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in reply to: Radiotherapy update-TED and getting zapped! #1068026
I have this "survey" that I do: What did you do with your mask? At one time, I had three, that people had sent to me.
in reply to: Thank you guys from the bottom of my heart #1068081Dear Lauren,
We are here for you for the duration of the ride–and it may be a rough one.
Thyroid levels and mental health are inextricably bound up to each other, both hyper and hypo. Your numbers may be fine right now, but they seldom reflect how you feel, both mentally and physically, on the "inside where it counts.
The fact that your levels are changing on a weekly basis indicates they are not stable. You need an endocrinologist, and hopefully that person has treated a number of people with Graves’ and knows that we are not all easy to manage.
You need someone to talk to in a therapeutic way – TRUSTED doctor, TRUSTED friend, or (IMHO) a TRUSTED counselor–one that understands, or is willng to learn about, Graves’. I have sent mega amounts of information to many therapists over the years.
Take care,
in reply to: My choice of treatment and a question about it #1068052Dear Debra,
It is good that you have been feeling so much better. I would imagine that the surge of anxiety with what you were having to do and deal with kicked in your own adrenaline, and perhaps triggered all that extra noradrenaline that is still "in there" to join in the reaction.
There is no such thing as "no stress". If you are alive, there is always stress (aka CHANGE). IT is what wakes us up in the morning, and is part of everything we do. ome stresses are good, others are bad, but they all affect our entire body. With the added stressor of hyperthyroid activity, we can certainly over-react to things.
Our choice of treatment does not protect us from reacting the the various stressors in our daily life. When we finally get to stable thyroid levels, and have been there for a time, it is likely that we will return to the pre-Graves’ way we dealt with disruptive changes/stressors before all this happened. If we weren’t managing things well, we will still have to learn to manage/master things.
There are two ways (minimum) to deal with things:
1st – Identify (first) and avoid or manage (second) those things that are known to "fire us up".
2nd – identify (first) and begin or continue (second) those things that give us more control over our responses. Healthy eating, exercise, hobbies, meditation, prayer, relaxation, stopping smoking and alcohol abuse (and anything else that fits in this category)…etc. You get the idea.You probably need to ask your doctor about the actual time frame for the ATD’s to be consistently working. I am not sure that two weeks is a realistic measure.
Take care,
in reply to: ? Exhibitors at conference #1068050I can assure you that you will take back LOTS of information.
in reply to: how do you get over the anger? #1068092Hockey,
1st, though, how did elf know you are from Canada?
Sometimes we get so far away from our "real" self that we truly don’t remember what it felt like to be OK, remembered what makes us happy, what really makes us sad and/or angry. That may take some intense looking inside, writing it down, maybe even talking to someone outside the circle.
Many times, the hardest person to talk to is our spouse, because we can’t stay focused on the real subject and go "off" into those places we don’t want to go, but can’t seem to stop ourselves from going there. Usually the best times to have those conversations is when there is nothing/little else going on, when you are both rested (so not after work, or a long day taking care of children). Saturday mornings are good, and someone else must take care of the children. (Grandparents are a real asset at this point, or hire a baby sitter to take them to Chuckie Cheeses–you need TIME) Take notes, both of you, get back to the subject when one or the other is shifting away.
I have been talked to like a child, and in retrosperct, it was either because I was acting like one, or they didn’t know how else to talk to me except in easy words and short sentences. One time my husband and I were really talking, and we agreed that the next time he asked me if I had had my levels checked, we would STOP. I would write the topic of the "discussion" on the calendar (so I wouldn’t forget), and I would have my !@#U(#$RU()^&$*! levels checked. The rest of the agreement was that when they came back as normal, we would resume the discussion. The problem was: they NEVER came back normal! Much as I hated to admit it, he (and others) could see my behavior and conclude that my levels needed adjustingmuch sooner than I could.
Angry! Sure. Does it do any good? Seldom, unless it moves you off the place where you are stuck.
Your question: What do you do in the meantime, until things are ‘normal’ so that you don’t push away any/everone who cares for you? is the most telling. That is the fear (and sometimes the reality) of most every Graves’ patient I have ever met. The answer varies. See a counselor, talk to other Graves’ patients, start a support group, gedt information from reliable sources, stay in touch with this bulletin board, beat a phone book with a rubber hose…the list goes on. TRUST is a major concern…getting it, keeping it, getting it back.
Lastly, you do not have to be away from your children for ten days. Secondly, if they are as small as they sound, they will not remember the two days that Daddy read them their bedtime stories.
