Is there any way your thyroid function will kick start again? I have Hashimoto's and feel like conducting an experiment as I have read some people start to feel better without their Thyroxine and some have managed to come off altogether. Now I won't do this lightly as I know there are some risks but I wondered if I could come off my meds maybe with the help of a functional medicine doctor.
I am 3 years into my thyroid journey and now feel like fighting back and working hard to restore my health without the need for meds...if this can be done...?
Anyone advise for or against this course of action?
Thanks
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Syd35
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Just been doing a lot of reading about people who have managed to kick their Hashi's into remission and wondering if I can do it too. Fed up of the weight gain etc etc and feel like giving my body a chance to do it's thing naturally if it can be done. Thanks for your reply though
People do not "kick their Hashis into remission". What happens is that quite independently of anything you do, the condition might automatically partly go into remission for a while, but it is very likely to return. There are some lucky people whose disease does reverse if it has not gone too far, but no one can guarantee it will not return at some time in the future.
I found I only gained weight when my levo wasn’t optimal. For me that meant to be optimal my tsh was 0.84 and free ts in upper third of range, in fact t4 was almost always around 20 mark. We are all so different though. After being reduced drastically by the doc at one point I would never attempt to come off completely. I was extremely ill
If you come off your levo, you thyroid will do the best it possibly can to produce hormone. But, it will never be enough to make you well, otherwise, you wouldn't have been diagnosed hypo in the first place - we all know these diagnoses are not handed out lightly!
Hashi's slowly destroys the thyroid. And, even if you managed to stop the process - that which I sincerely doubt - you could not repair the damage already done to your thyroid. Thyroids do not regenerate.
It's true that people do stop their levo and feel better - believe me, we've seen it all on here! - but it is just a temporary feeling - a paradox that nobody understands. But, sooner or later, the hypo symptoms start creeping back in again. You cannot live without thyroid hormone, it is needed by every single cell in your body. And, if there's not enough, all sorts of things go wrong.
If you don't like levo, or if you feel it doesn't work for you, there are alternatives that are worth trying. NDT, for example, extract of pig thyroid. It works for a lot of people. And, then there is synthetic T3 - which is good for people who cannot properly convert T4 (levo) to T3 - either added to your levo or taken on its own. T3 only is my thyroid hormone replacement of choice. But, a hypo on no thyroid hormone at all just isn't an option.
Fab reply thanks Grey. So if I came off to see how I felt would I go back to my usual dose if I start to get symptoms again? Although guessing it would take a while to build up the levels again enough to feel well. Also how can you find out how damaged your thyroid is would you need a scan?
As to whether you would go back to your normal dose, it depends how long you were off it. You might have to start at the beginning again, if you left it too long. That's what happened to me. I was off T3 for six months. But, I wouldn't recommend anyone else left it that long!
Do you take T3 only? What do your labs look like? How do you feel?
Those are the questions to ask yourself when asking if you need an increase in dose. How much I take is neither here nor there. We're all different.
But, just for the record, right now, I take 75 mcg. But, at one point, I was taking 225 mcg. That was how much I needed at that time. And, we need what we need. I self-treat, so I have the freedom to experiment and find out what I need. The problem with doctors is that they think they know what you need and you don't. Your doctor probably thinks that you're already on a high dose, and that increasing it would be 'dangerous' or something. It's a hard struggle to get what we need with doctors.
As a Hashimoto's sufferer myself, I can only agree with Greygoose - the only thing that will happen if you go off meds is that you will eventually feel worse. Hashimoto's means your body is no longer able to produce enough thyroid hormone on its own.
There are some (in my opinion) less trustworthy integrative practitioners who claim you can heal/reverse Hashimoto's, but I doubt anyone with Hashimoto's can go off medication indefinitely. Some changes may help - going gluten/lactose free for instance - but it won't correct the underlying issue which is a thyroid gland that has been destroyed by an autoimmune attack.
