[Ellen_B]

in reply to: I’ve been recently diagnosed with Grave’s and I am struggling to keep it all together. Need Advice and support. #1184030

Hi Vicky,
The emotions are high with Graves’ patients. Crying is one of the most common behaviors that Graves’ patients report. The very smallest event or no event at all can cause you to cry. Talking to someone else with Graves’ can be very helpful to let you know that you are not alone. Also talking to others who have been through it and gotten better after treatment is helpful. Conversing with others on the Forum is a good place start.
Remember your emotional upheaval is caused by too high thyroid hormone levels. Also remember that there are treatments—antithyroid drugs, RAI and surgery which will bring your levels down and allow you to be normal again.
The problem is the treatments all take time so you have to drag yourself through the treatment period to get to the other end.
To learn more about your emotions you might want to take a look at a lecture entitled Emotional Impact of Graves’ disease by Ira Lesser. You can find it on YouTube http://www.youtube.com/watch?v=CB8_5rbCso8
You might also be able to get some ideas about how to relax from Dr. Herbert Benson “Thyroid Disorders and the Relaxation Response– also on YouTube
http://www.youtube.com/watch?v=Mea202U9wgQ

Getting others to understand what Graves’ is all about is a difficult problem. Not feeling well is bad enough and on top of that being isolated by others who are so important to you is a major additional problem. Can you get any of your family members and friends to read literature?
One article from our website you or your friends might read is–What’s Wrong with Me?
http://gdatf.org/about/about-graves-disease/patient-education/whats-wrong-with-me/

Another article you might want to take a look at is entitled An Open Letter to Husbands of Graves’ patients.
http://gdatf.org/about/about-graves-disease/patient-education/an-open-letter-to-husbands-of-graves-patients/

The information in it can be for any family member—not just husbands. It tells us how other family members perceive a family member with Graves’. Most important it tells us that Graves’ patients do recover and become accepted and loved by members of the family again.

The forum is a very good place to come to find support.
We understand the challenges you face with your Graves’ disease.

[Ellen_B]

in reply to: Total Thyroidectomy, still Hyper? #1183711

Hello,
I have not had a thyroidectomy for Graves’ disease so I cannot speak from my own experience. However, I was recently talking to a patient who has. Her case was unusual in that she was supposed to have a total thyroidectomy but a small piece was left in. Her surgery was done at a top rate hospital but she had to have an emergency thyroidectomy late on a Friday evening and the only available surgeon had to do the thyroidectomy. He probably saved her life but did leave a piece of the thyroid in.
Needless to say she is having a difficult time getting regulated on the methimazole. Her doctor is now trying the block and replace regime. She is on both Synthroid and methimazole. She takes the smallest dose possible of methimazole twice a day and a moderated dose of Synthroid. Her doctor did do a scan and found the small piece. If she takes a higher dose of methimazole she becomes hypo and has to get off the methimazole for a while before (after being tested) she goes back on the methimazole. She cannot go for a second surgery because she has TED.
Most people do get regulated with a total thyroidectomy by adjusting their thyroxin medication but it sometimes takes a long time. I knew another Graves’ patient who had a total thyroidectomy. She was having great difficulty getting regulated on Synthroid. She switched to the generic and got regulated! I don’t think she or the doctor knew why.
I wish you the best of luck with your treatment. Your asking questions and getting answers from others (doctors) is the right way to go.

Ellen

[Ellen_B]

in reply to: Puzzling Symptoms? #1183116

Did your primary check your levels? Did they indicate high thyroid hormone levels? Can you get a copy of your test results and take them to your endocrinologist since you have not been to see him for 3 months. It sounds like you are working hard on all fronts. Having the right glasses should improve matters. Finding out what your eye doctor thinks should help too.
Keep us posted. I wish you the very best. Take care!
Ellen

[Ellen_B]

in reply to: First Time Posting-Happy Wednesday Everyone! #1183038

Hello Julie
I am sorry to hear that so much time went by before you were told that you have a thyroid problem. The good news is that you have just jumped over the biggest hurdle—getting a diagnosis. Your symptoms do sound like the overactive thyroid problem Graves’. I am sorry you have to wait a few more days before the diagnosis is confirmed. The three standard treatments are antithyroid drugs, RAI treatment and surgery. Whatever treatment is chosen individuals with Graves’ are most often put first on an antithyroid drug—the methimazole is preferred because it has fewer side effects. It may take a little while for the methimazole to work because Graves’ individuals have to get rid of the thyroid hormone that has been stored in the thyroid. The job of the methimazole is to slow down the production of the hormone that the thyroid is making. Most often individuals are also put on a beta blocker which works on the rapid irregular heart beat problem. I am sure you will be hearing from others who have been in exactly your situation.
You should let your doctor know how you feel now. She should also know if your symptoms get worse before Monday. Find out from your docotor if she might want to start some sort of treatment earlier.
Keep us posted as to how things are going. I wish you the very best and soon!
Ellen

[Ellen_B]

in reply to: New to the group. lab questions? #1182407

Hello Amber,
I am glad you found us. We are happy to hear from you too. We will do all we can to make you comfortable with our group. I hope that sharing your experiences with others who have similar experiences will make your travels with Graves’ disease easier.
You do have more than your share of problems with two autoimmune diseases. Just coming to grips with a new diagnosis is challenging.
Because we are not doctors (just patients and advocates) we are unable to give medical advice or interpret laboratory tests. Have you been able to look at your test results with your doctor? Does he give you time to discuss the results? Does he explain what the tests are testing?
If you need more information on the tests let me know.
Call us on the toll free number (877-643-3123) and an advocate (most likely me) will answer.
If you prefer to correspond by email send an email to info@gdatf.org.
I wish you the best and hope you start to feel better soon.

