[Ellen_B]

in reply to: new to aving Graves disease #1063960

Hi Sheila,
Did you have a radioactive iodine scan? I am not sure if it is necessary to diagnose Graves’ disease—probably not. The scan is done primarily when there is some additional structural problem such as a nodule. However, if you happened to have had a radioactive iodine scan it would provide important information. It would show whether the whole thyroid is putting out too much thyroid hormone in the case of Graves’ disease or whether only a small area is putting out extra hormone as is in the case of a hot nodule. Another possible cause of hyperthyroidism is a form of thyroiditis (inflammation of the gland). In that case the uptake of radioiodine would be low.
The wonderful thing to note is that you have already gotten over a very important and crucial hurtle — the diagnosis. You are now on your way to recovery. I wish you good luck with your appointment tomorrow.
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

[Ellen_B]

in reply to: Something I Never Expected #1063839

Hi Anna,
Your looking into changing estrogen hormone levels possibly effecting the levels of different forms of thyroid hormone is very interesting and should be investigated. I do not have an answer to that. I hope someone in the audience does. I am sure someone must be doing work on menopause and hyperthyroidism.
Another question you are sort of hinting at is, Does an irradiated gland ever recover any function? According to Dr. Douglas Ross (Thyroid Associates Massachusetts General Hospital, Boston) there are two instances when it does.
“First, shortly after radioiodine treatment, some thyroid tissue may become “stunned, “and for a short period, approximately one to six weeks, the thyroid may fail to produce adequate thyroid hormone. A few months after treatment the stunned tissue may recover.
[This is not your case since 30 years have gone by.]
“Second, over the long term, it is possible for small remnants of unaffected but normal thyroid tissue to grow and begin to produce sufficient thyroid hormone to allow either a reduction or elimination of the levothyroxine dose. RARELY, THE GROWING TISSUE WILL PRODUCE RECURRENT HYPERTHYROIDISM.
In general, however, once thyroid tissue has been destroyed by radioiodine, hypothyroidism is permanent.
The conditions which produce euthyroid sick syndrome are a variety of non-thyroidal illnesses including infections, trauma, surgery, myocardial infarction, malignancies, inflammatory conditions and starvation. It is highly unlike you have anyone of these conditions. If you have any questions ask your doctor.
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.org

[Ellen_B]

in reply to: frustrated by memory #1063842

Hi Julie,
Did you have the radioiodine treatment? How long ago? If so are you presently being regulated on synthetic thyroxine? Have you seen your test results? If not could you get a copy of them and sit down and discuss them with your doctor? When does your doctor want to see you again? You probably know that a change in your dose takes four to six weeks to get into your system.
There are a number of variables involved in getting regulated. One possible variable is different types of thyroid hormone replacement medicines. We just have to figure which variable(s) have not been attended to and deal with them.
I realize I have asked more questions than given you answers. If you find it easier to talk send an email to the GDF (Gravesdiseasefd@gmail.com) with your phone number. I will be glad to give you a call.

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

[Ellen_B]

in reply to: Allergy to Iodine #1063904

Hi All!
First of all I can see allergies to iodine is a very interesting and complicated subject.
I am including a short article (below) written by Douglas S. Ross, M.D., the Co-Director of the Thyroid Associates at Mass General Hospital Boston MA. I am hoping the article will clear up some of the misunderstandings about allergies to iodine or at least fill in some of the gaps. It was originally written in response to a patient’s question, Do people have allergies to different forms of iodine?

“Iodine is an essential mineral required for the synthesis
of thyroid hormone and widely distributed in foods, and
added to iodized salt. Radioiodine is administered as a simple
salt, sodium iodide-131. Patients do not have allergic reactions
to sodium iodide.

Radiocontrast includes many compounds to which iodine has
become organified. A small percentage of patients may have
serious allergic reactions to these compounds. Patients who
cannot have radiocontrast can safely ingest radioiodine.

Many people have allergies to shellfish or fish. The cause of
these allergies is not iodine, but rather several specific muscle
glycoproteins. Patients with shellfish allergies can safely take
radioiodine.”

That being said I can still well understand with your (Buttamama28’s) experience after RAI not wanting to have it repeated. Did the RAI treatments cause the release of some other substance that caused you to be sick?

