Hi--I just discovered I have hyperthyroidism. TSH less than .01 L with a ref. range of .45-3.98, free T4 3.14, ref. .88-1.5, free T3 8.6, ref. 2-4.4.
I haven't been able to learn online just how high this is--does anyone know? Is it important anyway? Second, I've only seen my primary doctor so far & he's ordered additionally a scan (radio iodine, I think. take a pill then x-ray, 24 hours another scan). And once that's done I'm to take Methimazole 10 mg/day until I can see an endocrinologist--in late July! (unless I can get a cancellation--I'm in Maine & specialists are a rare breed). Finally, I've read about certain antibody tests that are important for Graves diagnosis & wondering if I'm going to wish I had gotten these before seeing the Endo. I'm especially anxious to get this diagnosis & treatment settled because I'm planning to spend 4 months in Beijing starting in late August. I have not idea how this is going to work.
Thanks, any & everyone who can help.
Cara
Sorry for the reason you're here but, glad you found us.
Graves' is the most common cause of hyperthyroidism. You will note from my signature that I have Graves' and went into remission. Yes, I joined the 20% of Graves' patients that go hypo after remission. However, just like the hyperthyroidism, it can be temporary but it requires treatment.
I have been engaging in ongoing research since my diagnosis and am happy to share whatever may be of interest to you.
You really don't need the uptake scan unless you're planning on having radioactive iodine ablation (destruction) of your thyroid. The uptake scan is inconclusive for diagnosis and became obsolete once antibody testing became available.
So, rather than possibly exposing yourself to unnecessary radiation (which has the potential to worsen your hyperthyroidism and put you at risk for thyroid storm), I suggest you ask your GP to do a simple TSI (thyroid stimulating immunoglobulin) blood test.
The TSI test is the only definitive test to confirm or rule out Graves'.
Your current level of hyperthyroidism would be considered mild so, a 10mg methimazole starting dose is quite appropriate.
I'm not sure if your doctor told you to do this or not but, it's best if you divide that dose into two/day....5mg in the AM and 5mg approx. 12 hrs. later.
Methimazole has a 6-8 hr. half-life which means half of the dose is used up within 6-8 hrs and the full dose within 12-16 hrs. This means that you won't have meds in your system for 8-12 hrs. This doesn't feel well nor does it bode best for healing.
Please know that to be properly medicated for hyperthyroidism, the patient needs to take the lowest possible dose that will maintain the FreeT4 level above mid-range and preferably closer to the high end of the range, regardless of TSH.
Your starting dose will most likely get your FreeT4 level back into range within 6-8 wks. I hope your doctor will be checking your levels no later than that.
Moving forward from there, if your FreeT4 level is indeed back into range, your dose will most likely be halved....and you'll continue to get labs every 4-6 wks. along with dose reductions to maintain that optimal FreeT4 level.
If your doctor does otherwise, there's a chance that he/she is like many: clueless about thyroid disease.
But, all is not lost - it's possible to heal from hyperthyroidism/Graves' if you achieve a basic understanding of your disease and its treatments and are proactive with your care.
There's a really informative (and free) online course called "Hyperthyroid Disorders" and it's written by a Graves' expert. Medical resources are quoted throughout the course. It's comprised of 8 different "lessons" which are really just different chapters of interest.
The section on Anti-thyroid drugs explains much of what I've shared here.
Hopefully, you'll be able to get blood work while in Bejing and somehow either your doctor or a doctor there will be able to coordinate your care.
Please visit back here along your journey with any questions or concerns.
It's entirely possible to feel well while having thyroid disease but, it requires a knowledgeable, proactive patient working with a thyroid-savvy doctor.
Thank you, Sammy. I was hoping, after reading your many posts, to hear from you. It's upsetting to me that my doctor didn't order a TSI if it's THE test to rule out Graves & thus what the EndoDoc will want to know. I'm studying my Hematology report to see if I could have missed it, but I'm not seeing it (lots of abbreviations, but no TSI). Meanwhile he has ordered an uptake scan--sigh. Who knows? Maybe the Chinese have a great approach?!
Thanks again. I'll write again. All best, Cara
Unfortunately, many doctors just aren't familiar with diagnosing/treating any type of autoimmune disease and most cases of thyroid disease are autoimmune in nature.
My hyperthyroidism was discovered during my annual physical. My PCP sent me for an ultrasound and told me she'd have me get a scan when "you swallow a little pill and they look at your thyroid".
As soon as I heard "scan", I knew there was a good chance radiation was involved. I hit the internet and found my first-ever thyroid forum (one devoted to Graves') and they pointed me in the right direction for research.
I soon knew that I would decline the scan and instead insist on the TSI test. My very first endo was annoyed with this but, he could not deny that the TSI test was the only definitive test to confirm/rule out Graves'. He pressured me to have RAI but, I insisted on anti-thyroid drugs. He overmedicated me and became my former endo after 6 months.
You have the legal right to decide on treatment which also includes whether or not you have certain tests.
As I mentioned earlier, people who achieve wellness are proactive with their care....and it starts at the beginning.
I think the Chinese are very diligent with their testing but, I can't remember how things are in regards to treatment protocol.
Isn't if awful, though, that we amateurs have to get in there & direct the supposed experts?! I guess I'll have to get over this squeamishness, but it's unpleasant. I'll request the TSI & check out the online course you recommended.
Did you see the cover story of this week's Time magazine? We have to work together to overhaul this medical system!
Many thanks again. Cara
