[emmtee]

in reply to: After a long absence, back again! #1185108

My surgeon gave me a copy of her report, and in the hospital she showed me photos of my thyroid. I was really interested in them, so she she put several of them on a disk for me. She wanted to use one of the photos for a paper she was going to write. Apparently I had perfectly formed “Zukerkandl’s tubercles”. (It kind of an appendage on the side of the thyroid that not everyone has, or some people only have them on one side).

Good luck with your pathology. I imagine that this is a really unusual case – a thyroidectomy after RAI, so it’s good that they’re checking everything out thoroughly.

[emmtee]

in reply to: After a long absence, back again! #1185105

I’m glad you’re doing well after your surgery. I’ve always wondered what happened to the thyroid after RAI. It didn’t seem logical that it would just “disappear.” So it just dies, and scar tissue is left then?

It sounds like your incision is about the same length as mine. I took a photo of a tape measure taped to my neck, so I’d have a record. Mine’s a little under 3 1/2 inches end to end, but it isn’t straight. It mostly falls within the crease in the skin, but it misses the mark a bit on one end. I think over time, my skin will form a new crease to match my scar.

I didn’t have a drainage tube for my thyroidectomy, but I had a drain years ago when I developed an abscess following an abdominal surgery. It really is shocking how long the tube is. Mine wasn’t flat, though. I remember it was curled up into a spiral, and that’s what kept it from falling out.

My neck was a little bruised around my incision for a week or so following my surgery (also covered by steri-strips) so I didn’t take a lot of photos, and now I wish I had. It would have been nice to have more photos to look back on to see how much progress I’ve made in healing.

[emmtee]

in reply to: After a long absence, back again! #1185101

I’m glad you were able to meet with your surgeon. It sounds like you’re getting good care.

My surgeon used surgical glue on the incision, and then the wound was covered with steri-strips (placed horizontally in my case, although I’ve seen photos in which they’re placed vertically). I was told that I could shower with the steri-strips, but to just let the water run over them and not disturb them – that they’d fall off on their own. Mine held so well that they were still in place when I met with my surgeon for my two-weeks post-op appointment, and she had to remove them.

Best of luck to you next week.

Marci

[emmtee]

in reply to: After a long absence, back again! #1185098

Thyroglobulin is a cancer marker, so I think they’d only order that test if they suspected something. If your lab is Quest, you probably won’t have a problem. LabCorp was the one that messed up my test. My doctor’s office is partly to blame because they kept giving me the Sonora Quest form which didn’t have the same codes, but LabCorp always accepted it and said it was fine. Then they just guessed about which test the doctor wanted. After my surgery my endo ordered this test three more times and they did the wrong test every time. After the last time she was able to catch them while they still had my blood sample and got them to run the right one. So a year and a half after my surgery, I finally got the test done. (Even though my tumor was benign, my surgeon still wants me to get this test done annually because my tumor was so very large and there’s a slim chance that the pathologists missed something).

[emmtee]

in reply to: Thyroidectomy after 7 years of resistance #1185073

Congratulations on your thyroidectomy. I was so happy to get mine. I was kind of the opposite of you – I’d actually chosen TT when I was first diagnosed, but had issues (finding a surgeon, becoming euthyroid) and just got comfortable on the methimazole and stuck with it for four years. I only got my TT after developing a suspicious nodule. I was so happy to have my thyroid removed. Afterward, it was such a relief. When I originally contemplated thyroidectomy 4 years prior, I was worried about the scar, but after it was over, I found myself taking every opportunity to admire in the mirror. It reminds me that I really am so fortunate to have had a great surgeon and a benign diagnosis.

[emmtee]

in reply to: After a long absence, back again! #1185096

I wouldn’t worry too much about the parathyroids since it sounds like they’ll be focusing on your left side and won’t be bothering your right side much. My surgeon told me that even though we have 4 parathyroids, we can actually get by with only one of them, or even one half. Most people have no problem at all, but depending on where they’re positioned, it can be hard to avoid them. I’ve heard of them actually being embedded in the thyroid tissue, but again, this is rare. When I had my TT, I had to sign off on a “possible parathyroidectomy” in addition to my TT just in case it was necessary, but it wasn’t.

You mentioned having an ultrasound. Have you had a FNA (Fine Needle Aspiration, or Biopsy)? I had one and the results were inconclusive, so it really wasn’t all that helpful in my case.

I had a goiter and a nodule that made me feel like I was choking when I bent my head down – like when I was styling my hair or lying in bed with too many pillows. My nodule was pressing on my trachea, pushing it off center and was also growing down past my collar bone. When the pathologists examined the tumor it measured 7 cm, but it was benign.

