[emmtee]

in reply to: Newly diagnosed and treatment options #1185280

In case I wasn’t clear before about special diets after RAI and TT: There are none. You can eat everything you did before. My TT went so well (and I was so hungry after fasting so long) that I had a regular dinner my night in the hospital. My TT was actually the week before Thanksgiving. It generally takes a couple of weeks for the hoarseness to go away, but other than my voice and the fact that I got tired and went home earlier than normal, it was like any other Thanksgiving holiday. I ate all my favorite Thanksgiving foods. I even cooked a couple of dishes myself.

[emmtee]

in reply to: Newly diagnosed and treatment options #1185279

There’s no curative diet for Graves’. You should be aware that having a diagnosis of one autoimmune disease puts you at greater risk of getting a second autoimmune disease, and some of those diseases have special diets. I wonder if that’s why some people feel better on restrictive diets – maybe they have other issues that haven’t been diagnosed.

If you go the RAI route, you may be asked to follow a low-iodine diet for a couple of weeks prior to the procedure. This means no seafood. It’s only temporary, though. On the thyroid cancer bulletin board (where I first learned about it) they say it’s pretty bland. The reason behind the diet is to starve the thyroid of iodine so that it absorbs more of the radioactive iodine. I know cancer patients follow it, but I don’t know if it’s standard practice for Graves’ patients. That would be something to ask your endo about.

Regarding blood tests, yes, you will have to have them for the rest of your life, but not as often as you do now. My endo told me that after my TT, once I was stable, I would only need labs and appointments twice a year. I have a tricky case and I’m still not stable yet, but I’m down to three appointments a year.

The risk of TED is greater with RAI, but you can still get it with TT. I have some very minor, intermittent issues in one eye. Like I said, I have a tricky case – low TSH that has persisted, and since my eye issue comes and goes, I’m hoping it will go for good once I’m euthyroid.

[emmtee]

in reply to: Newly diagnosed and treatment options #1185272

When I had my uptake and scan, the nuclear medicine doctor went over the results with me directly after the second scan – I didn’t have to wait. He was actually the one who told me I had Graves’. Before that, based on blood tests, I was only diagnosed as hyperthyroid.

It’s too bad that the methimazole didn’t work out for you. That leaves you with fewer options and forces you to make a decision when you may still be feeling a bit anxious as a symptom of your Graves’. Did your endo mention thyroidectomy at all or is he pushing RAI? I’ve heard that a lot of endos here in the U.S. do that. I was fortunate to have an endo who presented all the options and let me make my own choice.

I wouldn’t worry about cancer from RAI. They’ve been doing it for decades; it’s very safe. My only concern with RAI is the increased risk of thyroid eye disease. Also, if you have young children, the isolation period after RAI can be difficult for them – they don’t understand.

Surgery has its own set of risks, but these are minimized if you have a really good surgeon, as I did. As surgeries go, it’s fairly easy. I was a little concerned about having a scar on my neck, but it’s really not very noticeable, and TBH I’m kind of proud of it.

[emmtee]

in reply to: I don’t want to wait and see. #1185267

Just to clarify – You might go into remission on methimazole, but there’s no actual “cure.” Even if you were to achieve remission, the disease could become active again later on.

How is your insurance? That may be a big factor in your decision. If you still have employer coverage and can get them to cover TT or RAI, then I don’t think I’d wait.

I took methimazole for 4 years and actually did pretty well on it, but I eventually had a TT due to a large nodule. I wish I’d had my TT sooner for the simple reason that my nodule would have been smaller and it would have been an easier surgery. (My nodule was so large, it was actually bigger than my thyroid). On the other hand, I had an excellent surgeon who wasn’t available until right before my nodule was discovered, so who knows? I’m very happy with my TT – no complications and no regrets. It would have been my choice eventually anyway.

[emmtee]

in reply to: 3 relapse in 6 years – time for tt? #1185261

I’m 100% happy with my TT, but I didn’t really have a choice in the matter. I had a large, suspicious nodule and my thyroid was so large it was choking me, so it had to come out. I had actually favored TT when I was first diagnosed though, so I think I surprised the surgeon with how cheerful I was at the news that I needed a TT. Speaking of surgeons, the only reason I’m glad I waited to have my TT is that I had access to a better surgeon by waiting. Get the best surgeon you can. My surgery was extra challenging, but I had no complications at all, and I’m confident that this is mostly due to the experience and skill of my surgeon.

I think the primary reason many people avoid RAI is that it increases the chance of TED. You should be aware that you can still get TED after TT. My TT was Nov. 2015, and 6 months afterward I became hyper and started experiencing some TED symptoms. They subsided after my dosage was lowered, but they still come back intermittently. They are mild and mostly only affect one eye. When I was first diagnosed and very hyper, I had some eyelid retraction (that went away), so maybe that was an indicator that I might get TED? I don’t know, but I don’t want anyone to have the impression that having a TT eliminates the risk of TED. I can’t help but wonder if the mild symptoms I have would have been worse if I’d had RAI.

