[elf]

#1074449

Hi lmatthews,

Do I understand it correctly that you had 2 RAI treatments and your thyroid is still alive, causing you hyperthyroidism?

I do love shellfish, too, and am actually glad that I dont’ have a thyroid to cause me any contra-indication. But since you have a reaction to shellfish – ? If you don’t have your thyroid, does it mean that your thyroid antibodies cause the reaction?

You alre lucky ” title=”Very Happy” /> in a sense that your eyes have been considered "big and beautiful" so far… Are you considering any eye-related treatment (there are so many choices now, from lid correction to whole eyeball correction).

You are absolutely right, stress is the thing to avoid for us Graves patients (and anyone really).

[lmatthews522]

#1074450

Actually as I understand it..(and bear with me cause most of the technical terms I am not as familiar with) I now am hypoactive as a result of the RAI treatments. The first one did not work and I had a huge goiter. I don’t know if the shellfish plays a part in the a reaction to the thyroid antibodies. The doctors have not thought so when I raised this as an issue in the past. Just recently, I had lobster at least 2 to 3 times a week for about 3 weeks and then went to have labwork done and my TSH was 19.0 (range 0.4 – 4.0). Yes stress was another factor in my life during this period so that could have been it as well. I was just curious if anyone else had a similar reaction.

As far as my eyes…they tend to lose shape (or enlarge) when I’m stressed or my levels are off but are not in any way protruding to where I need to consider the surgery. They actually go back to normal (whatever that is) when I fell okay. In fact the opthamologist is recommending radiation to the eyes (not sure of the pros and cons with that right as yet) to I guess help with delaying the obvious of the end result for someone with Graves. Thanks for listening…

[Ski]

#1074451

Hi lmatthews,

I am SO glad you found us!

First, a TSH level that is HIGH actually means your thyroid hormone levels are low. TSH and T4 have an inverse relationship in the body. TSH is the Thyroid Stimulating Hormone, released by the pituitary gland in response to the level of thyroid hormone it senses in your bloodstream, so a high level means it is literally screaming at the thyroid to "send more hormone please!" The doctor’s response should be to adjust your thyroid hormone replacement dose to try and level you out. An increase in thyroid hormone replacement is appropriate when your TSH level is above the normal range.

Now, your question about shellfish is interesting, because by all popular logic, once your thyroid tissue is completely gone, you should have no way to feel hyper as a result of iodine-rich foods. Yet I still get a little hyper after I eat a lot of shrimp. Nothing else, just shrimp. And my thyroid is definitely gone. For all I know it’s a completely separate reaction, but I didn’t remember that happening to me before. I was never a big shrimp eater, so it’s hard to make a judgment. It literally CANNOT change your thyroid hormone levels after you have no thyroid left, because there’s nothing in your body that is producing hormone, so it cannot be stimulated to release excess hormone by anything, neither iodine nor antibodies.

The eye disease you have experienced is likely all that you WILL experience. The typical course is a 1-3 year cycle (comes on all at once, changes up/down for a while, then begins to improve, then stabilizes). Once that cycle is over, the biggest changes are in your past. I do still have episodes as you describe ~ when my life is particularly stressful, I feel pressure behind my eyes, and they do start to bulge out a little, but like you, when things return to normal, so do my eyes. My symptoms began sometime in 1998, so I’m definitely past the 3 year curve, as you likely are. MOST patients never have the worst of the eye disease, so keep that in mind. Just do what you can to manage your stress (we will never be rid of stress in our lives, it’s actually important to have some!), that’s really all you can do. For some people it’s yoga, for others it’s good workouts, for others it’s a funny movie or a hot bath. Whatever it is that helps you keep balanced, do that.

And keep asking questions! ” title=”Very Happy” /> That’s what we’re here for. ” title=”Wink” />

[lmatthews522]

#1019836

I was recently diagnosed with Graves Eye Disease (GED) right before Xmas in 2008. While this news was a downer to the holidays I feel that this is something I’ve known for more than 12 years. I have noticed a stare in my right eye and shy away from the camera although my eyes are the first thing people notice about me. The irony of it all is that they are unaware of the disease that looms behind what they feel are "beautiful eyes". I’m in no way trying to have self pity (each day of course takes on a different perspective) but I do find myself feeling cautious when looking at people now because I know that one day my eyes will not look "beautiful" because at some point my eyes may look as if they are really popping out of my head as a result of GED

I was diagnosed with hyperthyroid disease in May 1997 and like several of you that have written on this board, I was sent to every doctor imaginable, taking all types of test (MRI, CAT Scans, Endoscopy, therapists, etc.) and sick for more than 6 months before my gastro was finally able to give all my symptons a name. After being diagnosed and changing to an Endo that I feel truly "listens" to me, I have had two radioactive iodine treatments and a number of visits to the docs to reassess my lab results and after a number of years found myself at a place where I felt good both mentally and physically. I have had ups and downs over the years and what I find as a key indicator to the "relapse" is STRESS that comes from situations with family and friends (which unfortunately has happened again in the latter part of 2008) that I have no control over that takes my thyroid levels off the chart. Other things I’ve notice relates to the lack of a balanced nutritional diet in my life and my fetish for shell fish. I really love oysters, shrimp and crab legs and was wondering if anyone else experienced an increase in their thyroid levels when blood tests are taken within days of having what one would consider as too much iodine in their system?