I only had 10 days from my appointment with my surgeon until my surgery, and there was so much to do. It’s good that you have a little more time. Did they order a thyroglobulin test? I wouldn’t put that off in case your lab screws up like mine did. (They did the wrong test – thyroglobulin antibodies, so now I don’t have my pre-TT levels to compare later tests to).

Good luck with your surgery. I hope everything goes as well as mine did and that the findings are also benign.

[emmtee]

in reply to: Tests Are Normal but I Don’t Feel It #1185053

Have you had your Vitamin D levels checked lately? So many people are low. My latest test actually came back in the very low end of the normal range, but my endo still wants me to supplement so it will be “optimal.” Fatigue is one of the symptoms of low D. When I first asked my endo to check my D levels, that was her justification for ordering the test.

I was diagnosed with Graves’ in 2011 and I’ve pretty much forgotten what it’s like to not be tired. I had another health issue for a year before (when I was also experiencing Graves’ symptoms) which weakened me a lot. I lost 75 lbs and gained back 95 lbs, but not in the same places. I now carry more weight in my belly, which is hard on my back. I spend way too much time lying in bed, watching TV. I know I’d feel better and stronger if I got some exercise, but knowing isn’t doing. I tend to blame myself for my condition and I’d assume full responsibility for feeling like crap if it weren’t for one thing…

In December of 2015, I actually felt good. That was the month after my thyroidectomy and I was so happy to have that thing out of me and finally know that it was benign. Christmas was in the air, and I had too much to do to lie in bed. It was also the only time in nearly 6 years that I’ve had a normal TSH (2.39). There was a period when I went hypo on methimazole early in my diagnosis, but all the time when I was considered euthyroid on methimazole (judging by my T4 and T3), my TSH averaged around .075.

My endo is more concerned with my TSH these days and is focused on bringing it up. I think the sudden shift has to do with my increased age. I just hope we can increase my TSH without lowering my T4 and T3 too much. In my last test, it was .098 – a whopping .007 increase from seven months previously when she lowered my levo dosage. She lowered it again in May, so I’m due for more labs soon.

[emmtee]

in reply to: The thyroid, the eyes and the gut #1185025

Interesting. Around the same time that I first started experiencing Graves’ symptoms (tremors) I was also having severe intestinal problems. I was seriously ill and needed surgery. I think my Graves’ contributed to my slow recovery while my Graves’ symptoms were blamed on my other illness. I was losing tons of weight and no one ever thought to check my thyroid levels. 😡

[emmtee]

in reply to: Off of ATD – How long can Graves remission last? #1184889

I had my TT done a year ago. I was doing okay on methimazole and would have stayed on it longer, but my nodule was quite large and suspicious for cancer. Fortunately, it was benign and my surgery went very well. I had a really good surgeon and no complications.

I had a little bit of an eye issue over the summer when I was hyperthyroid for a while. (I needed my dosage of levothyroxine adjusted). I was having a lot of tearing and redness, and even a little pain, particularly in the left eye. After my T4 became normal again, it gradually went away and is completely gone now. The only other eye issue I’ve had was some eyelid retraction in my right eye early in my diagnosis when I was hyperthyroid. (I’m a 52 year old female non-smoker).

[emmtee]

in reply to: Off of ATD – How long can Graves remission last? #1184885

I never experienced remission on methimazole. My endo told me from the start not to expect it, as I had a goiter at the time of my diagnosis. I was on methimazole for four years until my thyroidectomy (due to a nodule). I was on much higher doses: a high of 60 mg per day early in my diagnosis and a low of 5 mg per day for the last few weeks before my surgery.

I’m just surprised that your endo would suggest that you might have RAI in the future if your remission ends. I would think it would be contraindicated based on your TED.

[emmtee]

in reply to: Methimazole Treatment Plateaued – How Does Perimenopause Relate? #1184861

I think Kimberly made some really good points. With a resting heart rate like yours, I wonder why beta blockers haven’t been suggested already. Maybe you’re one of the patients, as Kimberly suggested, who isn’t able to take them?

I also question why your doctor is lowering your dose when there has been no improvement in your labs. I noticed that in your second question, you asked for input from anyone who continued to back off their dosage despite their symptoms continuing. Is it your goal to reduce your dosage of methimazole, or is this something the doctor suggested for another reason? I think we must be missing some information. Otherwise, this doesn’t make much sense. If you’re not comfortable with the direction your endo is going, by all means, look for a second opinion.

To answer your questions:

1. I’m afraid my experience was a little too far outside the norm to be of any help to you. When I was 46, I had emergency colon surgery, and any irregularities in my cycle afterward were chalked up to stress from the surgery. At the same time, I was having symptoms of Graves’, though it wasn’t diagnosed until I was 47. Around that time it was pretty clear that I was in perimenopause, never knowing what to expect from month to month. I never noticed any correlation between my dose of methimazole and my menopause symptoms.

