Everyone has them, those symptoms that remind you that maybe your meds aren’t optimized and something is off. But symptoms are tricky and sometimes it’s like chasing your tail trying to figure them out. This post is not about specific symptoms because quite honestly thyroid symptoms are crazy and there are so many. I want to explore what happens when we put our symptoms in a category of hyper or hypo, too much or little medication, high TSH or low TSH, however you define your feelings of being off.
Darcey and I have been at this a long time. We are constantly learning and discovering new things that make our life a little bit easier. There are also some things we’ve just had to figure out for ourselves along the way. Continue reading to learn about a few things that we wish we would have known and done, at the beginning of our journey without a thyroid. Things that doctors don’t tell you when you are faced with this new “no thyroid” normal.
I know I know, research studies and articles are oftentimes difficult to wade through and understand the relevance to our no thyroid situation, especially if you have brain fog or the attention span of a fruit fly, like me lately. But, this is an important research article that breaks down what is known and unknown in regards to combination therapy for thyroid replacement treatment. As I’ve mentioned before, T4/T3 therapy is fairly new and there isn’t a lot of reliable science backed information and long term studies available yet. I’m going to do my best to pick out the important parts of this article and hopefully you will find it useful in understanding the viability of combination thyroid treatment. I have attached the complete study at the bottom of this summary.
As “no thyroid” peeps we obviously have to take our thyroid hormone medications daily. I’ve read a lot of information and questions online about the correct way to take them. I’m always surprised at how complicated some sources try to make this. Darcey and I have done some research about this so I thought I’d write a quick post sharing what we have learned and of course provide you with some resource links so you can check it out for yourself. Knowledge is power!
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.
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!
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.