Is it dangerous to just stop taking Levo?

So I've decided I'm ringing the Natural Clinic on Monday I can't wait until July and if it means taking a day off sick from work to go that's what I'll have to do! Just wondering if anyone knows if I can just stop taking Levo?

When I saw the GP on Tuesday he asked if I was having palpitations which I said no more than usual as this was true but for the last couple of days I've been having them constantly on and off and I've also found my joints in my hands are so sore not to mention I'm having really bad headaches and just feel like my head is in a fog I feel so spaced out. I think it's the Levo so I'm considering just stopping it.

I know the leaflet says you shouldn't but I think I'm feeling worse for taking it than I was off it.

Just wondered if anyone has acutally done this ?

22 Replies

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  • What ever you do, please do not just stop it!!! I really don't want to frighten you, but my Mum stopped taking her Thyroxine for 6 weeks (as instructed by her GP as her levels where too high) and we found her in bed one morning having a seizure, she ended up on a Ventilator for 6 weeks and almost didn't make it. So be very careful what you do.

  • Thanks Mags I only take 25mg which isn't even the lowest recommended dose. Sorry I should have said that in my original post. I've only been on it just over a month and only got it because I told my GP I'd self treat. Basically my TSH is high 3's and I have Free T4 at the bottom of the normal range and a FT3 that could do with a bit of a boost. I just got fed up with the "your levels are normal" routine and wanted to try it but I have to say I really don't think it's for me. Initially I felt a bit better but it was short lived and now I feel terrible.

  • I know the "levels are normal" saying all too well unfortunately. My Mum is suffering really bad just now with symptoms such as no energy, painful joints, brain fog, memory loss, amongs other things & her consultant told her if she's feeling more tired, to go back to her GP! What hope does she have?

    There are many more people on here who can advise you way better than me, it's such a huge minefield, but I wouldn't want anyone going through what we did as a family when my Mum's medication was stopped. Don't give up Hope, just keep pestering your GP, that's what I'm doing, I wish you well.

  • Hi munchlet you need to give levo more time, this is normal to feel bit better at first then go back to feeling not so good it's because your not on optimal levels yet. You need to have a dose increase then 6 weeks later have bloodtest to see where t4/t3 and tsh are and so on until you are optimally medicated.these things take time as everything with the thyroid takes time to work. Optimal levels are when t4/t3 are in top third to top quarter of range and tsh is 1.0 or below at this level most of us feel well though to get your gp to do this is hard work, you need to fight for everything as most gp's think anywhere in range is fine. 25 mcg is a very small dose to start you on this is normally starting dose for elderly or if you have heart problems.

  • Hello Munchlet,

    I started to take Levothyroxine, but after about 2 weeks I was feeling worse than I felt previously as I had none of the main symptoms associated with Hypothyroidism! On Levothyroxine I had morning headaches, palpitations, hot flushes, diarrhea, feeling anxious & feeling scared of something but didn't know what! I came off it & told my doctor I won't take it ever again. Why should I take something that makes me feel worse than I was feeling previously? I now take thyroid supplements & feel great again. But the thing is that everyone is so different & one 'size' won't fit all. :-)

  • Munchlet and Raywaites, taking Levo is not a quick fix, it can take 12- 18 months to hit on the right dose with many ups and downs along the way. Of course both of you must make your own decisions as to whether you carry on or give up but making that decision after only a few weeks is a tad to quick.

  • I just wasn't prepared to suffer any longer, Levothyroxine isn't suitable for everyone & I reckon my body told me that pronto!

  • Hi I am very sorry that supplement do you take and how you will now thanks a lot

  • Since dumping the Levo I'm feeling as great as I was before taking it & beginning to wonder if I was really underactive initially? Still taking a daily supplement though called 'Thyroid Support Formula' just in case! No way could I carry on with Levo, the side effects were too severe! The headaches & dizzy spells are not good when one has to drive like I do every day! Got another blood test in 2 weeks so we'll see! :-)

  • You are hypo, you know, with a TSH over 3. Not drastically hypo, but how do you know it won't get worse?

