[ewmb]

#1064230

My endo told me that if the antibody test comes back negative he doesn’t take much stock in it. He thinks the test isn’t very good anyway. Mine was negative but all the others signs and tests, including family history, were Graves.

ewmb

[snelsen]

#1064231

Agree. Antibody test has nothing to do with treatment, and they can be normal and you can still have graves’.
Is this the first time you are on the board? Welcome. Were you hyper, taking anti thyroid drugs and aiming to get less hyper? Not sure where you are with your "journey!!"
Shirley

[Stephster]

#1064232

Hi guys

Not first time – found you all about 4 weeks ago, and am very grateful I did.

Long story short. I have been having symptoms since about January, in February my GP diagnosed me with anxiety/depression. In retrospect my symptoms got worse and worse, until my hair was falling out, I had diarrheoa, severe palpitations, racing heart, severe sweating, etc. The only thing was I was GAINING weight.
Anyway, went on holiday and doctor there diagnosed me straight away with severe hyperthyroidism, with free T3 and T4 very elevated and TSH < 0.01.
I since saw an endocrinologist approx 4 weeks ago, and was put on 40mg carbimazole and beta blockers. Went back to see him last week. My bloods have now come back as free thyroxine as 11.4 pmol/L ad TSH remains below 0.01. No antibodies. Have been on 20mg carbimazole for about 1 week now. Synptoms MUCH better, no more palpitations, although I am still SO hot and hungry all the time. 10lb weight gain in 3 weeks – aaargh…..

Really trying to remain positive about getting better, and then dieting again, but I only lost most of my babyweight recently ” title=”Sad” />.

[Stephster]

#1018357

So, I went to see Consultant last week, and got letter with results today.
I am getting fatter, not suprising as my free thyroxin levels, are now at the very low end of normal. I feel quite a bit better physically, but getting rather depressed at the weight gain.
Anyway, I had an auto antibod y profile, as consultant thought it fairly likely that I had Grave’s. However, this has come back negative – he has not commented what this means. From my vague understanding it should have come back positive if it is Grave’s.
Can’t speak to him until Tuesday as he only works at the private place one day a week.
Does anyone know what this means ?

Thanks

Steph

[Kimberly]

#1064233

Hi Steph – Since we aren’t doctors on this site, we can’t interpret labs here. However, I do want to mention that there is one particular antibody test that causes a lot of confusion. The Thyroid Stimulating Immunoglobulin (TSI ) test is a measure of how much stimulation the thyroid gland is receiving from our immune system’s attack on our thyroids. A result above the “normal” range indicates that there is enough antibody activity going on to make us hypERthyroid. However, a result below the “normal” cutoff still indicates the presence of the antibodies that cause Graves’ – but *in theory*, the antibodies should not be causing enough stimulation to the thyroid gland to make us hypER. (I say “in theory”, because I had a TSI below the cutoff at diagnosis, and I *was* hypER. The next time I had TSI tested, the value had quadrupled). Medical professionals who are not familiar with this test can sometimes mistakenly assume that a “normal” result means that we don’t have Graves’ Diesease.

In the U.S., there is a test that is often used if a patient is hypER, but antibody tests are not conclusive. The Radioactive Iodine Uptake test (RAIU) involves ingesting a *small* amount of radioactive iodine and then measuring at different intervals how much iodine the gland is taking up…and if there are certain spots that are gobbling up *more* iodine than usual. With Graves’, the thyroid gland takes up a ton of iodine that is evenly spread throughout the thyroid. If you have nodules that are pouring out thyroid hormone, you will show tiny “hot” spots that are gobbling up all the iodine. If uptake is low throughout the thyroid, the hypERthyroidism is occurring because the thyroid is pouring out already stored thyroid hormone…not making new hormone. This can indicate a condition called Hashimoto’s Thyroiditis.

Keep in mind that the specific tests and ranges that are done in the U.K. could be very different from what is standard here in the U.S.. Your best bet is to ask the doctor to help you understand what each result means. I would also suggest getting a hard copy to take home so that you can further absorb the results.

If you do a search on this site for "weight", you can see that many of us here struggle with weight issues. Here are some recommendations from a nutritionist who presented at last year’s conference:

1. Include breakfast daily within 2 hours of waking up.
2. Don’t go longer than 5 hours in between meals
3. Select “high volume” and “high fiber” foods such as fruits, veggies, and whole grains
4. Limit servings of healthy fats to 1 per day
5. Prioritize at LEAST 7 hours of sleep a night

Once a doctor’s clearance is obtained to resume activity, she also recommended 150 minutes per week of physical activity, plus strength training 2 times per week.

Hope this helps!

[Author]

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