[npatterson]

in reply to: Synthroid Dosing – Uh oh! #1178606

Oh my goodness! EVerybody! PLEASE don’t be tweaking your medicine. None of us are doctors, and messing with even 50/1000th’s of a microgram of levothyroxine can mess you up a bunch. I do NOT say this to be authoritarian, but I AM an authority—I did this, not once, but twice. It took months to get back where I was supposed to be. My physician said “OK, “Doctor” Patterson, are you ready to let me be the doctor now?” I am lucky he didn’t fire me on the spot.

Take care, Nancy

[npatterson]

in reply to: 3 year old with graves #1177595

Have you been in touch with the British Thyroid Foundation there in the UK? Not to imply that you should not be here, too, but they are right in your own back yard, so to speak. They are a patient organization like us, but they really klnow their stuff.

Take care,

Nancy

[npatterson]

in reply to: newly diagnosed #1177913

Dear Gerical,

It sounds like you may benefit from a second opinion, preferably from a doctor who specializes in (or at least treats quite a few) thyroid patients. They should give you the true picture of the advantages/disadvantages of the three treatments. On the “About” part of the home page, you can get to a bulletin that explains all three. If you can’t find it, send me your regular e-mail and I can send it to you.

I am not too clear on what you have already done, or are considering doing, but NO, do not wait for your thyroid to “burn out”. Is everythng all right after you get things treated…that’s a loaded question! For millions of people that have treated Graves’, things are truly fine. It was more like having the flu. HOwever, very few of those patients are on the internet telling how well they feel. The internet can scare one to pieces in some cases, or giuve you sound, active listyening and support. If you are being offered some medication for your heart, and your general “hyper” (nervous, moody, can’t think straight, etc), for goodness sake, take it. Most important is to get to a doctor who will listen, and have a dialogue. Take someone with you–husband, friend, parent–anyone who will be there for you, and be able to listen to what the doctor says. 1 and 1/2 sets of ears are better than the 1/2 most of us have at the doctors office.

Take care,

Nancy

[npatterson]

in reply to: Questions anout Graves disease #1178551

I am not good at links, but there is a ton of information at the National Institute of Health (probably “www.nih.gov”). YOu are looking for things like incidence, and prevelance studies. Good luck. I’d be interested in seeing what you end up putting together. Some of the information on the home page contans things we used to send to students.

Take care,

Nancy

[npatterson]

in reply to: Fish oil #1178485

Well, I couldn’t understand most of this. It is an animal study, done in Rio de Janerio. We can ask one of our Medical Board members; wait for the clinical (people) studies.

Take care,

Nancy

[npatterson]

in reply to: I will be helping this weekend while Kimberly attends a meeting. #1178320

Okay….’way back in the dark ages (aka before the Internet), everything was done by first class mail and telephones. Originally there was a brief article about thyroid problems published in PREVENTION magazine. I wrote to them and gave them our contact information (address and phone), which they published later in “Letters to the Editor”. Our mail picked up considerably. Then there was an article written by one of our Medical Advisors (Robert A. Stearn), that listed us, and the Thyroid Foundation of America. I got a call from Reader’s Digest. Based on their readership, and them having an excellent predictive ability based on statistical information of the number of Graves’ patients, they asked me if I had the staff to handle all that mail? “Staff” consisted of me. Of course I said “yes”. To make a long story short, over the following month, we got FOUR THOUSAND letters. The mailman was bringing them in big bags for about a week.
I was completely overwhelmed. They were supposed to send a self-addressed envelope so we could mail information about the foundation, Graves’, and membership back. I didn’t open any of them! Finally, one night I was talking to one of my daughters (who is VERY organized), and was telling her about all this mail, and how I didn’t know where to start. Her simple question gave me excellent advice: “Have you opened the envelopes?” What an awakening! I was quickly able to apply for a volunteer from the local volunteer organization, and we got them all answered, recorded their contact information, which included the designation “RD”. BTW, The Thyroid Foundation had more than 20,000 letters.
The other thing about this is that it was all done while I was working full time in my private counseling practice.

Take care,

Nancy

[npatterson]

in reply to: Thyroid Regeneration #1178371

They were all Graves’ patients, one was originally a sub-total thyroidectomy, the other two were total. It was years later in all three cases. Surgeons that specialize in thyroid surgery have multiple aides to let them “see” the tissue, and I haven’t heard about a re=growth in many years. Try to stop worrying–it is just wears you out, and depletes your energy for things you CAN do something about.

Take care,

Nancy

[npatterson]

in reply to: Fish oil #1178483

I have never been asked this question. I will try to find out and post the answer.
What is the general reason you are asking?

