Adjusting levo based on symptoms (update)

[ThyroidLadyLondon]

So I thought I would share with you my chart of what has been happening over the last couple of months with my levothyroxine intake.

(See sheet 2 in the below)

docs.google.com/spreadsheet...

As I have written here previously I am taking the levo based on my symptoms, so when I feel weak I decrease the gap between taking a 50mcg pill and when I feel "hyper" I increase the gap. It isn't all that easy of course, as "hyper" is just an indication that my body is using up the hormones at a faster pace and I may pay for it a couple of days down the road when the internal supply get a little depleted. But nevertheless, my t4 reading, at the last count was optimally within range (18), although my TSH was rather high (17).

What has been a big change for me the last two months is that I have started full time work, which has been a big change after being at home with the children for the previous five years.

For a historical perspective, I was diagnosed with hypothyroidism two and a half years ago, after the birth of second baby, but was likely symptomatic of milder hypothyroidism after the birth of my first child two years prior to that. At my lowest point, about two months after being diagnosed, my TSH was over 100 and my t4 was way under range. No one tested my t3 at the time. After I started "powering-down" at the lowest points i went on levothyroxine, starting with 50, then 75 and some day 100-125 if I still had "power-downs". I felt crap most of the time of being on levo. Fatigue and brain fog were present almost all of the time.

I started taking the approach I take now, after seeing a doctor I have written about before, who explained that we can all recover our thyroid function, particularly if recently diagnosed (as levothyroxine in the long term reduced thyroid volume and therefore output of our own t4/t3), and that recovery has much to do with reducing your body's consumption of thyroid hormones. i.e. rest, reduction of stress, keeping warm all leading to reduction of calorific expenditure, and therefore your body's use for and need to make larger quantities of t4/t3. (This is a very simplified explanation and there is a lot more nuance around the actual structural condition of your thyroid, proportion of healthy to damaged tissue, vascularisation and degree of stimulation from the autonomic nervous system.)

I gradually increased the gaps between the pills I was taking and experimented with different dosages (half of a 50 every day, half of a 75 every day, 50 every other day, etc), and now, a year and a half down the road from taking this "lifestyle change" approach, I am down to about 100-150 mcg a week on average. for the last few months I have kept a diary of how much I take and my symptoms, and I thought some of you might be interested to see what that looks like.

I am really keen to hear from people who have taken steps to wean off levo and to reduce their doses, and how you have gone about this.

Going back to work has been hard. I work in the city and commute in and out every day. I come home to two energetic kids and a household that still needs running. My time for rest has diminished and I feel the worse for it. my power-downs have come back (I will update my symptoms graph shortly - they will show an increased frequency of power downs in the first month at work).

Literally none of the doctors I have been to see have any advice about weaning off levothyroixine. So I would love to hear if anyone has found an approach for themselves.

Thank you for reading!

Genia