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Your right to question him. You are hiring him to do a job. I am trying to find some stuff I had, but in the past 5 months I have lost 2 computers and a bit sloppy with my organization skills. But I will say, you must have your antibodies tested before you are taken off of the ATD’s – I would say TSI as well as TRAb.
TRAb because it shows 3 – Total in one number.
TSI because will show if you have any stimulation.Ok, for example (because I am sure I confused you) Right now my TRAb is 1.1, which is not too bad. And one would think, great, no antibodies. Well this is not the case with me because currently I am still getting stimulation. I can tell because as I lower my dose, my TSH drops fast. So, this means that the TRAb of 1.1 is probably mainly TSI, so for me to know for sure, I need to have TSI labs run. Also, I know my thyroid is still inflamed because my TPO is over 200 (down from 2500). Remember, there are only 2 things that can stimulate your thyroid that is:
TSH
TSIAlso remember that antibodies are the cause for Graves Disease. Not the thyroid itself. It seems that many doctors ‘assume’ the patient is in remission because TF’s and TSH are normal, then ween the patient from ATD’s only to find them bounced back to hyper. This is because there were still antibodies left. This is why some people stay on ATD’s longer than others. I think it ranges from 4months to 30+ years. It is all dependent on antibodies.
Anyways, I know I have some medical journals/research some place to share with you, but it is just a matter of finding them.
Keep up the great work!
in reply to: So what was your Graves story…. #1179280Thank you so very much butter999 for sharing. It is stories like this that make me angry and question why doctors still insist on giving RAI. And wonder why GDATF doesn’t talk about it – cancer. This is why I tried to start a post here:
http://www.gdatf.org/forum/topic/43388/
Sadly the topic was pushed away. Yet it is very healthy to talk about it, because the more you do the more you are familiar with it and can educate yourself so you don’t end up like butter999’s wife. Educate and Advocate for your self!
@butter999 it takes 5 years or more for cancer to surface after a RAI treatment. I do have a lot of info regarding RAI – PM if you want me to pass some onto you (the info I have acquired is from medical journals, studies etc).
@Kimberly about Google’s CEO Larry Page. You got it partially right, that comment he made was from a few years ago when he was first diagnosed. Since that time he has lost most of his voice and now has a different look on it.But he is only human, and it usually takes something bad to happen for us to take notice sadly.
in reply to: Few things to help you feel better. #1175510I Think this should be bumped up. For all those who have missed it.
Thank you Harpy for adding to this thread, it’s very helpful when others can join in to help others.
in reply to: Do I need a Psychiatrist too? #1179415Shirley,
Please re-read what I had said. At no time did I state posters are ‘guiding’ others. I briefly talked about – Mob Mentality which is quite different than what you wrote. The basics of psychology and self-awareness is what I wrote.
Ever hear the phrase Trend Setters? Or how about if one person commits suicide(Has to be on the news, making it a big story), the suicide rates go up in that given area?
Quote:But the moral of the story is, whether you like it or not, people are ‘getting into your head’ everywhere. I can guarantee I have, and you know what? It’s ok to be angry with what I said, it is healthy after all.And you did exactly what I thought someone would do – You read into something that wasn’t really there. You instinctively put your back up against the wall. So, I did just as I pointed out, I got into your head.
As far as the psychiatrists – I basically said what you said (psychiatrists can, psychologists can’t), I was trying to be brief on the point of 50 words or less. I wanted the posters to know there are other options than a psychiatrist – Not everyone you see will ‘push’ pills on you as vanillasky pointed out. And that each field has their own way of treatment. i.e counselors can’t give you ideas.
If the psychology of marketing didn’t work, then you all wouldn’t buy into it and it wouldn’t be a multibillion dollar industry.
in reply to: Do I need a Psychiatrist too? #1179411My take on it all (not like you people listen to me anyways)
People are getting in your head every single day, and not just once but over and over. And that is marketing. The basic of Marketing is psychology. The goal is to make you NEED the product, not just WANT it.
Here in Canada, only psychiatrists can prescribe medicine since they have a phd, where as psychologists can’t because they only have a MA. And obviously councilors can’t, they have to be careful because they are not allowed to give ‘ideas’ their job is to only listen. Only one able to give you ‘ideas’ is a psychiatrist.
But if you were to see a psychiatrist, you can ask in the first appointment that you do not want medication. At that point their technique in treating you changes, so this is important. And just because you had a bad experience with one, doesn’t mean the other you will. It’s like seeing an endo, you went and found another after your first bad experience didn’t you? You didn’t give up – What if you did give up after the first bad experience with an endo? More than likely you would be dead.
Any type of counseling will only work if you want it to. It’s the same as an addict who goes for treatment, if they do not want to help themselves, then counseling won’t work either. So in other words, if you walk into your appointment with the idea that it won’t work, then it won’t, simple as that.
