Has anyone here dealt with Grave's Disease?

Parent Cafe
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<p>Hi everyone, </p>

<p>I just need to know if anyone here has Grave’s Disease or is close to someone who has had it. I have read articles about it and impersonal symptom lists, but I just need to hear from real people who have had it. I have tried talking to people, but almost no one has ever heard of this, let alone know someone who has it. </p>

<p>Long story short: my mother has had hyperthyroidism her whole life. At the start of menopause, it went crazy, she was diagnosed with Grave’s Disease, and she eventually had to undergo Radioactive Iodine Treatment. We were basically told that would be the end of her physical symptoms. </p>

<p>Fast forward ~4 years and my mom just completed (today) her orbital decompression surgery. She has also dealt with depression and other physical symptoms because of GD. </p>

<p>I am only 19 and they are starting to monitor me for signs of Grave’s Disease. I have hyperthyroidism, like my mum, and since Grave’s Disease has such a strong genetic link, doctors pretty much assume that I will develop it at some point. </p>

<p>Does anyone else have experience with this disease? What else should I expect with this?</p>

<p>I’m just a little lost, confused, and worried right now. </p>

<p>Thanks everyone :)</p>

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<p>Sure lots of us have it. About 2% of the female population, although for most of us it comes on later in life. There is a lot of information online about it (try Mayo or the Graves disease Foundation). Most people with GD do not have the occular (eye) component that your mom does, and of those that do, few have to have the radical surgery she just had. So, it is great that that option was there for her, but the chances of you following exactly the same path to eye surgery is far from certain.</p>

<p>That said, your chances of eventually getting Graves disease, given that you are already hyperthyroid, is higher than the average person. I find it a very annoying disease but bearable. </p>

<p>At some point, especially if you lose a bunch of weight quickly, your heart is racing, you need to sleep a lot less, well, then the disease has probably kicked in. Go in, have your blood work done and if it appears to be Graves they will probably try some other things, but you may eventually get your thyroid nuked (radioactive iodine). This does not hurt at all and until they get you set up with just the right amount of supplemental thyroid (after your in-body thyroid dies) it is - wait for it - very annoying.</p>

<p>One other thing. If you have any thyroid disease you are at much higher risk of celiac disease. If you every start to get a persistent persnickety tummy, or you just can’t seem to handle certain foods, or you are getting a ton of reflux or indigestion insist that you be completely tested for celiac. In my experience this disease is much more demanding than Graves. It is harder to diagnose, so it usually drags on for 10 years till they finally figure it out. At least Graves is easily diagnosed.</p>

<p>So, the bottom line that I would say is that, you might get Graves, if you do, it will probably be something you can live with. You are not destined to follow you mom’s path. But as you already have thyroid disease, please keep you antenna up for celiac. Both celiac and Graves are autoimmune disease. And they are linked. When my celiac flares, my eyes get much worse.</p>

<p>Good luck. You have LOTS of company!</p>

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<p>I began losing weight about 5 years ago, but wasn’t doing anything to lose it. I actually felt great, but knew it was too good to be true. After visiting the doctor, she sent me to an endocrinologist, who diagnosed me with hyperthyroidism. I think he may have called it Graves. Anyway, he gave me a choice of “zapping” my thyroid with radiation or going on medication to slow my thyroid. If my thyroid was elimated, I would still have to take medication anyway, so I opted for Methimazole. I gained all the weight back, plus then some. The occasional heart palpitations quit. I didn’t really have most of the other symptoms. Anyway, after about a 12-18 months on the medication, I quit taking it and have been fine for the last few years. I don’t know if Graves is something that can come and go. Just be on the look out for the symptoms. That’s what I’m doing.</p>

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<p>My Mom and one brother share the disease. My Mom was circumspect about her onset symptoms. My brother reported racing heart and extreme sweating. Both had their thyroids “nuked” and both had replacement therapy to keep their metabolisms balanced. A relative oldster, my brother reported this as being “no big deal.” (Yes, I realize it’s all relative, and that YMMV.) There are a couple of options re: nuking. My brother chose the “half-dose done twice” approach. In his case the first half-dose was sufficient. Again, YMMV. Good luck!</p>

