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Hello Nancy,
It is wonderful to hear you will be able to answer posts while Kimberly attends a meeting. I will also add another helping hand while Kimberly is away. It is hard to believe that I have been with the GDATF for as long as four years answering phone calls and emails. Previous to that I was twelve years doing the same thing with the American Thyroid Foundation. That too seemed timeless–I think because the work is so rewarding. The GDATF aim is to increase the understanding of Graves’ disease and its treatment. I believe the Forum provides one more very valuable dimension and a means to accomplish that task.Sincerely,
Ellen Brightlyin reply to: Pregnancy post RAI #1063459Hi Jen,
Studies looking for adverse effects on the offspring of treated patients do not show adverse effects. The reason no problems are picked up is the amount of possible risk (very small) is less than the spontaneous rate of genetic abnormalities that do occur normally. The studies I am talking about were done prior to 1997. Perhaps later studies have shown something different.The amount of time that should pass after RAI treatment before conception used to be a year now it has been shortened to six months. Actually there is no logical basis for any recommendation because all the eggs are formed and present and will be equally exposed at the time of treatment. Once a month one or two of the dormant eggs are simply chosen to mature and transported into the uterus. All would agree that women should avoid conception during the menstrual cycle occurring at the time of radioiodine treatment.
There is something you can do to minimize the exposure of the radioiodine to the ovaries since most of the exposure to the ovaries is through the urine. Drink plenty of fluids and maintain an empty bladder for first few days after treatment
It is important to remember the other two very important reasons (which you yourself have already mentioned) for waiting to become pregnant. They are being able to get more healthy again and to get your thyroid hormonal levels back to where they belong.
Ellen Brightly
Administrative Assistant
Graves’ Disease Foundation
Toll-free – (877) 643-3123
400 International Drive
Williamsville, NY 14221
Email: Gravesdiseasefd@gmail.com
Website: http://www.NGDF.org <http://www.ngdf.org/Hi Christina,
Just a comment about antibody tests and Graves’ disease. There are two antibody tests (TBII and TSI) specifically for Graves’. Only if you have Graves’ disease will they be positive. However, not everyone who has Graves’ disease will test positive for these antibodies. Only 85 to 90% of Graves’ patients will test positive for TBII and TSI antibodies—that means that as much as 15% could have Graves’ and none of these antibodies. Negative test results are more likely to occur if the hyperthyroidism is mild.
Did you have the antibody test done when you were first diagnosed? Does the antithyroid medication affect the immune system and antibody level? Too many questions without definite answers!
In any case I wish you the very best!Ellen Brightly
Administrative Assistant
Graves’ Disease Foundation
Toll-free – (877) 643-3123
400 International Drive
Williamsville, NY 14221
Email: Gravesdiseasefd@gmail.com
Website: http://www.NGDF.org <http://www.ngdf.org/in reply to: Remission after 5 months?? #1063498First of all I don’t think I am going to say anything different than what has already been said.
No available test can predict whether a patient will go into remission. None are sensitive or specific enough. One doctor says if the antibody test (thyroid-stimulating antibody) is positive the chances of remission are very low—but even patients with negative tiders have a 20% to 50% chance of relapse.
As far as the optimal duration of therapy goes doctors used to think that the longer a person was on antithyroid drugs the greater the chance of remission but it turns out staying on the antithyroid drugs beyond a year to a year and half does not increase the chances of a remission. If that is the case staying on the antithyroid drugs a year seems reasonable.
It is more sensible to taper the antithyroid drugs off than to stop then abruptly. Relapses if they do occur are most likely to happen within the first 6 months. After stopping the drugs thyroid hormone levels should be checked every 4 to 6 weeks.T3 should be monitored along with T4.
I can well understand your desire to be given a chance to express your feelings to your doctor on the subject of your being taken off of your medication at this time.
Ellen Brightly
Administrative Assistant
Graves’ Disease Foundation
Toll-free – (877) 643-3123
400 International Drive
Williamsville, NY 14221
Email: Gravesdiseasefd@gmail.com
Website: http://www.NGDF.org <http://www.ngdf.org/I am glad you were able to talk directly with your endocrinologist. I do wished you found it easier to talk to her –but at least you know exactly want she wants you to do.
