I have spent countless hours in the last seven years searching online about my autoimmune disease. First, I do not take advice from people online; I do not believe what I read online unless I have very good reason to believe it; and I certainly don't mess with my medication like so many thyroid patients do. I take it as directed.
I was very difficult to stabilize on thyroid medication. It took six years for my endocrinologist to get me on the correct amount of thyroid hormone. She was often perplexed at my levels. One time, she reduced my dosage, and my levels went up. Another time, she raised my dosage, and my levels dropped. During this time period, she pointedly asked me exactly how I take my medication. She thought I wasn't following directions.
I take my medication each day on an empty stomach when I first awaken. It is my first act of the day. I wait one hour or more to ingest anything other than water. I wait four hours for supplements. I learned through online searches how important that procedure is for thyroid patients, since just about everything reduces absorption. I was first put on thyroid medication by my primary care physician, who didn't tell me any of those things. So there is some good information online, but it's so hard to wade through the garbage.
In the years when I was not dosed correctly, I spent countless hours reading other people's stories. I was trying to figure out what was wrong with me and why my levels wouldn't stabilize. I never did figure anything out during those years, but I did learn that thyroid patients need to be careful about believing much of anything that is on Facebook or on the popular thyroid websites.
Before I continue, what happened with me was that my primary care physician had me on the wrong dose, causing more inflammation. When I switched to the endocrinologist, she immediately changed my medication, which was wise, but I reacted quite badly to the medication she chose. It caused a massive amount of inflammation. I was then switched again several times, at least three times because of recalls and shortages. I finally went through a relatively stable period on the medication that I am currently taking, and gradually, the inflammation reduced enough that my levels stabilized.
Getting back to the thyroid websites, I finally figured out a couple years ago how wrong much of what they say is. I knew all along that their commentary did not fit my situation. What I mentioned in the above paragraph is not described anywhere. Changing thyroid medications causes an autoimmune flare, which makes it hard for my levels to stabilize. In the Facebook groups, so many people who don't do well on a medication claim that when they switched to another, they were immediately well. Well, lucky them. My body fights all thyroid medications really hard.
When I am tested and find that my levels are slightly off, I prefer to stay on the same dose as my body gets offended at any change in thyroid medication, even a dose change for the same brand I am taking. I prefer to be off some than deal with that mess for months. And that just isn't accurately described by most people online. They all act like changing to another medication is an instant cure. That might be true for them, but it's very bad information for people like me.
These days I stay away from those websites as well as the thyroid groups on Facebook. I occasionally visit the groups just to see what is going on. I avoid the websites completely. The websites are blatantly mercenary. They also act like everyone is the same.
According to those sites:
My thyroid hormone dosage is apparently never enough to treat anyone. Oh, really? Well guess what? My thyroid actually more than halfway works. That's why I don't need the high dosage that many other people do. I would have a heart attack if I were to take the dosage recommended by the websites. Much of the thyroid advice online is dangerous.
Everyone's T4 level should be in the middle of the range and their T3 should be at the top of the range. This is not true for everyone! My levels were like that at one point. I was so sweaty and wired. I took a bath every few hours and could never get rid of the stickiness on my skin. I could not sleep. It was awful. My proper T4 level is near the bottom of the range and my proper T3 is at the middle of the range when I feel my best. I feel such scorn each time I see that stupid optimal T3/T4 chart that everyone shares. I don't fit what it says at all.
If one of those people should ever stumble upon this post, they'll comment and tell me that I'm wrong. They'll say that the optimal T3/T4 chart is right and that they actually know better how I feel and what is right for me than I do. That's how bad it is.
I also felt scorn when I saw how the webmaster of one prominent site acted after a drug recall. This person kept linking to a video of a song on YouTube as their response to each person who commented on the post. I don't recall the song, but the title or content was such that it was supposed to be a way of trashing the company. It was an odd response, especially to do it on every comment. I lost respect for that person that day. I think that person may have removed all of those video comments from that post as they don't seem to be there now. It was a lapse in judgment for sure.
In the Facebook groups, everyone seems to assume that everyone is just like them or should be just like them. It's so annoying. Of course, that seems to be true of most everyone on social media, not just the thyroid patients.
Let's talk about supplements. Some of the supplement groups on Facebook are basically cults. Be very careful about the supplement groups. For that matter, be very careful about all Facebook groups that fall under the umbrella of heath. There is one supplement group that I in particular think is very much like a cult. I remain a member only because I sometimes check on them around once every couple of years just to see if they are still acting the same.
For another supplement, I am a member of several groups. I think many people in those groups are obsessive about their supplement in a way that isn't healthy, although those groups are not as odd as the one I first mentioned. I'm not going to say which supplements, since I don't wish to hurt anyone's feelings.
I will say that the people in these groups claim that the supplement has to be taken in a certain way, like with certain food or drink, in a certain amount, with a certain brand, and with certain other supplements. It is quite restrictive. Members in these groups often get upset, because they are overwhelmed with all the rules.
Here's the truth. Just take the supplement you want by itself. Take it with food if it upsets your stomach. Don't take it with a certain super-special food just because someone said so. Don't take it with a bunch of other supplements just because someone said so.
I have seen people's pictures of their supplements. Some of these people take 20 to 30 supplements per day. !!!
People who join the supplement groups tend to have autoimmune diseases, which means they have brain fog. Blindly taking the advice of people with brain fog is a bad idea.
One last observation: Searches on the Internet for various complications after a tooth extraction reveal results that are inaccurate. The results are from dentists, so you think they would be accurate. No! The Internet is full of garbage. If I am to believe what I have read, apparently how the extraction went for me was highly unusual and very few people have the kinds of problems that I have had. Of course, I mentioned one complication to a colleague, and she nodded, "Oh, right!" She had an extraction a couple years ago. She had the same problem.
What I noticed is that every dentist has the same explanation, all copied from some source that is not accurate. Ugh.
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