Hypothyroid (after RAI in c2004) Spent 2023 improving folate, B12, Vit D although ferritin still poor. Came off PPIs and now take Gaviscon twice daily. Gastritis issues ongoing though. Officially a poor converter (dud DIO2) so really wanted to try T3
Dec 2023 - Trial of T3 with private endo - was on Levo 225mg before - new combined dose T3 20mg (in 2 doses) levo 150mg - this made me feel worse! T4 has dropped to 16/18 through range (max 22) and T3 is 4.1 so creeping up into range, but ferritin is only 62
All tests done fasting at 9am - last T3 dose 12 ish previous day
At review 2 weeks ago T3 increased to 30mg (still 2 doses although I can play around to see if 3 are better, but tbh on so many meds which would make that challenging!)
Apologies for checking in - I know I need to sit it out and find my personal optimal dosage, but still feel rough - headaches and tinnitus, fatigue & tiredness plus gastritis. Next review is end of March though which seems a way off! Appreciate any thoughts plus have 2 questions:
Is 30mg about right for T3 in combo with Levo? I didn't expect to feel worse!
Heart Failure nurse has rechecked ferritin (waiting results) she says if it's under 100 I can have an infusion - has anyone had this done?
Thx
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Rambling9
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Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
so Ft3 false low if last dose midday…..or did you mean midnight ?
Your ferritin might not be optimal, but it's not dire. I don't think the way you feel is that. I have struggled to get my ferritin up for years and feel I've hit the jackpot if I make it to around 68!
If I were you, I would redo the blood test with the correct timings. You need to know how your FT4 looks 24 hours after the last dose and how your FT3 looks around 12 hours after the last dose. Personally I now use 15 hours post dose as per the Thyroid Patients Canada guidelines. But as long as you pick an interval and stick with it from test to test you will be able to spot trends and problems. It could be that you are not on enough T3 yet. Or that you perhaps need a bit less T3 and more T4. I can't cope with T4 being too low I have discovered. Your doctor dropped your T4 dose too far, too fast. So that has hampered you. We usually drop by 25mcg at a time whilst introducing 5mcg of T3 at the same time. I'm betting your doctor walloped your T4 dose right down in one go and put you straight onto 20mcg T3. Not the way to do it.
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
A trial of strictly gluten free diet is always worth doing with Hashimoto’s or with Graves’ disease…….especially with gut issues
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
When I had my t3 trial, the doctor reduced my levothyroxine too much and t4 went quite low. I found I needed both my t4 and my t3 near the top of their ranges to feel well. (T4 20 [12-22], T3 6.5 [3.1-6.8].
I was only on 125mcg of levothyroxine before starting the t3, and the doctor was telling me to reduce it by 25mcg for each 5mcg of t3. By the time I was down to 75mcg I was feeling awful. I needed it to be increased to 100mcg to feel well.
I agree with Slowdragon. You probably need more levo. My final dose of t3 was 30mcg. However, your TSH is still within range and it is usually suppressed on t3, so that may not be enough for you.
You were on a much higher dose of levothyroxine than I was before starting the t3, so you’re very likely to need a higher dose of both than I do.
It took 6 months on a gluten free diet for me to be fully aware of all of the benefits. Don’t expect immediate results.
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