As Greygoose points out, if you don't feel well on T4 only, there are other options such as NDT or T3. Some do well on NDT, some on T3+T4, some on T3 only, or a combination of NDT + T4 or NDT + T3, depending on the patient's needs and treatment response, and it can take time to find the right drug (combo) and dosage for YOUR needs. But please don't just go off your thyroid medication as you could end up feeling much worse than you felt in the first place!
Thanks for your reply. Incidentally did manage a trial of T3 last year and ended up feeling much worse so stopped it and continued with Thyroxine only. I feel I am grasping at straws judging by the replies so guess I'll just need to keep plodding on like the rest of us.
If you don't feel well on T3, there could be a number of possible explanations: adding too much too quickly, low cortisol, just to mention a few.
Do you have any recent labs (TSH, FT4, FT3) to post here? Some on T4 only need their FT4 levels high in range and a low TSH in order to feel fine. Many doctors think "anywhere in range" is fine, leaving patients to struggle.
Thanks the cat - I generally post with results and have had some good feedback. Thing is I am not feeling too bad just now but certain aspects I wonder if it's down to the Levo hence me wanting to try this "experiment". I am quickly going off the idea though after reading some of the comments and maybe I should leave well alone! 😊
Please don't. I tried reducing my thyroxine last year as I had never felt right although the docs said I was fine ie in range. I had spells of feeling good and spells of feeling awful on various reduced doses. Till the crash came and my tsh was 21 ft4 12 and Ft3 3. No need for ranges was obviously dire. I now realise that I felt ill because I had never been properly medicated. So since Nov 2018 I have been working my way back up the levo doses feeling rough. Am now starting the battle to get t3. Also reducing your dose may deplete vitamins and even if you quickly get back to your old dose you won't be able to use it as efficiently until vitamins are optimal.
Thanks Lala - really tempted to try it as an experiment but well aware the resulting crash may come and hit me hard. It's such a frustrating disease to try and work out best course of action.
Yes it is so frustrating. My mistake was that some of the symptoms I had when I had hyperthyroidism were also symptoms when I was hypo after the rai. It made me scared to take increasing doses of levo and once I had reached in range the docs said I was fine.
You say you're tempted to try and reduce/come off it - but would this be in conjunction with a strict autoimmune protocol? Will you be resetting your gut biome and immune system first (which can take at the very least 3 months but usually 8 months)? Or are you just feeling a bit better and want to have a go at coming off it?
I'm no expert on thyroid and the meds, as I am still learning myself. But even I could see the latter is unlikely to make you feel better for any length of time.
If you are unhappy about taking thyroid meds I would think you'd need to switch focus to tackling the root cause first - not in conjunction with coming off meds - and when your immune system and gut biome is healthy, then see if you can take a bit less. I plan to do this shortly, but I'm still going to keep raising my NDT until I feel myself again, and any lowering will be done once I've reset my gut biome, and it will be done very slowly and with great caution - and lots of testing.
I can't imagine even thinking of coming off meds that are keeping you well without at least tackling the root cause of your illness as a backup.
Thanks Nico I agree with what you've said. Wishing you well on your journey too 😊
I reduced it once dramatically and at some point came off it for a month. Dear God, I was sick. I was lucky I didn't lose my job. I spent two months in bed. My tsh doesn't budge, it's suppressed after years on meds. I couldn't breathe, walk, eat, sleep for months. If you decide to do it, do it slowly. Since that episode I became super sensitive to meds as my doc cut my pills down to zero from 3 grains of NDT. Glad to be still alive
I completely understand you. I have been on all meds possible, recovering now slowly with combination of Levo and t3. When you go off drugs abruptly, if you need to go back on them, it could take many many months. I also have Hashis. There are certainly people who were put on thyroid meds wrongly I'm sure, but most of us need them to function. All I'm saying is be careful and whatever you, do it gradually. You don't want to cause panic attacks, cortisol fluctuations, insomnia etc
If your thyroid was capable of producing enough hormones you wouldn't have been diagnosed as hypo in the first place. If you stop taking hormones your thyroid will gradually go back to underproducing hormones like it was before, BUT, if you have hashis and more thyroid tissue has been destroyed since your diagnosis, your thyroid will produce even less hormone and you will be at a very much increased risk of early dementia and heart failure. Before thyroid hormones were discovered, those with underactive thyroids ended up in the mad house and died.