Take care,
in reply to: looking for help with PTU treatment #1068109I wish you were not the first military person we have heard from!
Give me a chance to contact one of the doctors that helped to start the NGDF. He is now in the Virgin Islands at the VA hospital. As far as I know he is the only endocrinologist. He is a tremendous advocate for the military personnell.
Write to me at "nancyngdf@bellsouth.net". I can send you some information about the treatments. In the meantime, begin to collect copies of your labs, over time. Insist (if you can) on having FT3 and FT4, as well as TSH.
I don’t really have much advice for you, but I do think I can get you to someone who will have some [relevant] advice. For now, continue to be your own best advocate, and get your information from reliable sources.
Take care,
Trey, Send me an e-mail : "nancyngdf@bellsouth.net", and I will send yhou an excellent handout about all three treatments, with pros and cons for all. Something to remember is that the people with Graves’ that are doing fine are NOT on the Internet. That goes for all three treatments. You can also research information at these sites; http://www.AACE.com; http://www.thyroid,org; The Endocine Society (you will have to look it up), and http://www.Mayo.org. Those are all reliable sites.
Good luck, and take care,
in reply to: Car pool from Denver #1068137I know the Martinez’. It will be a delightful trip if anyone wants to team up with them.
in reply to: Is Doing nothing an option? #1068144Dear Hockey,
Kimberly is right–doing nothing is NOT an option. Being hyper takes a huge toll on our hearts and bones. I will send you a comparison of the 3 treatments if you will write to me "nancyngdf@bellsouth.net"
RAI and Surgery are both good options. You will not glow in the dark, nor set off geiger counters!
You will surely hear from others.
Take care,
in reply to: to Cindy Brock #1068159Cindy,
My two cents: When you call about an eye doctor, make sure that they deal with Graves’ disease. Neuro-ophthalmologists are one set of doctors that assuredly do deal with it.
Your mother sounds like a wonderful woman. Let’s hope something can be done–soon. Please keep in touch.
Take care,
in reply to: New Research in Graves Disease #1068157I went to this website. I could not find a date, but I suspect it is rather old. The research projects they mention are mostly complete. You will hear about some of the "less invasive" procedures at the conference. I don’t know about the research regarding children and pregnancy, but we can certainly ask.
When I clicked on the link at the bottom, it took me to a current page about clinical trails, but I didn’t explore it.
NGDF was a participant in the radiation therapy for eye disease – Mayo Clinic.
Intravenous immunoglobulins Sometimes used for SEVERE eye disease
Antioxidants (vitamins C and E; beta-carotene; selenium) I believe this research showed no difference
Cytokine antagonists I believe these did not work-cancer medication
Colchicine The medication for GOUT? Have not heard of this
Methotrexate for Graves’ ophthalmopathy Sometimes used for SEVERE eye disease
Short or long-acting sandostatin analogues for Graves’ ophthalmopathy Sandostatin proved to make no difference.in reply to: Graves Disease 27 years ago and questions #1073196I was older than you were when diagnosed, but I have had it almost 23 years. I’d be glad to "talk" – here or my place "Nancngdf@bellsouth.net". One of the subjects at the conference is going to cover Graves’ over the life span–just for us old-timers.
Take care,
in reply to: Looking for stories #1074650I thought I would pull this forward. How are your collected stories coming along? I know we would certainly love to have a copy at the office (New York, and NOrth Carolina)..My e-mail is "nancyngdf@bellsouth.net". If you have it even partially done, let me know, and we will try to get the adolescents who come to the conference to contact you.
Take care,
in reply to: Shameless Plug for the Conference #1068170I called the hotel. The person I talked to said there is not a shuttle, but they use a group called Carrier Car. If there are 3 people, it costs about $22.00 each, and I think that includes a tip. The hotel will set it up for you. Their number is 866-248-4824.
THE DEADLINE FOR HOTEL RESERVATIONS IS SEPTEMBER 25TH – That’s next Friday. At that point they stop the special room rate of $150, and go back to $450.
Yes, we are going to do something with the PARAID bill – probably signing letters. Do you know that Dr. Noel Rose from the Autoimmune Society will the there, and speak to us?
I think it is a good idea to get together at the airport. Can someone figure out a way to post arrival times, or will someone offer to collect them out of individual posts and make them into one or two longer posts? I would suggest
Name, Arriving FROM, Airline, Flight number and Time of arrival.Take care,
in reply to: Yee HA! My levels are finally normal! #1068163Salsa lessons, starting school and painting…I’d say you’re BACK! It’s wonderful to hear, and equally wonderful to look forward to those (good) old feelings!
Take care,
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