In the absence of a firm diagnosis, if someone is given a 'trial' of levothyroxine, will it be possible to come off it, in case the trial did not bring the desired results for 7 months - even with gradual increases of 25 mcg.
Or is one tied to it for life?
At initiation of treatment:
TSH 3.2 (0.3 - 4.5)
FT3 5.3 (3.1 - 6.8)
FT4 18.3 (11 - 22)
Now at 75 mcg:
TSH 0.66
FT3 5.2
FT4 21.2
If I am not sure if I benefited from it, can I gradually come off it? Both antibodies negative.
It is usually mentioned that thyroid medication is for life. So if my GP gave me it on a 'trial' basis on my request, do I have to take it for life even if no real benefit is noticed?
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activelazy
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Yes it will be possible to come off it but why would you? Your free T3 - the active hormone - is now optimal. If you are still having problems you need to have:
1. vitamin D
2. ferritin
3. vitamin B12
4. folate
plus a full blood count.
You need optimal vitamins and mineral levels to have levo work properly.
I am not saying that I am confident that the trial has failed but it kind of looks like. I dont have hashimotos auto immune thyroiditis for sure. I had an inflammation to my thyroid gland apparently viral in nature. Sub acute thyroiditis mostly resolves on its own and therefore, without medication my tsh kept coming down from 6.3 to 4.5 to 4.2 to 3.9 to 3.2 to 2.7 and even to 2.5. Did not go any further down. However, did go back up to 3.2 though. From 6.3 to the final 3.2, it took 1 year. This is when I requested a 'trial' of levothyroxine. Wasn't easy to get it, I am sure you will agree because even before that trial, my FT3 and FT4 were always very respectable. e.g. FT4 always above 18 at least (even has been 20.2 without levo - when tsh was 2.5) and FT3 always at least 5.1 (range 3.1-6.8).
As I was not myself, I decided, after learning here, that tsh better be around 1. And it actually was 1.08 before illness. So, I made it my target ...and even achieved it. Somehow, I am not sure if any marginal and intermittent improvement I get is because of levo. In fact, I might be having some new symptoms too e.g. feeling very thirsty and dry mouth (Is that a sign of over....?). Either 75 is too much for me or any amount is too much for me....built into the system slowly by now.
I have also corrected my other deficiencies as I came across them like B12, D and ferritin. Folate was always good without supplementation.
So, my one thought is, any improvement experienced (does not mean I have recovered by any means) might be because of correcting my other deficiencies rather than levo - as my Frees are where they were- and I am not expecting my thyroid to pack up gradually because it had an inflammation which is long gone - I don't have the auto immune disease.
After 16 weeks on 50 mcg, my tsh was 1.4, FT4 20.1 and FT3 5.4.
After 5 weeks on 75 mcg....as mentioned on the top.
I have attached a picture now. Please see and tell what you think.
I am still not saying that i made a mistake in taking it. All I am saying is 'Am I taking it unnecessarily?' given my results.
Levo is for life because thyroid problems don't get better, they usually get worse, and you need thyroid hormone to live.
In the unlikely event that you were given levo by mistake, there was nothing wrong with your thyroid, you weren't hypo, you could easily come off it and your thyroid would just take up where it left off.
But, you started with a TSH of 3.2, which is showing that your thyroid is struggling, if nothing else, even though your Frees weren't bad. It can't go on struggling forever, and your Frees would gradually drop. Why wait for that? Why not be proactive and stop the problem before it begins?
Just one question : was that test with a TSH of 3.2 the only thyroid test you've ever had? If not, what were the other results?
I have lots and lots of thyroid tests time and again. tsh, ft3, ft4, tpoab, tgab, tsh receptor ab. All antibodies were negative. I have seen the numbers and they were really low. My frees were always very good I think, particularly when I compare with results of other people on here.
I am not saying that I definitely not need levo but may be i did not, considering the trend of my bloods. May be i am going over at 75 mcg. I have actually reduced it to 50/75 alternate days at the minute. I had neck pain last week quite a lot in the thyroid region and currently also feeling extremly thirsty with a dry mouth. Not sure if indicates overactive.
Please see my reply to Bluebeg and attached picture. I shall be grateful for your opinion.
What a shame they didn't do the Frees when your TSH was 1.08. That would have been very interesting. Do you remember how you felt at that level?
How many times have your TPOab and TGab been tested? Were they near the top of the range at any point? We always have to remember that some Hashi's people never develop high antibodies, and are diagnosed by ultrasound scan. Have you had a US?
I'm pretty sure that constant thirst and dry mouth are not hyper symptoms - or perhaps we should say over-medicated symptoms, because you've never been hyper. I had them when I was very hypo. But, there could be other reasons, like diabetes.
