[npatterson]

in reply to: Want info on surgery for Graves #1074916

Dear Sherry,

I am sure you will hear from those who have had surgery. It is a procedure done by a skilled, experienced surgeon (experienced in thyroid surgery). It is done under general anesthesia; the scar will probably be small. It can involve one to three days in the hospital. If you will send me an e-mail ("nancyngdf@bellsouth.net") I will forward you an excellent article on surgery. I just haven’t figured out how to do it from this board.

[npatterson]

in reply to: To amyrz17 #1075016

Amryz~
I am cutting and pasting a reply I just put on another topic. Counseling will help you (and even your family) a great deal. However, the chances of finding one who deals with Thyroid problems is almost non-existant. If you have a rehab hospital in your area, they may have someone that deals with people who are genuinely sick, and also very upset by the effects of the illness. You do not need a behaviorist, nor an energy-therapist. YOu need someone who understands the biology of excess thyroid hormones, and the havoc they can wreak. A good psychiatrist will understand. You can be evaluated, given medical treatment (antideprassants or something for anxiety), and the psychiatrist should know a good therapist to refer you to for some on-going counseling.
We have literature available, and I have talked to many therapists over the years.
That is not to say that we all don’t come with a boatload of our own "issues" that are not magnified by our Graves’.

[npatterson]

in reply to: Having a really bad day……please help #1075020

Dear Hopeful,
Ski and Bobbi gave you great information. I will advise you about counselors. The chances of finding one who deals with Thyroid problems is almost non-existant. If you have a rehab hospital in your area, they may have someone that deals with people who are genuinely sick, and also very upset by the effects of the illness. You do not need a behaviorist, nor an energy-therapist. YOu need someone who understands the biology of excess thyroid hormones, and the havoc they can wreak. A good psychiatrist will understand. We have literature available, and I have talked to many therapists over the years.
That is not to say that we all don’t come with a boatload of our own "issues" that are not magnified by our Graves’.
I hope you get back to your Hopeful-self soon.

[npatterson]

in reply to: Anyone else have a cyclical case of Grave’s Disease? #1075040

Joe,
You have gotten two good responses. I’ll add my two cents: Eat healthy…it’s as simple as that. The other is that your are correct about PTU – that it inhibits production (Tapezole inhibits the conversion). The antibodies can and will be cyclical. There is a great deal of research being done. Generally, if a person cannot be off the anti-thyroid drugs without the Graves’ coming back (your heart symptoms are very inportant) you will eventually be faced with one of the remaining two treatments.
My other observation is that you are also having eye symptoms. The may occur at the same time, or separately from, your thyroid symptoms. You have a specialist, so stay in touch with them, as will as your endocrinologist. Keep your blood tests up-to-date!

[npatterson]

in reply to: Hashimoto’s mistaken for Graves? #1075006

Mickey ~ The scan and uptake are designed to measure size and extent of the iodine uptake in your thyroid. There are "typical" patterns for Graves’. "Further testing" may have referred to auto antibody tests (blood tests) that may have measured the individual antibodies for Graves’ and/or Hashimoto’s. It is fairly rare, but the condition known as "Hashitoxicosis" presents symptomatically as Graves’, but is really Hashimotos. In that case, the scan would have been different than with Graves’, and the doctor would be able to recognize it.
Everyone’s lab results are different, and since we are not doctors, we don’t interprete them. That’s not our job. I hope this informatiion helps. Welcome, and feel free to visit and post.

[npatterson]

in reply to: GD treatments / to seekingclarity #1075273

I just want to say that this may be the "mother of all posts"! Great questions, Great Answers! Thanks, Ski.

[npatterson]

in reply to: I need some help making up my mind. #1075421

Mike,

I am impressed with all the experiences that are shared here! You may even hear from someone who has had surgery. What I have to offer is a good bulletin on the three treatments compared. Send me an e-mail "nancyngdf@bellsouth.net", and I will attach it right back to you.
When we get the kinks worked out of the new bulletin board, it will be available for downloading, but we are not quite there yet.
The best advice you have been given is to make the best decision, with your doctor’s input. Use thisinformatiion to formulate your questions. And you are right, there are very few people who are doing really well posting things on the Internet. They are out living their lives! When you get better,please let us know about it. In the meantime, keep posting.

[npatterson]

in reply to: New to Graves and struggling with life… #1075361

Dear Jill,
You will find lots of people here that understand. Many of us have been right where you are. There IS a light at the end of the tunnel, and it isn’t even an oncoming train!
One year at our conference, we had someone talking about hair and makeup. Yes, getting your hair cut so that not so much of it is falling out, and having it styled in such a way that it is a wash-and-go (as opposed to blowing, teasing, lots of chemicals, etc), makes a positive difference. We all lose a lot of hair daily, but there is a point in hyperthyroidism that it does become thin and falls out. IT WILL GROWNBACK – so hang in there.

