living without a thyroid
I know you have seen it. It is literally everywhere in the thyroid internet world. If I had a dollar for every time someone dropped “it” into the comments in a thyroid Facebook group, I’d be a freaking millionaire! It’s a bunch of nonsense and it makes my blood boil every time I see it. The “it” I am referring to is the optimal thyroid levels meme. It is simply not helpful, not even a little bit, zero, none, no help at all.
My commitment to you here is honesty. What I know is that when we’re feeling alone with our darkest thoughts, we’re not always sure someone else has felt the way we do. I think we’re more similar than we are different. Maybe my truth will reassure you that you are definitely not alone.
While my fear list may not be in order of worst to least fearful, there is a definite “these are the big scary ones”, and “these are the lesser fears. My bet is that you haven’t come away from whatever part of this journey you’re on without collecting a few of your own along the way.
When Darcey and I talk about thyroid hormone levels we usually refer to the percentile of the reference range. For example: I might say, my FT3 is 47% and my FT4 is at 30%. It’s easier to compare and record on our spreadsheets when it is converted to percentage of range. It also keeps things simple when you have different labs assays and reference ranges. For instance, I live in the USA and Darcey lives in Canada, the pmol/L to ng/dL conversion gets confusing and tedious.
It’s quite simple to figure out your percentage rage. I’m an English major and even I can do it!
Do you follow one or two “expert” thyroid professionals online? Do you spend time listening to podcasts, Google searching “thyroid hormones”, or “optimal thyroid levels”? I have spent far too many hours on that last search term and it’s led me to many places; not all of them good.
This topic is a testy one. Here are six questions with my thoughts about TSH. Let’s examine TSH – experiences, thoughts, beliefs, and biases. Please feel free to add your own input in the comments section!
Just the title of this mysterious board certified endocrinologist’s website was enough to make me dive in and read every blog post and listen to every podcast he has done. “HD” as he calls himself has some strong opinions about today’s thyroid treatment and the overall mythical nature of common ideas that circulate on the internet.
I have just discovered Dr. Toft and will continue to update this post as I learn more about him.
I first read about him on the Health Unlocked Thyroid UK group. Everyone in that group was up in arms because he has conflicting ideas in regards to TSH suppression. He feels that it is acceptable to have a below range (very suppressed) TSH on T4 mono therapy, but when on T4/T3 combo therapy it is important to stay within the accepted laboratory range. As you can imagine, his statements are causing a lot of opposing opinions.
Paul Robinson is a thyroid patient advocate (not a medical practitioner) and is the pioneer of the CT3M of dosing T3. Most of his information is for hypothyroid people with a thyroid and he writes more towards T3 mono dosing patients. He has published three books and has an informative blog. Darcey and I have both tried his CT3M. I think we both had favorable results but not enough for me to stick with setting an alarm for 4 am everyday. I do think it helped me tolerate T3 when I was having difficulty adding and increasing.
The subject of this post hits very close to home for me. Apparently it does for a lot of us without a thyroid because it is a very popular topic in thyroid groups online. The mental health aspects after thyroid loss is profound. For me it is the first hint that my levels are off.
My medication saga is a long and winding road of curves, hills and numerous crashes. Some days when things are crappy I think that I will never get it right, other times I’m so full of hope and think that I have finally cracked the code and found my magic dose. It is definitely a path of emotional ups and downs.