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in reply to: Mood Issues #1069896
I wish I didn’t hear this so often! "i-am-not-the-same-person-I-used-to-be" is an all=too common theme. It’s not just newly diagnosed, although it can be almost comical in retrospect–but NOT now.
Just want you to know that I copied this entire group of posts to the psychiatrist that will be at the conference. He has Graves’, and can be very entertaining about his early years. But I think we need more depth (if it is possible).
To all of you…Take care,
I can only imagine what you are dealing with, feeling, experiencing, etc. You are ahead of things in many ways. DO contact ThyCA. They are a wealth of information, specific for the type of cancer you have. They have many support groups, and an annual conference coming up in Boston (I think). We have worked together for many years, and they are very caring, supportive, knowledgeable and true activists.
in reply to: Reaction to Methylpred. #1068430This is not a treatment that is used routinely in the US. I do know a doctor in Australia that is very involved in research for Graves’ Eye Disease. I will cut and paste this to him, and see if he can give us some idea.
in reply to: Make up and eye question #1068494As with Lu Ann, my makeup days are over. I canuse Oil of "Delay", but nothing around my eyes. Life is easier this way, I tell myself.
in reply to: Conference Question- Webinar? #1068497I have sent an e-mail to Peter Filocamo, the President. This is a wonderful idea, but I just don’t know how it works. Certainly it is something to look in to. Thanks for the idea.
in reply to: Im new to the Graves Disease Foundation #1068807ANDI,
The only radioisotope that you have to be away from anyone is the I-131. The others are contrast mediums, meaning they help the x rays to be clear.
It would mean that the baby sleeps in his/her own bed that night (or maybe you sleep in the guest room. At story time, Daddy holds the child in his lap, and you read the bedtime story from the chair. We really don’t get high doses of RAI, compared to say, Thyroid Cancer patients.
Take care,
What does your doctor say about your sleep patterns? Have you ever kept a "sleep log"? That would give you (and the doctor) some real numbers to work with.
It might be that some of your supplements are interfering with your sleep. Check with your doctor on these, as well. Sometimes all you need to do is take them at a different time of day; sometimes you have to stop them altogether.
Thanks for mentioning the "trolls". I will guess that you are reading the board at night, when you are awake. That seems to be the time of day they get posted. I try, and do the other moderators, to get on early in the morning before I leave for work to remove them. Then others are checking several times a day.
in reply to: back after being shut out a few years ago. #1068578Welcome back! It is nice that you found us agian. You have already made some good contacts.
in reply to: Depressed 13 year old #1068596I think this has at least one part that must be discussed with her doctor. The concern is for her heart.
The second is her self-esteem, etc. It is tough being an budding-teenger in even the best of circumstances, and Graves’ certainly does NOT contribute to this in a positive way. Send me an e-mail to "nancyngdf@bellsouth.net" and I will send you a really good bulletin about kids and Graves’. Most of it will help you, some of it is specific to the USA. Thanks for showing where you live.
in reply to: VIRTUAL COFFEE BREAK #1068606I will "see" you in the morning! What a delightful idea!
in reply to: Mother with GD – HELP! #1068865Sofia,
The ETA (European Thyroid Association) is meeting in Lisbon in two weeks. The TFI (Thyroid Federation International) is having a Patient Forum as well (co-sponsored by the NGDF). I could be wrong, but I believe it will be conducted in Portugese. If you will send me your regular e-mail, I will put you in touch with someone that can give you details. "nancyngdf@bellsouth.net".
I think there is also a movement to start a Portugal Thyroid Foundation — which will be a Patient Organization.
Take care,
in reply to: My 11 year old daughter just diagnosed! #1068635One doctor got right back with me. He says all you have listed are good, and adds: Univ Iowa (closest), Yale, Mass General, and here at Johns Hopkins.
in reply to: TT surgery comparison #1068616Not sure you can compare it to a tonsillectomy! Send a message to the NGDF office and they will send you a great article on Thyroid Surgery.
in reply to: My 11 year old daughter just diagnosed! #1068632I copied and pasted your post and sent it to three doctors. They are going to need more information, like TSH levels, etc.
Are you from Arkansas How flexible are you with traveling? Did the endo really talk to you? Send me an e-mail at "nancyngdf@bellsouth.net" and Iwill send you a really good bulletin about students and Graves’. It won’t answer THIS question, but will be really useful to you in many other ways.
We will have a pediatric endo at the conference in Charlotte, NC Oct 16-18th. If there is ANY WAY…COME and bring your daughter.
in reply to: Im new to the Graves Disease Foundation #1068801Dear ANDI,
Another Nurse Practitioner here! Can you not make an appointment with the Endo? Maybe the NP can help you get in sooner. It will help if you write down the "facts" before you see the doctor. Pulse rate, how long they last, how they come out of the blue….
You are NOT a failure, and it is not a matter of mind over matter. Think of it as a broken leg–you can’t "think" it better. Any mind/body work you are doing, keep it up. They will benefit you more later.
You can’t just be off medication. It sounds like perhaps "too much medication" meant you were too hypo. In that case it is normal to stop the medicine for a while, but with (lab work). Were you like this before you stopped the medication?
The point of taking medication for panic attacks is not be zone you out, but find a point of balance in which you function well, and are not side-swiped with panic attacks. It may even take more than one type of medicine (maybe beta-blockers and anti-anxiety meds). DON’T sit at home worrying yourself to pieces. Make an appointment with your Endo, and/or your Family Doctor, a counselor or a Psychiatrist that practices behavioral medicine (meaning not psychoanalysis). You are not crazy, not weak, but do have Graves’ tossing you around. You can’t do it all yourself.
If you will e-mail the office, we have material on treatments, and lots of things that you might want. If you e-mail me at "nancyngdf@bellsouth.net", I can attach some of it to you.
Take good care,
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