[Lisa27]

#1060672

Hello everyone! My name is Lisa and I am not 100 % sure I have been diagnosed with Graves. I had TSH come back low then 2 months later it went lower and my PCP checked free T4 at that time which was low. Then I asked to be sent to a specialty endocrine clinic at one of the top Universities as my number’s weren’t typical. So labs rechecked adding in free T 3 and ultrasound. TSH lower at .05, free T4 low normal and free T3 high normal. Ultrasound didn’t pick up any major nodules although there are a few really small from what O gather and yhyroid is mildly enlarged with an enlarged isthmus. So, they started thinking graves and i had the iodine uptake 24 hour test that just measured the iodone uptake no pictures. This was normal at 24% at 24 hours. But, also had the injection that they took pictures which showed moderately diffusely scattered uptale consistent with Graves Disease. So, he did more blood work along with the TSI to confirm Graves and start me on lpw dose of methimazole. I just got the TSI results today on my patient portal that says my TSI is 1.0 with range <1.3. So, I don't know if that means I don't have Graves or not as I have read conflicting info. I do have ot if symptoms minus weight loss.

[Kimberly]

#1184012

Hello and welcome – hopefully, you have a followup appointment with your doctor very soon to see how you are doing on the methimazole. There can be many issues that can cause thyroid levels to go out of range, including Graves’ disease, different forms of thyroiditis, nodules, and pituitary issues. Even illnesses that are not directly thyroid-related can affect levels. Getting a correct diagnosis is critical – but having T4 that is low normal makes the diagnosis a little trickier. Usually T3/T4 will be out of range in the same direction.

Doctors can still make a diagnosis of Graves’ if TSI is below the cutoff, as there is some gray area with the upper limit. It’s set at a point to get as many *correct* diagnoses of Graves’ as possible without *mistakenly* giving someone a diagnosis of Graves’.

Take care – and keep us posted!

[Lisa27]

#1184014

Thank you. I have not started taking methimazole as of yet. My doctor wanted to wait to get results of TSI and CBC as my liver enzymes have been a little elevated since May or June, about the same time my TSH started going low. I have never had thyroid problems before.

TSI Lab from Oct
TSI=1.0 ref <1.3

My labs from Sept when I finally saw endocrinology were

TSH=.05 ml/UL ref 0.30-5.50 ml/Ul
Free T4= 1.03 ng/dL ref 0.76-1.70 ng/dL
Free T3= 4.0pg/mL ref 1.9-3.9- pg/mL
T3 Total = 172 ng/dL ref 80-175 ng/dL

Tc-99m injection and scan
Impression: Diffusely moderately increased radiotracer uptake within the thyroid gland consistent with Graves disease.

U/S
Impression – Mildly prominent thyroid gland with heterogenous parenchymal echotexture.

Previously in July (no other tests done, I was sent to Endocrinology)

TSH=.31
Free T4=.81

My endo really believe I have Graves, but I am waiting to talk to him since having the TSI done. I am hoping he will call me today as he has the results now. He did the CBC to make sure I could start methimazole due to my liver enzymes which are ALT=81 and AST=53

I don’t know if I will have more tests done or if the Graves will be confirmed. I see conflicting messages surrounding the TSI numbers.

Thank you for your support. I am trying to sort all of this out. I have a child with special health care needs and am a breast cancer survivor, so I have a lot of knowledge in regards to medical issues and terminology.

[Lisa27]

#1184015

I spoke to my doctor today who confirmed the Graves Diseade diagnosis. He is starting me on 10 mg of methimazole, I believe just once a day. Any words of wisdom? I am alreafy on a beta blocker since way before this for my bp. I go to see a Graves Opthamologist on the 9th.

[Kimberly]

#1184016

Hello – I’m a fellow patient, not a doc, but with your low T4, I would be very cautious to watch out for hypo symptoms and call your doc’s office ASAP if you feel them coming on. Every patient is different, but common symptoms of hypo can include fatigue, joint pain, unexplained weight gain, constipation, dry skin, cold intolerance, and slow pulse.

Methimazole can be taken just once a day for convenience, but some docs will have their patients split up the doses throughout the day. You can take it with or without food, but make sure you are doing one or the other consistently.

Keep us posted!

[Lisa27]

#1184017

Hopefully, I will know when that happens as I have alot of thise same symptoms now with heart palpitations and high resting heart rate and brain fog. I haven’t lost any weight unfortunately and can’t afford to put on more. it happen quick due to my T4 being low? Also, will he lower dose? Won’t methimazole bring T3 and and T4 down? I am praying I do not have eye disease. Does anyone else have low T4?

