[Anonymous]

#1076528

I believe you are having the Uptake test. When I had mine I reminber going back 24 hours later. Also when my daughter had one she returned 24 hours later.

Yes it is possible that you have Graves Disease and do need to have it treated. Your endo may have said that surgery was not an option because there may not be a surgeon who does a lot of them. You may alway go to another endo for a second opinion. But do get treatment for this.

He more that likely has not given you any more medicine yet until you get treatment. Medicine for you “mood” you may have to go to your PCP about this.

Diane B On-Line Facilitator

[Anonymous]

#1076529

Yes, being hyperthyroid is horrid. The symptoms you describe are very familiar to all of us.

I can explain the uptake test. You take a small, measured dose of a radioactive isotope of iodine. (This is not RAI — it is a different isotope from the I131 we get when we opt for RAI to eliminate thyroid cells.) 24 hours later, when you go in again, they measure how much of the iodine has been taken up into your thyroid. Basically, I sat in front of a wand and heard ticking — sort of like a geiger counter. They also typically will do a scan of the thyroid after the uptake is measured. That simply involves lying on a table while a machine passes overhead and registers the distribution of the radioactive iodine in your thyroid. This gives a measure of the size of the thyroid as well. With Graves disease, the iodine will be throughout the thyroid (“diffuse”). This is one major way in which diagnosis is determined.

Is it common for someone to have postpartum thyroiditis and then, later, come down with Graves? I don’t know how “common” but it does happen, and not infrequently.

As for not giving you something to mask your mood swings, I don’t know of any particular drugs that might be able to do that. Some of us have been prescribed anti-depressants temporarily to help with depression that sometimes occurs, but the mood volatility? I don’t know of any drug that can do that. But the main way to eliminate the mood issues is to get firm control over your thyroid hormone levels.

If you do have Graves, please understand that your thyroid is permanently diseased. It may function normally again at some future point in time, but it will also go on the fritz again. The reason is that antibody action causes the thyroid to go wonky, and antibody levels can rise or fall for no well-understood reason. And it is unpredictable. I suspect this is why your doctor said the antithyroid drugs “don’t work.” They typically DO work to control thyroid hormone levels, but they will not cure what is wrong with your thyroid. And….Many doctors prefer to remove the thyroid from the equation when we have Graves (RAI or surgery). We are told that it is “easier” to control thyroid hormone levels with supplementation, rather than suppression (the antithyroid drugs).

Again, it is supremely important to get control of your thyroid hormone levels. Even minor levels of hyperthyroidism — levels that many of us got very comfortable with — have been proven to be detrimental to our long-term health. We lose bone while hyperthyroid, so early-onset osteoporosis becomes a possibility. We lose muscle while hyperthyroid, and that undermines our strength and stamina. It can wear away at the heart function.

I do hope you are feeling much better soon. Please know that we DO get well again. The treatment options usually work to give us back our health.

Bobbi — NGDF Online Facilitator

[Anonymous]

#1020263

Hi All,

My endo. believes I have Graves Disease. I am scheduled for an uptake test (?) on Monday.

My history: 6 years ago, a few months post partum, I was VERY hyperthyroid. I had an uptake test done and was told I had post partum thyroiditis. At the time, I was VERY symptomatic and felt horrible. It didn’t take long before I felt much better; however, in the last six years I have always had hair loss and heat intolerance…also just a pretty hyperactive person, but didn’t feel bad really. Once during the six years I thought surely I was hyperthyroid again but test results came back normal.

Now, the last few months I have had hyperthyroid symptoms that have gradually gotten worse. In the past couple of weeks, I have felt really badly.

Went to my prim. care doc (different than the one 6 yrs ago) and had blood work done.
RESULTS:
TSH= 0.0003 (or 0.003, I am not sure if I wrote it down correctly)
FT4=3.72 (upper normal is 1.9 I THINK)

I was referred to an endocrinologist (i did NOT see one the first time I was diagnosed hyperthyroid 6 yrs ago!).

He reviewed my syptoms, said I was VERY hyper and said he believed I had Graves’. He said I have three options:
1)Anti-thyroid drugs “they don’t work well”
2)RAI —he definitely wants me to do this one
3)surgery…”never really used, only for cancer really”

I asked how he KNEW I had Graves and he said we would do an uptake to make sure…high results = Graves, low results = thyroiditis. I am just wondering if it’s normal to have thyroiditis once and then have GD?

So on Monday I go for the test at 3:30 and go back at 3:45 on Tuesday. I am confused about this…I THOUGHT you had to go back just a couple of hours after taking the iodine and then again in 24hrs???

The next thing: I feel so horrible!!! I almost vibrated off the man’s exam table from the trembles and I am so extremely irritable!
My hands and ankles are swollen. I asked him for something for my mood and he said there isn’t anything he can give me….ARGH!

Please give me your opinion on my situation: is my Endocrinologist on the right track? What kind of test am I having on Monday and Tuesday…is it an uptake or something else?
Is there anything I can take now that will make me feel better….I am on 50mgs Atenolol and Atarax (for extreme itching which he said is hyperthyroid) but I also really feel I need something for my mood!

Thanks
Cathy

[Anonymous]

#1076530

So I recieved a call from my Gp this morning and he wants to up my PTU to 100 mg 4 times a day! My last labs after being on the ptu for only 2 months showed that my T4 was low normal range now and my T3 total was high normal but my TSH was still the same. He is basing this totally on the TSH level I am worried he does not know what he is doing. He is not giving me a referral to see and endo until Jan. I am thinking I should see him sooner, the endo. What do you all think is this normal to up the dose or am I right in thinking that it is too soon for such a measure? I just do not want to go the other way now.

thanx all

[Anonymous]

#1076531

It isn’t quite as easy to interpret lab results as we would like: those of us not trained as doctors don’t have a chance, really. So nobody here is qualified to tell you whether your doctor is off-base or not.

The TSH test IS the gold standard, however. If your body thinks that your thyroid hormone levels are too high — for you — your TSH will be suppressed. TSH is a bit like a moving average of actual thyroid hormone levels, so it does move slower into normal than the actual hormones, but that fact does not mean that you should ignore the TSH if the actual thyroid levels seem to be OK. There are two reasons I’ve been given for this by doctors. First, the test for the thyroid hormones (T4 and T3) is not as reliable as the TSH test, which can find teensier quantities of TSH more accurately. Second, the T3 levels, especially, can be very volatile . The snapshop view of it at the moment the blood is drawn does NOT necessarily show what the levels are throughout the rest of the day.

Basically, we must trust the doctors to know what they are doing. If we start “tinkering” thinking that we know better than them, we run the risk of making things worse in the long run. So your options are limited. You can, if you do not think your doctor’s credentials are appropriate to the task, get a second opinion. Seeing the endo sooner, rather than later, might give you more confidance. But in the meantime, please, follow your doctor’s instructions.

And one additional point: minor levels of hypothyroid are not necessarily debilitating. You sound afraid of going hypo — even temporarily. But 1) under the proper care you might “brush the corner” of it, but you will not go severely hypo. And 2) being slightly hypo is not nearly as bad for the body as being even slightly hyperthyroid, from what I’ve read. So your concern right now should be getting well and truly rid of hyperthyroid levels of hormone.

I do hope you are feeling better soon.
Bobbi — NGDF Online Facilitator

[Author]

Posts