Sebastian Kern, Contributor
Thyroid Support Groups
Hey there all you gorgeous Thyroid Warriors and Thyroid Thrivers.
It’s me again. I’ve been lying dormant for a while. Seems like my levels and numbers are all where they should be (for now), and more importantly, I’ve been feeling pretty awesome. But as we all know, the Thyroid roller coaster ride can take us anywhere at any time. So even with things going well for the moment, I still keep myself involved with the community by talking to people, doing my research, listening to the podcasts and following the groups on Social Media.
I love Social Media, Don’t Get Me Wrong
I’m pretty sure if you are reading this, you know what Social Media is (and if not, how are you even reading this?). But for that one person out there who isn’t sure, Social Media are all the different sites that helps us stay in contact with whomever we want all around the world, without the use of a telephone conversations, handwritten letters or face to face contact. I’m talking about sites like Twitter, Instagram and Facebook.
Let me ask you something: how many Thyroid groups do you belong to on Facebook? Facebook is inundated with groups, and when it comes to Thyroid and Autoimmune diseases, there are probably hundreds of groups one can be a part of, each with their own niche. Some focus on diet and exercise, some provide information on doctors around the world, while others are meant for support and provide information. At the moment, I personally belong to seven different Thyroid groups (not including my own), but at one point, I may have been involved with up to twenty. And that’s in just a little over a year’s time.
When I was first diagnosed with Hypothyroidism and Hashimoto’s back in February 2015, I didn’t know where to turn. I was scared and alone. Nobody I knew had it, or had told me they did, and the information I researched online was all over the place. Believe it or not, even all the Thyroid professionals have varied opinions on everything Thyroid. It’s confusing, overwhelming and extremely stressful to muddle through alone. Around May/June 2015, I was on Facebook, and for some reason, I decided to type “Thyroid” in the search box, and up popped a whole bunch of groups. Now imagine how happy I was to find people who were dealing with the same thing as me, all in one place. I started requesting to join just about all of them, and my journey down the rabbit hole began.
Rejected From Many Groups
As eager as I was to join these groups and become part of a bigger community, some of these groups were not eager to have me.
I was rejected from several groups for reasons such as I wasn’t on natural Thyroid medication, I didn’t follow their specific diet plan, and my personal favorite, I hadn’t been diagnosed long enough.
Have you ever been told or experienced that? Well I’m not sure how you would react, but I was upset to say the least. I mean, how do you turn away someone actually asking for help?
With time, I found a group that accepted my request, but as a male with Thyroid issues, the information was very limited. The group tended to discuss things like menstruation, pregnancy and the biggest topic of all, weight loss suggestions. Knowing now that Thyroid issues are predominantly found in females, I can’t blame the group for what they discussed. But after a while, I got fed up because it seemed like the only thing people were concerned about was their weight, and I didn’t see having Thyroid issues as a diet program. So I started to look for other groups.
I then found two or three groups that seemed a little less female-centric, but were more informational. They really didn’t have much information for me as a man, but the administrators did get me in touch with other men dealing with similar issues, so at least I was able to have conversations with them. I was comfortable within these groups, and would participate in some of the conversations, sometimes throwing my own two cents in. But as time went on, I started to notice some things within the group that made me uncomfortable.
It started when I had seen my first endocrinologist, and she told me that my symptoms sounded like they were fluctuating between Hypo- and Hyperthyroidism. I had no idea what that meant, and immediately went to the group to tell them about my appointment. The response I received was so negative. People were telling me it wasn’t possible and I didn’t know what I was talking about, or I was lying. I was in complete shock. How could people attack me for asking a question about something I never heard of before? In the end, it turned out to be my medication dosage was too high and it needed to be recalibrated, but the damage in that group was done. I want it noted that since then, plenty of people have come forward about fluctuating between the two, so I guess it is possible and I knew what I was talking about.
I continued to be involved in the groups, but participated a little less. A few months after the previous incident, I had written in the group about experiencing brain fog, among other symptoms. I was asked to provide my latest lab results and list of medications I was on, to which I was told by other group members that I needed to be on T3 and change my Levoxyl to Armour or another natural Thyroid medication, and if I didn’t get those specific meds, I should change my Endocrinologist. Being Jewish and somewhat Kosher, I wasn’t going to change to a natural medication that was made from pig, but I did get my Endocrinologist to prescribe T3. From the moment I began on T3, my hair fell out, my skin broke out, I put on weight, and I felt terrible. My numbers over the next few months also reflected a negative reaction, as they all went from being within range to completely out. After four months of this, I stopped taking the T3 (as per my Endocrinologist’s advice), and everything reversed, and my numbers have actually become the best they had ever been since. (everyone is different, listen to YOUR body)
That experience made me really think about these groups on Facebook, and even how I speak to other people in similar situations to mine.
