[Kimberly]

#1061728

Hello – The two tests that your doc gave you are generally used to check for Hashimoto’s Thyroiditis, another autoimmune thyroid condition. However, a high number of patients with Graves’ also happen to test positive for these antibodies as well. So I don’t know that either of these tests are giving you useful information.

Antibody tests for Graves’ include TSI (thyroid stimulating immunoglobulin), TRAb (thyrotropin receptor antibodies), and TBII (TSH-binding inhibitory immunoglobulin). These might actually give you a better picture of what is going on.

I’m sorry that your doctor’s office didn’t seem willing to help. ” title=”Sad” /> Until you can get in to see someone else, I would encourage you to visit the ER if your heart rate is high enough to cause you concern. You definitely shouldn’t have to feel miserable while you wait to see a specialist!

[erica]

#1017937

My doctor called, not my old old endo, but the current doc I am working with here in AZ. After my first rounds of labs came back “normal” I told her I feel awful, I will spare you the laundry list of symptoms, but they are like when I have GD bad. Therefore, she then ran a few more tests. She called just now to give me the results. They sound scary and I do not know if I should be scared.

My antithyroglobulin is 531 range is (0-40)
thyroidperoxidase is 103 range is (0-34)

She was not very nice on the phone, it sounded like she did not want to have anything more to do with me. I understand I will need to see a specialist, but as we all know that takes time. She said to take the PTU she gave me last time, I had not started it bc I was waiting for these labs. I simply asked if she could prescribe me something for anxiety, I am going crazy over here. She said no! Beta-blockers, no. Oooookay, so in the mean time I just sit around crying with a racing heart? What kind of doctor does that? Any advice please! My Husband and I have a little r&r weekend planned and I am very upset.
Relieved to have finally labs that show I am not crazy, but upset bc I don’t know what the labs mean. I know you guys can’t interpret, but anyone else have this. I don’t get it, do I have GD again? Why didn’t I think to ask that?! oooh yeah because have I intense brain fog and no meds!

thanks for any advice, Erica

[erica]

#1061729

Thanks so much! It is frustrating that the doc didn’t test for ALL thyroid tests the first go around, after I told her my past with GD. My TSH came back normal as did my T4. We are getting ready this morning to leave for our little trip so I will try to forget anything is wrong, but my body sure won’t let me. My Husband was sweet and bought me a bottle of wine last night ” title=”Smile” /> starting PTU today and hope it works fast. My legs feel like jello and hurt.

[Bobbi]

#1061730

Hi, Erica:

We are very, very ill while we are hyperthyroid. But testing "all" the possible thyroid numbers doesn’t necessarily help. If your blood tests showed elevated levels of T3 and T4, and suppressed levels of TSH you ARE hyperthyroid and need to take the antithyroid med given you (PTU). It doesn’t matter what the antibody tests show because it doesn’t matter why you are hyperthyroid at this point, only that you are hyperthyroid. PTU (and methimazole) acts as a chemical barrier to the production of thyroid hormone. It blocks the ability of thyroid cells to take iodine and make thyroid hormone. The trick is to get just the right amount of it. Take too much, and you will become hypothyroid; take too little and you will remain hyperthyroid. So it is important to get the blood tests asked of you by your doctor at the proper times.

Unfortunately, it is probably not wise to drink alcohol while taking PTU. Alcohol and PTU have been shown to be hard on the liver — in other words either one can potentially damage your liver. Taken together, they add to the possibility.

Anxiety levels, and rapid heart rates, etc., typically go away when we regain normal levels of thyroid hormone over time, so extra drugs (which put an extra burden on the liver) are not always necessary to combat these issues.

I do hope you are feeling better soon.

[gatorgirly]

#1061731

Erica,

I second Kimberly’s suggestion to go to the ER if your heart continues to race. My endocrinologist always tells me to go straight to the ER if it is ever over 120 resting for more than a minute or two. It did happen once, so I immediately called as I gathered my belongings to head to the ER, but taking a unscheduled extra dose of beta blockers helped within a few minutes. Unfortunately, since you can’t get a prescription for beta blockers, I would recommend going to the ER if it gets the point when you’re uncomfortable. If you have an Android phone or iPhone, there is a heart rate app that measures your heart rate in a fingertip through the camera. It’s incredibly accurate, and free. Sometimes it feels like my heart is racing or beating too hard, but when I check it, it’s really not that high, usually around 80-85.

Also, you really want to stay away from wine for several reasons. 1. Like Bobbi mentioned, it can seriously damage your liver when you’re on PTU. 2. While you have active Graves, I really don’t think alcohol helps. I stay away from anything that could potentially make things worse (greasy/fatty foods, high sodium foods, alcohol, and of course illicit drugs – not that I use those even when I’m healthy). And 3. Alcohol, wine especially, can increase your heart rate. Even one glass of wine made me feel like my heart was going to beat out of my chest when my Graves was at its worst.

[Kimberly]

#1061732

Hello – I know that the symptoms must be extremely frustrating, but I would really suggest bugging your doctor again about whether it’s a good idea to take PTU when your TSH, T3, and T4 are all in the "normal" range.

On occasion, I’ve heard of treating patients who have low TSH and normal T3/T4. This is referred to as "subclinical hyperthyroidism" — and there is some controversy over whether this should be treated with drugs. I’m just not familiar with anyone being prescribed PTU when *all* levels were in the "normal" range.

I hope you can get some relief soon!

