I was diagnosed with Hashimoto in 2009 and took levothyroxine for over a year until my thyroid levels seemed to normalize. I even had a period of time around 2011 when I was treated with anti-thyroid medication because I was suffering from palpitations and nervousness. After that, I wasn’t and haven’t been on any medication.
That is until now. (Despite periods where I had symptoms that I believed were thyroid-related.)
My tsh has constantly been in the range since the end of 2014 and is currently at 1.41mU/L for a range: 0.32-5.04 mU/L
My FT4 is at the lowest it has been since 2014: I am at 11.7 pmol/L for range: 10.6-19.7 pmol/L.
In 2014 it was 18, in 2016 it was 17 and in 2017: 12.1 pmol/L. Now it’s at 11.7 and I feel “rotten” and so exhausted, with a puffy face and a foggy brain. I was diagnosed with CFS in 2018.
I have been unable to have other thyroid test such as FT3 or anti thyroid antibodies but have been referred to an endocrinologist today for the first time in 9 years. It’s a small victory for me.
However, I don’t know yet when I will meet with the endo. I understand my thyroid test is incomplete but from the data I have, could it mean I am heading towards hypothyroidism again? I certainly have symptoms. But also concerned it could be a problem with the absorption of b12 so it makes everything confusing...
To anybody who read my whole and long post, thank you 🙏.
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Seahorse76
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Do bear in mind that your graph shows five results - and around 1000 guesses or assumptions. (Based on one value a day.)
It is not unreasonable to suggest that if you had a test on Monday and Wednesday, the result for Tuesday would have been on (or close to) a line joining Monday and Wednesday. When that is extended over time periods as long as two years, there is little justification for making such a guess.
In someone who has no thyroid issues, it is likely not too far out. But in someone with known, previously treated, thyroid issues it is far more a guess and less a reasonable estimate.
If any one of the results were affected by transient issues (e.g. other medicines or illnesses), that single result would colour your apparent results, and their interpretation, for two years.
I think it very likely that you are currently hypothyroid.
I suspect that your apparent hyperthyroid episode was what is often known as a Hashimoto's flare. A period during which an excess of thyroid hormone is released probably as a result of the autoimmune processes which cause Hashimoto's.
Doctors seem to rush to interpret that as hyperthyroidism, even Graves disease, and treat with anti-thyroid mediicnes, yet let hypothyroidism meander on for years.
Thank you so much for your very thorough reply, helvella.
This graph isn’t the best tool and can’t bring a diagnosis if it’s taken by itself without considering my past thyroid history+ current symptoms and low b12+ low ferritin.
I really hope I can be treated again now. I feel so unwell.
I booked an appointment with a doctor for December 2nd, to request to be put back on levothyroxine again. She is away next week, and I prefer to go see her since she is the only doctor in Vancouver that took her time to listen to my concerns since 2017 ( and I saw quite a few doctors since I am very frequently sick with viral infections and have felt “hypo” for some time now.)
I have been referred to an endo but I don’t know how long it will tak for me to actually see him/her. I don’t want to wait for months to be treated. ( Or in the worst case , denied treatment...)
I am scared of being refused treatment because of “normal” tsh and it’s bringing a lot of anxiety. I feel vulnerable and depressed.
I believe I was misdiagnosed with CFS when I have in reality hypothyroidism.
Thank you again for helping me and taking the time to give me a detailed answer.
Yes it makes sense why the FT4 is lower now than it was when I started treatment in 2009.
Now I really hope I get treatment to help manage my symptoms...
If the doctor I will see on December 2nd refuses to give me Levo, I am seriously considering going to see a naturopath and request to be prescribed NDT.
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