What is Graves Disease
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative ex...
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"Do no harm" HAH!!!!
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I have come to the conclusion that the docs treating Graves' are often worse than the disease itself.
We know that most of us have suffered, sometimes severely, because our docs did not medicate us properly. It seems all of us have had a myriad of hyPO symptoms to contend with when our real "problem" is hyPERthyroidism. In addition to having to deal with hyPO symptoms, we are often led to question our sense of logic and/or common sense. And, because we are so sick with hyPO symptoms, it's hard to stand up to these docs.....hard to have faith in ourselves that we understand our disease and what needs to be done to feel well. I've been reading some posts lately and am shocked at the complete BS stories that some doctors have spewed. One doc told a patient that it is preferable for her to be kept hyPO so the thyroid is rendered inactive - DEAD WRONG! Look at this partial list of hyPO symptoms......how can anyone say this is a healthy way to be????? http://www.stopthethyroidmadness.c... Why don't doctors get our thyroid hormone levels RIGHT for us???? Why do they choose, instead, to render us hyPO? I know most of us know the answer to this - complete ignorance about TSH. But still....... Endo #2 often made the comment that her decisions were based upon the "Do no harm" motto. Yeah, right......she kept me hyPO for most of my journey. She told me my TED wasn't "that bad" so I'd "probably" be fine with RAI....no thanks, sista, these are MY eyes - I'm not happy with how they look now - why would I even take a chance with them becoming worse after RAI?? And, if endo #2 was still treating me after RAI, do you really think she'd medicate me properly??? She kept me hyPO on ATD's.....h-e-l-l-o-o-o-o, she'd keep me hyPO on thryoid hormone replacement after RAI. No thank you! Endo #3 told me my BRAIN was "forgetting how to make TSH" - yikes, that sounds pretty scary, doesn't it??? Well, endo #3, my BRAIN - ahem, sorry - correction here - my pituitary gland is DOING THE RIGHT THING!!!! My Graves' antibodies are telling my thyroid to make hormone.....and my pituitary gland is smart enough, active enough, working properly enough to stop making TSH. Those antibodies are going to be around for awhile. And, thanks to the dosing practices of endos #1 & #2, I know my pituitary gland knows how to make TSH....because it DID make TSH when they overdosed me. I suffered with hyPO symptoms to confirm that my pituitary gland still knew what it was doing. My pituitary gland made so much TSH because my body was SCREAMING for more thyroid hormone. My pituitary gland was making TSH to stimulate my thyroid to make the hormones my body needed.....and I suffered because my body wasn't getting enough. Thanks, but no thanks, my disease is all about my thyroid gland....my pituitary gland still works. I was hyPO because my body wasn't getting enough thyroid hormone to function.....my FT4 level was too low for my body's needs. This is "doing no harm"????? Overkill is more like it. If I followed endo #3's dosing recommendations, I would have been driven to a deeper depth of hyPOhell than any other I've experienced. I was already at the deepest depth in hyPOhell I ever was when I met endo #3.....I had 60 (yes, SIXTY) hyPO symptoms when I met endo #3. If I followed her dosing recommendation, I could very well be in a coma right now. Do no harm???? Yeah, right. The stories these docs come up with to justify keeping us hyPO are absolutely incredulous. I have thyroid textbooks, medical textbooks, Graves' books, medical journals all confirming the EXACT OPPOSITE of what these docs spew. We, the patients, SUFFER because of these docs. I have had the wonderful "opportunity" of being my "old" self....completely 100% "back" to the "pre-Graves'" me for a 5-month stretch during my Graves' journey. This was when my FT4 level was right for me. Why can't the docs keep us at the FT4 level that is right for the individual????? Sorry to say, they are ignorant of the facts that I have discovered during my two years of research since Dx. If you clicked on the link I gave you, you might have noticed the name of the site "Stop the Thyroid Madness" ALL thyroid patients seem to suffer due to docs not medicating us properly. Our thyroids are very smart.....they interact with every body system on a cellular level. They provide thyroid hormone on an "as-needed" basis to each and every body system. The thyroid still works when we have Graves' disease.....it just needs a little help with regulating the amount of thyroid hormone it produces. Why can't docs seem to realize that our thermostats (thyroids) need a little adjustment (with ATD's) rather than set the temperature SO LOW that we can't function??? How is that "doing no harm" ? The doctors that treat Graves' are often worse than the disease iteself. Posted on 11/09/09, 08:11 am |
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CD,
I have wondered the same exact thing for the past 8 years and I am still wondering that now even though all I need is regular labs and to get feeling better on a good replacement. Angel 
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why can't these doctors just do their job? if someone doesn't feel good and all you're looking at is TSH, wouldn't you care to let the patient know what else could be going on...or...i don't know....LOOK SOMEWHERE ELSE? what sense does it make to keep someone on the same dosage of medicine just because of one number on a piece of paper? you just find it ok to tell someone who feels like sh*t all the time that "your levels are normal, have another blood test in 6-8 weeks." or in my case, have another blood test before you see me again, i would see him twice a year.
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Ya know......my GP told me I knew more about Graves' than he did.
And I realized he was right.....he looked at my thyroid labs and said they're normal (they were in-range). I guess maybe 'cuz docs are trained to look for other levels (glucose, cholesterol, etc) that are out-of-range that they think "in-range" thyroid levels are to be considered normal? The creation of the TSH test in the 70's was truly the undoing of care for thyroid patients. Before the TSH test, docs dosed based upon symptoms. Now, that blasted level is SO misinterpreted. I just don't understand how WE know what needs to be done yet our docs can't figure this out. Endo #3 started with the "when you have thyroid disease" crap. Yeah, when you have thyroid disease, you are almost guaranteed to not be medicated properly so you can pretty much count on feeling horrible. That's unless you educate yourself and become proactive in your care. Then you have a chance.....as long as you're willing to fight the fight. I never gave up 'cuz I enjoyed those 5 blissful months of being completely my "old self" when my FT4 levels were right for me. It took me over 2 years and 3 endos before I found the "right doc". They're out there - we just have to find them!
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Hello,
You are so right on cd. All the more reason to be proactive with your own health and read and research like your life depends on it because it does. Only after about a year of reading many posts and asking many questions and reading Elaines site does it all really sink in. We all hate that TSH test and it really does take iniative to find a Dr. that will work for you. I have read so many posts just like this and it has also happened to me. I to am on Dr # 3 Take care and we will be here to listen to you and know what you are going though. Daisy
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Your so right CD. It is very sad. I have been to many doctors that are so HYPED UP on the TSH. It has been so bad that if I did not take my life in my own hands, would prolly have clogged up arteries and heart failure.
I have heard they did not get much training in thyroid disorders, and endos are the worse for they thyroid. They can deal with diabetes though.
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Ya know, my GP was "manly" enough to tell me I knew more about Graves' than he does.
If endos aren't going to keep up with things related to Graves', they truly should not take on caring for Graves' patients. My first-ever forum contacts told me some GP's, internists, DO's or holistic docs might be better treating Graves' 'cuz they often look at the "big picture". My 4th Graves' doc, an internist, turned out to be one of them!
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Hey Carol!
And to top of the whaole process with these docs they get PAID...ARG!!!! What a crime!
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oops typo....sorry one of these days!
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I think it's true of any disease. You have to be an advocate for yourself, and educate yourself on what's going on with your body. Not all docs are equal, with some deep on the suck side of the scale. At the end of the day, you have to live with your body, and your disease, and they don't.
I lucked out with the endo I got. I went in ready to argue for what I wanted to try, though.
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