While 12 years would make one think I am a pro in dealing with the Thyroid (Hyper) and now Graves disease, I am writing today because I feel that other than doing what the doc recommends for all these years, this is my first step in reaching out to others to empower myself in understanding how others deal with managing their disease. Please share your stories and any advice you may have on destressing and the impact of too much or too little iodine would have in maintaining a normal TSH level.

[lmatthews522]

#1074452

Ski you are awesome…thanks for responding and helping me sort through some of the anxieties I am feeling as I have to adjust to new meds (changed from 112 mcg Unithyroid to 137 mcg Levothyroxine). So the brand and dosage changed after all these years. They told me at the pharmacy that Unithyroid was not made at 137 mcg so they changed it…I tried to find a chart to verify the levels per brand but so far I feel okay.

It had been a few years since I had to change medication because of lab results and I was beginning to feel unbalanced (now that’s funny one cause I have vertigo issues too ” title=”Confused” /> ). You would not think I have all these issues with the active life I lead with the many projects I volunteer on in my community. I actually think the volunteering is what keeps me grounded and not as stressed…I also take time for myself which is not always understandable with my husband. I am off every other Friday and I will sometimes go to the movies, spa or out to lunch by myself. A good book or my journal and I’m in heaven.

Are there folks out there married that find it challenging that your spouse do not always understand when you are tired, moody, sex drive is low, etc.? How do you find a way for them to understand you (when you are not at your best because of your thyroid problem) and find a balance in your marriage that will keep you both happy?

Thanks again Ski…I feel like someone is listening.

[Ski]

#1074453

You are SO welcome. In truth, participating on this Board is one of MY favorite ways to reduce stress and feel as if I’m contributing. It warms my heart. ” title=”Very Happy” />

Since you’ve changed thyroid hormone replacement, you may have a period of adjustment. There IS no "equivalent dose" chart, because we each react differently to the fillers that make it into a pill, so the best you can do is start a dose, wait six weeks, get your bloodwork done, and adjust as necessary (six weeks between each dose change is recommended in order to allow your body to fully metabolize the new dose). In the interim, I usually have up/down feelings, but after the six weeks is up, things level out.

Just a quick note ~ if the dose your doctor wants you to be on is not available with the medication the pharmacy is using, there is still a way to get that dose. You can take pills one dose up and one dose down on alternating days. Since T4 is the "static" form of thyroid hormone (not the active, T3 form ~ we make the T4 into T3 before our body uses it), you don’t end up feeling up one day and down the next, your bloodstream actually averages the two doses so that your effective dose is in between the two you are taking. Does that make sense? If you are interested in pursuing that, ask your doctor for TWO prescriptions ~ one for each dose. Still, unfortunately, the doses are not equivalent across different forms of replacement, so probably you don’t want to pursue that right this minute. Give this dose a chance to work first, see how you feel after six weeks have gone by.

Now, NEXT time the pharmacy tries to tell you that they’re changing your brand, fight back. Actually, if you haven’t switched for long, you may want to fight back right now so that you can just use the higher dose of the replacement you were using before. This is a long process, and you do NOT have to suffer it. If your prescription coverage is lacking and it will mean you have to kick in a little bit to get the pills, so be it. They are typically very inexpensive. As a matter of fact, you MAY be better off just buying the pills yourself ~ that’s what happened to me initially. At first I was on a different form of insurance than I am now, and they would only let me have a prescription for 30 days at a time (even though we KNOW I’m going to need this forever), and they made me contribute a co-pay of $10 each time. My doctor took a look at the retail prices and let me know that 100 pills, rack rate, was only $22. So I could get more than a three-month supply for about the same price I was paying in two months, and I didn’t have the ridiculous restrictions of "what is covered and what is not" through my insurance plan. It’s worth checking out, if that becomes an issue for you.

And finally, yes YES YES, people have trouble explaining things to their spouses. I think we have a bulletin for spouses available ~ if your spouse is willing to read it, it may help. Some people have found posts from other people that speak to the issues we go through, printed them out and left them around the house. That may help as well. The most important thing for your spouse to know is that you are dealing with a lot, and you’re doing the best you can. It’s the old "you don’t look sick" kind of thing, they expect that unless they can see it, you must be just fine, and all this "drama" is of your own making. NOT SO. Whatever you can do to educate your spouse will be helpful.

Look around the Board for similar posts to yours ~ you might even be able to just search by "spouse" and find some things. Look in the old Board too, it’s a treasure trove. ” title=”Very Happy” />

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