2. I kind of addressed this above. This is very unusual, so you may not get much input.

[emmtee]

in reply to: Voice post thyroidectomy #1184846

Are you doing a bit better now? I was still a bit hoarse two weeks after my surgery. I remember, because when I was at my surgeon’s office for my post-op appointment, I joked that I sounded better than her receptionist, who had a cold. The hoarseness disappeared so gradually that I don’t remember exactly when it was completely gone, but I noticed a lack of hoarseness the following week. I know that the hoarseness lasts longer for some people and it’s still completely normal and goes away on its own.

Before surgery, people try to be encouraging about the recovery time, but it can take a while to get back to 100%. Our minds tend to minimize details like that when we’re happy with our outcome.

[emmtee]

in reply to: Post TT hypertension #1184839

After I had my TT, I was feeling a little hyper and I asked my surgeon about it. She said that she had to squeeze my thyroid a little during the surgery, and this releases a little surge of hormone. She said the symptoms would pass in a couple of days, and they did. That may help explain your elevated BP, but it’s been more than a couple of days since your surgery now.

Have you already started on thyroid hormone replacement? It takes a couple of weeks for your body to use up the hormone that’s already in your system, so if you are taking replacement hormone as well (as is often the case) you’ve got thyroid hormone from two sources. I didn’t start on my levothyroxine until a week after my TT, which I think was actually due to a miscommunication. When I called and asked about getting my prescription, they called it in to the pharmacy right away.

[emmtee]

in reply to: Why do the old timers still hang out on this website,and this thread? #1184831

When I was first diagnosed with Graves’ six years ago, this bulletin board was an important resource for me. Choosing a treatment is such a difficult decision, and it’s helpful to get input from people who have gone through it. I had a difficult case with lots of ups and downs.

I’m fortunate to have a Graves’ support group in my community, so in the years when I wasn’t posting here, I was attending meetings pretty regularly. I recently started reading the bulletin board again and I post here to help newly diagnosed patients the way that I was helped by others in years past. I recently even had a question of my own and got some great answers. This is a chronic disease and it can always change.

[emmtee]

in reply to: New to this…need some support from others in my shoes #1184795

I don’t know anything about the sympathetic nervous system, and I’ve never had my antibodies tested, but I can describe my symptoms.

When I was diagnosed, I had eyelid retraction in only my right eye, but it wasn’t that obvious. Looking back, I can see it in pictures, but at the time I didn’t even recognize it until my doctor pointed it out after my blood test showed that I was hyperthyroid. At the time, my TSH was too low to measure and my T4 was 4.31 (normal range .82-1.77). My T3 wasn’t measured in that test. At my next blood test, my TSH had not changed, but my T4 was down to 2.50 – still high, but I remember that I was feeling much better and my symptoms had all disappeared. My T3 at that point was 8.1 (normal range 2.0 – 4.4).

I had some issues finding the right dose of methimazole. My dose was increased twice and then I became hypothyroid and had to decrease it again, and finally went off of it for a while. After several weeks off of methimazole, I became hyperthyroid again and all my symptoms came back – including the eyelid retraction in the same eye. At that point, my TSH was 0.012, T4 2.66, and T3 10.3. When I became euthyroid (except for TSH, which was never normal) all my symptoms went away again.

I didn’t have any symptoms for a few years. Then, last November I needed a thyroidectomy due to a large nodule. I actually had one normal TSH 11 days after my surgery (4 days on levothyroxine), and then it dropped again. My T4 was normal in the first two tests after my surgery. My next blood test was in June, and I was hyperthryoid (TSH too low to measure and T4 2.01). My endo has had some staffing issues and never received my test results. I didn’t get to see her until August, at which point I was marginally better. She lowered my dose of levothyroxine.

During the summer when I was hyper, I was having tremors and anxiety (my usual hyper symptoms) and eye issues that were different than before. They were worst at night. The first time I noticed it, my left eye felt painful and it was red. The inner corner felt cold – like a breeze was blowing on it or something. I thought maybe I just had something in my eye, and I went to the drug store at 2:00 AM to buy eyedrops. The symptoms kept coming back over the next couple of months, though. Sometimes I’d wake up in the middle of the night with tears streaming out of my left eye, but not my right. Other times I’d look in the mirror in the morning and both eyes were red with puffy eyelids. The problems didn’t occur every night. I noticed that they seemed to be a problem more often when I stayed up very late and/or didn’t get enough sleep.

My eyes slowly started getting better after my levothyroxine was lowered, but to be honest, I still have mild symptoms occasionally. I had another blood test a couple of weeks ago, and my T4 is good (1.35) but my TSH is still low, so my endo is lowering my levothyroxine a bit more.

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