Thank you!

ButterflyBites wrote: »

About a month ago everything declined & I felt like my lack of thyroid was taking me over again. I recently went to the dr. and my levels hiked up way to high way to fast - they were worried about cancer reoccurrence - THANKFULLY I am still in remission.....since the fear of reoccurrence I have started researching again (I gave up a couple of years ago while looking for the right dr.) and my head wants to explode.
I feel like the thyroid/hashi community is nothing more than 'he said/she said' 'I am right/you are wrong'. Someone recently posted that thyroid cancer can be reversed by diet alone and that anyone that has surgery/radiation is looking for a "convenient way out" I am not sure if that is true or not but I do know that the comment struck my nerves and had me wanting to jump through my computer screen - nothing about an illness is convenient and if it was truly possible to skip the double surgeries I had and the radiation that kept me away from my children for 10 days by diet alone please know I would have tried this...

Hooray for remission!! I cannot imagine how much cancer has to suck. I do remember someone trying to find information on naturally healing the thyroid but don't remember the rest of the details. However, there's a number of ways to try to make it more livable that I have read and tried, and all of them include my meds.

There may not be secrets or a special way to fix this disease but how do you all truly find things to try to simply feel better without being caught in the middle of some type of battle - isn't being hypo/hyper or having hashi's battle enough?!

I like to read different things all in the realm of research, most recently im trying to lower my carbohydrates to see what that does, adding multivitamins to my diet seemed to help, the lower carbohydrates seem to help too. Its more like accidental limited dairy no wheat and no soy it seems. I try a bunch of things with a YMMV. The only battles I seem to get into is when someone is trying to sell something, when I first got this horrible hashimoto jerk, every time I would look online someone would be all about 'natural cures' or something to that effect and I would feel very similarly as you do about wanting to jump through the screen, and usually they were trying to sell something that was bunk.

I might want to try the bodpod thing another member had mentioned as it seems kind of interesting. I have learned alot from reading the message boards, walter reed, going to a nutritionist. After hashi killed my thyroid all the way everything got alot easier. With anything someone else does its all your mileage may vary.

I know these disorders can make us a really grouchy bunch but if I have ever upset anyone I never meant it.

I totally agree with your @ButterflyBites. Other than here on MFP, I run into so much noise. Even in the books I read, they can contradict each other. My biggest beef, though, is when thyroid is blamed for every malady ever. I understand that it has a hand in a lot of things, but not everything. And I think all this noise is what is covering up the good info as well as burning out doctors who may want to learn but are tired of people coming in wanting thyroid meds because they get hangnails. (I don't hold the doctors blameless though. Not at all. We pay them to keep us healthy, just as we pay plumbers, mechanics, and pilots to do their job right. If they fail, or it's not in their purview, they need to refer on and stop with the ego trip.)

I'm with @editorgrrl on this. Shifting through all of it is tough, but it's the only real way. I'm a girl who likes a clear road to go down and it's been very frustrating for me to have to stumble around in the underbrush. But I'm learning more and more who to trust and what is working or could work for me.

Congrats on busting cancer. I'm a thyroid-less cancer butt-kicker myself. And it took me years to get my knowledge on with this, too. My levels recently went way too high, as well, and I am trying to get my doctor to see that.

Thank you so much for your post, @ButterflyBites. I feel just like you do sometimes, in fact I have given up on several Facebook pages / forums because I had the feeling that they were frustrating or scaring me more than they were helping.

I'm a member of a lot of diabetes groups and I see the same thing there. Here is my take: There is a difference between "not getting along" and having a disagreement. Too often, people think that by disagreeing, you are personally insulting them... so then they get defensive and start actually "not getting along."

Here's an example of something I see very often in diabetes groups:

T2 User: "We are all the same, regardless of type."
Me: "No. Type 1 is an autoimmune disease and type 2 is a metabolic disease. How we got diabetes is different, and even how we treat it is often different."
T2 User Thinks: *He just called me fat and therefore told me I'm a terrible person.*
T2 User Actual Response: "No, I'm not fat and I still have type 2."
Me Thinking: *Yet another user who doesn't understand. Also, usually I'm thinking someone is in denial because I see this a lot from people with profile pictures of a 300 lb. person.*
My Actual Response: "Could you clarify your position? My position is that Type 1 and type 2 are different because.... <insert long response>."

While I can somewhat understand the mental connection when someone who is probably ridiculed for their weight hears "metabolic disease," this isn't intended as an insult. It is important to be objective. Whether someone is obese is a question of fact, not opinion. I don't have an opinion of someone's personality traits based on their weight, but that is the assumption being made. Sometimes that becomes a self-fulfilling profesy, though, because some respond to the perception of being ridiculed by actually being a prick.... that leads the other person to form the opinion that the person is a prick.

