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in reply to: Tips for eye strain ??? #1073270
Cathy,
I have used both the li magnifying glass as well as a full page magnifying lens by Baush and Lomb. I found the lit magnifyer to be the best for me because it really lit up the page. If you have good light you can use the full page magnifier just as well.
They do help a great deal and are well worth the price of picking one or both up.
in reply to: How important is TSI level for decompression? #1073397Actually there is current data to say the TSI test is not really of much use and many doctors are stopping it. Nancy and I will be rewriting the NGDF book "Graves’ Disease In Our Own Words" and we will be rewriting that section of the book to state that many doctors no longer perform this test.
Perhaps that is why they will not do the test in Canada?
in reply to: Anyone that tried natural methods/diet? #1073648So please, Jake, can you tell me what my readings really signify to you and point me in a direction that makes sense?
Actually, no I cannot nor will anyone here tell you what your tests mean. Not being difficult or not wanting to help, but your tests are best interpreted by your doctor. You see it can all be skewed by what else is going on in your system and what meds you may be taking. Both prescribed and over the counter. What your tests show are really only a very small part of what is going on. It is like driving a car while wearing blinders. You can only see what is ahead of you and not what is also going on all around you. Your doctor looks at everything not just your tests. Your tests tell him what is happening there but not what else is going on with your system. So no I cannot tell you what they mean or give you a course of action.
Also, I have a real concern about subjecting my body to Radioactive Iodine; I find it difficult to believe that this course of treatment targets only the thyroid and does not do harm to the host.
RAI is radioactive iodine. The thyroid is the only organ that processes iodine and that makes it target the thyroid and nothing else. That being said, the excess radiation is gotten rid of by your sweat and urine. So for a small time your bladder will hold some excess radiation until you void. That is why some of the precautions are in place.
It also concerns me that RAI involves so many cautions, because if this is a safe, responsible treatment why is it so dangerous to other inhabitants of my household?
You will radiate some radiation that is being held in your thyroid and bladder. That is why it is wise to keep away from small children and pets. Even though it is a small amount there is no need to expose them if you do not have to.
If I opt for surgical removal of my Thyroid, is it effective?
Very effective. But you must remember it is considered major surgery. Your levels will drop right after surgery because your thyroid is gone and it is not going to release any stored up hormone.
Lastly, the removal of my Thyroid will make my system slow down to the point where I will have to take another drug for the rest of my life to regulate the hypo effects. I’ve read that this is far easier to control than hyper, yet there is a period of adjustment. I am really confused and hoping you can provide me with some advice. Thanks so much.
Once again you must remember that your thyroid is dying off. If it runs its course and dies off you will still have to take replacement hormone for life. It is easier to control hormone levels after thyroidectomy because your thyroid is not there releasing stored up hormone.
I hope this helps.in reply to: Anyone that tried natural methods/diet? #1073643This is actually a very old argument on treatment of Graves’ disease. That it can be “cured” if you change your diet, take herbs, supplements , etc. But as has been stated by all in this topic thread, Graves’ disease is an autoimmune disease.
As such, for some reason our bodies have identified the thyroid as a threat to our lives and our immune system goes into attack mode to kill off the thyroid. In so doing, the thyroid fights back by releasing thyroid hormone. Excess thyroid hormone can wreck havoc on our bodies. We lose bone density; muscle mass and our systems can run in hyper states for a long period of time. Losing muscle mass, can cause another myriad of problems. The heart is a muscle and can be effected just as can leg or arm muscles. Loss of muscle mass of the heart can cause other problems up to and including death.
You are correct that the doctors do not fully understand autoimmune diseases, and as such they have to rely on treating the symptoms to keep them in balance to help keep the patient healthy and alive. A diabetic’s body has shut down the pancreas and they need replacement insulin to survive. Doctors do not treat the pancreas; they treat the symptom of low insulin by replacing insulin in our bodies. A thyroid that is under attack by antibodies produces excess thyroid hormone that causes drastic effects to our bodies. So the doctors treat the symptom of excess thyroid hormone with antithyroid drugs. To reduce levels in our bodies to a normal level.