Ellen

[Ellen_B]

in reply to: was surgery a good choice? #1182392

Hi all,
It is great to see all this interest in the total thyroidectomy.

I agree with Snelsen’s statement that the reason for total thyroidectomy is to make the regulation easier.

What I was trying to say is even with a total thyroidectomy I believe a little tiny bit of tissue is left around the nerves to prevent vocal cord injury. However we should get the information on this topic from a surgeon –not me.

Thanks for making the reason for a total thyroidectomy clearer.

Ellen

[Ellen_B]

in reply to: was surgery a good choice? #1182389

Hi Pam
You will probably get better information from the posters who have gone through the experience of having a thyroidectomy. I myself have not had a thyroidectomy but I have known personally very well many others who have had a total thyroidectomy and who did very well.
I have known a few cases that had only a partial removal but had difficulty getting regulated on their thyroid hormone. Surgeons leave some thyroid tissue in in order to make it easy to keep some of the parathyroids but also to prevent injury to the nerves that pass from the thyroid to the voice box as well. On the one hand if all the thyroid tissue were removed it might be hard to prevent parathyroid and vocal cord injuries. On the other hand any extra thyroid hormone that is left behind will continue more than likely to produce thyroid hormone and could make the process of getting regulated more difficult.
I wish you the best in homing in on the perfect dose so that you can feel good again soon.
Ellen

[Ellen_B]

in reply to: Methimazole/?Allergy/Treatment Decisions – Confusion! #1182040

Hi again,
I just saw your earlier posting—that your dose was lowered yesterday. How long does your doctor think it will take for the new dosage to be effective?

More questions! I hope you can get an answer.

Ellen

[Ellen_B]

in reply to: Methimazole/?Allergy/Treatment Decisions – Confusion! #1182039

Hello,
I have not had the experience of taking methimazole or having an allergic reaction. I am just going to ask you questions—hoping that someone else who has been on the medication will report their findings.

What dose are you taking of your methimazole? What are your thyroid hormone levels?

I understand that some side effects for methimazole are dose related—that is when one is able to lower the methimazole dose the side effects go away. Your doctor would be able to tell you what your levels are and whether it is desirable or wise for you to lower your dose.

I hope you start to feel better very soon.

Ellen

[Ellen_B]

in reply to: Maximum amount of time you can be on meds? #1181754

Each of the three treatments has its risks. The risks are different for each. One can say the same for the benefits too. Knowing what the risks are is important and being able to discuss them with your doctor is important too.

One of the reasons doctors do not want you to stay on the medication may be because of the possible side effects—which affect the liver and the white blood cells. Are you able to maintaining your thyroid levels at a very low dose or do you have to be on a high dose? Ask your doctor what kind of difference that makes. Ask your doctor if doing liver tests and white blood cell tests make it less risky. Treatment and recommendation must be individualized. Your doctor will know what other factors should be taken into consideration.

I will say that I have heard more than one thyroid specialist say that staying on antithyroid drugs for longer than two years is an option. I also know that the risk for affecting your white blood cells is very low. I know firsthand of many patients who are doing well while being on a very low dose of medications for more than two years.

I wish you the best of luck in finding the best treatment for yourself.

Ellen

[Ellen_B]

in reply to: Boston Support Group Meeting #1181167

Thank you for your kind words. It is so to good hear that the support group meeting provided some benefit for thyroid patients. We are so lucky to have the support of so many excellent physicians.
I apologize for not getting back to you right away with the names of the two physicians. I knew the name of Dr. Randolph but was not sure of Dr. Sritharan’s. I wanted to make sure of their correct titles as well. The Mass Eye and Ear support group coordinator was able to check out for me that information.