I’ve always had issues with low TSH, and they’ve persisted after my TT. Due to my low TSH, my endo keeps lowering my dose. I started at 175 and am now down to 100. This is not something you should worry about happening to you – I’ve had a problem case practically since the day I was diagnosed. (It took a year for me to find the right dose of methimazole).

As far as the surgery goes, it really was easy. I went to the hospital in the morning and was feeling well enough to eat a regular dinner that night. My surgeon had me stay the night at the hospital, and I believe that’s the norm. I had pain meds in the hospital, but when I checked out, they only prescribed 600 mg ibuprofen – only 20 tablets, and I didn’t even take them all. I had some chloraseptic for my throat and used it maybe once or twice. I was hoarse for a couple of weeks from the breathing tube, but my vocal cords were fine. They used a special breathing tube for this surgery that alerts the surgeon when their instruments are getting close to the nerve that affects the vocal cords. This is something you should ask about. Also ask how many TTs the surgeon performs annually (should be at least 50).

If you decide to have a TT, feel free to post any questions you have. I’d be happy to answer, and I’m sure Liz and others would as well.

[emmtee]

in reply to: side effects from uptake test #1185234

I never had any problems after my uptake and scan back in 2011. I was on methimazole for four years and never had any liver problems. I was on quite a high dose (60 mg) early in my diagnosis, but that only lasted a few months. I soon tapered off and started over at 10 mg and eventually settled on alternating 5 and 10 mg. I never had any liver problems, but I did (do) have problems with my kidneys. Doctors don’t think the methimazole is to blame, though. They think it’s years of NSAID overuse. Also, at one point my nephrologist took me off one of my BP meds and it helped.

You mentioned that you are hoping to go into remission, but you also mentioned that your gland (thyroid, I assume) is large. Did your endocrinologist say anything to you about the odds of your achieving remission? I had an enlarged thyroid when I was diagnosed, and my endo told me that was an indicator that I was unlikely to achieve remission. It wasn’t the news I wanted to hear, but I was glad to know from the outset. Methimazole still worked well for me, even without the expectation of remission. I eventually had a thyroidectomy because I developed a large nodule.

[emmtee]

in reply to: Failed Radioactive Iodine Uptake Test #1185199

Did they give you a copy of your test results? Did they tell you what the actual numbers were or did they just say they were too low? How long did you have to lie still for the scan? (The lower the uptake, the longer it takes to do the scan).

What dose of methimazole were you on before you went off of it? You never took any sort of “thyroid supplement” did you? Do you eat a lot of seafood or high iodine foods?

I only had one thyroid uptake and scan, and it was when I was first diagnosed – before I started methimazole. I wasn’t told to avoid foods with iodine, but in any case, I don’t like seafood or sushi, and even the salt in my cupboard at the time happened to be without iodine. My results were 57% after 4 hours and 73.5% after 24 hours. I think the scan took about 10 minutes.

[emmtee]

in reply to: Question regarding Endo visits since TT #1185170

Rob, that’s very interesting. I’ve been wondering how levothyroxine needs might change with weight loss. So I could eventually settle into a dose of levothyroxine that put my TSH in the normal range, start to feel better, get active, lose weight, and then become hypo? And they tell you that finding the right dose of levothyroxine after TT is supposed to be easier than finding the right dose of methimazole. 😆 My endo has told me that I have a difficult case. And that was before the 7 cm tumor

[emmtee]

in reply to: Question regarding Endo visits since TT #1185167

LOL! Well, using your formula I can see how they came up with my initial dose – it’s spot on. The dose I’m on now is about equal to my weight in kg. I actually asked my endo if it was weird that my dose was so low for such a large person, and she said that she has patients who are small who are on 300 mcg. You never can tell.

[emmtee]

in reply to: My partner was diagnosed with Grave’s Disease for half a year. What are your thoughts? #1185195

Just to clarify – if your wife is on anti-thyroid medication and it’s keeping her thyroid hormones at the correct levels, then the disease is well managed or controlled. The word “remission” is used when patients are able to go off their medications. It doesn’t happen for everyone, but that’s okay – the drugs are still a good option even if remission isn’t your goal.

I’ll tell you about some of my experiences, and maybe your wife can relate to some of them. When I was first diagnosed, I was definitely irritable, but that wasn’t my number one symptom. I was having tremors. I had a lump on my neck and one of my eyes was more open than the other. Sometimes my feet would get really hot – like burning up, and occasionally I’d have heart palpitations. I also lost a whole bunch of weight to the point that I looked sick. Fortunately, my endocrinologist prescribed methimazole for me and it started working pretty fast. It took care of my symptoms even before my thyroid hormones became normal again. All the irritability went away.

Then I had a bit of a setback. I was on a really high dose, and it seemed like overnight I switched gears and became hypothyroid. I had to go off of my medication for a while. As it cleared out of my system, I gradually became hyperthyroid again, and all my symptoms came back just as before – including the irritability. But then my endo put me on a smaller dose of medication, and everything got better again. (Note: this sort of setback isn’t normal, so don’t worry about it happening to your wife).