What many alternative followers and practitioners’ often believe is that, ”destroying a functioning thyroid “ is a bad practice to follow. Problem is that the thyroid is not functional. It is diseased and is slowly being killed off by the body’s immune system. It is not healthy. It is diseased. Many people tell others that the doctors are trying to kill off a perfectly good organ, when the problem is with the immune system, not the thyroid. But in fact the thyroid is damaged by the immune system.
That being said, there is proof that a small percentage of people with Graves’ disease will go into remission on their own, independent of whatever treatment plan they have followed. If you were one of the small percentage that this has happened to, you can attribute it to your changing your diet, deep cleansing, etc.. The same would apply to those who did absolutely nothing, or followed some other form of self or alternative treatment. I am not discounting what happened for you, just stating you may have been in that small percentage of folks who would have gone into remission no matter what.
The problem is that the greater percentage will not go into remission and will need antithyroid drugs, Radiation or thyroidectomy to treat the symptoms of over active thyroid, (Graves’ disease) to get their body back into normal ranges. Many newly diagnosed people are afraid of the diagnosis and accepted treatment plans. They will try almost anything to avoid proven treatment options. They will reach out to those who tell them they can cure their Graves’ disease by doing this or that because, “It worked for me and it may work for you too.”
Problem is, while they are trying other treatments, the large majority who will not go into remission, continue to get sicker and sicker. Treatment of longer stages of untreated Graves’ disease usually has to be more aggressive to treat the symptoms of long periods of hyperactivity.
They need to know that there is a small chance of spontaneous remission. That is why doctors often treat with antithyroid drugs for a period of six to eighteen months then back off of the ATDs to see if the thyroid levels remain stable. If they go back up, the person is probably not in the small percentage that would have gone into remission. Even in your case the time you spent on ATDs may have been enough for your system to go into remission.
We are often told that RAI is the last treatment of choice in Europe and that used to be true. In recent years more European doctors are prescribing RAI because it is a proven treatment plan that works and has a very long history of success. Yes it kills off the thyroid or a large portion of it. But the removal of the ability of the thyroid to release thyroid hormone is then observed and replacement hormone is prescribed.
What the average person with Graves’ disease needs to know, is their thyroid is not a healthy functioning thyroid. It is slowly being killed off by the body’s immune system. Just at a slower rate. The problems with fluctuation thyroid levels while the thyroid dies an untimely death due to antibodies can cause major problems with our bodies as the doctors try to replace thyroid hormone that is fluctuating making it hard to treat and keep levels in a normal range.
I am glad you have gone into remission. However, all people with Graves’ need to be followed to see how their levels are in their bodies. If they continue to be high or fluctuate, the doctors have to treat the symptoms. That is currently the only treatment for autoimmune diseases. Until they discover how to trick the immune system into turning off and stop attacking the thyroid, the symptoms need to be treated. Until that time the thyroid will continue to die off a little at a time due to the attack by the antibodies. When that day comes, those who waited for a day when the doctors can turn off the antibodies will be left with what is left of their thyroid. Not a fully functional healthy thyroid. A thyroid that has been damaged do to attacks by antibodies.
They will not have fully functional thyroids like many state to be the case. They need to know until that day, when antibodies can be shut off, their thyroid is being damaged. Twenty four hours a day, seven days a week. When and if the doctors can find out how to turn off the antibodies, they will have a thyroid that is damaged and they will have to accept treatment from that day on to make them well.
Regards,
in reply to: muscle/joint pain #1073742Hi and welcome MW.
When we are hyper with Graves’ disease we experience muscle mass and bone mass loss. Those two things by themselves are enough to cause muscle pains. They will get better as your levels even out. This will take time. We have to remember we do not get to the point we are at overnight. We do not get better overnight.
As for the RAI. It will depend on the dose you are given, how long and what precautions you will need to take. Generally it is three to four days staying at least six feet away. No sharing food or plates, eating with plastic on paper plates preferred. Not sharing a bathroom and flushing at least three times after each use. Sleeping on a sheet and washing the sheet daily in hot water with a double rinse.
Other than that the doctor should tell you exactly what to do.
in reply to: Is any of medications safe for breastfeeding? #1074058Ask your pharmacist. They are experts on what is safe or what level of meds can cross the milk barrier to your breast milk. They are also way mre up to date on the effects of drugs that can cross over to milk.
in reply to: TED symptoms and temperature #1074088Rob,
When we use the eye drops they provide a great deal of help. One thing my doctor told me that made sense was to use the drops everyday. How well you use the drops today will depend on how well your eyes will feel tomorrow. A problem is when our eyes fell good we do not use the drops.
