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Yes. Thank you. My dr. didn’t say anything about my heart…palpitation. I am not sure what palipations are. My heart pounds at night when I am resting. It does it periodically during the day. Is that a palpitation? I have to get a bunch of questions together because when I saw dr. last..he said after I go for the uptake, he can perscribe by phone.
Hi cosmo-
from what I understand- when you have drastic weight loss with hyper- your body acts like it went on a starvation diet- YOu loose weight- but it’s not good and your metablolism gets a ruined set piont. I am a 2nd Degree Black Belt in Tae kwon Do- & I work our farm with hard manuel labor, in other words I am used to being very fit…. however when I lost the weight at the start of this I turned into a trembling pile of bones. the weight came back as I got better, but now my body fat is much higher than before at this same weight. I had lost muscle and gained back fat = slower metabolism = starting over with fitness. I really think excersizing helped- but if you have ANY heart palpitations or on meds that affect your heart- well.. check with your doctor first to be sure your body can take the excersizes you want to do. I was advised to hold off untill I got my levels off the extremes that they started at. Hope this helps. LissaI did not find out I had Graves until about 7 mos. after I had a melt-down at work – I was so hyper, hot all of the time, and over-reacted to any stress. I finally quit my job (in tears) because I thought I was going to kill one of my customers (I sold real estate). I knew “something” was wrong, but couldn’t explain it. I was so ill-tempered. It was a relief, actually, to be diagnosed with Graves because then I could put a name on what was causing the way I felt. I lost muscle mass, my eyes were swollen shut in a.m.-tearing-scratchy, I lost 16 lbs in about 6 weeks, my heart was racing, I was so tired all of the time – even after I quit working. After I took the radioactive iodine pill, the thyroid finally stopped over-producing and I went hypoactive, started taking Synthroid. It has been up-hill since then – 4 yrs.+. I was one of the few (like about 1-3%) who also has thyroid eye disease, and I later was diagnosed with Fibromyalgia (along with having acid reflux so bad I had to have esophagus stretched), along with anxiety/depression. I was so ill the first 2 yrs., I qualified for Social Security Disability. But, I do feel so much better today. I have regained my muscle mass – I work out in gym everyday for about 1-1/2 hrs. I still have chronic fatigue from Fibromyalgia; eyes still swell at night if I have over-done it the day before and am really tired. But, my TSH is stable and I have been on 112 mcg Synthroid for about a year now. I suggest you read books about this – getting educated will give you hope and help you ask the right questions when you see your doc. And, hang in there – you will feel better. Joy in NoGA mtns.
Joy is that true so few of us with the eye disease?Aren’t we the lucky ones! Gerri
I know my questions have been addressed many times before, but this is all new to me and I would like to get some feedback on what to expect in the coming months. I am uncertain of which therapy course to take. The oral meds scare me with the potential damage to the bone marrow and liver and the RAI seems like the best choice overall,(My Doc favors this) but I’m not totally convinced of this either. Can someone give me an idea of what to expect on both therapies? Am I going to feel absolutly lousy and gain a tremendous amount of weight? The thought of feeling bad for months is unsettling. I know that this must be treated, I’m just scared and upset right now. Any insight would be greatly appreciated.
Thank you.Hi deblynn,
It is difficult to make a treatment choice, I know — especially when you are feeling crummy because of hyperthyroidism!
First, remember that the more information you have, the better. Look up our recommended books, get one or two or three at your local book store, Amazon.com, or your local library. Thyroid disease, while your doctor may represent it as “simple,” is actually a complex problem, and as the patient, understanding it will help you immensely as you go through your treatment.
Second, remember that ANY steps away from hyperthyroidism are steps toward health. You may read here about people feeling crummy for long periods of time, but remember a couple of things about that: people here are *mostly* those who have had trouble — the majority get treated, feel better, and never search out a single support site; and also, while we may feel crummy, as long as we are under a doctor’s care, we are feeling a little better all the time as we make our way to normal thyroid hormone levels.
There is no “guarantee” that you must gain incredible amounts of weight. There are a few components to the weight gain — the most important thing to remember is that we lose muscle mass when we are hyperthyroid, and we do NOT want to lose that. It’s losing weight, but it’s losing the very weight that we need in order to maintain our metabolism. When we begin to gain weight after our thyroid levels begin to fall, it is that muscle mass returning, which we desperately need. The only problem is that it returns as “baby muscle,” which we must diligently strengthen, carefully and gently, and only when our doctor clears us for exercise. Another element to the weight gain is simply the lowering of metabolism, and we can fight that by eating smart — no wasted calories, only good, nutritious food, in sensible portions.
The MOST important thing to know is that being hyperthyroid is extremely dangerous. Something must be done. Look carefully at all of your options before you make your decision. I truly believe it helps in our recovery to have played a big role in choosing our treatment.
To that end, you may want to consider taking the ATDs for a short period of time, just so you can start to feel a little bit normal again and allow yourself some time to make the final decision as to your treatment choice. Many people here have done it, just to gain a clearer head for thinking these things through, and to bring their levels down to begin the healing process.
One final note — your body will only begin to heal after you have reached, and maintained, normal thyroid hormone levels. That is a simple fact. No negotiating will make it go away. Our bodies go through a metabolic “hurricane” with hyperthyroidism, and when the wind dies down, it does NOT mean we are “healthy.” It means our body can finally begin to rebuild. Have patience with yourself and do not overstress yourself. Learn to say no. Learn to rest when you need it. It is critical for your health.
I hope that helps some!