It is true that that there isn’t one set of numbers for the upper and lower range of normal for the TSH for every lab. The reason is the TSH is measured by immunoassays. Unlike chemical reactions that precisely measure the amount of glucose or sodium, immunoassays are very dependent upon the antibody used to measure TSH. These antibodies are produced by many different laboratories. Some laboratories use antibodies which they produce themselves, while most use commercially available antibodies sold in “kits.” These commercial kits because they are using different antibodies as well as different immunoassay techniques, may have slightly different normal ranges.
The kits may also give slightly different results depending upon the impurities in the local water supply, the temperature of the laboratory, and similar factors. On top of that most laboratories will test the kits on a large group of normal patients. It makes a difference what group they chose. If they exclude subjects in the group that have anti-thyroid peroxidase antibodies then the upper limit of normal will be lower.
Thus according to a thyroid specialist (Dr.Douglas Ross at MGH Boston) the upper limit of normal for theTSH may vary from 3.5 to 6.0 mU/L depending how a laboratory chooses to define “normal”. The lower limit of normal in most laboratories is 0.35-0.6 mU/L.
I hope these too many words shed a little light on why the TSH is not standardized. With all the hard work and large amount of effort that I can see you are putting out to find out the answers to some difficult quesitions you deserve a reward–that is to get better VERY soon.Ellen Brightly
Administrative Assistant
Graves’ Disease Foundation
Toll-free – (877) 643-3123
400 International Drive
Williamsville, NY 14221
Email: Gravesdiseasefd@gmail.com
Website: http://www.NGDF.org <http://www.ngdf.org/Will you be talking to the nurse of your primary care doctor about what to do about your thyroid treatment? I believe you said your nurse is going to talk to the endocrinologist and then report back to you. Would it not be better if you could speak directly to your endocrinologist, hear her interpretation and ask more questions? Find out from her what she thinks about your fluctuating TSH numbers. She may also have questions to ask you.
You could ask her what her experience has been with her patients on antithyroid drugs. Being an endocrinologist she should have treated many thyroid patients. The treatment decisions for thyroid are not always simple and you need to get advice from the best possible source.
Ellen Brightly
Administrative Assistant
Graves’ Disease Foundation
400 International Drive
Williamsville NY 14221
Toll-free — (877) 643-3123
Email: Gravesdiseasefd@gmail.com
Website: http://www.NGDF.orgin reply to: kind of excited #1063553It’s great to hear that your levels are going down. I believe that only 50% of individuals who take antithyroid drugs can get there levels down–so you already are in the right group. Let’s hope your good luck continues and that you are in the right group again–that is in the next 50% of the 50% who are able to go into remission. I have all my fingers and toes crossed to make sure the good luck goes your way!
Ellen Brightly
Administrative Assistant
Graves’ Disease Foundation
Toll-free – (877) 643-3123
400 International Drive
Williamsville, NY 14221
Email: Gravesdiseasefd@gmail.com
Website: http://www.NGDF.org <http://www.ngdf.org/in reply to: Hello from England, struggling with treatment #1063535Hello Rebecca,
I do not know the statistics for how many people regain lost muscle mass. I can tell you about the experience of one thyroid patient whom I used to work with very closely. She came down with Graves’ in her mid twenties right after she got married. She chose a thyroidectomy because she wanted to start a family right away. She was able to get regulated in about 6 months and very soon got pregnant. She had two children four years apart.
I did not meet her until after 20 years had gone by. By that time she certainly had regained her strength. In fact she had (and still has) more energy than anyone I ever knew. She worked very long hours and required less sleep than most. Every day before work she ran 5 miles.
Another positive note. Her severe eye problems cleared up after she got pregnant. One cannot count on that happening every time but is nice to hear good things happen to Graves’ patients.
The reason I am telling you all this is to let you know that is true that is possible with Graves’ to become less out going and less energetic—but only temporarily–and later to regain it all and more back again.
