I developed thyroid eye disease because of graves. I am under the care of a neuro opthomalogist. My eyes slightly bulge out, they get dry, irritated and blood shot red. The thing that has helped me is the eye oniment, I use it twice a day.
I also had RAI & then surgery. 18yrs ago.
Is the T3, free or total? If the lab report doesn't specify FREE, or FT3, then it's total, which is obsolete and of little value.
blood work from June 2012:
TEST RANGE RESULTS
T3 4.0 – 7.4 pmol/L 8.1
sTSH 0.27 – 4.2 mU/L .02
FREE T4 10 – 25 pmol/L 19.96
No meds, doc wants to wait to see if levels will drop on their own. No referrals, doc wants to see biopsy reports first. Unfortunately he is leaving on vacation for one and half weeks. Will try to get biopsy reports from clinic and see other doctor.
You must be confused about the dates and information contained in this post. If you'll read my post on May 31, you'll see my explanation of the antibody tests. In that post, I specifically, told SerenitySeeker that TSI is the definitive test for Graves. Thyroid Peroxidase Antibodies (TPOab) is one of the tests used to confirm/rule out Hashimoto's; those with Graves may have those antibodies, but without the TSI, Graves can't be diagnosed. Rarely, a person will have both Hashimoto's and Graves.
As for it being a month since anyone posted - the thread is not a month old and both myself and Serenityseeker commented on it just last night.
It doesn't look as though anyone answered your question regarding tests for Grave's. This is usually done with an initial blood test looking at antibody levels (graves is an immune issue), normally these will be thyroid pyroxidase antibody tests. Normal/acceptable values for this are usually anything <35.
I hope this helps. I also noticed that there has been nearly a month since a post has been added here, pls give us an update on how you are doing and any changes
Synthroid is a thyroid replacement hormone, which would be used after RAI, such as your mother had.
Yes, tapazole it for hyperthyroid, to suppress thyroid function, and is usually a "bandaid", but is often used on a temporary basis to control thyroid over production until a permanent solution is decided upon. Sometimes, it's used on a more permanent basis as well.
If you have your thyroid removed, tapazole will not be an acceptable treatment. You will need thyroid replacement med such as synthroid (which your mother takes) or generic levo - both of which are T4 only medications. Some people, like me, need an added T3 component, which I add to my levo, in the form of a generic T3-only med. Or you can go with a desiccated replacement medication, such as ERFA, which is derived from porcine (pig) thyroid and contains both T3 and T4. Pigs produce much more T3 than humans do, so the desiccated med contains considerably more T3 than your body would normally produce. Some people need this; for others it's too much. There are drawbacks to all types of thyroid replacement medications......
Many of us, who are hypo, whether from thyroid removal or from Hashimoto's thyroiditis (which destroys the thyroid), have to go on beta blockers in order to tolerate the replacement medication. You might find yourself staying on them, even if you get your thyroid removed. I was lucky enough to be able to 1/2 my dose, but can't get to a point where I can stop it.
My mom also had thyroid problems 40 years ago, they did the radioactive iodine to kill her thyroid. She has been on synthroid for all these years as does fine. So tapazole is for hyperthyroid, right? It just seems to me that taking medication for hyper is just a bandaid solution, as the whole thyroid gland is the problem. So if thryoid is removed, what is a good thyroid replacement medication.
Beta blockers are certainly doing there job with my heartrate. My family doctor says that is what is making me weak. But the more info i gather on multinodular thyroid with hyperfunctioning nodules, it probably is the thyroid. I do know that i will not be taken off the beta blockers until treatment is decided and effective.
If nodules are growing that fast, I'd agree that thyroid removal would be the way to go. In that event, you might want to start discussing with your doctor other medications, since tapazole is an anti-thyroid medication. In the event of removal, you would then need thyroid replacement medication.
Strange that the beta blockers make you weak. Are you sure it isn't the thyroid issue doing that, instead?
My doctor and i discussed possible use of tapazole. The beta blockers are making me very weak. We have not discussed removing the thyroid in length, but he indicated that after the first ultrasound. I see doctor on tuesday next week to review bloodwork, biopsy results probably not back for seven days. The calgary doctor who did the biopsies today indicated that she could have spent the whole day doing biopsies on all the nodules on my thyroid gland. With that being said and the fact that the two right side nodules have grown since may 15, i think surgery maybe a good option. I have to consider that ongoing health problems, repeated 3 month ultrasounds and biopies on any nodules greater than 2 cm (standard that the calgary doctor indicated indicated today) may negate any private health insurance that i would need to purchase when we travel to United States each winter.
What medication do you anticipate starting (thyroid replacement?) and what's so horrible about the beta blocker?
Did they mention removing your thyroid?
When do see your doctor again? I'm happy to know that you might finally reach a solution. Do keep us posted.