I do not know what the form of iodine is –that is in (or is put in) salt. In a container of iodized sea salt it mentions potassium iodide. Would that be a form that an individual who is allergic to iodine could be allergic to? I don’t know. According to Ross sodium iodide in the radioiodine is ok.
With all this information I still have more questions. If possible it would be nice to know what form the iodine is in foods. Is it in the form of a salt (iodide) or something else that one can be allergic to?
The quest for more knowledge goes on.
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

[Ellen_B]

in reply to: Amitriptyline #1063978

I cannot give you any information from my own experience about Amitriptyline because I have never take Amitriptyline. Amitriptyline belongs to a group — tricylic antidepressants. Looking at the group as a whole the drugs do have side effects—not necessarily the ones you are complaining of. If you could get a hold of a Physicians’ Desk Reference (PDR) you could find out what side effects do occur with Amitriptyline. You can find the book in any library. The PDR is a source which your doctor should respect and would provide a good basis for a discussion.

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

[Ellen_B]

in reply to: Waaa… #1063962

Is your hair loss—alopecia universalis (total hair loss) or alopecia areata (patchy hair loss)?
It sounds like you are talking about hair thinning. Generally, hyperthyroidism results in thinning of each hair as well as accelerated hair growth and loss which may make the actual hair loss appear worse than it is.
Alopecia areata (bald patches) is thought to be due to autoimmunity—it is not caused by thyroid dysfunction but rather associated with thyroid disease. In this case treating the thyroid may have helped the hair problem but unlikely to have major benefits. If the condition worsens or persists a dermatologist should be consulted to determine the precise cause of hair loss and appropriate treatment.
I have heard of a clearer explanation of hair loss with hypothyroidism. In this case the mechanism to explain hair loss is an increase in the proportion of resting (or telogen) hairs, which are more likely to be lost with brushing or washing. Hypothyroidism frequently results in increase resting or telogen hairs. The treatment with levothyroxine usually results in improvement over 6 to 12 months.
One doctor (Dr. Douglas Ross) says that hair loss may be related to high, low or sudden changes in thyroid hormone levels. If that is the case I would like to think that getting the thyroid hormone levels where they belong and then stabilized would lead to less hair loss. Ask your doctor perhaps he has the answer.
My wish especially for you is to have your hair stop falling out.
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

[Ellen_B]

in reply to: methimazole side effects #1064752

Thanks for the correction and information on Ativan.
Ellen

[Ellen_B]

in reply to: methimazole side effects #1064750

Your recent posting on Sept 14th was I believe an update on what was going on July 27th. You were taken off methimazole—not switched to PTU and put on Ativan and long acting beta blocker.
It all seems to make sense what you doctor has done—taking into account what is known about the possible cross reactions of the side effects which may occur when switching from one antithyroid drug to another.
Minor reactions do occur in 15% of those receiving methimazole and 10% with PTU. According to one doctor (David Cooper) “if a rash develops it will sometimes resolve spontaneously (even with continued use) with or without the use of antihistamines to treat itching. Although switching to the alternative drug is another possibility, the cross-reaction rate may be as high as 50%. Some patients may simply elect to stop the offending drug and accept a definitive form of therapy.”

In the case of reduced white blood cell count switching is not recommended because of a cross reaction.
I hope you are successful in getting the change you need in your insurance.

If you have more questions or wish to speak to me directly send me an email Gravesdiseasefd@gmail.com with your questions and contact information.

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

[Ellen_B]

in reply to: I have another ?–re: exercise #1064091

Just a repeat of what is being said but I will say it anyway. According to Dr. Douglas Ross, Co-Director, Thyroid Associates, Massachusetts General Hospital in Boston, “Abnormalities in thyroid function have profound effects on the muscles. Hyperthyroidism is associated with muscle wasting and reduced muscle mass. There is also reduced efficiency of muscle contraction. This results in proximal muscle weakness in thighs and upper arms."
A confirmation you are doing the right thing by checking with your doctor to find out what exercise is recommended for you.

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

[Ellen_B]

in reply to: Recently diagnosed and concerned about weight #1064601

Hi Laura,
My posting on last Friday (Aug. 27th) was focused on the effect of soy on thyroid function and I did not mention food and levothyroxine interaction. Thank you ewmb for your immediate response and for mentioning it. Soy bean flour is on the list of foods that decreases the absorption of thyroid hormone. One pharmacist Jeffrey Low has said to minimize the risk of interaction, thyroid hormone should be taken on an empty stomach at least 30 minutes prior to eating. How much more time (than the 30 minutes) you should wait you should check out with your physician and your pharmacist.
I wish you well in all your wedding preparations.
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.org