Ellen Brightly
Administrative Assistant
Graves’ Disease Foundation
Toll-free – (877) 643-3123
400 International Drive
Williamsville, NY 14221
Email: Gravesdiseasefd@gmail.com
Website: http://www.NGDF.org <http://www.ngdf.org/in reply to: Your highest TPO reading? #1063619I have a little bit of information to share with you on why Graves’ patients test positive for anti-TPO antibodies. This is Dr. Douglas Ross’ explanation. “TPO [thyroid peroxidase] is one of the enzymes within the thyroid involved in the synthesis of thyroid hormone. In Hashimoto’s thyroiditis, when white blood cells called lymphocytes attack the thyroid gland and TPO is exposed to the blood stream, the immune system makes antibodies against TPO.” This process is called lymphocyte-mediated inflammation. This inflammation and the formation of antibodies occurs in 90-95% of patients with Hashimoto’s thyroiditis. This same type of inflammation usually occurs in Graves’ disease as well. 60 to 75% of Graves’ patients may have these antibodies.
Anti-TPO is the most commonly ordered thyroid autoantibody test—one reason perhaps because it is inexpensive. I think (but I am not sure) it is an easy way when all other blood tests and symptoms point to Graves’ for doctors to confirm that your hyperthyroidism is autoimmune and therefore Graves’ disease.
I will end in saying that I hope the words here on this page help you to rest (if you can) more easily.
Ellen Brightly
Administrative Assistant
Graves’ Disease Foundation
Toll-free – (877) 643-3123
400 International Drive
Williamsville, NY 14221
Email: Gravesdiseasefd@gmail.com
Website: http://www.NGDF.org <http://www.ngdf.org/in reply to: Just a few quick questions! #1063607Hi Krystal,
It is very good that you have contacted the Bulletin Board and have let us know what your feels are. Many many Graves’ patients have experienced depression and gotten over the depression and been well again. Travelling the rocky road can be longer than we all wished.
We very much want to help you get through this difficult period. Talking on the phone might help both of us. I am sure for myself I would gain a better understanding of your difficulties and for you I would better be able to help you. If you wish to speak to me send me an email to Gravesdiseasefd@gmail.com. Please give me your phone number and the best time to call. You may also reach me by calling the toll free number (877) 643-3123 and leaving a message (ask for Ellen Brightly) on our office voice mail.
In any case let us know what your present course of action is even if it is to just let us know that you are trying to figure out what the next best thing is for you to do. We want to know.
I look forward to your reply on the Bulletin Board, email or voice mail.
Sincerely,
Ellen Brightly
Administrative Assistant
Graves’ Disease Foundation
400 International Drive
Williamsville NY 14221
Toll-free — (877) 643-3123
Email: Gravesdiseasefd@gmail.com
Website: http://www.NGDF.orgin reply to: Diet Support #1063707The daily requirement of iodine for individuals is 150 mcg which is equal, I believe, to be roughly a half a teaspoon (or two grams) of iodized salt. It may be a little more or a little less. You could check this out with a nutritionist. Too much salt is not good for anyone away for a number of reasons so eating more salt than necessary is not something to look for. Also Graves’ patients are putting out too much thyroid hormone and providing extra iodine would likely only add fuel to the fire.
As far as goitrogen containing foods (one of which belongs to the brassica family—such as kale and broccoli) are concerned, these foods are supposed to slow the thyroid down and possibly cause a goiter. However, you have to be iodine deficient (very unlikely for an individual eating a normal diet) and you have to be consuming large amounts (must be the mainstay of your diet) to be able to produce a harmful effect. It is possible for this to happen in underdeveloped countries but unlikely in the USA.
The long and the short of it is your conclusions as to what is a reasonable diet seems very sensible. Enjoy your food and feel better soon.
Ellen Brightly
Administrative Assistant
Graves’ Disease Foundation
Toll-free – (877) 643-3123
400 International Drive
Williamsville, NY 14221
Email: Gravesdiseasefd@gmail.com
Website: http://www.NGDF.org <http://www.ngdf.org/in reply to: Is this true? #1063763Hi Krystal,
It is definitely known that there is a genetic factor. The genetic factor is responsible for the production of antibodies which causes Graves’ disease. I don’t believe the gene has been identified yet. The proof of a genetic factor has been found in identical twins. If one twin develops Graves’ disease there is a 30% to 60% chance that the other twin will get it. It seems with or without stress Graves’ disease will surface. I have yet to hear a good answer to the question why we don’t enter the world with Graves’ disease if it is in our genetic makeup. Why does the Graves’ disease wait long after we are born –sometimes a very long time to make its appearance? Next question: If triggers are sometimes responsible for the time of onset, what are they and can they be avoided? For now the answers to these questions must be put off into the future.
