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in reply to: RAI Ablation #1072715
Hi Ann,
You had RAI 23 years ago? Have you been taking thyroid replacement hormone during that time? You’re correct that it’s not normal to become hyperthyroid again this long after having RAI, but if you had a very small dose and you still had a lot of thyroid tissue remaining, it may be possible, I don’t know. Have you consulted your doctor yet? If not, you must get in immediately. I suppose it’s possible something else could be causing those symptoms, but you could be right. In any case, a blood test will determine soon enough. Please let us know what you find out.
Best wishes,
in reply to: TSI after thyroidectomy? #1072614Alice,
If your TSI disappear and if that does improve the levels of antibodies that are causing the eye disease, which may be separate antibodies (they don’t completely understand the relationship), then it will depend on whether the swelling in or around your eyelids is swelling related to an active process, or whether it’s caused more by actual fatty deposits and scarring caused by a disease process that’s for the most part already run its course.
Your ophthalmologist, if he’s experienced with Graves’ patients, may be able to make an educated guess about this, but otherwise you’re probably going to have to wait and see what happens. Most people do see some improvement, especially if it’s mild, but few see a total resolution.
in reply to: Eye surgery #1072605Hi, Tc75,
I’ve gone under over 30-some times, so I guess I’m one who can answer that question.
Before you go under you’re given an IV with a pretty big needle, and that’s the worst part. Most of the time you will be given a numbing shot before they put that big needle in; and if so, you won’t feel that much. The trouble is that the numbing shot stings quite a bit. But they give that with a very tiny needle, so it’s only the burning from the medicine that you feel, not the shot itself. And once the IV is in, you’re given some relaxation medicine, and then you won’t care about anything.
Most of the time you’ll be wheeled right into the O.R. and they’ll let you scoot yourself from the stretcher right onto the operating table, where you can get comfortable and they’ll put some wires on you to monitor your heart and blood pressure. They might put some cuffs on your legs to keep you from getting clots in your legs. They’ll wrap you in warm blankets and put a nice wedge under your neck so that your body is comfortable. Then before you know it, you will be told that you’re being given some medicine that will make you go bye-bye, and it works very quickly. You won’t remember anything until after the surgery is over.
That medicine isn’t the general anesthesia. That’s given through a tube in your throat, but that’s not something you’ll ever have a memory of.
The next thing you’ll remember is waking up in the recovery room. Usually, any pain is very mild and manageable. Occasionally I’ve had severe pain. There is almost always someone right there, and often your family member is there too, since most of the time you have been somewhat awake previous to this and just haven’t known it.
What is it you fear about being put under?
in reply to: Graves disease in Males #1073305Dear Aravindh,
I too have been watching your posts with interest because I feel some empathy for you, coming to a new country and then also having to deal with the issues of being ill with Graves’ Disease. I’m happy to see that your thyroid levels are returning closer to normal and that you seem to be feeling a lot better.
Are you aware that your TSH can take a long time to return to normal, even when your actual thyroid hormone levels are completely normal? The reason this sometimes happens for some patients is that a certain category of antibodies that cause Graves’ Disease can also directly suppress the TSH. When thyroid levels have been normal for a while, these antibody levels reduce in number, and then their action in suppressing the TSH level decreases. When that occurs, the TSH can also rise to a normal level to match the normal Free T4 and Free T3 levels. Until this happens your doctor can’t use the TSH as an indicator of whether you are still hyperthyroid.
This doesn’t happen for all Graves’ Patients, but it does for many. For me, my TSH remained at 0.002 even when I became hypothyroid following RAI. It was suppressed for six months before it finally began to rise.
Some doctors aren’t aware that this happens. Your endocrinologist will know about this.
As mamabear suggested it’s a good idea to request copies of all your lab tests and keep them for your records. You will soon have a good idea where your numbers are when you feel best.
Best wishes to you, and I hope your experience in our country improves very soon. Dianne
I’m sorry your endo is trying to scare you. They do see the serious side effects occasionally and I’m sure when it happens it sticks in their minds. The risk of it happening to you is low, although your endo is correct in saying that RAI is the safer choice. As long as you are aware of the risks and are making an informed choice, the choice is yours to make. Vasculitis is a serious problem, but VERY rare.
You might indeed be happier with an endo that’s more supportive of your choice. I hope someone can help refer you to someone in your county (Nassau county, NY).
The photo shows a man with his eyes blood-red and obviously buldging out of his head, holding a sign saying he is uninsured and has an overactive thyroid, and asking for help. He his holding a cup.
The U.S. is one of the few modern industrialized countries where a person too sick to work to pay for health insurance is just out of luck. I hope we do something about this. There is no "perfect" solution that I see, but we can surely improve on the current system.
in reply to: Thyroid Scan/Uptake – pregnancy #1072665I agree. The person you talked to must not have been the normal person in charge. This procedure is routinely done on patients who plan to have babies in the future. Something is funny about this!!
tc75,
I’ve had bilateral orbital decompression surgery and other than the day of surgery and possibly the day after, think I could have cared for small children with only a little help. You wouldn’t want to do a whole lot of bending over and you do need to keep ice on your eyes the first 24 hours. Talk to your doctor about the first couple of days of course. But really, the recovery from surgery is much easier than you think! I have talked to people who felt like going out to mow their lawns (NOT recommended!). I went out to lunch the day after surgery (with dark glasses on) and flew back home from Los Angeles two or three days after surgery. By then I wasn’t staying in bed all day by any means.