Anyway, whatever the reason for all of this, the answer to your main question was/is that taking thyroid hormone replacement when you don't need it, will not shut down your thyroid permanently, so that's one thing less to worry about.
I wish always they checked frees when TSH was 1.08. But that's NHS for us. I felt well, this was just a routine test not because I had a Thyroid issue. I used to be very active then.
Antibodies were checked more than once and were near the bottom rather than top.
E.g one that should be <115 was 23.
Ultra sound was done 3 times over a period of time. When inflamed it revealed viral Thyroiditis, first and second time. No nodules, nothing sinister. I requested it again after about a year after inflammation was over and it came back completely normal. Very occasionally, I get a day or two when my neck front aches a bit like first time (not same intensity thank goodness), and it worries me. Thank you for saying dry mouth is not because of overdose. I hope it's something temporary or caused by a couple of bears I could not resist a couple of days ago 😎. Or caused by anxiety that I get either because of some aches and pains or from worrying about all this. Unless, there is some anxiety which I can not identify and relate to overdose (if over).
Above all, thank you for saying that if, if at all, I come of thyroxine, obviously slowly, my thyroid will not have shut down to that extent and will pick up again.
Not that I am surely going to do this but I am considering 75 to be too much, particularly with no increase in FT3. In fact a fall from 5.4 to 5.2.
The trial has worked in the sense that it has improved your thyroid levels which are good on 75mcg. Symptoms can lag behind good biochemistry by several months. Levothyroxine replaces low thyroid hormone, it does not 'shut down' your thyroid so it won't 'pick up' when you stop taking Levothyroxine.
If you want to trial stopping Levothyroxine just stop taking it, you don't have to wean off. You may feel better for a week, perhaps two, but after that your FT4 and FT3 will have dropped and TSH risen and I expect you will start feeling quite hypothyroid.
Are ferritin, vitamin D, B12 and folate optimal? Low/deficient levels are common in hypothyroid patients and symptoms are often confused with hypothyroid symptoms.
When you say it has worked, I am confused in the sense that my FT4 has gone up near the top (or may be slightly over the top now because I tested at 5 weeks only), TSH has gone near the bottom of the range but FT3 is same, even less. More or less the same though. So levels (Frees) were good at 50 too, isn't it?
So, active hormone is where it has always been. Does FT4 do anything on its own? My energy levels are ok...ish. If I could not boost my FT3, did I achieve anything by suppressing my TSH? May be I did, I am just not sure, as new symptoms keep bothering me. I have developed a dry mouth and bitter taste for 2-3 days similar to when you are ill with an infection and you take antibiotics. But I don't have that. Could I be having some anxiety causing this. Excess thyroxine can cause anxiety but how will I tell if I am anxious. When I reduced my dose to 50 for a week, my pains which started in 5th week on 75, eased. Now I am on 50/75 alternate days and have developed pain in my hands again plus this dry and bitter mouth. Energy otherwise is not too bad. I was never like 'want to sleep all the time'.
Did you mean it (Thyroid) would pick up if I stopped taking levothyroxine?
Also, I did not know there was no need to ween off. I am surprised by that. Anyhow, my FT3 was same before medication (5.3), so why should it drop if I stop thyroxine. That's what I am saying- if you say it will pick up from where it was before the trial, it should still be 5.3 approximately, isn't it?
Your higher TSH was stimulating thyroid to produce T4 and convert T3. Without Levothyroxine T4 and T3 would have dropped and TSH would have risen.
TSH 0.66 is within range, it is not suppressed.
No, I didn't mean your thyroid would pick up if you stopped taking Levothyroxine, quite the opposite. It hasn't shut down because you are taking Levothyroxine so it won't pick up if you stop taking it.
Why are you ascribing the bitter taste and dry mouth you've had for 2-3 days to Levothyroxine?
Just because medicines can give bitter taste, particularly, if in excess. May be it will just go away!
I don't know. Should I just carry on with 50/75 and get tested? I do wonder though that my TSH kept falling without medication. And FT3 FT4 stayed good.
Some months after I had RAI I had very dry and salty mouth and my throat became painfully dry at night. I used a moisturing mouth gel for a couple of months which was helpful and the problem gradually improved.
Soon after I experienced some taste disruption intermittently and had to radically change my diet for a few weeks to cope with it. I had no illness and hadn't changed Levothyroxine, T3 or supplements I was taking. It would last for up to 6 weeks and then simply clear up. Happened about 4 times in 2 years and hasn't recurred thankfully.
I think these things just happen and it is a mistake to blame everything on hypothyroidism and Levothyroxine.
You weren't overmedicated on 75mcg but if you feel better on the lower dose then just continue.
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