have pets, and I simply could not hold them up high on my chest for the first week.

I have several friends who have had their thyroids surgically removed. Once healing has finished, there is little to no scar visible: the surgeons typically have "tucked it" into one of the folds on the skin of the neck, and the line itself is no bigger than a wrinkle.

[Kimberly]

#1169974

Hi emmtee – yes, I’ll be at the meeting on the 12th. Looking forward to meeting you!

[emmtee]

#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.

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