[ShoalBear]

#1058866

I have searched and scoured, but have not been able to find the info I am looking for: How GD progresses.

In particular, I am wondering what the normal (so to speak) progression rate is from the first abnormal TSH blood tests to a full-blown GD diagnosis with RAI being needed.

Does anyone have more info on this??

[Kimberly]

#1170492

Hello – Once you have a *definitive* diagnosis of hyperthyroidism due to Graves’ – and you have seen a specialist – patients are advised fairly quickly to select one of the three available treatment options (Anti-Thyroid Drugs, RAI, surgery to remove the thyroid gland).

However, there are several phases of testing that are involved in getting a definitive diagnosis. If TSH is suppressed, doctors will then move on to testing Free T4 and T3. If T3/T4 are normal, with a suppressed TSH, this is referred to as “subclinical hyperthyroidism”, and the process is usually “watch and wait” to see if this progresses to “overt” hyperthyroidism. (Higher than normal levels of T3/T4 indicate hyperthyroidism).

There was a study done in Europe a couple of years ago that indicated that only about 10% of patients with subclinical hyperthyroidism will progress to overt hyperthyroidism.

If the patient definitely has overt hyperthyroidism, additional testing is needed to determine the cause. Antibody tests such as TSI and TRAb can provide a definitive diagnosis of Graves’. There is also another test called an RAIU Uptake & Scan that can be used if the patient is definitely hypER, but the antibody tests aren’t conclusive. This can help identify other causes for hyperthyroidism, such as overactive nodules, or thyroiditis.

Hope this helps!

[ShoalBear]

#1170493

My reason for asking is this:

Back last April, my doctor did a TSH level and a T4 Free level test. The TSH was low (>.03) and the T4 was high (2.63). My doctor told me it was nothing. He didn’t advise me to get it rechecked, he didn’t give me any treatment, he just dismissed it, even when I specifically asked what was up with the abnormal results.

I was visiting friends in another state (prolonged visit) by October, and had been using her doctor, when they did the same test and it was abnormal and eventually diagnosed the GD. I was even put on Beta Blockers for the symptoms (rapid heart rate and tremors). It was bad, and my uptake test kinda even shocked the Nuclear Medicine people. In early December I had the RAI.

My concern is that my original doctor didn’t say/do anything. I realize that I still could have gotten as bad as fast, but I was thinking of seeing the patient rep at the clinic to discuss it, because it does upset me to think there was an obvious issue and he dismissed it as he did.

I don’t want to make a scene, I just want someone there to be aware that I believe his standard of care was extremely bad. I almost was in thyroid storm, and some of the symptoms I had complained to him about seem to be thyroid related, although I didn’t realize it at the time.

Do y’all think it is inappropriate to speak with the patient rep?

[Kimberly]

#1170494

Hello – We’re all just fellow patients here, but personally, I think it would be worth a call to the patient rep.

[snelsen]

#1170495

Hi. I think it is MOST appropriate for you to speak up. Mind you, I am “just” another patient with Graves’, but I have also worked in the health care provider arena for over 50 years. Fortunately, times are better now than they ever have been for a person, in this case a patient, but it could certainly be an advocate or family member, to speak up about their concerns.
The mottos that pretty much guide me are two:
1. Silence is acceptance
2. (well, I guess this is not a motto…!) Be your own advocate, when you learn new information, use it for your own welfare, and pass it forward for the welfare of others.

Some of what you do next, depends on how your were feeling in April. Was it a off the wall random thyroid function test, the TSH? Or did you report how your were feeling, which might have prompted the first doc doing the test.
It does seem to me that you were not served well, for there certainly should have been some patient education given to you. For him/her to dismiss it (and YOU!) when you asked specifically about it, I think is a travesty. I tend to agree with you that it was an obvious issue, and he dismissed it (and you.)
And that is not ok. So glad you received appropriate treatment. Maybe you need a new endo to follow you post RAI, there are labs to draw and things to watch for.
Shirley

[emmtee]

#1170496

Just a note about your test results: Different labs have different normals, so it’s hard to gauge how far off your results were without knowing what your lab’s normal range was. If your lab at home had a different normal range than the lab in the other state, you need to take that into account when comparing the blood test results.

BTW – I think you should definitely speak to the patient rep. You’re not complaining; you’re making things better for the patients who go to this doctor in the future.

[ShoalBear]

#1170497

I did speak with patient rep, and she was very nice. I need to get some more info from the other dr’s, which is hard to do from another state, but going to jump on that this week…will keep y’all updated

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