Please continue to let us know your progress. I hope you start to feel better very soon.
Ellen Brightly
Administrative Assistant
Graves’ Disease Foundation
400 International Drive
Williamsville NY 14221
Toll-free — (877) 643-3123
Email: Gravesdiseasefd@gmail.com
Website: http://www.NGDF.orgin reply to: Can GD ever go away? #1063730Krystal, it is known that even after treatment (either RAI or thyroidectomy) the antibodies may remain in your blood.
Evidence of this is seen in individuals who received say in their late teens or early twenties RAI or a thyroidectomy and ten years later say get pregnant — they still have the antibodies in their system that can cross placenta and cause (sometimes—not always) the baby to be hyperthyroid in the womb and even hyperthyroid for a short time after the baby is born. The hyperthyroidism in the baby is not permanent because in a matter of weeks the antibodies disappear. The mother can have an antibody test (thyroid stimulating antibody) to assess the risk that the fetus will be hyperthyroid. Many times the mother- to-be (since she feels well) forgets to tell the doctor. Fortunately the baby can be monitored and if necessary treated. The mother is treated with antithyroid drugs which also cross the placenta.
So yes you still can have Graves’ (antibodies) but more important you can be made well.Ellen Brightly
Administrative Assistant
Graves’ Disease Foundation
Toll-free – (877) 643-3123
400 International Drive
Williamsville, NY 14221
Email: Gravesdiseasefd@gmail.com
Website: http://www.NGDF.org <http://www.ngdf.org/Hi Sarah,
I could not agree more with Kimberly’s advice,”…you definitely need to get into a doctor who can help you sort through your treatment options and get you back on the path to good health.
Do you need to have more information about how to locate an endocrinologist? I like the American Association of Clinical Endocrinologists’ website–www.aace.com. because under the doctor’s name you will be able to see all the doctor’s specialties including the one you searched for—thyroid dysfunction. Occasionally you can find a doctor who specializes in thyroid only.
You can get to the aace site easily by going to our website (http://www.NGDF.org.), click on the tab About Graves’ Disease and then Find a Doctor. By selecting a city you should be able to find a list of thyroid specialists to choose from in that city. If you live in a small city you may have to search in a city nearby that is larger to find one.
Most important that you find a thyroid specialist. If you need help, send an email to the Gravesdiseasefd@gmail.com giving me your phone number and a good time to call. You can also leave a message on our national office voice mail using the toll free number (877) 643-3123) and I will return your call.
Please let us know your progress. If you have difficulty searching for a doctor on your own I will be glad to walk you through the steps. We are here to help.
Ellen Brightly
Administrative Assistant
Graves’ Disease Foundation
Toll-free – (877) 643-3123
400 International Drive
Williamsville, NY 14221
Email: Gravesdiseasefd@gmail.com
Website: http://www.NGDF.org <http://www.ngdf.org/in reply to: hyper to hypo #1063777I have known personally many Graves’ patients who have had either the RAI or the surgery. Both did very well. None of them gained weight when put on the thyroid hormone. They did have to watch their weight by watching their food intake. After surgery or RAI they could not eat the same amount– all they wanted—as when they were first diagnosed with Graves’ disease. Some individuals do well on the antithyroid drugs—even go into remission (being normal for at least a year after stopping the medicine) and do not have to go on to RAI or surgery — and do not have to be put on thyroid hormone. (Your endocrinologist will let you know when you should reduce or get off your medication). You should definitely go to your endocrinologist, tell him your symptoms and ask to be tested so he can tell you what your present dosage should be. The goal should be for now to get your thyroid hormone levels normal and you might be one of the more fortunate ones that achieves that goal (even staying normal when taken off the drugs) on just the antithyroid medicines. The only way to find out is to try it and see how it works.
It is great to hear the good news about your nodule. If you have more questions about nodules (you may not need to ask with your positive results) email me your phone number (Gravesdiseasefd@gmail.com) and I will be give you a call.
You just have to take the one step at time (it’s not easy and we all wished it could be done much faster) and you will get there I am sure!
Ellen Brightly
Administrative Assistant
Graves’ Disease Foundation
400 International Drive
Williamsville NY 14221
Toll-free — (877) 643-3123
Email: Gravesdiseasefd@gmail.com
Website: http://www.NGDF.org -
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