Just got back from city. Doctor who did FNAs says my thyroid is a mess, nodules everywhere. Multinodular Thryroid confirmed, .....usually noncancerous. Left lobe cystic solid mass still same size and biopsied. top right nodule went from 2.3 to 2.5, lower right nodule went from 1.7 to 2.5, both biopsied. Think I will be looking at removal of thyroid. bloodwork results on tuesday...maybe start medication and get off these horrible beta blockers. biopsy reports due in end of next week. moving closer to the solution.
Also, repeat thyroid bloodwork ordered.
Scanning showed there is a dominant nodule in the midportion of the right thyroid lobe. Corresponding to this nodule there is a focal area of fairly intense radiotracer activity on the scintigraphic evaluation. Findings probably indicate a hyperfunctioning nodule. There is a patchy and heterogeneous distribution of the radiotracer throughout the remainder of the gland. The uptake pattern would be considered typical for multinodular goiter. Much of the radiotracer is probably sequestered by the dominant nodule on the right. Imaging findings are not overtly suspicious, although ongoing ultrasound surveillance in 3 – 6 months time could be considered to ensure stability of the morphologic appearance of the thyroid gland.
Going to city for FNA on the dominant nodule on right lobe on Friday. Don't know what all of this means. One of my concerns is the left lobe containing a cystic and solid mass measuring 2 cm maximal. I think it should have biopsy as well. What are your thoughts out there in thyroid land?
Thinking of you and this journey :)
other than beta blockers to slow my heart rate, i have not started on treatment. but have an appointment with my physician next tuesday to discuss test results of the radioactive iodine scan, care plan, referral to endo, and ent (if required). I have a good friend who is a registered nurse and she is talking with health care professionals to gather info on endo and ent specialists in Calgary, AB (where i will have to go for treatment).
i know from personal experience that doctors are only human, they have to earn my trust, and i know that i have to be my own advocate on any health matter.
Please keep us informed of your situation/treatment and how you are doing.
Hi:
I don't know if your situation is resolved, but reading about your symptoms, I couldn't help comparing it to the "bulging eyes" that are a symptom of hyperthyroidism (remember Barbara Bush?) It's a symptom of the disorder and once your levels are corrected, it should stabilize. And yes, you should be seeing an endocrinologist and opthamalogist (sp). It's true that we really have to be our own advocates, and it pays to shop around. I remember my mother in law, who thought her doctor's word was law. He put her on some really strong meds for arthritis and forgot all about her. She was in her 80s when she went into the ER with bleeding ulcers and had lost a lot of blood. She never questioned the meds, just kept refilling the script. The fact is, all doctors are not equal. Good luck to you!
well, did my radioactive iodine thyroid scan. have followup with my doc on jun 19, here is hoping we get the answers so we can start treatment.
Just because a doctor recommends someone, doesn't mean they will be good.
Might be a good idea to give some of them a call and try to talk to a nurse, to find out what tests are done routinely, what meds the doctor is willing to prescribe and whether or not s/he's willing to treat by symptoms, not just labs. That way, you'd be able to tell your pcp, which endo/ENT you want to be referred to.
sorry about the caps, lol. did a run through the list endos and ent nearby, have a few names that i will throw out to my doctor see what he thinks
I'm sure you didn't intend to, but writing in all caps indicates yelling.
I think you're wise in asking for a referral, but do be aware that not all thyroid specialists are good thyroid doctors. You have to be sure the specialist is willing to test adequately (TSH, FT3 and FT4 "every" time you test), and is open to treatment with whatever type of medication available, including the addition of T3 med if needed.
Pre-interviewing a doctor, usually through a nurse, can be a good way to find out how they treat patients.
HE HAS DELAYED THYROID MEDS UNTIL NUCLEAR IMAGING IS COMPLETED. GOING TO BOOK AN APPOINTMENT WITH HIM RE OTHER TESTS AND REFERRAL TO THYROID SPECIALIST.
TPO Antibody is Thyroid Peroxidase Antibodies.... Peroxidase is an enzyme from which thyroid hormones are produced. Rather than attacking foreign substances, antibodies attack thyroid proteins. There's another antibody test that should have been done, actually, 2 more.... one is Thyroglobulin Antibodies (TGab) and Thyroid Stimulating Immunoglogulins (TSI). TPOab and TGab are used to diagnose Hashimoto's Thyroiditis, while TSI is the definitive test for Graves Disease, though about 75% of Graves patients will have TPOab, also. A small percentage of those with Hashimoto's will not have any antibodies.
I don't have a clue as to what the "Antithyroid" test is and/or why it would have the exact results and range as the TPOab ...... looks like a reporting error!!
Is the nuclear imaging the reason your doctor hasn't put on anti-thyroid med?
Have you talked to your doctor about the increasing symptoms? You should also check on that Antithyroid test to see what it is and ask for the TGab and TSI. When diagnosing Hashimoto's, both TPOab and TGab, should be done, because some people have one or the other, while some have both. By only testing only the TPOab, Hashimoto's could still be undiagnosed.