[npatterson]

in reply to: Just Had RAI done Thursday and Friday #1075473

Wayne,

I just wanted to say that I hope that by now you are feeling somewhat better. Please keep us posted on your journey.
It makes me want to apologize for the way things were handled in your case. It was simply NOT necessary, and violates most of what I believe about what medical care is to do: Provide comfort, dignity and safety–not to mention hope!

[npatterson]

in reply to: Blood Tests – new to this site #1075412

Dear Suzysue,
1. We can e-mail you a brief overview of the three treatments. "nancyngdf@bellsouth.net". It will help you to initially evaluate the treatments left for you. Then you need to be talking to your doctor, a lot!
2. You might want to contact the British Thryoid Foundation (BTF) Janis Hickey is the President.
"j.l.hickey@btf-thyroid.org" . Their website is "btf-thyroid.org". They have support groups in many cities, and wold offer you an excellent network of support, information about physicians, and have the advantage of being on your side of the world!
You are most welcome to continue to read and post here, but since I know there are more resources for you, hope you will avail yourself of those, as well.

[npatterson]

in reply to: Is this a cure? #1075354

True, the offending organ is now gone. You will be on replacement medication. Because the antibodies are unpredictable, you need to remember that you have Graves’ disease (as opposed to primary hypothyroidism).
So far as the question of eye disease: I get calls with regularity with statements of "I had my thyroid treated, or removed, years ago. Now they are telling me I have thyroid eye disease". You need to be aware of this, but somehow not worry about it. That suggests to me that you get an ophthalmologist to evaluate your eyes with the knowledge that you have Graves’. That would include baseline measurements, visual field, and other baseline information. In that way, you will have things that can be reffered to in later times, if you begin to have what might be symptoms of thryoid eye disease. Once you have done all you can do (like the eye evaluation), you need to not constantly worry about it. There is a big difference in worry and awareness.
Take care,

[npatterson]

in reply to: My son has Graves and we have questions #1075338

Dear Shannon,
I think what you are describing is block and replace, which is a standard treatment for children. It apparantly has not been successful, and you are now having to chose one of the permanent treatments, RAI or surgery.
So far as the actual RAI treatment goes: they may repeat the thyroid scan and uptake, which will help determine the amount of RAI to be given. The day of the RAI he will be given either a pill or a liquid containing the RAI. He may be in a protected room (read: lead-lined in some manner). Then he will go on home. He may be told to do some things, like flush the toilet twice. The RAI is eliminated through the kidneys. He does not have to be isolated, though he may wish to leave pets that like to sleep on his shoulder (near his thyroid which is absorbing the RAI) alone. These precautions go on for about three days.
He may have a surge of hormone escaping from his thyroid, as the cell walls are breaking down. If so, the symptoms will be the same, only possibly exaggerated, as his Graves’ symptoms: heart racing, sweating, shaking, weak, etc. Sometimes the doctors put the person back on the anti-thyroid drugs for a while (weeks) to prevent this.
He will be tested fairly often (2-3 months) to follow his TSH. When it begins to go up, he will be put on levothyroxine to keep his TSH stable.
I hope this begins to answer your questions.

[npatterson]

in reply to: Attitude #1075604

Jeff,

There is a lot going onl Ditto to what was said about counselors cominig in all different sizes! There is a support group leaderin Maine. His specialty area is couples. He has been there and done that. I can send you Bulletin #38 -"An open letter to [other] husbands". If Charlls Zafonte’s e-mail is not on the Home Page, contact me. Also, spend some time in the archives. There are lots of posts there. Some will trouble you, but most will support you and your wife. My e-mail "nancyngdf@bellsouth.net".

[npatterson]

in reply to: Help Please.. #1075582

Dear Pixie,

Let us know where you live, and maybe we can direct you to some help. If there are any teaching hospitals near you, they will have clinics. I went to one for almost two years–when I was without insurance. I got excellent care. Also, you might want to contact a social worker in your county. The Dept. of Health has a vested interest in keeping children healthy, and this extends to the parents, who must be healthy in order to care for the children. You must get in to see a doctor. Untreated, or under-treated Graves’ is SERIOUS.

[npatterson]

in reply to: swimming after RAI #1075598

I have been curious about this post, but only just now read it. I agree with Ski. She should be able to swim in the pool. Please be sure to tell us if the doctor says differently.

There have been several children diagnosed in this last few weeks. Have we sent you the bulletin titled "Students and Graves"? Send me an e-mail and I will attach it back to you. "nancyngdf@bellsouth.net"

[Author]

Posts