So my point is that sometimes people are not objective and mis-read facts as negative opinions. That isn't to say people always get along on the internet, but sometimes the wrong signals are received and causes people to become upset because of how they perceived something instead of how it was intended.

Also, from a science standpoint, when I am interested in knowing something, I will read scholarly (peer reviewed) scientific journals. I like to read the study itself, and not the summary provided by a news organization or on an advocacy website or wherever. Some people have a hard time understanding why one cannot simply provide a web address to where I get my information. It is because electronic scientific journal access requires a subscription or at least a library in most cases. While some think that makes the source less credible, I disagree. Seeing the words written by the author of the study, being able to view quantitative data presented, and an analysis of the research method is even better than a brief description. If I'm citing a particular study, I have no problem providing the information to find the study and read it. That just won't be in the form of a URL.

The thyroid group here on MFP seems really good to me overall. There are occasional snits, but most of the time people resolve them pretty amicably and realize that it was just a genuine misunderstanding. I personally haven't seen any trolls in this group, though I definitely have seen them on the general boards.

The problem I see more often than not (on general boards or other places) is someone who simply thinks that they know more than they do and then they make these sweeping statements and often add value judgments on top of the not completely accurate statements if someone challenges their knowledge/argument (calling people special snowflakes in a derisive manner, telling them that they're really just lazy, obviously they're so stupid because don't know how to weight/measure food, etc.). Or they make erroneous assumptions about what worked for them MUST work for everyone else.

When you point out the limitation of their sweeping statements, some get very aggressive and will start ridiculing others. The CICO argument is a good example -- applying a simple physics law based on a closed system to a highly complex biological system such as the human body has inherent limitations because the human body literally is doing 1000s of chemical reactions in its metabolic pathways. That's not to say that CICO isn't a helpful guideline -- it most certainly is -- but it's not an absolute, straightforward law when applied to the human body.

For example, there are differences between the calories released released from a 1 lb of fat (3500) versus a lb. of muscle (900-1700). So, how much fat vs. muscle you lose will change how much weight you lose for the same caloric deficit (all other factors being equal). Or there are differences in weight loss based on your macros and insulin sensitivity/resistance. There was a study showing that women with different levels of insulin resistance lose more or less weight on isocaloric diets where the macros are different (people with good insulin sensitivities lost more weight with higher carbs and those with insulin resistance lost more with low carbs) -- which shows that not all calories are equal, at least not for all people all the time.

Things like this don't mean that CICO doesn't have some value or apply to many people as a general rule -- sure, it does -- but it does show you that there are limitations. My basic rule of thumb is that if you're falling outside of the general CICO parameters, then it's time to look for contributory issues -- such as insulin resistance, thyroid, etc. But some people are the boards insist that isn't possible, belittle people by calling them special snowflakes. They hated it when I pointed out over 40% of the US adult population has insulin resistance at pre-diabetic or diabetic levels, the vast majority of which are undiagnosed. That's a LOT of special snowflakes.

I personally have been in the situation where people tried to find out some personal information like where I went to school and what degree I received, and then when they did find it, they shut up really quick. Or then accused me of bragging though they were the one that initiated the challenge in the first place. Generally, I just try to ignore such people. The only time I usually engage is when they're beating down someone else with their limited rhetoric. When I used to have more presence on the general boards, I often received PMs from people thanking me for defending someone of their idea because they couldn't quite find the right words to say it or they didn't want to engage for fear of getting piled on as well. I don't like being piled on, but I can take it if need be. I just really hate bullies and bullies flourish on the internet.

There simply are some very small people in the world and the internet gives them an opportunity to be their worst. They look for opportunities to belittle people and be cruel -- they're true sadists -- or they just want to argue for the sake of arguing (usually to make themselves feel better). You can disagree with someone and still be respectful or point out the inadequacies of their argument. I put up with such people because of the other good people out there -- those with a genuine desire to have an exchange of ideas.

I don't come here to show others on the internet how smart I am, but to learn from others and share what I've learned along the way (in hopes that it may help others too). It's been these types of exchanges where I've learned the most about Hashi's and then taken that information to doctors to get the correct diagnosis and treatment -- it's been invaluable to me because otherwise I'd still likely be undiagnosed and untreated (and probably would still be derided as a lazy special snowflake who just doesn't know how to count calories). But, you've got to take the bad to get the good.