[syrenlulu]

#1059757

Hi everyone!

Let me preface this with some fun stuff. Both my 12-year-old brother and my dad have Graves’ Disease. My dad had radioactive iodine done and my brother is doing well on medication (he was diagnosed when he was 10). Anyway, my brother had crazy symptoms: sleepwalking, dramatic weight loss, bulging eyes (he made me cry the other morning when I went to give him his glasses and he said “Sissy, I don’t don’t like my eyes”). So here I am, thinking I skipped all the family curses, when my psychiatrist tells me she would like me to go to the lab after my appointment and have blood drawn for a thyroid test.

I think to myself “yeah lady, I know the symptoms, I’m good” but decide to humor her anyway. She thinks this is why I’ve lost so much weight in the last three months, and also why I can never sleep. She is explaining that it might be related to the hives I get on my neck. Whatever, I’ll go take ten minutes at the lab.

So my doctor calls me and lets me know my TSH is .04 and the reference range is 0.3 to 5.0. She just said “your thyroid is working a little hard. You should see an endocrinologist.”

I called my dad, who thinks it’s a fluke and is certain the endo will find nothing wrong with my T3 and T4 levels.

So, all I’m really wondering is: why are TSH tests run if they’re not what’s “most accurate” to an endo? I just thought I’d introduce myself while I’m at it

Thanks!

[Kimberly]

#1177308

Hello and welcome! We’re fellow patients here, not doctors, but if I had to guess, I’d say it the use of TSH as the primary screening tool has to do with costs and insurance.

Some labs now offer a test called a “TSH Cascade” where if TSH is abnormal, the additional T3/T4 testing is automatically done. Hopefully, this will catch on, as it saves the waiting period between tests and the additional stress.

This next round of testing will hopefully shed some light. You might also ask the doc about antibody testing (TSI, TRAb), especially with your family history.

Take care — and please check back to let us know how things turn out!

[syrenlulu]

#1177309

Thank you, Kimberly. I have written down the antibody test on my list of things to ask/tell the doctor!

[syrenlulu]

#1177310

Kimberly, you were right. They ran a cascade test and my doctor got the results today. She said they were not “hateful bad” but that I probably have the disease. My lab results should be available today or tomorrow and I will post all of my numbers.

I’m kind of scared now lol

[Kimberly]

#1177311

@syrenlulu – Hopefully, you have a follow up scheduled to go over the labs and discuss next steps. Will your doc be doing further testing (such as antibody testing) to get you a definitive diagnosis? Graves’ is the most common cause of hyperthyroidism, but there are other causes as well, and this will affect the treatment options that area available to you.

Also, just a reminder that you can post labs if you like, but on this forum, we are not allowed to give medical advice, which includes interpreting lab results.

Take care!

[syrenlulu]

#1177312

Hi Kimberly!

Just for fun, my Free T4 was 3.7 on a .6 to 1.7 reference scale.
They did not do a Total T4 because I’m on BC and apparently that can skew results.

I am seeing an endocrinologist on April 9 (my psychiatrist ordered this test after learning of my family history and my increased insomnia/anxiety and the weight loss). I’m going to ask for the antibody test; I looked at my brother’s paperwork and he never had it done so I’m going to just ask for it.

The weird thing is, if my thyroid is so overactive, I cannot understand why I’m overweight. And not like 5 pounds overweight, like 20. I know you’re not a doctor and you legally can’t give medical advice (I’m a pre-law student, I know the feeling) but have you ever met an overweight person with an over-active thyroid? Seems kinda weird but I’m sure I’m not the only person ever

[snelsen]

#1177313

Hi syrenlulu,
ya have me puzzled! Your first post said you had LOST a ton of weight in the past three months, and that is one reason your doc suspected Graves’.

So the puzzle part comes in, when in your last post, you said you had gained a lot of weight. There are many reasons for gaining weight, and not everyone who is hyper, loses weight, but in my own experience, and that of most people, my hunger could not be appeased, and I ate like a trucker, and continued to lose weight. But I was eating almost twice as much as I usually ate when I was really hyper. And was hot. And had a tremor. And a fast heart rate. And was a crazy person.

Did you get your labs today? What is your heart rate? BP? Just wondering.
Shirley

[syrenlulu]

#1177314

I have lost weight in the past few months. I have always been overweight, though. Since high school I’ve been chubby. What I mean is, could I have just acquired this condition? It would not make sense to me if I was a thick girl with this condition forever. Sorry for the confusion and I hope this clears it up!

BP: 140/82 (Bad. Womp.)
Heart rate: 100 BPM, resting.

And yes I feel almost insatiable! In the morning I could eat 10 cups of oatmeal and still be hungry.

Thanks for the reply!!

[snelsen]

#1177315

Oh, I get it. It seems to me that you just recently, in the past few 1-3 months, probably began to develop Graves’ I’m just another Graves’ person, but it helps to look at yourself 1/2 year ago, or so and see the differences.

Yep-your BP a bit high, not bad. YOur heart rate is pretty darn rapid. I imagine you will be prescribed a beta blocker and and ATD (do know what these meds are?) Of course, when you see you endo, try to learn as much as you can about YOUR Graves’, and the meds.

Re your brother. I suggest that he see a good neuro-opthalmologist to have a baseline eye exam. I hope that he does not have TED, but it is possible that he might have TED. Of course, wearing glasses is unrelated, but you know that. It is darn tough to be 12 when you are just a normal kid. He sounds like a great kid.
Shirley

[syrenlulu]

#1177316

Hi Shirley,

He really is an awesome kid, thank you . I tell him to remember that not a lot of people have crystal blue eyes, so even if one sticks out a little, his eyes are still handsome and awesome.

I know what a beta blocker is; though I have not the slightest idea what ATD is.

I’m prepared to bombard the Endo with questions, especially related to medication. I don’t know if any of the thyroid medications could interfere with my mood stabilizers but I will be giving her a printed list of all my medications and I’m going to ask her to analyze each one lol!

[Kimberly]

#1177317

Sounds like you are going into your appointment prepared!

ATDs = Anti-Thyroid Drugs. The main one prescribed in the U.S. is Tapazole (generic version is methimazole). There is another option called PTU, but it has an higher risk of liver side effects. These drugs start working right away to block production of *new* thyroid hormone, but you might continue to have symptoms until your body burns off its existing stores of excess thyroid hormone, which can typically take a few weeks.

If your blood pressure and heat rate continue to be a concern, you might talk to your general practitioner about whether beta blockers might work for you prior to the 4/9 appointment. (Patients with certain medical conditions, such as asthma, are advised *not* to take these drugs). Beta Blockers don’t cure the hyperthyroidism, but they can provide some symptom relief until the meds fully take effect.

Take care!

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