[LaurelM]

#1073274

Hi,

I was diagnosed only with blood tests but some people also have what is called an uptake scan for diagnosis. I don’t know a whole lot about the uptake scans. Blood tests can be diagnostic for Graves, but not always. It depends on what tests were taken and what if the autoantibodies were active enough to show up on the test.

I would recommend that you get a copy of all your blood work that was done and start keeping a notebook. Note any symptoms & questions that you have. Take it with you to all of your Dr. appointments and write down the answers during your appointment and anything else the Dr. tells you.

It also sounds like you do not have much confidence in your current Dr. Find a good GP Dr. you have confidence in. You also will likely need an endocrinologist. Look for one that has a lot of experience with the thyroid. Many endos specialize in other endocrine diseases like diabetes and so are not as familiar with thyroid disease.

You mentioned that you were hypo in HS. It is also possible that you have Hashimoto’s which is the hypothyroid autoimmune disease which can occasionally send someone hyperthyroid for a brief time. I believe that there are some ‘lucky’ people with both. Regardless, if you have either hypo or hperthyroid, you need to get your thyroid levels into the normal range to protect your long term health.

I hope that helps a little.

Laurel

[amyl]

#1073275

Hi!
My son was diagnosed with GD in April, 2008 so I can tell you about his experience. At that time, he was extremely and chronically nauseous (which is not typical of GD), his hands were very shaky, he was HOT all of the time, had a lot of trouble sleeping, and had high blood pressure (these symptoms are more typical of GD). His doctor first ordered a blood test and found that his TSH, T3, and T4 levels were "out of whack". She ordered a "thyroid uptake scan" and the results from that test confirmed that he has GD. The uptake scan is a non-invasive test where he drank a little bit of radioactive iodine and scans were done on his thyroid to see how much iodine was absorbed by his thyroid. We were told that this test is the definitive test to determine GD.

The treatment options offered to us were: 1) take anti-thyroid meds 2) Neutralize his thyroid by ingesting a large amount of the radioactive iodine to essentially "kill" his thyroid or 3) surgically remove the thyroid.

We chose option #1 so he was placed on a medicine called Methimazole. The hope was that he would be on the medicine for 18 – 24 months and would eventually go into "remission". Well, after 10 months of being on the medicine, it was clear that he wasn’t going to go into remission so we then opted for option #2, which is commonly called RAI. So on 2/17, my son had RAI. Today is 2/28 (I think) and he’s still hyperactive but that’s to be expected. We were told it would take AT LEAST 4-6 weeks before he turned from hyper to hypo. Some people have said it could take at least a year to reach this point but we’re hoping for the best. Once my son becomes hypo, he will then have to take thyroid replacement hormones for the rest of his life. After watching my son struggle with being hyper, being hypo will be a relief. My husband and I are both hypo and our symptoms are so minimal compared to what our son’s gone through.

So, that’s been our experience with Graves’. There are moderators on this Board that can probably explain this better than I have and they’re wonderful at answering questions. I have learned so much from this site and I only found it a few weeks ago.

Good luck!!!
Amy

[mrstheweav]

#1019672

A couple weeks ago I went in to the dr. for a cough. He is this really old man and very unthourough. For example, I asked him if I had an ear infection and he used a flashlight and shined it on my ear and looked at it from about a foot away and told me I had an ear infection. Anyways, while I was sitting there he all of a sudden comes over and starts looking at my neck, asks me to swallow, feels it a little and asks if I have had any thyroid problems. I was still in the mindset of being sick and it was so out of the blue that I wasn’t paying much attention to what he said and was thinking lymph nodes for some reason. I told him one was always swollen. Then he decideds to order some blood tests. Didn’t think much of it. I go back to the doctor for the results and here is what he tells me: "You have graves disease, and there’s nothing you can do about it". I think "okay, well thanks for the blood tests, I’ll research this one on my own". I knew basically what graves disease was but didn’t really know all the symptoms or treatments. Everything I have read though says that I should be on medication if I really do have graves disease. But is GD conclusive based only off of a blood test? As far as symptoms go, the dr. said my thyroid is swollen, and I think it may be a little bit. He didn’t ask me about any other symptoms but from what I have read I have some fatigue, difficulty sleeping, irritability, and anxiety. Maybe a little heat sensitivity and increased sweating but I don’t really know. Also as far as weight loss, I haven’t really lost any but I do eat a lot and I don’t gain weight, but I never have. Also, many of my symptoms could also be the fact that I am in school and super busy and have two kids to take care of and have been stressed lately. I have also been getting sick more often than ever before just this year. I am 24. I also had hypothyroidism when I was in highschool but it went away, is that wierd? So, basically, what do I do now. I figure I should go to another dr. for a second opinion but I just haven’t had the time lately. A side note, most my symptoms got better at the same time I usually would have had PMS, wierd right? So, I’m just confused. Any advice would be great. Obviously I understand that medical advice can only come from a dr but anything else would be great. Thanks.

[mrstheweav]

#1073276

Thanks so much Amy and Laurel for your responses, that helped. I did finally get a dr. appointment set up for Friday with a different dr. so we will see how that goes. I think they will probably refer me to an endo so that will be good. Hopefully I can find one easily enough. Thanks again.

[DianneW]

#1073277

Welcome, mrstheweav,

I can’t imagine why a doctor would tell you that you have Graves’ Disease and that there’s nothing you can do about it, in the same sentence. Graves’ Disease is a treatable disease, and in fact it’s usually dangerous NOT to treat this. The only thing I can think of is that perhaps your levels are low and he was recommending that you be monitored, but you didn’t mention that as his recommendation.

You are making the right choice to get a second opinion. Please let us know what you find out!

In the meantime, I’m sure you can find a lot of useful information by reading posts on this board. If you have any questions, just ask.

Best wishes,

[Author]

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