Hi, I have nodules on my thyroid and have been taking 50mg of Levothyroxine for the past 5yrs the reason being to keep the nodules from growing, and so far so good. My last blood test results show my TSH at 0.01 compared to being 1.36 in August 2019. My GP has now reduced my medication to 37.5 mg of levo per day with another blood check in 6wks. I have asked for a test to check my T3 and T4 levels as well. At the moment, I am feeling incredibly tired and at times panicky, is this normal due to my low TSH level, and is this level ok to have or is it too low?
Thank you for any help you can give me.
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pompadour
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It´s impossible to say based on your TSH alone as the TSH is not a thyroid hormone but a pituitary hormone. Only your free Ts - T3 and T4 - can tell if you are over- or under medicated. Especially the free T3 is important as it´s the active hormone. Your dose sounds low, but I have no experience with taking levo to treat nodules. The problem with taking low doses of thyroid hormone is that it´s enough to make the pituitary gland decrease TSH production which further lowers your own production of T3 and T4, while not replacing them. If your free Ts, especially your free Ts, are low, you are hypothyroid. The symptoms you describe are common in hypothyroidism.
Is there any way you could get your doctor to test your free T4 and free T3?
Hi, thank you for your reply. I've been told I have to stay on meds for life, they are trying to avoid removing my thyroid by trying to ensure the nodules don't increase in size. I've never been told that I'm Hyper/Hypo or anything, just that I have nodules and need to stop them increasing in size. I've have asked my Doctor for another blood test to check T3 and T4, are these different to FT3 and FT4? This is such a complex part of the body isn't it. I've taken the decision not to reduce my meds until another blood test has been done, not sure if this is right or not.....
T3 and T4 usually mean FT3 and FT4, yes (F = free). There is also total T3 and total T4 but they are rarely measured as far as I know (and not very useful, it would seem). So you should make sure to have your free Ts tested as they are the ones to tell you if you are hypo or hyper (especially the free T3 is important in this context).
Levothyroxine doesn’t “top up” your thyroid output...it replaces it
So it’s important to be taking enough
Just testing TSH is completely inadequate
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.
RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
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