[Shadoe]

#1058964

Hi everyone, new here and I hope to find some support and answers.

My TSH and T4Free numbers have been whacky.
My med dr. says my Graves is out of control.

I say it’s not because I feel fine.

When I was dx’d in November 2007 my T4 free was 4.05 TSH was 0.01

I go to the VA hospital I am a Veteran these are the only 2 numbers they use to dx.

My levels in October of 2011 were T4 free 1.10 TSH was 1.10

In March of this year my numbers were T4 free 1.17 TSH 0.10

In April of this year, they did a non fasting lab and I wasn’t thinking I took my PTU and labs were drawn 1.5-2 hours later and the numbers were
T4 free 1.10 and TSH was down to 0.08.

I am only taking 50 mg of PTU 3 days a week, and have been on this dose for almost 4 years.

My question is am I going hypo, or is my graves out of control in any way?

Also aren’t there suppose to be more test done besides the 2 the VA uses to dx Grave’s disease?

Any help would be appreciated.

[Bobbi]

#1171246

1) There is no way for us to know whether those lab results are normal are not. Every lab has its own method of testing for the various substances, and as a result they have their own standards of normal and abnormal. k It will be listed on the report itself.

2) Even if they are normal: The ONLY people whose advice you should be accepting about lab interpretations are fully qualified doctors. If you do not trust your own doctors, you need to find another doctor, an endocrinologist preferably, to consult. Yes, it would cost you some money most likely. But a second opinion from someone qualified is the best choice. Interpretations from amateurs online is your worst choice.

3) For ongoing cases of Graves, it is not at all unusual to use TSH readings alone. Free T4 has never been a part of my lab results since the early days of my journey with Graves.

[Kimberly]

#1171247

Hello – Just a quick note that TSH is tested in conjunction with Free T4 for patients who are on Anti-Thyroid Drugs like PTU. Many offices will also test T3, although there is some controversy as to whether Free T3 or Total T3 is the better test.

[Darcy43]

#1171248

Thanks Kimberly.

I taken ATDs and Free T4 are a part of my labs, along with T3 and TSH. Yes everyone’s lab interpretation will be deemed different, however, based on what my endocronologist and primary care physician advised me, they do use certain levels as a barameter to determine if you are either getting better or worse. So yes, check with a doctor, who specializes in auto immune diseases and ask what your barameter is what levels should you strive for in order to be deems in a safe state. This isn’t really cured, but it is treatable and you can live with it…one day at a time.

Hang in there.

I am not an expert but I have Graves and I am a medical researcher/healthcare litigation certified paralegal (24 years) so I have some knowledge and understnading of medicine, biology, along with the background of being around my physician uncle and nurses (mom and sis) all my life. Btw my mom has diabetes (an auto immune disease where antibodies attack the pancreas. My grandmother was hypER. She had her thyroid removed (maternal grandmother). My cousin has her thyroid removed due to being HypER. Now she is HyPO and my hero. She endures a lot and helps hold my hand when it gets rough. Knowledge is power. Do your research, stay with a supportive group (such as this one, really has helped my nerves in the last week) and trust yourself.

Good luck.

[emmtee]

#1171249

Shadoe –

Yes, you can feel fine and still have Graves’ that is out of control.

When I started on my first dose of methimazole, I felt fine after a few weeks, but my blood test results at 4 weeks were still off. It took another 3 months and 2 dosage increases (I’m now taking 3 times my initial dose) before my T-3 and T-4 were finally in the normal range. I still feel fine, and now I have the added reassurance from blood tests that my Graves’ is under control.

I’ve had a very stressful few weeks – so stressful that my tremors came back for a few days even on my full dose of meds. I don’t want to even think of what my body would have done if my thyroid hormones weren’t in check.

Regarding the other tests you were curious about, you might want to ask your doctor why he hasn’t tested your T-3. My T-4 fell into the normal range before my T-3, so if my endo hadn’t tested for T-3, I wouldn’t have had the 2nd dosage increase.

You may have also heard about the antibody test. I haven’t had it. It wasn’t needed in my case because my Graves diagnosis was made based on my thyroid uptake and scan. Of course, I was just diagnosed last year. You’ve been dealing with this a lot longer than I, so YMMV.

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