So, how this relates to you and your wife… Don’t worry! It’s good that your wife is doing well on her medication. She should keep getting blood tests and seeing her endocrinologist on a regular basis to make sure that everything stays on track. If at some point your wife starts to feel her hyperthyroid symptoms (irritability as well as others) return, she should call her endo’s office and request an order for a blood test.

She may eventually need to stop taking PTU, but she can choose RAI or thyroidectomy. Then she will need to take thyroid replacement for the rest of her life, and she won’t have to worry about hyperthyroid symptoms unless she’s on too high of a dose of thyroid replacement hormone. She will still need regular blood tests for the rest of her life, but probably not quite as often as with the anti-thyroid drugs.

[emmtee]

in reply to: Question regarding Endo visits since TT #1185165

Well, my endo checked my neck again at my last appointment, but she was more subtle about it this time.

I don’t foresee a time when I’ll ever stop seeing my endo. We’re still trying to get my TSH into the normal range. The only time it’s been normal was the blood test 11 days after my TT. Before my surgery, I guess it wasn’t a big deal for it to be low, as long as my T4 and T3 were normal. Now that I don’t have a thyroid, she’s more focused on it. She says that the T4 and T3 can change throughout the day, so you can’t really go by those numbers. As long as the TSH remains suppressed, I’m still considered hyperthyroid, so she lowered my levothyroxine again. I’m down to 112 now from 175 after my thyroidectomy two years ago.

[emmtee]

in reply to: New dx of graves at 28yrs old. Need advice! #1185188

I also question the need to rush to a definitive therapy (thyroidectomy or RAI). When I was diagnosed, I had bit of a goiter, which my endo told me was an predictor that I was unlikely to go into remission on methimazole. She still offered it as one of my treatment options, though. I initially started taking it because I was interested in having a thyroidectomy, but I needed to become euthyroid (thyroid levels in the normal range) before the surgery. I had an unusual case, and it actually took about a year for me to become euthyroid. By that time, I was comfortable with the medication and wasn’t really in a hurry to have surgery. After 4 years on methimazole, we found a large nodule that made a thyroidectomy necessary.

I was satisfied with both my Graves’ treatments. After that first year, I did pretty well on methimazole. I also had a very successful surgery – no complications and a pretty quick (2 weeks) recovery in spite of the fact that the surgery was more challenging than most. Having a really good surgeon is key. I would say that I wish I had had my surgery sooner, except that my surgeon wasn’t around back then. (She was only recruited by the hospital a few months before my surgery).

I’ve actually started to have a few minor eye issues after my TT. Chances of eye issues are said to be worse with RAI, so I’m really glad I didn’t opt for RAI.

[emmtee]

in reply to: Question regarding Endo visits since TT #1185163

LOL! I’m quite sure my endo will never forget that I’ve had a TT. My case was quite memorable due to the size of my nodule. My surgeon actually gave me photos of my thyroid, and I’m confident that she got every bit of tissue that she possibly could. At the time we were all expecting the pathologist to find cancer, and the benign findings were quite a surprise.

I see my endo again in a couple of weeks.

[emmtee]

in reply to: Stored thyroid tissue after TT? #1185158

The last time I saw my endo, she checked my neck even though I’ve had a thyroidectomy. She told me she will continue to do this because it’s possible for some thyroid tissue to grow back, and it’s more likely to occur in patients who were hyperthyroid.

I’ve never heard of anyone storing thyroid hormone. After my surgery, I was told I would use all the thyroid hormone in my system within a couple of weeks. Then again, I know they have blood tests for “Total T4,” not just the “Free T4,” so what about the T4 that isn’t Free? That must be stored somewhere. Maybe that’s what your doctor is talking about.

After my thyroidectomy, I was prescribed 175 mcg of levothyroxine. At 6 months post TT I was hyper, so it was effectively reduced to 150 mcg (I actually took 175, but only 6 days a week – same total mcg as 150 x 7). That brought my T4 and T3 into the normal range, but my TSH was still suppressed (as it had been for most of the time I was on methimazole before my TT). My endo wants to try to get my TSH into the normal range, so my dosage was reduced to 137. That didn’t have much of an effect, so she reduced it to 125 when I last saw her in April. I see her again in a few weeks. I have no idea what my blood test results are going to be. Some days I feel a little hypo.

BTW – My dose has gone from 175 to 125 mcg and I’m significantly overweight. There’s no way I believe that 200 mcg is “average.”

[emmtee]

in reply to: After a long absence, back again! #1185112

Congratulations on your benign diagnosis. It sounds like you had the same kind of tumor that I did, but my pathologists worded it a little differently: “Hurthle cell adenoma, 7.0 cm in greatest dimension, benign.”

This is a type of tumor that’s “encapsulated” – it grows inside of a capsule of tissue that isolates it from the rest of your thyroid. As long as all the hurthle cells stay inside the capsule, it’s considered benign. If they escape, that’s when they start calling it cancer. The pathologists have to examine all the tissue of the perimeter of the capsule before they can issue a diagnosis, and that’s why it takes so long to get their report. It’s not like other cancers where they can diagnose them based on a biopsy.

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