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<p>We have the other end of the spectrum here, which is hypo thyroid disease which means that instead of having an overactive thyroid, you have an underactive thyroid. You can learn tons about the thyroid gland by reading Mary Shomon’s books on thyroid. Hey wow I just this moment went to Amazon to link for you the hypo book she wrote and lookie what I found: [Amazon.com:</a> Living Well with Graves’ Disease and Hyperthyroidism: What Your Doctor Doesn’t Tell You…That You Need to Know (9780060730192): Mary J. Shomon: Books: Reviews, Prices & more](<a href=“http://www.amazon.com/Living-Well-Graves-Disease-Hyperthyroidism/dp/0060730196/ref=sr_1_6?ie=UTF8&qid=1288722821&sr=8-6]Amazon.com:”>http://www.amazon.com/Living-Well-Graves-Disease-Hyperthyroidism/dp/0060730196/ref=sr_1_6?ie=UTF8&qid=1288722821&sr=8-6)</p>

<p>She’s a truly wise person writing from her experience and I can’t recommend her books highly enough. </p>

<p>When your thyroid is off kilter your whole metabolism goes out of whack. If you’re hyper (Graves) you revvvvvv up (lose weight, sweat, poop lots, have anxiety and heart palpitations). If you’re hypo you get the opposite; you sloooowwwww down (gain weight, feel cold all the time, have dry skin, get constipated, have fuzzy thinking and depression). Two sides of the same coin.</p>

<p>Mary Shomon will teach you the ins and outs of medication for hyper (before you get zapped if you do) and hypo (for many after you get zapped). Her info made all the difference in the world to our family. I am forever grateful. </p>

<p>Good luck to you RGE and you are sooOOOOOoooo not alone!!!</p>

<p>Oh one more detail - my H. who is the hypo craves salt and before being diagnosed wanted his food so salty it burned my mouth. His bp was up and he got on meds and soon after that the hypo kicked in. I have heard from one other person that her hypo kicked in as soon as bp med’s were started. My BIL on the other hand who was hypER, was salt averse. Salt with iodine; iodine a thyroid hormone essential constituent. How about you?</p>

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<p>Ok one more more thing. On the eye part of thyroid disease. Some people with Graves get a symptom which is that the eyes seem to be popping out = like they are opening their eyes super wide and staring real hard. I sometimes see people (like this weekend, for example) who have this and I want to run up to them and say, “Um, you might want to get your thyroid checked.” Rude? I stifled myself this weekend, but hey, who cares if we’re rude/weird if in the end we help someone? I’m asking what y’all think. Same for goiter. I have sometimes wanted to tell someone they had an incipient looking goitery neck and that instead of feeling fat and depressed they might want to get their thyroid checked. What do you think?</p>

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<p>That’s a tough one. Someone came up to my father one time, saying they were a doctor, and advising him to have his a spot on his face checked. He appreciated the advice, especially when he found out that some skin cancer had returned. I think if you prefaced any comment with, “I know someone whose ______ looks similar to yours. You may want to be checked for ______.”</p>

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<p>I do not have Grave’s Disease, but my 20 year old son has been living with it for 5 years. It is primarily a female’s disease, but it does occur in males. He opted to have his thyroid “nuked”, primarily because he was diagnosed only after becoming paralyzed unexpectedly. He had developed Thyrotoxic Periodic Paralysis. It is a “complication” that is rarely heard of in the United States, but is much more common in Asian males. He is not Asian.</p>

<p>He has had a difficult time getting the medication level just right. However, I think he would agree that it’s just something that has to be monitored closely. A good endocrinologist really helps.</p>

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<p>Thanks Toledo, that’s good language to use. Justamom, if your son is adjusting his med’s, he should be aware that season can affect med dosage requirements (he might need more in winter). Also, though his doc might not offer it, he can get a second prescription for T3 (not just the T4 of synthroid) and many people feel much better with that added into the mix. Get the Mary Shomon book - you will not regret it!!!</p>

<p>Also, it’s a myth that thyroid disease is a woman’s disorder. My husband had every symptom in the book for years and years and went to a few different doc’s and because he was male, nobody picked it up. His mom got diagnosed and when we looked up hypothyroidism in the family medical book to see what the heck it was, we knew immediately that my H. had it. He got tested the next day and his numbers were off the chart. He was walking towards an early heart attack and now when I hear of men dying suddenly in their 40’s I wonder if it’s undiscovered hypo. Fortunately the medical world has become much more plugged into recognizing thyroid issues than even 10 years ago. It’s just not the case that it’s a women’s disease.</p>

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<p>It’s not a women’s disorder per se. It’s an automimmune disorder. And due to the immune system boosting action of estrogens, women get autoimmune dieseases more frequently than men. The immune system sometimes gets boosted into over-activity (i.e. disease). This is true not only of Grave’s but also lupus, rheumatoid arthritis, Sjogrens, etc are all autoimmune and all are several fold more common in women than in men. In the case of lupus the female:male ratio is as high as 13:1. Not a women’s disorder but one that strikes women significantly more frequently.</p>