Someone looking for thyroid advice can go through the following stages when they land on internet forums dispensing advice:
1. The Journey Begins – don’t feel well
2. Seek Help – most likely from a medical doctor
3. Disappointment/Disillusionment – not getting any better, and may have spent a fortune on doctors
4. Seek Alternatives – find thyroid internet support/chat groups
5. Hope – maybe their protocol will work
6. Caution – some will be wary and questioning, but others go straight to
7. Enchantment – buy-in, assimilation, commitment to protocol
8. Love – they experience some improvement after starting and want to share the process with everyone and give advice, just like they were given; some become the “new” moderators
9. Plateau/Decline – as time passes, improvement stops and some get worse as they take their dosages higher and higher, thinking more is better
10. Crash and Burn – now worse than before any treatment
11. Angry/Disgusted/Frustrated – what am I doing wrong?
12. Blame The Patient – groups/moderators blame the patient for not getting better; it is not that their protocol is faulty, but that some other electrolyte or hormone is too high or too low and preventing thyroid optimization
13. Realization – I am so messed up, and I’ve been had
14. Hit Bottom – Now what?
15. Questions and No Answers – some who complain or question the protocols are actually “booted” out of the group and left to fend for themselves; some migrate to other groups still in search of answers. Sadly, many actually blame themselves for not “correctly” following the protocol. Very few consider that the protocol itself could be flawed and might not work for everyone, or that it is so complicated, that few can make it work.
What is my point in writing all of this? It is to caution people that there are sources of terrible thyroid misinformation out there, and I have watched in horror as more sick, innocent people continue to fall prey to these groups. Just because someone says it’s so doesn’t make it so. Where did this advice come from? Did someone make it up years ago and its just been passed on like some old wives’ tale? Is there any research to back up these protocols? Do the people posting sound like they’re getting better or worse?
Every now and then a new member will ask where the success stories are. The answer given is that people regain their lives, get better, and then no longer post. Little do they know that some leave in disgust, worse than ever, or that others have been banned from the group because they questioned the protocol when it didn’t work for them. This is where cognitive dissonance, or rationalization and denial, comes into play. I see people floundering, who are in such a vulnerable, sick position, that they are willing to try anything to regain their health, and they completely discount and ignore all the obvious red flag warnings and their own intuition. One red flag warning is a group that moderates every single post. What don’t they want you to see? People believe what they want to believe, because they need hope that some protocol somewhere will restore their health. Mainstream medicine didn’t work, but maybe, just maybe, this will! Especially if they have already started on the protocol, they may gloss over any negative side effects they may be experiencing, and continue on, hoping things will improve. To acknowledge that what they are doing could be wrong, would also mean acknowledging that they did something foolish. The brain cannot handle belief in polar opposite arguments, so rational arguments and research will be discounted and dismissed.
My advice? Question everything! Listen to your body and your intuition and never go against your better judgment. Be warned that both too much and too little thyroid hormone can greatly affect your brain and ability to think and reason. Once you embark on these protocols, you may not be able to think clearly. Are you prepared for that? Is there someone who can help you monitor your progress? Who can pick you up in case you stumble? There are some groups giving good, knowledgeable advice based on sound principles, but they are not as popular as those that are sources of terrible thyroid misinformation. Do your homework and listen to your body, not some person on the internet with a “god” complex as a moderator. Your health is at stake. A moderator or group that has only one protocol, theirs and only theirs, cannot possibly give good advice. Be wary of rigid, dogmatic, authoritarian, “because I said so” answers. Only trust groups whose moderators are open-minded and willing to engage in discussions. We are all so different that no one protocol, nor one medication, should be expected to fit all of us.
There is also much sincere, but misguided advice given by patients to other patients. Be warned that some of the sickest patients give the most advice. Here are some of the most memorable, misinformed posts (paraphrased) I can remember reading:
Is your hair falling out? Then don’t wash it so often or brush it too much.
Your body will only absorb as much thyroid meds as it needs.
I am on 162.5 mcg T3 and my heart is racing. What am I doing wrong?
I am on 12.5 mcg T4. Why do I feel like crap?
Again, my point is that some patients, while well-meaning and wanting to share, may know nothing about thyroid physiology and how thyroid hormone affects the entire body. Or worse, in their brain fog, they have all the concepts mixed up! A little knowledge is a dangerous thing. Doctors may know some thyroid physiology, but are often overly reliant on misleading TSH and lab ranges. Unfortunately, you will have to educate yourself and be your own patient advocate. That is the current state of thyroid treatment today. I sincerely hope that everyone reading this finds the answers they seek. We all deserve better health!