~Ski
NGDF Assistant Online FacilitatorHi…My name is Kerri and I live in Tulsa, OK. I have just been diagnosed with Graves Disease. I really don’t feel sick, I’m just tired and have pretty bad tremors. My Dr. gave me the 3 options for treatment and I had pretty much made up my mind to do the Radioactive Iodine pill until a friend approached me about that. She didn’t think that was the best possible option, she thinks that I should do the medication and hope that I go into remission. I’m just curious to see what everyone else has done. From what I have read, there is only a 20 to 30 percent success rate for the medication. I welcome all opinions. This is a little scary.
Thanks so much!
Hi Kerri,
Welcome! We’re glad you found us. First I want to say that you’re doing the right thing, seeking out information on all your options. There are some great books the NGDF recommends to find out all about thyroid disease in general and Graves’ Disease in particular. The best one focusing on Graves’ is Graves’ Disease: In Our Own Words, which was compiled by Jake and Nancy (our fearless leaders) from posts and responses right here as well as information from some of our bulletins and also input from our medical board of experts. Graves’ Disease is complicated, both its effects on us and treatments, and it’s best to know way MORE than you think you want to find out.
Now, as for the fact that you “really don’t feel sick.” I must say I’ve heard that a lot, even out of my own mouth at certain periods in my diagnosis and treatment. The problem with being hyperthyroid is twofold. First, it “amps us up,” so we have this delusion that we’re fine because our energy level is generally high. Second, it affects every single cell in the body, but we only feel the worst symptoms after it has done a great deal of damage because it causes the damage a little at a time. If we were to go from “well” to “sick” in a few days, the difference would be much more obvious. When I went from “sick” to “well,” I thought I would hardly know the difference. The truth was just the opposite, it was rather striking when it happened quickly. If you have bad tremors, you are pretty sick. You are tired because the hyperthyroidism is literally wearing you out. We are constantly at “11,” if you will, when a normal person might range between 4 & 7 in a typical day, depending on what’s going on. It’s like revving your car for hours and hours at a time. Everything might seem fine for a while, but at some point there’s going to be a “clunk” and the engine will give out.
Now, the three options and the choice between them (barring any specific issues you have precluding one or another) can be very complicated. All three have their pros and cons. It’s good to get information on all sides of all options, because you DO need to be completely comfortable with the treatment you choose.
I know that people have a general aversion to doing any treatment involving the word “radiation.” My mother-in-law thought she would take the ATDs for the rest of her life before she’d take radiation in a pill. Well, that’s fine for her to say, because she’s well and she does not truly have to live with the consequences of that decision. It’s an easy knee-jerk reaction to say “I would not do that!” without knowing the details. The amount of radiation we take in for RAI is equal to about one full day in the sun. We don’t exactly shrink from that under normal circumstances, so it helps to put it into perspective. Thyroid cancer patients usually have surgery to remove the thyroid and THEN they get an RAI dose that can be up to 20 TIMES what we are given for our therapeutic dose. Even *that* dose (20 times ours) is considered safe.
ATDs can be a very good option to get your levels under control so you feel as if you can truly think through your choices. It’s not permanent, you can stop taking them any time if it doesn’t work for you, or if you choose another option, and it can help to bring your levels into the normal range and relieve some of your symptoms. ATDs can be dangerous in the longer term, though, and it is usually not recommended to continue taking them for longer than one or two years. They are chemicals, and thus are processed in the liver. As we age and our liver is used again and again for processing medications, it can be less and less effective and it can also be damaged by the chemicals we take. Our liver cannot be replaced. Our thyroid can be replaced with synthetic thyroid hormone replacement.
You’re right, though, the numbers are somewhere between 20 and 30% that attain remission. And remission is temporary, so you will likely face the RAI or surgery decision at some point anyway. Some people have attained remission and maintained it for years. Perhaps that’s worth a shot. It’s entirely up to you! Don’t let your doctor tell you that you MUST do any one particular thing, because this is your body and you get to choose.
Oh, one additional note — when we take synthetic thyroid hormone, our body processes it just as it would process natural thyroid hormone from our own thyroids. We do NOT face the stresses to our liver with thyroid hormone replacement that we face with long term use of ATDs.
I chose RAI. I am glad I chose it, it worked for me. I tried ATDs for a short time, but I didn’t like the way they affected me. Still, please don’t make your decision based in any way on what people here have chosen — even if it’s what MOST people chose, it may not be right for YOU. You need to evaluate the options for yourself, because all have the capability of leading you to health. Just make sure you head out on the road, because long term hyperthyroidism is very dangerous. We suffer muscle loss, emotional effects, and our hearts and bones can be affected irreparably if we leave it untreated for too long.
Come back often, we’re glad you’re here!
~Ski
NGDF Assistant Online FacilitatorThere is a lot of information on this board and knowledge is a powerful tool in determining what is the best course for you. I too am opting for remission but I don’t have symptoms like yours to deal with. A friend of mine also had tremors and she elected to have the RAI and she has been healthy and going strong ever sense. She has been leading a normal life for 15 years now. Try not to listen to other people’s opinions that don’t have this disease. The facilitators are good at not giving their opinions just providing you with your options and what they mean and where to go to get additional information.
Good luck to you !!!Hi there. My daughter Lindsay now 16 was diagnosed with Graves at 14 but had it for a year prior to being diagnosed. She had severe migraines and tremors. We did the RAI right away and honestly was the best decision I ever made. Lindsay had RAI 1 week before her Freshman year and now is a Junior with excellent grades, editor of Entertainment section of the school newspaper, choir & jazz choir,so yes RAI was the best decision, no question.
She is happy and healthy, her levels are normal.
I had never heard of Graves so I did a ton of research and this bulletin was a blessing. Knowledge is power, so read all you can and you will make the right decision for you. -
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