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in reply to: Question for the Conference #1070504
That is an interesting question, and one to which I have a small answer! Over the years, we have had doctors who have Graves’ themselves – 2 psychiatrists, 1 OB/Gyn, 1 Endo. Of those, all have had family members with Graves’. We have had a couple who were raised by a parent with Graves’.
It gives a great line of insight into both their presentations, and their approach to their patients.
in reply to: Eye watering on Tapazole? #1070489Watering eyes can be one of the most mis-understood effects we have. Infection and allergies are the two most likely non-diagnoses, because red, watery, itchy eyes look just like both of those. The doctors that are usually best at diagnosing this are Neuro-ophthalmologists. If necessary, a CT scan can show enlarged muscles.
I would really be asking my doctor. If both the anti-thyroid medications are out of reach for you, will be investigating another treatment.
in reply to: 13 y/o w/Hashimoto’s, but hyper and symptomatic #1070633Are you in the UK? If you are, I will put you in touch with the British Thyroid Foundation. You need some local help and support, as well as what we can give you here.
I am not familiar with Triadril. It does not seem that the reason for her "attacks" has been identified. Has she had an EEG?
So far as a nodule is concerned, you certainly need to have her seen by a specialist. "Nodule" is not a definitive term–sort of like a "bump". They can be hot, cold, and there are many types in between.
in reply to: Washington DC Area Graves Support Group #1070614We ARE working on it! Let’s hope you get many responses. As you say, we have a trained leader there now–looking for a group to start.
in reply to: 13 y/o w/Hashimoto’s, but hyper and symptomatic #1070631I re-posted this from WorriedMum. It was originally about Diazepam (Valium) ~nhp~
Panic attacks are frequently manifested by rapid heart beat, coldness, and hyperventilation–this can cause "tremors" and occasionally "fainting", but the recovery does not take hours.
4 mgs of Diazepam/Valium is not a huge dose, but unless a doctor is physically present and supervising, should not be given more than 4-6 hours apart.
She she having the multiple attacks at home, or in the casualty/emergency room? What you are discribing is altogether different from panic attacks. The slow recovery, dizziness, weakness, headache, sore throuat (?), inability to walk, and going back into the condition are not nornal, and not part of a thyroid condition that I am aware of. She needs to be seen by someone, a specialist if possible. Print out your description and take it with you.
These are not side effects of diazepam.
Please keep us posted.
in reply to: Occupational therapy article on GD #1070776This sounds like an outstanding idea! Would it help to ask people to post specific things that they either needed, or figured out how to manage? If you would give us some guidelines I think you would have lots of ideas.
in reply to: Thyroid Uptake Results…What Were Yours? #1070688Good morning,
Ski gave you an extensive response. I can send you some information about the treatments. e-mail lme at "nancyngdf@bellsouth.net" and I can attacvh them in a reply.
As for numbers on uptakes, that involves an interpretation that is made by the actual test, the radiologist, and the doctor. It figures into many other facts relating to your thyroid.
There is no special diet. Eat healthy, period. Taking iron supplements will cause your thyroid to make more hormone, which is the opposite of what you need.
I wish you well on your journey,
I had RAI 22 years ago. One dose. It took a while to get replacement hormone stable, but even that doesn’t seem so long–all this time later. Good luck to you!
I am almost ashamed to post, because you have had such great support already! I can tell you that mostly the only thing you will have to do after RAI is stay arms length from folks. So, you read a book to the baby, but let her daddy hold her. None of us get enough RAI to be hospitalized. We have good information on all the treatments, and if you will send me a note, I can e-mail them directly to you. "nancyngdf@bellsouth.net". I just can’t send them from the board.
in reply to: Children under age 10 with Graves’? #1070757You should be hearing from the other mothers. There are more on this board than you would expect. It is good that you are aware of what to look for. Even in children, it seems, we try to explain away behaviors and symptoms. Good luck. Send me an e-mail nancyngdf@bellsouth.net and I will send you an excellent article about Students and Graves’. I cannot do it from here.
in reply to: Neonatal Graves Disease #1071100Valerie,
I just talked to Anna, and she wants to talk to you! I kinow you sent me an e-mail, but I can’t find it. "nancyngdf@bellsouth.net" and I will connect the two of you. She even knows another woman who is pregnant, due in two weeks, and her antibodies are high.
in reply to: Graves, TED & temperature #1071410This is interesting, because I would have improvement when I was NOT in Florida, but in cooler climates. I thought I was in heaven when I got to spend a week in the Canadian Rockies one spring. When I was in Arizona last spring, I thought I would just have to stand under a shower to get my eyes to NOT be so dry.
I think the trick is to know what is going on, and know what to do – even when our eyes are changing.
in reply to: What’s your input on conference speakers? #1071126Here is what I see so far:
Dermatologist
Nutrition (general and weight control)
Exercise (strengthening and regaining muscle tone)
Complementary therapies (I may need some clarification) This usually means meditation, exercise, massage, yoga, etc.)
Stress (Management, and/or what is it actually?)
Coping skills (where did they go, and how can I find them again?) Send NY address, please
Endocrinologist(s)
ATD’s
Block and replace
Thyroid 101 (what IS a thyroid, anyway?)
**My dream: An Ad campaign "Got Thyroid?" with a thyroid stuck somewhere on the
body, followed by an explanation of what the thyroid does, and why it is important to check it.
Pediatric and/or Maternal/Child Endo/ObGynHave you registered for the conference? The Hotel? The Hotel is totally AWESOME. The rooms are usually $450.00 – Our price $150.00
Peter is working on some really special things–can’t tell you yet, but if they happen, you will be REALLY IMPRESSED!
in reply to: Neonatal Graves Disease #1071099Dear Valerie,
That is a truly awesome post. One of our trained Support Group leaders, in North Carolina, had a baby under the same circumstances. If you will contact me at "nancyngdf@bellsouth.net", I will try to put the two of you in touch with each other. My guess is that neither of you have ever talked to someone else in the same situation. The doctors ignored her Graves’, too.
I can relate to the twins, part. I didn’t have Graves’ at the time, but twins are twins–at least in the physical "space" they occupy–before and after birth. They are grown, and don’t have Graves’.
Keep us posted.
in reply to: T3 therapy advise #1071074The things to know about T3 include that it actually a very potent concentration of hormone. The response I usually give is three-fold:
1. If it makes you feel hyper -(heart racing, tremors, can’t sleep etc.) STOP
2. If it has no effect – you don’t feel any different – STOP
3. If you DO feel better, continue to take it with your doctor’s supervision, have Free T3 and Free T4 testing done, get a bone density test done (excess thyroid hormone depletes calcium in your bones), & get your doctor to suggest the proper calcium supplement. Take care of your heart (excess thyroid hormone stresses your heart) – exercise, nutrition, stress management–you know the drill. CONTINUEIf #1, or #2 appear – STOP
It is never a treatment for the newly diagnosed.
It has immediate effect, and that effect wears off every day. There is not a buildup of the hormone.
BE CAREFUL, and stay in touch.
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