In the end, what it all boiled down to for me was something I learned a long time ago when I majored in Psychology: people just want to be heard.
I don’t know about you, but one of my biggest complaints this past year and a half has been that my doctor/endocrinologist never ask me how I was feeling or valued my input. Most of them follow the same protocol that they were taught in school and that has been around forever when it comes to the Thyroid. Some have even got mad that I did research, as if I was undermining their intelligence and authority. Actually, I’m wrong because I do know. Most people in these groups complain that their doctors ignore them. I’m pretty sure that is the origin to most of these groups: somebody wanting to be heard.
People come to these groups every single day scared and confused, much like I was, looking for someone to listen and let them know they are not alone. They want support, not to be brow beaten for not eating properly or taking the right pill. I hate to break the news to everyone, but no two people are the same, and there is no single way to treat a Thyroid issue. I’m sure there are many factors involved in each of our healing processes: gender, age, location, as well as weight, height, underlying issues and statistics.
Everyone Is Different
For example, as much as people want to push gluten-free and AIP diets, it doesn’t work for everyone, and not everyone needs to be on it. I myself did gluten free for six months. I ended up losing way more weight than I was advised to, and my Thyroid levels actually got worse. But I stopped, and my Thyroid levels actually improved. My body felt no different on or off gluten, my weight is where it’s supposed to be, and it’s been maintained for about a year now. So for me, going gluten-free didn’t improve things.
Now I’m not saying follow my lead. Not in the slightest. Gluten-free and AIP does help people, and T3 does wonders for others. I’m just saying my experience with certain things. I can only speak for myself, and it isn’t my place to tell anyone what they should or should not be doing. I did not go to school to be a doctor, nor do I have a medical degree. So I am in no position to be giving out medical advice.
The same applies to most people in these groups. Research and experience is great to have, but it does not give you a medical degree. The reality is that the only professional title most of these people giving advice have is that of a professional patient.
In my opinion, it is completely irresponsible for people without any formal medical background to be dolling out medical advice or telling people what medication or supplements they should be taking.
At least with a doctor, if they screw up, there’s this thing called malpractice. Who is responsible when someone decides to stop taking medications or gets sick because of advice given in a Facebook group? There definitely needs to be more accountability for what is said in these forums, because it’s people’s health on the line.
It’s also irresponsible for people in the groups to tell others to drop their doctors or pay privately. Nobody knows what another person’s financial situation is, and with some health plans, you are stuck with certain doctors. I live in New York, and have the luxury of choosing from a list of doctors and specialists, but for people who don’t live in big cities, they only have one doctor in their area. And some have none and need to travel for hours just to see someone who can help them. In cases like that, how do you expect them to drop their doctor and seek another? We need to be cognizant and sympathetic to whom we are speaking, instead of just cramming our opinions down another person’s throat.
But don’t think I’m letting the people taking the advice get off scot-free. It’s great to get advice, but in the end it the patient’s responsibility for their own health. As much as the doctors don’t have all the answers, the person you’re taking advice from behind a computer screen doesn’t have all of them either. Taking what they say as gospel is no better than going by your numbers alone. There’s a happy medium: be your own advocate. Listen to your own body, and do your own research. See what does and doesn’t work for you. At the end of the day, it’s your health and body. And if somebody in a group doesn’t agree with your choices, let me ask you this: how does your diet or medication affect their lives? Bottom line… IT DOESN’T!!! The only person affected by your choices is you. (this is just MY story, it is different for everyone and I still have mostly positive experiences in all of my support groups)
Support Groups Are Beneficial, But We Should Be Respectful Of Others’ Choices
I’m pretty sure I won’t be Mr. Popular in any Facebook group anytime soon. But don’t get me wrong: I think there is a definite need for all these different groups, and I think the information shared is very beneficial. The Thyroid community itself is huge, and I want to hear other people’s experiences so I don’t have to go through them as well. And if there’s a new protocol out there I can try, I want to know about it. But I don’t want to feel judged or rejected because my choices don’t match yours. In my opinion, a support group is there to do just that: SUPPORT!
With that said, if anyone ever wants to talk or share “war stories,” feel free to contact me. My door is always open. You can check out MY Facebook thyroid support group, Hash-He-Moto and Thyroid Nation’s, Hashi’s And Graves, I PROMISE we’ll be nice to you. (and supportive)
About the Author
Sebastion Kern was diagnosed with Hashimoto’s Thyroiditis and Hypothyroidism in March 2015, at the age of 41. He is a blogger and creator of Baztards.com, a website geared towards empowering people and looking for the positive in any situation. Sebastian lives on Staten Island with his boyfriend, Joseph, and his Chiweenie, Jack. Check out his Thyroid Thrivers story, here.