Hi from Canada here. I just got the results back from my CT scan. Scan was for my sarcoidosis but they scanned the thyroid again. The nodule went from 1+ cm to less than 6mm. I had the biopsy done almost 2 years ago.
I have a confession though, I went off my medication because between the cost and finding a doctor that doesn’t take 2-3 hours to get into see I haven’t had time.
Is it just a coincidence that the nodule shrunk or could it be related?
I should say I was on 200 of levothyroxine a day. I’ve been off for 3+ months no side effects of not taking it that I’ve noticed.
Am I playing with fire here?
Thanks
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Katchame
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If you have hypothyroidism and have stopped taking levothyroxine you could be damaging your overall health.
If someone has hypothyroidism and doesn't take thyroid hormone replacements, eventually they go into a myxedema coma and can die.
Most on this forum take care of their hypothyroidism by themselves, usually because they find that they feel levothyroxine doesn't improve their health or they have symptoms but undiagnosed (in UK) until the TSH is 10. They get their own blood tests and try alternative thyroid hormones that they source themselves.
Hypothyroidism is fatal if untreated. It is a slow and gradual process finally resulting in a myxedema coma.
I don't think not taking your levo would cause your nodule to shrink. Just coincidence, I would imagine.
Yes, you are playing with fire. 200 mcg is quite a high dose, so you obviously needed it. Doctors don't prescribe that much levo for nothing. You may not be feeling the effects of not taking it at the moment, but that will come. I lasted for six months (not that I'm encouraging anyone to try, don't think that!) but, when I realised how much weight I was putting on and got my thyroid tested, my TSH was up to 45. It had only be 13 on diagnosis! There were probably other symptoms too, but as I was ill with something non-thyroid related, it was difficult to tell. I had to get back on it quickly!
Time to start taking charge of your health, me thinks! Do you ever ask for a print-out of your blood test results? If not, you should. If you live in the UK, it's your legal right to have one. And it is essential that you understand your disease and those results.
I’ve been doing really good about doctors appointments as last year I was diagnosed with sarcoidosis. But since I was going two times a week for scans and tests and biopsies. I got lazy I promise to get back on track. 💕
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 Thyroid antibodies are raised
Get tested BEFORE starting back on Levothyroxine
All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
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