Syd35, I understand your frustrations and searching for something to try! If you're getting weight gain and other unpleasant symptoms from Levo it is likely you're on the wrong dose.
Here are some more things you can work through and check, but there are always more things to try!
1) Adjust your thyroid hormone dose until freeT3 is high in range (if on Levo the first place to get to is freeT4 high in range).
2) Correct any vitamin deficiencies.
3) If you have Hashi's try being gluten free and after that dairy free (for some this gives a huge improvement in symptoms).
4) Try to add some T3 to your dose.
5) Look into adrenals and work on those.
6) All sorts of other things! Autoimmune protocol type diets, looking into minerals and more obscure vitamins, working through trying out T3 monotherapy or NDT instead of Levo, meditation and resting more, following protocols of people like Paul Robinson or Isabella Wentz, etc, etc.
I definitely know what you mean with it being overwhelming! At first I used to just make the effort to get onto the forum and read a bit every day, even if I didn't understand much. Slowly things started to sink in and I learned to read blood tests, and hear about other people's experiences.
Eventually once you're familiar I suggest picking only one thing at a time to work on, and don't think too much about anything else until you've got clear on that one and have a bit of head space free a few months later to go onto the next.
Getting your dose right and vitamins right are essential, so look into those first. Only if you get those looking good but don't get the improvement you wanted do you need to start looking into other things.
Same here. I joined the site for about a year before I started to come back regularly. It was like Sanskrit reading the info at first... and then the more you immerse yourself, the more it starts to make sense and you learn.
I actually feel sorry for the old 'uns on here and admin - we must drive you round the bend when we first join up, lol. I must have asked the same questions over and over about a million times as it just wouldn't sink in. Luckily people on here are very patient, though.
Im newly diagnosed hashi and just coming to terms with ‘forever medication’. So i totally empathise especially if you don't fell 100%. My endo said a definitive ‘no’ to me being able to reduce my anti-bodies and slow-dragon on here has also offered some useful insights. The more I explore this idea, the more i begin to feel that finding my anti-bodies trigger/s will be like looking for a needle in a haystack. It will involve a highly restrictive diet (less so if you eat meat perhaps). Then there are environmental triggers. For me this all feels overwhelming right now. I guess if you're willing to take all this on, you could tentatively try-its your life/your body. Medical advice would probably say different but can be wrong. Sounds like a good idea to get a thyroid scan- i found somewhere that would do that but only with a G.p. Referral. Anyway i must stress this is all very uninformed opinion on my part Im NOT medically trained. For me, I'm going to stay on the levo but go gluten-free for now as I have daily diarrhoea Good luck and do let us know!
Good luck also msmono and thanks for your reply when you are just at the start of your own journey. You will find the help on this forum extremely supportive, so you've come to the right place 😊
If you post recent labs with ranges we’d all be able to help better. Stopping your Levo will only cause you more issues.
Without my seeing your labs, but based upon your symptoms, you are most likely not yet optimally medicated. It’s frustrating having to wait 6 weeks to see/feel the results of an increase/decrease. Dr. Blanchard figured out a way to speed up that process. He would refer to it as as “jumpstart” and patients would see/feel results in 2-3 weeks.
What are you currently taking and what is your daily dose?
Sorry yes I would be interested to hear about that I read up on Dr Blanchard last night and want to get his book. I am on 125mcg Thyroxine and still have quite a bit of T3 left as my trial of it didn't go well so I stopped taking it. I wonder if I wasn't on an effective dose so maybe worth trying again? Thanks again 😊
I looked back at your previous posts to see if I could find blood results. Unfortunately, your GP only tests TSH and T4 which is inadequate to properly figure out a dose.