[Ellen_B]

in reply to: Recently diagnosed and concerned about weight #1064598

Hi Laura,
I have not heard Graves’ patients being advised to stay away from soy products. The only concern I have heard about soy products with thyroid function is the possibility of soy causing a goiter and hypothyroidism.
So here is some information on soy. Soy is one of the foods that contains goitrogens.Other goitrogen containing foods are members of the cabbage family and cassava. However, for goitrogen containing foods to affect thyroid function one must be iodine deficient. It is possible for thyroid functioning to be effected if you live in a country with marginal intake of iodine and where the mainstay of food is one of the goitrogen containing foods. The typical American diet has plenty of iodine and a varied diet so this does not happen.
The flavanoids in soy are potentially goitrogenic. Studies have been done with individuals taking daily for two weeks two soy bean drinks. When the serum flavanoids were tested the concentrations were 4 to 30-fold lower than the levels required to inhibit the thyroid by 50%.
The question for you is how much of your thyroid is functioning after the RAI — may be very little. If that is the case soy can have very little effect. So the long and the short of it is you should at least continue to enjoy soy while trying to maintain your weight.
If my discussion has left you more confused and you would like to ask more questions let me know by sending an email with your questions to gravesdiseasefd@gmail.org I will then be glad to give you more answers.

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.org

[Ellen_B]

in reply to: endocrinologist #1064507

Taylor – With your computer, were you able to find a thyroid specialist? If you were unable to do it call the National Office using the toll-free number (877-643-3123) and someone (me) will be glad to walk you through the steps. The American Association of Clinical Endocrinologists site is especially good because under the name of each specialist you will see the list of all the specialties that the doctor specializes in.
If you have more questions let me know by sending an email with your question to gravesdiseasefd@gmail.org

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.org

[Ellen_B]

in reply to: Graves Disease & ADD in Children #1067355

Someone should be able to provide the answers to your questions about a child (your daughter) who has both Graves’ disease and ADD. You wanted to know if your daughter should be put on a new medication for ADD before her thyroid hormone levels are stabilized after a thyroidectomy.

The Graves’ Disease Foundation does have an individual who is an expert in children with Graves’ disease. Her name is Michelle Moraczewski. She has a teenage son with Graves’ disease. The best method to reach her is to send an email directly to her address below.

For Children and Graves’ Help Contact:
Michelle Moraczewski —
Email: michelle.moraczewski@norfolk.gov

I hope Michelle will be able to provide you with useful information
If you have any more questions or would like to just let me know your progress you may drop me a line—using the Graves’ disease email address.

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

[Ellen_B]

in reply to: Surgery done!! #1068584

Hi, Marie
Your story sounds very familiar. A Graves’ patient who is now 60 and who had a thyroidectomy in her late twenties told me that her memory of her thyroidectomy was that it was not difficult—or debilitating. She did remember after the operation, she said when she wanted to raise her head off of the pillow she had to use her hands behind her head to help raise her head. What really amazed me though– although I sat 3 feet way from her I never noticed her scar even though she wore low neck line blouses. Finally after working for several years I said you told me you had a thyroidectomy. Where is the incision? Only when I got up real close and she pointed out the incision could I see a very faint line or scar. Ellen Brightly
Administrative Assistant
Graves’ Disease Foundation
400 International Drive
Williamsville, NY 14221
Toll-free – (877) 643-3123
Email: Gravesdiseasefd@gmail.com
Website: NGDF.org

[Ellen_B]

in reply to: Neonatal Graves disease link for information #1069687

Thank you for bringing to my attention Chapter 76 in Werner & Ingbar’s The Thyroid: A Fundamental and Clinical Text. The chapter title is Graves’ Disease in the Neonatal Period and Childhood by Stephen H. LaFranchi and Cheryl E. Hanna. I Actually I have the 9th edition of the book at home but was not aware of the article. Looking at the section Radioiodine Therapy I was able to find an answer to the question, At what age is RAI treatment recommended for children? In the summary discussion, LaFranchi and Hanna say “…most pediatric endocrinologists prefer not to treat children [with radioiodine] until they are 10 years of age or older." The 9th edition that I am reading was published in 2004. Now that five more years has gone by and that more time has gone by to observe the effects of RAI treatment on children, results may show that it is safer to treat children with radioactive iodine even earlier.
Ellen Brightly
Administrative Assistant
Graves’ Disease Foundation
400 International Drive
Williamsville, NY 14221
Toll-free – (877) 643-3123
Email: Gravesdiseasefd@gmail.com
Website: NGDF.org

[Author]

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