[npatterson]

in reply to: Any book suggestions? #1178468

My personal favorites are Rubenfeld, Could it be my Thyroid?; Garber, Overcoming Thyroid Problems, BLue Zones, and Graves’ Disease: In Our Own Words. That is known as a shameless plug.

Take Care,

Nancy

[npatterson]

in reply to: Thyroid Regeneration #1178362

I had not seen the 16% article. I have personally known 3 people whose thyroid grew back, and for each of them was a very long time later (10-15 years). The one I remember best was someone whose thyroid actually grew down her throat.

This particular risk of recurrence is the reason that thyroid cancer patients have very large doses of RAI after their total thyroidectomies. BTW, unless the terminology has changed, a sub-total thyroidectomy is when they intentionally leave a portion of the thyroid, in those that they think the remaining part can handle the body’s needs. What they learned was that that portion usually died away, and you were left hypothyroid, and sometimes not being able to figure out why.

Take care,

Nancy Patterson

[npatterson]

in reply to: What questions should I ask the Ophthalmologist? #1176759

You have probably already done this, but be sure your surgeon is a plastic RECONSTRUCTIVE surgeon. Who will be doing surgery for double vision? It is usually a pediatric eye surgeon. Ask if there are patient who have been through this that you can talk to? That would mean giving permission for his office to give your contact to other patients (HIPPA rules). There are so many improvements in eye surgery these days. Kimberly can tell you how to get to the videos. Go to the ABOUT part of the home page and look for the bulletins about eye disease.

Good luck, and don’t be overwhelmed by what you read. For instance: they always have to warn you about things like blindness, but my surgeon said that no one in his practice, and no one in the United States that he knew of, had experienced blindness as a result of surgery. Your new best frineds will be ICE PACKS

[npatterson]

in reply to: Well, here goes! #1173572

I hope you find that actually taking the RAI is a “non-event”. No lights go off, no great band music. It’s “Here, drink this (or swallow this”, and you leave. The thing that struck me was that the folks who brought it in to the room left VERY quickly! I just went back to work.

Talk to your doctor about the possibility of being prescribed some ATD to take for a couple of weeks if you are really afraid of the possibility of a surge of hormones being released. It DOESN’T happen more often than it DOES happen, but at least there is an option.

Kimberly mentioned the genetic pre-disposition. That’s the latest theory. If you don’t have the pre-disposition, there’s no way you can develope Graves’, and if you do have it, it may not take much to trigger it. I think the DNA studies are finding it in the DNA of people who don’t have family members who have it. The more important thing to focus on is the fact that you do have it, and you are getting it treated, and you can begin to get on with your “new normal”. I think it is harder for men, partly because you are in such a minority–who do you talk to? We do have some great facilitators who are men, and really do understand. Stay tuned, and good luck. PS You won’t even glow in the dark!

[npatterson]

in reply to: new here and newly diagnosed.. #1170121

Please do all the things that Kimberly suggested. You need a doctor who specializes in Thyroid/Graves’ Disease (Yes, there are such doctors). I know that medical offices have had to become very computerized (they are REQUIRED to do so), but if your doctor won’t even take the time to read your paperwork, or search on the laptop to read where the information has been imputted (is that a word?) by the admin prior to seeing you, you will have pretty much wasted your 7.3 minute-appointment.
Call the offices you plan to try, ask to speak to the office manager, and ask how many Graves’ patients this physician sees. You will get answers from just a few, to the practice is 60-70% Graves’. If you live in a small town, specialists may be hard to come by. IF you absolutely cannot find someone, let us know, and we can contact some of our medical advisors–who know doctors who are not necessarily in the societies, but are busy seeing patients and doing excellent work. Then, if you will talk to a Supervisor at your insurance company, you can request a “referral by exception”, or an “exceptional referral”. You will need all your substantiating information before you call, becazuse chances are they they will not know a lot about Graves’, and therefore not understand why you need this exception. You will end up educating them.
There are smart, experienced people all over this board. They will help you!
Take care, Nancy

[npatterson]

in reply to: Newly diagnosed GD – Having a hard time accepting it #1169662

I just read your post, and Bobbi’s excellent response. I hope your appointment is with a thyroid specialist (Thyroidologist). As Christina pointed out, you don’t have to RUSH into treatment, but you do need treatment of some sort, and fairly soon. Graves’ is seldom a wait-and-see disease. You do have options, and you need to investigate them There is LOTS of information here, and from the Home page. Compare the risks and benefits from the three treatments, and dialogue with your doctor.
Glad to have you aboard. Take care, Nancy Patterson

[npatterson]

in reply to: confused #1066256

I think you answered your own question: it WILL be helpful to have your results BEFORE you see the doctor. That was, things can be explained to you. Good luck!

Take care,

Nancy

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