[mikkie2876]

#1061733

I have low TSH and questionable normal T4 & T3, however my doctor told me that once you test positive (out of range) for any autoimmune antibodies (in my case I tested postive for a high level of TPOAb) the theory of "subclinical" goes out the window because the underlying Autoimmune Disease is causing the Hyperthyroidism and both need treatment.

I’m going in for a Tyroid Uptake Scan on Tuesday. There is nothing more fun I can think of then playing with radioactive iodine and Gamma rays…. ” title=”Wink” />

[Kimberly]

#1061734

Obviously, we’re not medical professionals here, but it seems it would make sense to test specifically for Graves’ Antibodies before moving forward with any particular treatment option. Common tests include TSI (thyroid stimulating immunoglobulin), TRAb (thyrotropin receptor antibodies), and TBII (TSH-binding inhibitory immunoglobulin).

Although many Graves’ patients test do test positive for TPOab and TGab, these tests are usually run to check for Hashimoto’s Thyroiditis. HT is an autoimmune thyroid condition that generally causes patients to be hypO, rather than hypER. Some members of this board actually have both Graves’ *and* HT.

I’m not against anti-thyroid drugs – I’ve been taking them since 2007! But if all my levels were normal without them, I would certainly want a really good explanation from my doctor before starting to take them again. Partly because of the side effects, the worst of which are more likely to occur during the first 90 days of starting or re-starting the meds; and partly because I’d be concerned about going from normal to hypO from taking a drug that blocks thyroid hormone production.

Again, I’m not a doctor, nor do I play one on TV. ” title=”Very Happy” /> I would just personally ask a lot of questions before starting ATDs with "normal" T3, T4, and TSH.

[mikkie2876]

#1061735

No…Kimberly I agree with you. I certainly wouldnt agree to be medicated yet at this point. Not until I have a clear diagnoses. I wasnt clear on the other Antibody tests until after doing more research and by then my Uptake was already scheduled so I went ahead and kept the appt. I figured its going to take me at least another week or two to make an appt with my doctor for the other tests so I might as well just move forward with the Uptake. Lucky for me (and I certainly am grateful) I have fantastic insurance so I have the advantage of being able to do the Uptake without having to worry about the financial aspect of it. My doctor has been extremely thorough with all of her testing, exams and monitoring. Almost to the point of being annoying because I just want to have an answer already! lol..

I certainly have many symptoms. Eye issues, diagnosed with early ONA just a few weeks ago (although Othomologist was not listening when I told him I had Thyroid Disease), a short list of physical ailments and my two recent issues- Severe mood swings and/or anger issues (VERY unlike me) and I have lost 30lbs since September. Loosing the weight hasnt been too awful in my situation because I was heavy to begin with, but if I keep this up I will start to not like the numbers on my scale.

[erica]

#1061736

Just want to thank everyone for their advice and kind words.

Just got back from a little r&r trip with my Husband. Yes, I do feel it is strange to take the PTU because my TSH, T3, &, T4 levels are ok, but I am not sure what one takes for antibodies readings like mine. I am going to have an appointment with my doctor on wed (she is not an endo, but I can’t wait 4 months for one) and let her know my concerns. Actually, the best relief I have had is knowing that the antibodies are sky high. My antithyroglobulin is 531 range is (0-40), thyroidperoxidase is 103 range is (0-34) finally feel justified and relieved to know what is wrong- it was hard for people to understand when my results were “normal” but I felt crazy.

Good to hear of more tests I can have to make insure the proper diagnosis, I had not heard of the tests: TSI (thyroid stimulating immunoglobulin), TRAb (thyrotropin receptor antibodies), and TBII (TSH-binding inhibitory immunoglobulin). Wish my doc would have tested for them too, not sure if these are just different names for what I have taken (above). I thank those people that mentioned I should have the tests I did have done, as my doc didn’t test for those until I asked and good thing I did, seeing as they are so high!
.
Thanks again, Erica

[Kimberly]

#1061737

Hello – TSI is probably the more common test between TSI, TBII and TRab. These 3 tests are all specific for Graves’ antibodies, whereas TPOab and TGab are not. TPOab and TGab are “markers” for autoimmune thyroid disease. They are very common in Hashimoto’s Thyroiditis, but a certain percentage of Graves’ patients (even those who do not have HT) test positive for them.

The treatments for Graves’ vs. HT are different, so it’s important to know if you are dealing with one or the other. (Or both, which is fairly rare, but not unheard of.) Hope you can get some answers soon!

[jmorris]

#1061738

i found out a few yrs ago that i had graves disease, due to lack of knowledge at that time, i had it for a long time before it was found. i had my thyroid removed in 2004, thinking that i would be better, only to find out i now have severe thyroid disease, this past yr i have noticed several symptoms, one of which is SEVERE MOOD SWINGS, I WILL BE LAUGHIN AN HAPPY ONE MINUTE THEN DOWN AN CRYIN IN A MATTER OF SECONDS, OR HAPPY TO MAD ANGRY IRRITABLE, I FEEL LIKE im on a constant roller coaster that i cant get off of, insomnia has become so regular i dont sleep much at all, but my angry outbursts loose of all self control, i think is the hardest for me, i snap so quick over such small things that would not bother the average person, paranoia is another thing. what makes me so angry that i lose all self control, i dont mean too im not a violent person at all, it is causing alot of problems in my marriage, havent been married a yr an he is ready to walk out because my mood swings are so severe an out of control…..I DESPERTLY NEED HELP IN UNDERSTANDING HOW TO PREVENT IT IF AT ALL POSSIABLE, OR AT LEAST A BETTER WAY TO DEAL WITH IT!!!!!!! PLEASE HELP!!!!!

[Author]

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