[Anonymous]

#1021766

Thanks to “Ski” for the nice reply. Sometimes it helps just to hear from people who have “been there” I finally got approved for the thyroid scan but the earlist appt. was May 3rd. I also had the same thought of making my endo appt. early so I wouldn’t have more delay, but they wouldn’t make one until after the test, and the endo consult was approved. So I’m looking at at least another 6 weeks. It is hard to take your mind off the fact that you aren’t really being treated for all this time. I do feel better with the beta blockers, but its really just a symptom masker. I kind of have to laugh..when you are on hold at my doctors office, they play a continuous message, part of which is to get things treated early and don’t wait too long before coming in! Kind of ironic.

[Anonymous]

#1081035

Hi bagoda,

Sadly, there have been MANY people I’ve heard of that had difficulty getting the proper Graves’ diagnosis. It’s not an absolute certainty that this is what you’re dealing with (yet), but unfortunately it seems to be the last thing anyone wants to believe (I mean the doctors). I was initially diagnosed with severe allergies because of my puffy eyelids and given Zyrtec to take once a day — you wouldn’t believe the tremors I had then! Others have been diagnosed and treated for anxiety for, literally, YEARS before someone sees the light. Thyroid disease is rather common, while Graves’ is really pretty rare, so sometimes doctors have had no more than a passing acquaintance with Graves’.

There are other tests that can verify Graves’ besides the TSH/T4 blood tests — there is a blood test for Graves’ antibodies, though that can read “negative” when in fact a patient DOES have Graves’, if the antibody levels just happen to be low. The antibody levels seem to rise and fall for no particular reason. However, if the test is positive for Graves’ antibodies, that is conclusive. They don’t appear and disappear. An uptake/scan of the thyroid can also provide a Graves’ diagnosis, but that’s more involved and will likely not be something the doctor will explore until your thyroid levels have been confirmed in the hyperthyroid range.

Ask your doctor, perhaps, to test both TSH and T4. Sometimes the picture of the two together can be more convincing as well.

It IS possible that Graves’ is not what you’re dealing with, but I wish you luck in treatment if you get conclusive proof. I think the fact that your TSH fell so far in a month may be telling. Hopefully your newest thyroid test will provide some help. Do you have records of previous TSH levels — before you were feeling ill? That can show a trend toward hyperthyroidism as well — sometimes we fall in the normal ranges, but still feel ill because it is not OUR perfect thyroid hormone level. We are very individual in that regard.

You have several advantages here — you know you are at risk for thyroid disease, and you are on top of the situation with your doctors. Continue to push until they find out what it is — if it’s not Graves’, there still needs to be an answer for you. You are having debilitating symptoms, and you need help.

Let us know how it turns out!

~Ski
NGDF Assistant Online Facilitato

[Anonymous]

#1081036

I went to my GP because I was always tired. They did a TSH and it came back normal. But within three months I was in his office with swollen ankles and a heart rate of 201. He sent me straight to the hospital they wanted to do ever test but a TSH. My aunt has Graves and was the first to see the signs. So I understand how one time the levels are normal and then shortly they change. As my ENDO said my levels were off the charts. If you have a family history I would push for the tests. Good luck.

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