Over this past year, you’ve been on several doses of Levo. 100/125, 125 daily, 125/150, 150. You also said you trialed T3, but don’t say what dose it was and what dose of Levo you were on at the time. You’ve also had trouble keeping ferritin levels up and you stopped iron supplementation when ferritin was still below optimal.
I’ve been where you are. Trying so many things at once and never quite getting where I wanted to be. Maybe you can glean a few insights from my experiences and what I learnt along the way.
When I first trialed T3, it didn’t work for me because I was very under medicated on Levo. Another factor was the T3 had a filler ingredient that didn’t agree with me. It manifested itself in my not feeling well on it. I found out about my intolerance to the filler ingredient much later.
Raising Levo too fast can cause you to overshoot your optimal dose. You’ll feel “good” but it is short lived and symptoms return. The problem here is, many times symptoms can be the same if over medicated as they are when under medicated. I didn’t know this - I thought being over medicated I would feel “hyper”. Nope. I felt fatigued, would have difficulty sleeping, brain fog, etc.
Another thing I learned is that too much Levo can cause a raise in RT3, which isn’t good. I was able to start to fix that problem by slightly reducing Levo and adding in T3 (minus the nasty filler - I use a custom compounded transdermal cream). It’s a slow process. I’m due for another slight reduction in Levo (just started that today) and will do a slight increase in T3 in 3 weeks.
I know I said I would help you with a jumpstart but I don’t feel that’s the smart thing for me to do. If your GP won’t do the full thyroid panel (plus TPO antibodies) I think you should get one yourself via Medichecks. Those results will give you the knowledge to know what is your next best move.
Hello again and thanks for taking the time to check my history. I have had my free T3 level checked in the past 4.7 (ranges 4-7) you probably missed that post as I have quite a few posts on here I also tested positive for antibodies they were about 263 at the time. I was reduced to 75mcg T4 alongside 10mcg T3 (5mcg twice a day) but had to abandon the trial a few weeks in as felt worse than ever very tearful etc. Iron levels improved slightly with the Galfer syrup (tablets were too harsh for me). Also supplemented with Vit D as those levels were low too.
I have just ordered Dr Blanchard's book so am looking forward to reading up on his protocols.
I did see that but it was listed as T3 and not FT3. Your numbers looked pretty good when you posted those results EXCEPT that FT3 was barely above the low range. FT3 should be 60-75% thru range so for you, that would be 5.8 - 6.25.
Those numbers could have indicated that you are a poor converter so adding in some Liothyronine was a logical step. However, without knowing your RT3 value, there’s no way of knowing if a reduction in Levo was also appropriate.
I *think* when you trialed T3 (5mcg twice daily), it was too much for your system and you felt unwell. Dr Blanchard believed in very small quantities of T3. For example, I’m currently on the equivalent of 3.0mcg T3 with 125 mcg T4. My latest bloods show my RT3 is still too high but my FT3 number is improving. I’m also feeling better. So, my func med doc is having me reduce my Levo to 125 mcg 5 days and 100 mcg 2 days to bring down my RT3. This is a reduction of 7.14 mcg a day - a very small amount. In 2-3 weeks I will increase my T3 to the equivalent of 3.5mcg daily. After 3 weeks I will test bloods again and see where things are at.
We are all different but the important thing to keep in mind is to make small changes, one thing at a time, and allow ample time to see/feel those changes so that you don’t overshoot your goal.
At the same time, optimize your vitamin levels and get full thyroid blood tests. You have hashis so things are even more complicated for you and making small changes is imperative.
Another thing to consider, since you have Hashis is LDN, (low dose naltrexone) which has been useful in reducing inflammation as well as antibodies. I don’t have Hashis but I do have autoimmune so my func med doc put me on LDN. I do believe it helps to keep things at bay.
Thanks milkwoman appreciate all your replies you've given me some useful pointers. Once I've given Dr Blanchard's book a good read I'll start to test some of these ideas 😊
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