[Ellen_B]

in reply to: Free Webinar on Clinical Trials! #1186463

this looks like a great program

[Ellen_B]

in reply to: All of a sudden I’m hypothyroid #1185701

Liz 1967 asked if your hormone replacement medication changed.
Are you taking a brand name of thyroxine? If you are, then you know that your medicine is made by the same manufacturer and the potency should remain the same. If you are taking a generic then you have to check when you refill that it is being made by the same manufacturer. There is suppose to be a 3 letter code on the label that identifies the manufacturer. The potency can vary for different brands as well generics.

I hope you find out the mysterious reason for your hypothyroidism soon.

[Ellen_B]

in reply to: All of a sudden I’m hypothyroid #1185700

Liz 1967 asked if your hormone replacement medication changed.
Are you taking a brand name of thyroxine? If you are, then you know that your medicine is made by the same manufacturer and the potency should remain the same. If you are taking a generic then you have to check when you refill that it is being made by the same manufacturer. There is suppose to be a 3 letter code on the label that identifies the manufacturer. The potency can vary for different brands as well generics.

I hope you find out the mysterious reason for your hypothyroidism soon.

[Ellen_B]

in reply to: All of a sudden I’m hypothyroid #1185699

Liz 1967 asked if your hormone replacement medication changed.
Are you taking a brand name of thyroxine? If you are, then you know that your medicine is made by the same manufacturer and the potency should remain the same. If you are taking a generic then you have to check when you refill that it is being made by the same manufacturer. There is suppose to be a 3 letter code on the label that identifies the manufacturer. The potency can vary for different brands as well generics.

I hope you find out the mysterious reason for your hypothyroidism soon.

[Ellen_B]

in reply to: Stored thyroid tissue after TT? #1185157

Hi all,
I agree it is a difficult task– finding out the how’s and why’s one levels are just all over the place. Could finding out where the T4 conversion takes place tell us something about the how’s and why’s? T3 is more active than the T4. I am not sure the gut is where the T4 is mainly converted to T3. It may be just one (and only some) of the places. I have read that T4 is converted to T3 as blood containing T4 passes through the liver, kidney, muscles and other organs. Almost all tissues contain deiodinase enzymes so T4 gets converted into T3 in almost all cells.

What does this information have anything to do with finding a reason– the cause of why one’s thyroid hormone levels are fluctuating? Is it even important to know what the levels are of your T3? If it is which test can be done to find out.?

I admire your (Sue and Her Zoo’s) style–looking for an answer by means of research, study and hypothesizing. I do not consider you attitude of “not accepting” a fault. It’s the never give up attitude of yours and others that can lead possibly to an answer and to getting and feeling better. You set a find example for all of us to follow!

[Ellen_B]

in reply to: low TSH and normal T3 #1185126

Hi all,
A great question and lots of information.
The interpretation of lab tests must be left to the thyroid specialist. Each lab has its own (different) range of normal. In order to know the meaning of the lab test one must get the range of normal for each test from the lab where the tests are done. Getting a print out of the lab tests enable you to see the test results and to know what questions to ask and to hopefully understand the answers.

Why does the level of output of pituitary appear sometimes to be contrary to the level of the thyroid output? Is it because there is another player—the hypothalamus in there? I would be very interested in hearing an endocrinologist’s explanation. Providing an answer may not be simple for the reason that the endocrine system is so complex and complicated.

I wish you the very best!

[Ellen_B]

in reply to: Ft4 drops after stopping methimazole #1184989

Hello and welcome.
Not being a doctor I am unable to interpret your test results. Your doctor should explain the significance of changes of thyroid hormone levels within the normal range. Did your doctor do the other thyroid tests—TSH or T3? The other tests might provide a broader picture of what is going on with your thyroid.
Can you speak to your doctor and get answers to your questions? Have you noticed any changes in your symptoms? You should report that to your doctor too.
Other individuals may have had a similar experience when first being taken off their methimazole. If any one has,please let us know. It may not be possible, however, to compare experiences of others with yours without taking into account the different conditions and reasons for the removal of the methimazole.

[Ellen_B]

in reply to: New to this…need some support from others in my shoes #1184794

I find your observation very interesting. I have heard that too much thyroid hormone can cause eye lid retraction. It is a result of sympathetic nerve over activity which shows up as a staring (wide eye) appearance. Lowering the thyroid hormone can reduce the symptoms.
You mentioned that you had red eyes and swollen eye lids. Was that caused by high thyroid hormone levels too? You did say that those eye issues improved when your dose of levothyroxine was lowered.
I guess my question is are the red eyes and swollen eye lids caused by the sympathetic nerve over activity or by autoimmune TED or both? (In the case of TED antibodies attack the tissues.) Maybe the answer to this question is not fully known!

[Ellen_B]

in reply to: Rituximab #1184678

Thank you so much for doing all that research and so quickly. You have found a great deal of information from a good source. The article you found tells us who it is likely to work for and who not. Now we know how it worked in your particular case too.
Best of all I liked hearing your words “I am feeling normal now.” I am sure a great deal of credit for your feeling normal should be given to the surgeon but a lot of credit should go to you for the work you had to do to find a surgeon who could do it.