So use them on day one, on day two they feel good so we do not use them. On day three they hurt or are dry. That is because we did not use the drops on day two. Using them every day will help with the dryness and help to keep your eyes feeling better. A side benifit is that the daily use of drops help to keep the cornea wet and prevents problems.
I am not sure why temperature would change how buggy they feel of look to you. But if they are dry it can cause swelling.
Use them drops and watch for your eyes to feel better in the long run.
in reply to: GD and stomach issues #1074471Amy,
I did not see in your posts if your son is being followed by a pediatric endocrinologist. Ped Endos are better educated and equiped to treat and know the effects of Graves’ disease on a youth. Even though he is 16, he is still developing and when you facter growth hormones, thyroid hormones and just plain stress into the equation, a pediatric endo may be just what you are looking for.
They may also be able to help with the mental aspect of the disease an his age. The anxity that comes along with Graves’ is hard for an adult let along a teen. Has that aspect been looked into?
in reply to: RAI VS REMOVAL OF THYROID #1074975When considering tyhroidectory, another consideration is that the doctor uses a nerve probe for the vocal cords. One risk of surgery is damage to the nerve that feeds and supports the vocal cords.
They put a probe on the nerve and when they get close to it during the surgery it emits a beep letting them know that they are close to the vocal cord nerve. When the doctors use this probe the chances of vocal cord damage drop to almost nil.
Make sure you select a doctor that uses the probe in the thyroidectomy surgery.
in reply to: Update on Daughter #1075083Good to hear from you Janet.
Yes the treatment choice is very personal. I will pray for her continued wellness. I am gld to hear she is feeling better and we are only a click away for any questions.
in reply to: Risk taking Decongestants/Cough Suppresants? #1075085It actually depends on where you are in the treatment process. Most over the counter meds and syurps can be taken. A call to your doctor cannot hurt but a visit to your pharmacist is best. They know what meds you are on, the interactions and such. They can tell you what is safe to take.
One doctor that presented at a conference recommended the short acting (4 hour) doses. Reason being if it really bothers your or interacts funny it will only last 4 hours as opposed to taking a 12 or 24 hour dose. Yes we need to take it more often but the chance of making you feel worse will only last 4 hours as opposed to 12 or 24.
in reply to: Newly Diagnosed #1075132There are a few things to consider. First is Anti-thyroid drugs are fairly cheap. That is good. Another is some pharmacies are now offering low cost generics and that may help even more. Blood tests will run you up as the T3, T4 and T3/T4 conversion tests are expensive. However talk to your doctor and see if they can cut you a break and let you pay at what the insurance companies pay. That will cut the cost at least in half.
You stated that you just found out you are both hyper and hypo. Talk to your doctor to see if the hypo can be considered a new diagnosis that took place while you were covered and you may be able to get coverage that way.
in reply to: After your dx, what about your job? #1075139OK,
I found hte link to the article I wrote on this subject.
http://www.fabjob.com/tips169.html
The article is a few years old but still as valid today as the day I wrote it for publication.
in reply to: After your dx, what about your job? #1075138I am looking on line for an article I had published on this exact subject. I will post it here when I find it. If not I have my copy of the article before it was published.
Bottom line is your employer cannot ask you if you have health issues and it is up to you to make the decision to tell them. I will find the article.
in reply to: sort of a mystery #1075160It can be a great mystery. This thing we call Graves’ disease. Have the doctors considered that what may be "normal" thyroid levels, may not be normal for you?
To get a normal range they take a large set of tests, some high and some low, to come up with an average. I tested in the "normal" range for years and felt much as you did. My doctor finally upped my thyroid levels to read at the "high normal" rates and I felt much better. Now running high normal causes other problems that need to be addressed. Such as increase bone loss and muscle mass loss.
But you may have been a high normal when you came down with Graves’ disease and now they are running you in the normal range which may be low for "you".
It does not hurt to talk to your doctor about this. Also ask how you body is converting T3 to T4. Some people do not covert well and may show a normal reading when their T$ is actually low. The doctors need to run a full thyroid panel, not just TSH which some insurance companies think is sufficent.
Jake George
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