Gregory W. Randolph MD FACS FACE
Director General and Thyroid Surgery Divisions
Mass Eye and Ear Infirmary
Member Endocrine Surgery Service
Mass General Hospital
Associate Prof Otolaryngology Head and Neck Surgery

Niranjan Sritharan MD
Thyroid and Parathyroid Surgery Fellow
Thyroid Surgery Division
Mass Eye and Ear infirmary

We appreciate your valuable contribution to our meeting. I look forward to seeing you at the next meeting. We will be sure to let you know the date of our next meeting by email and our support group listing on our website.
Ellen

[Ellen_B]

in reply to: Carb Intolerance #1180944

Good morning.
I don’t feel so good either if I eat a lot of pasta—I don’t know why. I eat a lot of potatoes instead. For some reason eating my carbohydrates in potatoes does not bother me. Is there something else in the potato? Do I absorb the carbohydrates differently—more slowly in the vegetable form because my body has to process it? Pasta is preprocessed food.
I have an anecdotal story about circles under the eyes. I have a Venezuelan relative who was raising her daughter in her own country–Venezuela. Her daughter developed deep circles under eyes. She was otherwise healthy and rested. No one in her Venezuelan family ever had circles under her eyes. She took her daughter (maybe in her early teens) to the doctor in Venezuela. The doctor said the deep circles were due to allergies! I had never heard of such a thing. Sometimes for no reason I have deep circles under my eyes. They come and go. I do not think they are necessarily sleep related. I remember that one of my brothers when he was growing up also at times had deep circles under his eyes. Is it a family trait? I would be glad to hear from someone else their thoughts on circles under the eyes.–also more about carbohydrate metabolism.

Ellen

[Ellen_B]

in reply to: No sleep driving me insane! #1180934

Hello,
The right amount of sleep is so important. It enables you to feel well and function well. Many Graves’ patient suffer from insomnia. The cause is too much thyroid hormone. The nervous system is over stimulated and does not slow down. Your body is in an exhausted state and desperately needs the sleep. Being anxious and irritable are expected results.

There are many ways to calm the body down. Everyone is different? Finding what is right for you is important. What kind of activity makes you feel calm? Something you like to do? Gentle exercise (swimming, for example) music, reading, listening to a radio program on a subject you are interested in? Some people find going to sleep with a radio on for a short time helps them to get to sleep. You may need ear phones on so as not to disturb others in the room.

Have you heard of Dr. Herbert Benson who is considered a pioneer in the field of mind-body medicine, and has done a great deal of research on stress and health? He gave a presentation at the Foundation’s 2011 patient conference in Boston, MA. The title of his talk was Thyroid Disorders and Relaxation Response. He found that stress makes Graves’ worse. He believes we all have an inborn relaxation response. He discusses possible ways to tap into this response.
A video of his presentation you can find by going to this link http://www.youtube.com/watch?v=Mea202U9wgQ

Are you a light sleeper as well? Do little sounds wake you up? Ask your doctor for help with this? Does he know anything about sound transmitters that help? What kind of pharmaceutical approach does he recommend?

If too much thyroid hormone is your problem, what is being done to get them back to normal?

It is good to see that you are speaking out and letting others know how you feel. That in itself should make you feel better and can help you to find out solutions to your sleep problem. You are asking for a few more hours of sleep a night.
I wish you success and soon. Please get back to us and let us know how you are doing?

Ellen

[Ellen_B]

in reply to: The treatment options kind of stink. :) #1180909

Hi,
Were you on antityroid drugs? If you were I take it you do not like the idea of going back on the antithyroid drugs. Weighing the risk and benefits of each treatment is not easy. When is just being on a beta blocker an option? Your doctor will be the best one to answer that question.
I do not know if you are interested in looking at the American Thyroid Association Guidelines for Management of Hyperthyroidism and Other Causes of Thyrotoxicosis. The link to those guidelines is: http://thyroidguidelines.net/sites/thyroidguidelines.net/files/file/THY_2010_0417.pdf [thyroidguidelines.net]
The guidelines were drawn up a while ago (in 2011). The article is not easy reading.

In the article you will find a chart on the treatment of subclinical hyperthyroidism.
Your doctor will have to tell you whether you are hyperthyroid or just subclinical hyperthyroid. If you are truely hyperthyroid none of the information may apply to you.

What is interesting to me is the chart dealing with the subject of when to treat subclinical hyperthyroidism. In the chart patients are lumped into two different groups—one group with a TSH below 0.1 and another group with a TSH between 0.1 and 0.5.
(By the way the lower limit of the normal range for this chart is 0.5mU/L)
The chart indicates patients are more likely to be treated when the TSH is below 0.1 than when it is between 0.1 and 0.5.
When figuring out whether to treat or not to treat, other factors such as age and underlying conditions must be considered as well.
In the less than 0.1 TSH group the over 65 people are more likely to be treated. In the same group (less than 0.1) those who are under 65 with certain conditions such as hyperthyroid symptoms, heart conditions and osteoporosis are also likely to be treated. In the less than 0.1 group if one is under 65 and has no symptoms treatment is only considered. However if you are in the group with TSH between 0.1 and 0.5 and you are under 65 and asymptomatic no treatment is indicated.

How worried you should be about your TSH numbers your doctor should be able to tell you. He will also know all the factors that should be considered—including age and underlying conditions.
It would be nice if questions on the subject were simple and had simple answers. Why is life always complicated!

As you move forward please continue to let us know how you are doing.
I wish you the very best.

Ellen

[Ellen_B]

in reply to: I started my synthroid today! #1178873

Thanks for sharing your news.
You have now graduated to the regulation phase.
It sounds like your doctor is building your levels up slowly so as not to jolt your system.

Keep us up to date on your progress.
Good luck!

Ellen

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