So ask your doctor, but perhaps you CAN be a mommy shortly after the surgery, although I think for your own sake you should probably still have some help for the first week or so, just because being a mommy to little ones is just about the most demanding job there is, and it’s too easy to overdo. If you have a mom or a sister or friend who could stay for a few days, or at least come over for some time when the kids are awake, that would be ideal.
Every doctor has his own way of doing the decompression, so you might need more recovery time than I did. Be sure you do talk to your doctor about what his patients usually experience, in case there’s a remarkable difference. Still, I’ve talked to quite a few people and most seem not to have too many problems.
Does anyone else have input on this? Dianne
in reply to: Desperately need advice #1072698Wow, Melissa–did the same doctor really tell you that after recommending RAI as the safest treatment?
in reply to: Another new member #1072683Emily,
I’m pretty sure it’s not caused in any way directly by hyperthyroidism such that treating it will make a difference, so you should definitely see your ENT. My ENT thought there might be something related to the change in volume inside my head related to the surgeries I’d had for my orbital decompression. Do you have Thyroid Eye Disease?
in reply to: Surgery in Two Days #1072669Lorrainydaz,
I’m quite sure you’ll get to the right levels after your surgery. There are indeed some wide levels of "normal" that doctors wouldn’t treat, but which may not be normal at all for you, and that’s likely where you’ve been for many years. I’m sure that this thyroidectomy will solve the problem for you.
Best wishes on your surgery Wednesday!
in reply to: Graves Opthalmopathy #1072653Melissa,
You asked about the spelling of ophthalmologist, so i just spelled it correctly for you. It’s a difficult one and most people spell it wrong, so you’re not alone. I corrected it in the subject line too. It’s that first h (oph) and the l (thal) that people get wrong.
Ophthalmopathy is another word that’s rough to learn to pronounce. When my doctor first told me I had it, I said, "WHAT??" He just laughed. So for anyone who wants a fast lesson in pronouncing it, it’s:
oph-thal-MOP-a-thy (the "h" is silent, so it’s prounounced op-thal-MOP-a-thee)
You asked how you can tell if what you have now is just the beginning of a bigger problem. The answer is that you can’t. There’s no way to tell what will happen from here. I wish there was a better answer than that, but there isn’t. When I first discovered that, I was worried beyond belief, and unfortunately some of my worst nightmares came true, but the way it happened I didn’t have to deal with it all at once, and I had lots of wonderful support, so I was okay.
And chances are for you, the worst has already occurred, since most people don’t ever have a severe case. So I suggest that you take each day as it comes and live as if the worst is behind you. If it happens that you have more to deal with, you can handle it as it occurs.
Best wishes and big hugs,
in reply to: side effects #1072787Imr1023,
Did your doctor have a reason, or was it "because I’m the doctor and I said so"?
What does he mean by "nice try"? Does he think that you are a child trying to pull one over on him? Unless this situation is entirely different than it sounds so far, this doctor raises some major red flags for me. I wonder what his agenda is.
Remember that this is your body, and that your doctor can make recommendations but ultimately the choices are yours. I hope you’ll go to that appointment armed with questions and ready to stand up for your best interests, even if they don’t match any agenda he might have.
in reply to: Graves and B-12 Malabsorbtion? #1072634Pernicious anemia isn’t caused by Graves’ Disease. It’s an entirely separate autoimmune disease. You should ask your endo the next time you see him if you do indeed have this disease or if there’s another reason you have a low B-12. No one here can diagnose you for that.
It is more common for those of us who have Graves’ Disease to have other autoimmune diseases, so if you do have pernicious anemia, that would be the connection. I have at least two other autoimmune conditions. One is an autoimmunity to my platelets, causing a low platelet count. The other is called Sjogren’s disease. I have antibodies to my nerves, which could be part of the Sjogren’s or a separate condition.
Most people who have low vitamin B12 can increase their levels by taking B12 supplements or by eating more foods that contain B12, but with Pernicious Anemia the problem is that specialized cells in the gut that absorb B12 are damaged and can’t absorb B12, so it doesn’t matter how much extra you take in. You then have to have shots in order to get enough B12. Usually patients with Pernicious Anemia will have severe symptoms, such as tingling in hands and feet, or even dizziness or fainting. There are other symptoms; I’m not familiar with all of them. My grandmother had this and those were some she experienced.
daleesai72,
Doctors tried for years to figure out a dose that would make patients euthyroid (normal thyroid levels) with RAI. That’s what they were aiming for with me. Studies have shown that this very seldom is successful, and even when they do manage to achieve it, it only lasts for a short time. Eventually most patients become hypothyroid regardless of which dose they were given and what the initial response was. So for that reason, most doctors now are giving an ablative dose at the beginning. That avoids months or possibly years of fluctuating levels. This is what causes patients most of the problem anyway.
It’s NOT necessarily inevitable that you will have to have RAI in the future, as you seem to think. If you choose to you can stay on antithyroid drugs indefinitely, as long as you’re able to control your levels with a low dose and that’s what you want to do. Read about how this is done in James’ post.
RAI is an option if you choose it, and so are antithyroid drugs. It’s all what you are comfortable with.
So don’t let your thoughts about what you HAVE to do add to your stress levels. The choice should be yours.
By the way, you’ll be 50 before you know it. Time passes very quickly. You’ll care just as much then about whether you’re hypo or not.
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