We are very social creatures, and no, not just going out for coffee with your friends. Like the psychology of this board as an example how groups work. If one person was to pop up and say, “hey, I had great success with a councilor”, more would follow. Not now of course, since I have already put it in your psych. Another example is – when someone on this board chooses a treatment such as RAI, almost all will follow suite with the same treatment. You are looking for affirmation. Currently everyone is talking about TT, same thing. Much like ‘mob mentality’, people tend to loose their self-awareness. And for this reason, I don’t really like this board. I only come on to watch really.
If you notice, not many talk about ATD’s as a treatment choice. For most part this is because we are a lot better, we really have no need to join in, there is not much to say. There are literately tons of other groups focused at ATD therapy since ATD’s are a growing trend, as well as first treatment choice in Europe, China, Japan and Australia. And GDATF is about the only group that focuses on RAI or TT. My point here is, if there where not other places for ATD patients, and more stood up and talked here, you would see a major shift on treatments on this board. It is just how our society works.
But the moral of the story is, whether you like it or not, people are ‘getting into your head’ everywhere. I can guarantee I have, and you know what? It’s ok to be angry with what I said, it is healthy after all.
Btw, I study both marketing and psychology.
in reply to: Heat Intolerance #1179238Naisly wrote:Anyone know why Las Vegas has so many fountains?(I know the answer)
I guess no one knows the answer? Surprised, since most of you are from the US.
Water regulates temperature.
You all can figure out the rest since no one here bothers to talk to me anyways.
in reply to: Heat Intolerance #1179234Anyone know why Las Vegas has so many fountains?
(I know the answer)
in reply to: Meds: once a day? #1179216You know, it is funny how people think doctors know more than manufactures or pharmacists.
I’ve had 3 doctors tell me they do NOT study pharmaceuticals (only basics) in school. Fact is, they already have too much to learn in a short period of time. And even you must see common sense that it takes 7years to become a pharmacist and 7years to become a doctor. Along with the myriad of new diseases out there. It is not humanly possible for ANY doctor to memorize every single disease, every single prescription. The human brain can only retain a certain amount of information, unless they are a ‘special’ type of individual. As I said before, only a doctor who is PERSONALLY effected by a disease will understand it fully. Doctors are human, just like you and me, they are not superman.
On a personal note. My GP knows absolutely nothing about Graves Disease. He has admitted this to me and I can tell when I see him he is scared to treat me. I have to remind him to check my Vitamin D and iron, I have to show him what to write on the reqs, I have to show him what to write on the prescription, I have to reassure him every time I go into his office. It’s all very exhausting. But I have to do what I have to do. What I wouldn’t give to walk into a doctors office and fall into his arms and and say, “Take care of me.”
I asked him why he didn’t know, he said because there are over 20 thousand diseases that are specific to what specialists learn. So this takes us to endocrinologists – Yes, they learn the entire endocrine system and basically concentrate on diabetes for good reason. Since the American population is in an almost epidemic with diabetes 2 caused by lifestyle, eating habits etc. So who’s to blame for that? The manufactures for pushing this junk food on us and our kids? The advertisers? The FDA because they are letting this happen? The endo because he isn’t superman? Or maybe it is you and me for buying into this crap?
It’s also funny how some put doctors high on a pedestal even though it is a FACT millions of people are misdiagnosed each year and people die everyday because of incompetent doctors. And a FACT that many doctors still dose with ATD’s according to TSH lab values causing many patients to suffer longer than they should – basically causing the patient to choose a more permanent solution, because HEY ATD’s are not working – giving you hives, making you hypo/hyper, and forget about remission since the doctor is so incompetent he won’t check for antibodies before taking you off ATD’s. Well gee isn’t that a surprise!
Look around you, notice the amount of lawyers advertising they will fight your medical case. Why do you think that is?
Organizations such as GDATF wouldn’t exist if it were that simple as to find a doctor and get treated, end of story. But sadly that is not the case with this disease. This is why they use the slogan Educate * Encourage * Empower.
One last thing, YOU are hiring them to do a job, YOU pay their salary, if YOU do not like the job they are doing, say so. This is YOUR right or get that referral from the person 6 feet under.
in reply to: Meds: once a day? #1179209MMI has a half life of 5-6 hours. It should also be taken at the same time each day. This goes for getting labs done.
Quote:Quoted from the manufacture:Quote:TAPAZOLE is administered orally. The total daily dosage is usually given in 3 divided doses at approximately 8 – hour intervals.Quote:http://www.pfizer.com/products/rx/rx_product_tapazole.jsp
You can also check out the FDA if you don’t believe the Manufacture of the drug.
Since it does have a short life, one is bound to swing hyper/hypo throughout the day. No wonder you feel so crapy.