[Ellen_B]

in reply to: Rituximab #1184676

Liz 1967 and Karen 55,
I am interested in your comments (Liz 1967 and Karen 55’s) on orbital radiation. I know very little about it and would like to learn more. Recently I spoke to a Graves’ patient on the subject. This patient has had multiple eye surgeries over the years and is very familiar with TED and treatments. When I asked about external radiation she said yes, it will shrink muscles. She said, however, it is best to have it done during the hot phase because it will do a better job of shrinking the muscles. The two studies with orbital radiation that you (Liz 1967) brought to our attention showed successful out comes–but both were done on subjects who had active Graves’ Orbitopathy. Is it any kind of choice for patients in the inactive phase?

[Ellen_B]

in reply to: TED and auto immune system #1184682

Hello Klassey,
When thinking about adding any supplement to your diet the first thing you must do is check with your doctor. There is an organization NCCIH (National Center for Complementary and Integrative Health) that is engaged in doing solid research to see whether a particular product is effective. One must also be aware of the fact that some supplements can interact with existing medication and others are toxic at high doses.
On the subject of diet, as far as I know there is not good research so far for supporting any one diet for Graves’ eye disease—or even just for Graves’ disease for that matter.
I believe stress and fatigue do play a role in effecting TED because of what I have heard other Graves’ patients with TED tell me. They say under stress their eyes are worse and being tired even just at the end of the day they are worse.

Your question of what is the right thing to do for TED is a difficult one to answer when the aim is to slow or stop the immune response that is causing the eye problems. It does not make sense to boost that part of the immune system with some kind of an “immune booster”. We need an immune booster that speeds up generally the immune system and at the same time blocks antibodies that are attacking the eyes.

[Ellen_B]

in reply to: Iodine questions #1184556

Hello and welcome,
I myself have not been diagnosed with hyperthyroidism. However when tested my thyroid hormone is if anything on the high side but still normal. Eventually I may become hyperthyroid as my mother did very late in life. I can only give you information on what I have heard and read.
I would not say that most people in the USA who eat well are iodine deficient. Since most people in the USA have a well-balanced diet it is very unlikely that they would be iodine deficient. The daily requirement of iodine is 150 mcg of iodine. It is possible to get that amount in two grams (possibly half a teaspoon) of iodized salt. There is however a danger of taking too much iodine. Large quantities of iodine can actually cause the autoimmune thyroid disease (hyperthyroidism or hypothyroidism). Kelp has large quantities of iodine. Some people think they are iodine deficient go on a kelp kick and consume large amounts.
The thyroid needs iodine to make its thyroid hormone. Since you are hyperthyroid and your thyroid is already putting out too much thyroid hormone, consuming extra iodine could only encourage increased thyroid hormone production.
There are populations in the world that do not have the needed iodine in their diet. These people develop hypothyroidism and goiters—a condition which is preventable by adding iodine to their diet.
I have not been able to find information about whether the iodine test with the tincture of iodine is a reliable test. There may be a more reliable test using urine.
It may take a week or more for your increased dose of methimazole to be effective. In any event it is best to let your doctor know about your present symptoms.
I wish you the very best.

[Ellen_B]

in reply to: 3 year old with graves #1177616

Hello again,
You already have been told about Dr. Scott Rivkees’ videos
Here is the link to one of his videos
https://www.youtube.com/watch?v=-HttLLtRg7s
— entitled Treatment and monitoring of Childhood Graves’ Disease. What a parent should know.
Rivkees ran the Pediatric Thyroid Center at Yale—the first center of its kind in this country.
If you go to his video you will be able to get on the screen his email address for Yale and for Florida where he is now. Using his email address you could email him your questions and concerns.

Let us know your progress when you can.

I wish you and your family the very best.

[Ellen_B]

in reply to: 3 year old with graves #1177614

Receiving conflicting advice does not make it easy for you to choose the best treatment for your daughter. You need more information on the non-curative bone marrow problems which anti thyroid drugs could cause.
Also how urgent is it that you chose for your daughter a definitive treatment of RAI or surgery? It is good that you are at least able to look into those two treatments by speaking to a surgeon and radiologist.
There is no evidence that herbs are effective for Graves.’ It definitely should not be a replacement for the standard treatments you are considering. Before you consider giving your daughter herbs you should check with her doctor. The risks for herbs are not known. One of the risks you mentioned might be interference with thyroid meds.
Do you need yet another opinion to weigh all three options? It is important that the doctor that is giving you advice is knowledgeable about your daughter—what unique factors need to be considered in her case?
My words are just an echo of what others here have already said. I hope at least it helps to reinforce the direction of your research.

I wish you the very best.

[Ellen_B]

in reply to: Methimazole and weight loss #1184517

Hello Mo,
Have you had your thyroid hormone levels tested since you have been on the methimazole? Where are your thyroid hormone levels now?
The thyroid both makes thyroid hormone for the body’s use and stores thyroid hormone. Some of the thyroid hormone the thyroid makes goes into storage. The body must get rid of the stored hormone before the thyroid hormone levels begin to drop. That can take several weeks. Are you experiencing the other symptoms of Graves’ disease? If you are it may mean that your thyroid hormone levels are still above normal.
Maybe your metabolism has been set to losing weight. Does it automatically reset itself to gain weight when your thyroid production slows down?

[Author]

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