GeekLady
May 19th, 2007, 12:52 PM
I go for the iodine uptake test this week. The endocrinologist has already explained that if I do have Graves, I will need to have the iodine treatment.
Has anyone tried anything else, like anti-thyroid meds or beta blockers?
I'm 51 years old and up until last Fall, have been very healthy despite smoking for 32 years. I quit 2 years ago and everything has gone downhill since. I didn't even have a medical doctor.
In October I started getting hives and angioedema (facial, mouth, tongue and throat swelling up). I waited a few months but finally found an MD who sent me to an allergist and then to an endocrinologist.
I'm scared out of my wits. I'm displaying the majority of Graves' symptoms, except instead of weight loss, I'm at an all time high.
Any advice would be greatly appreciated. I don't want to reject treatment if it is necessary but killing my thyroid?? Sounds kind of crazy to me.
Anyone who has been through it, please.. if you would do it over again, please let me know. Or what you would do differently.
GeekLady :eek:
GD Women
May 19th, 2007, 04:20 PM
All three treatments have their draw backs.
Graves' Disease can cause complications with surgery if a person is untreated or levels have not been successfully managed, because trauma can make the antibodies flare up causing thyroid hormone levels to go hyper . This can add complication to the recovery process or lead to thyroid storm.
Surgery there is a chance for the thyroid to grow back. The thyroid gland wraps around the base of the throat in a butterfly shape. Thyroid surgeons tend to leave a portion of the thyroid intact, in order to avoid damaging parathyroid's or the nerve that runs through the thyroid that works the vocal chords. Even with the most meticulous surgery, small amounts of thyroid tissue are often left behind to help preserve the integrity of critical structures that lie beneath the lobes of the thyroid. How much is left will influence whether you you remain hyperthyroid or whether you go hypothyroid.
About 10% of the patients who opt for surgery have normal levels of thyroid production. It is a wait and see issue. A doctor could make a prediction but ultimately you have to wait and test your hormone levels to determine whether or not you are going to go hypothyroid.
When some thyroid or residue tissue is left, we may not have to go on meds. or dose might not be all that high, for there might be some thyroid function. Or we may just need meds until thyroid hormone levels are back to normal after surgery. However what is left or the side that is left, might just be enough to render us hypo, even if its just a tiny bit hypo then meds will be required in which can occasionally throw off replacement hormone needs. The goal is render Hypothyroidism after a total thyroidectomy, then thyroid hormone must be taken for life.
After surgery thyroid levels can fluctuate. Thyroid antibodies can persist in the blood circulation for 2-3 months and can cause effects on residual thyroid tissue, and thyroid tissue cells in which thyroid tissue can grow over time. It is important to have thyroid function tests done every month after surgery for at least the first six months. When levels are stable then thyroid function tests can be done every six months.
ATDs generally will not give remission to a very hyperthryoid person. Liver disease and agranulocytosis are the most serious side effects. Agranulocytosis is a decrease in segmented neutrophils. Segmented neutrophils, which are also called granulocytes or segs, are a type of WBC. If the neutrophil count falls too low, the immune system can’t protect us from disease. A common symptom is sore throat. Patients are advised to call their physicians if they notice sore throat symptoms, especially if no other signs of respiratory infection occur. The physician can order a WBC count to check for agranulocytosis. Symptoms of liver damage include nausea and jaundice.
Minor side effects include rash and hives. These are also dose related and can occur as hyperthyroidism improves and the ATD dose needs to be reduced. Patients with rashes usually respond well to another ATD or a dose reduction. Patients on ATDs can also develop a drug-induced form of lupus that resolves when meds are discontinued. PTU has also been associated with the development of ANCA antibodies. These antibodies are seen in several autoimmune vascular diseases. However, these antibodies resolve when PTU is discontinued.
Other down factor is relapse. Pregnancy or the stress of bereavement or trauma will cause a relapse. Certain factors are also associated with relapse such as smoking and the presence of high levels of TSI.
The more relaps the less chance of going into perminate remission.
RAI RadioActive Iodine, typically a treatment form of iodine, I131. We can take a dose of I131 (RAI) and destroy thyroid cells because the only place that iodine goes to in the body is the thyroid gland. By destroying thyroid cells the possibility of being hyperthyroid can be eliminated.
It is assumed that the ablative dose of RAI destroys all or most of the thyroid tissue, however it may not. It may destroy just enough to assure that you are no longer hyperthyroid, but there can still be significant thyroid tissue left. The remaining tissue can be stimulated to produce more excess hormone by increases in antibody action, and can also eventually be destroyed by antibody action. The normal progression of the disease is for the antibodies to wear the thyroid cells out over time.
Some doctors try to adjust the dose of radioactive iodine to destroy only enough of the thyroid gland to bring its hormone production back to normal, without reducing thyroid function too much; others use a larger dose to completely destroy the thyroid. Most of the time, people who undergo this treatment must take thyroid hormone replacement therapy for the rest of their lives. Concern that radioactive iodine may cause cancer has never been confirmed. Radioactive iodine is not given to pregnant or nursing women, because it crosses the placenta and enters the milk and may destroy the fetus's or breastfed infant's thyroid gland.
The radioactive form of iodine (I-131) has been used for at least 60 years to treat hyperthyroidism and thyroid cancer, and in small doses, to test thyroid function. Since iodine is a natural substance your thyroid uses to make thyroid hormone, radioactive iodine (RAI) is collected by your thyroid gland in the same way as non-radioactive iodine. Since the thyroid gland is the only area of the body that uses iodine, RAI does not travel to any other areas of the body, and the RAI that is not taken up by thyroid cells is eliminated from your body, primarily in urine. It is therefore a safe and effective way to test and treat thyroid conditions. Extensive studies have shown that patients who have been treated with radioactive iodine are not an increased incidence of thyroid cancer or any other type of cancer. Children and young adults who have undergone this form of treatment, have also been carefully studied, and there do not appear to be any increased cancer risks.There have been many long-term research studies done, including longitudinal ones that followed patients for a long, long, long time. In the most recent one that I know of, researchers looked at the death certificates of tens of thousands of people who had done RAI in the U.K. over the decades, looking to see if there were issues that could be attributed to the RAI. What they discovered was that it was apparent that "being hyperthyroid" during a lifetime had a greater impact on cause of death.
RAI is not "toxic" to the body, in general. It is toxic to thyroid cells into which it is taken. If it is not taken into a thyroid cell, it is eliminated within a day or two from the body. That is why it is such a useful medical tool: it's use focusses directly on thyroid cells, leaving other cells alone. And it has a very short life span. It has never been shown to harm us, long-term. Hyperthyroidism does. The medications like PTU do not affect only the thyroid. Their metabolism in the body creates other compounds which can adversely affect other parts of the body (bone marrow, liver for example). They are reasonably safe, and generally much safer than hyperthyroidism is, as well.
The antibodies continue to do their work and this is why we need to continue to be monitered. Minor adjustments of replacement hormone can put us rapidly back into normal levels so that we can continue to feel well.
This is getting way too long, there is much, much, much more but I think you get the idea by now.
GeekLady
May 19th, 2007, 04:42 PM
Thank you, I appreciate the information. I had a high thyroid hormone level (still in menopause, if that makes a difference?).
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