On a personal note I have to say I am sort of shocked with some of the replies. First, doctors in North America are not trained in pharmaceuticals, they leave this training up to your pharmacists. If anything, doctors use outdated source books for their info. So it is either they are are not informed or want you to fail at remission so you will do RAI. Either way, you must learn to advocate for yourself.
in reply to: Help with lab abbreviations please #1178426TPO is a marker for Hashimoto’s these are usually very high results tho 2000+. A lot of GD patients have some TPO which is an indication of inflammation of the thyroid.
in reply to: Thyroid Regeneration #1178361Quote:What does calcitonin have to do with my TSH? Just wondering.Oh, nothing it was a separate question to the post (I guess I should have been more clear on how I asked the question). My mom takes it as a spray and I was thinking about you because you had mentioned before you had achy joints sometimes so I was just curious.
in reply to: Thyroid Regeneration #1178357You know what the feedback loop is right? That’s when the pituitary detects too much(or too little) hormone and tells the thyroid to stop(or start) making T3/4. Yes you have no thyroid but your pituitary does not know this. So it is reasonable to say that you and your doctor need to look at your ‘normal’ labs again and how you are feeling.
adenure Btw, have you ever had your calcitonin checked? Just wondering ’cause I just had a convo about this with my mom and thought about you.
in reply to: Just curious about RAI #1177973Kimberly
Quote:However, please note that there are guidelines in place for this board that I have been charged with upholding. It makes my job MUCH more difficult (and quite frankly, much less enjoyable) when posters deliberately push the limits of these guidelines. I haven’t taken the time to pull the specific thread up, but as I recall, one of your recent comments started, “I don’t care what anybody here says…”http://www.gdatf.org/forum/topic/43314/
How did you get I was talking about ATD’s? This whole thread was about labs.
Quote:Now, I don’t care what anyone says, she has the right to understand her labs so she can work TOGETHER with her doctor.This is what I said at the bottom of my post.
This poor girl could have DIED when her endo took her off of the ATD’s, and it upset me greatly. She wasn’t even on beta-blockers. And everyone here just stood around twiddling their thumbs while her doctor was dosing her on TSH (because hey, forum guidelines state we CAN’T talk about it). She posts that she has new labs and having trouble because apparently she keeps going up and down/up, that she has a hard time being regulated and being told it was her fault(and not the doctors). I wanted to show her that she actually hasn’t gone ‘up/down/up’ That if her first endo (which she fired) was doing his job, she wouldn’t have run into this trouble of being HYPO. Patients feel their best in the upper half of the ranges is even noted in AACE and AAFP, how is that giving medical advice? (I can understand if I told her to go home and lower her dose) Specially when you do it all the time — “…According to AACE…” And what a joke, I didn’t say anything else in this thread. I wasn’t ‘deliberately pushing the limits of the guidelines’
Quote:You have also posted derogatory comments in other threads that were personally directed at me. Debating facts and opinions on this forum is absolutely welcome – but these were *personal* comments.Are talking about recently with mslux? But exactly what does that have to do with this thread? Are you caring over a grudge because I disagreed with how you handled the situation with mslux? Because this is the only time I disagreed with you. Again, what does this have to do with me starting a thread…
And the only reason I did start this topic was because of questions like this one – http://www.gdatf.org/forum/topic/43321/ and I find they never get any real concrete answers. So I thought it would be healthy to talk about it.
AzGravesGuy
Quote:If disagreeing with statements made labels me as aggressive, abusive, or a bully, then the environment for an objective discussion never really existed.It wasn’t the fact you disagreed, it was how you said it, as I pointed out.
in reply to: Just curious about RAI #1177968Quote:I posted the comment because it appeared to me that there was really an agenda behind this post, as opposed to “curiosity”.I am correcting you. You are just so wrong with your ASSUMTION.
Quote:but it seems that you are on a mission to get other members to choose ATDs as their treatment option.How exactly so? I have gone through every post I have made and there is no reference to this. If anything, I talk a lot about labs (which you yell at me for), other than that, I answer questions.
Why on earth are you alienating me? What have I done to DESERVE this. I am sure you ill find something else wrong with what I have wrote here, like you do everything else I write.
So in your mind it is ok for people to talk to each other as AzGravesGuy talked to me? And you won’t step in why? Do you really hate me that much?
You know, it took 6hrs for me to write this, because quite frankly I didn’t know where to start or what to say. It shook me up pretty bad. I laid in bed crying for most of that (I haven’t cried since sept). This was the only place I could go to, to get away from my real life – a life that frankly sucks! vanillasky, you think your husband is bad – try to live with a alcoholic who doesn’t feed us, doesn’t turn on the heat in the winter, abuses my autistic son, a son who threatens to kill himself, a daughter who ran away because of the above, run and operate 2 businesses while dealing with my own health.
My point is, I come here every single day hoping I might make a difference in someone’s life, to get away from abuse, that perhaps it would add some purpose to my own.
But honestly, I don’t know how much more I can take of either.
in reply to: Goodbye and so much good luck to all. #1178125All I can say is, I feel ashamed to be part of an organization that treats it’s members this way. To not do anything about it but join in is just so wrong in so many ways. Worse yet, these are SICK people who are depressed as it stands.
This is cyber bullying at it’s worse. Why on earth would you bully a sick person like this?
Quote:Don’t let the door slam you when you leave ….On second thought, I hope it knocks you over.
Like my mother used to say – If you can’t say anything nice, don’t say anything at all.
Quote:We now return to our regularly scheduled programming of “encouraging, educating, and empowering…”Kimberly how could you. Your supposed to be a highly respected moderator….
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