Thank you!

[Kimberly]

#1184018

Hello – Yes, the methimazole brings down both T4 and T3. Having T4 is quite unusual with Graves’, so that’s why I mentioned being on alert to see if symptoms of hypo appear.

Weight issues are very individual. Some patients have no issues, while others (like me) do struggle with weight gain. The priority right now, though, needs to be getting your levels stabilized so that you can get back on the road to good health.

The eye disease is unpredictable, but the most important risk factor that you can control is not smoking and avoiding exposure to second-hand smoke. Being either hyper or hypo can also aggravate eye issues, so that’s another reason it’s important to get levels stabilized.

[Mforsberg21]

#1184019

http://www.ncbi.nlm.nih.gov/m/pubmed/10646655/ I see your TSI isn’t quite positive. I have seen other studies done that support these findings.

I’m just a patient definitely not a doctor but your T3 is very slightly out of the range. Your T4 is low end of normal and TSH suppressed but not severely at least compared to mine .005. I have sub clinical hyperthyroidism. Which is to say my T4 and T3 normal range but TSH suppressed. My T4 mid upper though.

Your TSI is almost positive. You have heart palpitations and tachycardia. What about trembling, heat intolerance and sweating?

Have you had any issues with your eyes in the past? Excessive tearing, proptosis, redness or swelling? Maybe so slight you thought allergies?

Have you seen a cardiologist? I wish someone had asked me these questions. Just saying. Second opinions are never a bad thing. I am on my third Endo.

[Lisa27]

#1184020

I am just starting methimazole 10 mg this week sometime. I have an appointment with a Graves Disease Opthamologist at University of Michigan. My endo is also at u of M. My TSH was off back in May at my Promary Care doctor. He referred me to endo here in Lansing and I asked to go to the specialty endocrinology clinic at U if M. I read enough stories to know i needed to go to best place. I need to still see cardiologists.

[Lisa27]

#1184021

I am just starting methimazole 10 mg this week sometime. I have an appointment with a Graves Disease Opthamologist at University of Michigan. My endo is also at u of M. My TSH was off back in May at my Promary Care doctor. He referred me to endo here in Lansing and I asked to go to the specialty endocrinology clinic at U if M. I read enough stories to know i needed to go to best place. I need to still see cardiologists.

[Mforsberg21]

#1184022

I am just a patient. I have to abide by the rules of this forum. I can only say many things can cause suppressed TSH. With a T4 as low as yours and being almost positive for TSI I would worry about going hypo. You need to do what you think is best for your health.

I had sub clinical hyperthyroidism. I took 20mg Methimizole and 2-3 weeks later I had a horrible TED flare up. I went back to the endo and he doubled my dose. My eyes almost popped out of my head. However, I was experiencing slight symptoms of TED on and off for several years prior. Unfortunately the endo did no antibody testing at all. My TSH was heavily suppressed and T4 mid high range of normal. I knew nothing about Graves before taking the medication.

You are going to one of the best university’s in the world for TED. I am just telling my story. If you are negative for TPOab and positive for TSI you are very likely to have eye problems from most research I have read.

There are also many studies showing the relationship between Mitral valve prolapse and autoimmune thyroid dysfunction. Mainly Graves. Google mitral valve prolapse and Graves Disease. The symptoms of both are very similar.

Good luck and I wish you well.

[Lisa27]

#1184023

I am wondering if there are other questions I should ask my doctor before starting methimazole? Are there other treatment options or is this something I should wait and see?

[Liz1967]

#1184024

Lisa, I travel from Northern Kentucky to see the eye docs at Kellogg Eye at the University of Michigan. I have had two bilateral eye surgeries there so far and scheduled for last in February. The doctors I see specialize in Graves and have lots of experience. You are in great hands. They do a lot of research and are up to date on latest treatments and studies. I had a total thyroidectomy after messing around with methimazole for six painful months and I have never regretted it. You might ask about thyroidectomy in relation to the eye disease. Good luck! You are lucky to be so close to these specialists.

[Lisa27]

#1184025

Ok so I just left one if the top Graves Eye Opthamogist and he says I have an extremely complex medical picture and he is not convinced I have Graves Disease. My TSI was normal, and he said if I were to start methimazole mow I will become hypo rapidly as my free T4 is 1.1, but free t3 is 4.0 high and TSH low. So, I am going to see a top thyroid Graves endocrinologist for a second opinion Dec.2. I am now incredibly confused. He is not quite sure whats going on.

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