I'm on 100mcg T4 since I was diagnosed in 2017, I don't have Hashimoto, I'm 22 yo male.
So basically I have hypothyroidism for an unknown reason.
Anyway, I'm planning to quit T4 and check if my thyroid will work again or not, I want to know which is the safest protocol should i follow to achieve that.
Please don't tell me that I shouldn't try to stop medication because I will do it anyway just to see if my thyroid works again or not. if not I will take medication again.
Thank you
You decrease the same way as you increased: 25 mcg every 6 weeks.
But, be warned, when you first come off levo, you well feel wonderful! Better than you have in years. Happens to anyone who stops their levo for whatever reason, and no-one knows why. But, that doesn't mean your thyroid is working again. The good feelings won't last.
And, it will take quite a while to find out if it will work again, given that the half-life of T4 is about 1 week. And, even after the levo has completely left your system, it will still take more time for a thyroid to start working again, if it's capable, while the TSH slowly rises. And, during that time between the levo leaving your system and the thyroid starting working again - if it's capable - you will probably start feeling pretty awful.
And, it doubtless will start working again, taking up where it left off - it must have been making some hormone when you were diagnosed, or you'd be dead. So, the question is not so much 'will it start working again?' as 'will it be able to make enough hormone to make me well?' It's all a question of degree and shades of grey, it won't be black and white.
Thank you very much for taking time and reply to me <3,
Could you please tell me how much time should i consider for the thyroid to be able to work again?
Does it suppose for healthy thyroid to work after 6 weeks? or it requires 12 week to work ?, how i can calculate it?
Can i reduce the dosage 50mcg every 6 weeks ? or it's necessary to be 25mcg?
Thank you.
I was diagnosed with subacute thyroiditis, stayed on 100 mcg for about 6 months. Then started felling hyper (resting heart rate went up). Did TSH test - came back at 0.6. Cut levo to 88 mcg, repeated TSH in 6 weeks - 3.7. Cut to 44 mcg, repeated TSH in 6 weeks - 3.4. Cut to 22 mcg, repeated TSH in 6 weeks - 2.7. Stop levo, repeated TSH - 3.78. That was 10 month ago. Was repeating TSH 3 - 4 months apart - it remained in 2.1 - 3.5 range.
When did you start taking levo? Was it immediately after your illness? I too had subacute Thyroiditis in 2017. Started taking levo in 2020 after THREE years, because my Thyroid could never recover. TSH was sometimes in range, and sometimes 6-7.
Initially, when the thyroid was inflamed, I became hyper. That lasted for about 4 weeks then I became hypo. By the time I got to the endocrinologist my TSH was 65 and I was put on 100 mcg. That was in September 2020
You do know, don't you, that a TSH of over 3 is hypo. A healthy TSH is around 1, never over 2.
Please stop this. You've been criticizing (and rightfully so) doctors for looking only at the numbers and not at the patients, yet you are doing just the same. My TSH was never around 1 for the past 15 years I keep the records. It was in 1.2 -1.8 range before the thyroiditis. With TSH around 1 (or just below 1) my heart rate goes up meaning I'm getting hyper. With my current 2.1-3.5 range I feel exactly the same (or better) as I was before the thyroiditis. To suggest that I need to be on levo just to bring the numbers slightly down is exactly the GPs' approach you've been so much against. Every person is different and what's a norm for one is not for other
That's very true, we're all different. But, I didn't invent statistics. If you look at the graph of TSH levels, that is what it says.
And, I was in no way suggesting that you need to be on levo, if you don't want to take it, don't, but I never mentioned it. It was just a general warning for anyone that reads this - not just you.
If your TSH was over 3, and you felt terrible, as happens to so many people, but because it was still in range your doctor told you there was nothing wrong with you, you'd be very happy for a doctor to go by the numbers. And, in any case, I don't criticise doctors for going by the numbers, I criticise them for not understanding the numbers, not listening to the patient, not believing the patient, etc. etc. etc. Also, I criticise them for using the numbers to suit their own ends - i.e. diagnosing as few people as possible with hypothyroidism and under-treating those they have diagnosed.
It's important that we all understand the numbers, and what they can mean, and apply them to ourselves. You were implying that having a TSH of 3.5 was perfectly normal and meant that your thyroid was working perfectly well because you don't have symptoms. You don't have symptoms because the TSH is stimulating your thyroid to make 'normal' levels of thyroid hormone, that's true. What is not 'normal' is needing that much TSH to drive your thyroid to make the correct levels of hormone. That means your thyroid is struggling. And that is something one ought to understand.
So, all in all, no, I'm not doing just the same as doctors, I'm trying to inform people so that they can all do better than doctors and understand their own disease.
Well, you can't expect your thyroid to be perfectly healthy after the inflammation. Any inflammation leaves scars. What used to be the hormones producing tissues are now in part just connective ones producing nothing. Of course the remaining thyroid must work harder to produce the same number of hormones
I also had subacute Thyroiditis in 2017. I don't have Hashimotos. My Thyroid was perfectly fine before that. After the illness, I spent 3 years with TSH between 3 and 8. I started taking levo 3 years after the illness. How long was it in your case? Because they toldo me it can take up to 28 months to go back to normal. 3 years was enough to think the danage was Big.
I was on levo for about 10 months. For subacute they say the odds of recovery depend on the TSH number at the time of diagnose. The lower the number the higher odds of full recovery. With my TSH of 65 at the time of diagnose, the doctor thought I would stay on levo for life
You can't calculate it. You can only wait and see what happens, testing your levels every six weeks.
I really would not recommend reducing by 50 mcg at a time, it would be too much of a shock to the body. You need to reduce slowly and gently, giving the body time to adjust to each reduction. 50 mcg would probably be too much to adjust to so would take longer.
@guavas
OK, here is the treatment protocol for subacute thyroiditis (if this is what you had). I didn't exactly follow it because my endocrinologist was very much against me doing anything rather than staying on levo indefinitely
If symptomatic hypothyroidism occurs then levothyroxine 100 microgams daily should be commenced. At 6 months the dose should be halved and TFTs repeated 6 weeks later to determine if ongoing treatment is required. If patient remains hypothyroid, consideration should be given to repeating this manoeuvre at 12 months.
If patient is euthyroid at 12 months, anti-TPO antibodies should be checked. If anti-TPO
antibodies are positive then the patient should have lifelong annual TFTs. If negative,
consider 5-10 years of annual TFTs then stop if euthyroid .
page 15
Have you ever had an ultrasound?
No thyroid medication since January 31st😳
Feedback loop TSH/T4/T3
Low T4, bad reaction to T4 medication