    So, what exactly is your plan? Are you thinking of just stopping it and that's it? Or do you plan to start taking something else? It's not dangerous to just stop 25 mcg. And, you might even feel a bit better, at first. But, as I said, you don't know that it isn't going to get worse. We none of us know that. But, eventually, you are going to need something else. I think that's pretty certain.

    If you think the Natural Clinic is going to help you treat your thyroid in another way, then yes, just stop the levo and go and see them. But, do you know their approach? I don't know the Natural Clinic, I am always dubious of things that call themselves 'natural' - especially when it comes to thyroid. If their approach is that all you need to do is stuff yourself with iodine to cure any kind of thyroid problem, then it's more like the Dangerous Clinic! Been there, done that and am extra wary, now.

  • Hi Greygoose from what I've read they treat with NDT so yes my plan is to stop Levo and go see them and hopefully start NDT. My other option is to take a bit more Levo and see if that helps but in a way I'm scared as I feel like the small dose I am taking is causing enough side effects but then again they can all be symptoms of underactive thyroid so it could be that I need more Levo. It's such a balancing act. I've read quite a lot about the clinic and it appears they are all qualified GP's who practice integrated medicine, so hopefully they will be ok, I saw they were recommended by someone on TPAUK and that's how I found them.

  • It could very well be that you need more levo. You should have been started on 50 mcg, not 25. So, if you can't get an appointment immediately, why not try increasing your levo, rather than stopping it, and see how it goes? :)

  • What brand are you on , this sounds very like the reaction I have just had to Teva - minus the palps

  • Mercury Pharm I just feel weird and the palps are quite scary.

  • I get palpitations when i am under medicated. Each time you increase dosage your thyroid relaxes a bit (which is the goal) so you don't actually feel better until you hit the right dosage where the medication can take over and your thyroid no longer needs to struggle. I had a horrible time on levo alone (had to add T3 eventually) since I wasn't converting well, so no matter how much levo they added I kept getting palps and feeling uneasy. Eventually they tested my FT3 and FT4 and saw I wasn't converting, put me on T3 and they were able to increase my levo and T3 and finally palpitations and jitteriness ended.

  • Thanks Dang that's exactly the word jitteriness!! I couldn't describe it when I was trying to tell my husband. I was saying it felt like I was trembling but different! Yes I'm going to try a bit more as I've only just started having the palpitations and my aches and pains are returning to I think I've just got used to the small amount I'm taking and might need a bit more.

  • Good luck with it! If you become more jittery you should get FT3 and FT4 tested to see if you're not converting, for me it was high FT4 that caused me to be jittery, but low FT3 that caused the heart palpitations. Since I wasn't converting I was in this weird in between where It felt like I was hypo and hyper at the same time.

  • I have been messing about with my levothroyine since Christmas. Going from 150mg to 125mg and then 100mg. I have been taking it since 1995 and the palpatations were the reason I started to do this. Then I became undertreated and slowly began to feel much worse especially the last few months.Have had 2 blood tests since Christmas and am booked in to have another one in June. I have tried to gauge how I feel rather than rely on just the blood tests. But going down to 100mg has made me feel really ill. So now I am nearly 4 weeks into taking 125mg and slowly I am feeling a bit better.

    What I am discovering since joining this site only 2 weeks ago many of us do have similar symptoms which I find very comforting, as you do begin to think it is all in the mind. I also have excessive startle response(diagnosed 9 years ago) which makes me very anxious and extremely jumpy at times. I am wondering if anyone else suffers with this. I am also trying to work out if there is a link between the startle response and the dosage of levo. I agree with so many of the comments here about the GPs. My surgery is excellent but I think the GPs I see do not really know what to do with thyroid sufferers as our symptoms are so varied. They rely on the blood tests alone. After 22 years on the same drug I am beginning to wonder if I need to try other things (like so many of you are doing). I am not coeliac but have many of the symptoms, fatigue, dreadful bloating,feeling sick etc.,

    A fantastic site. I do not really know why I did not join before. Thank you to you all.

  • Right don't do anything yet. It is dangerous to stop but you may have problems. You mavbe one who takes a while to get used to the meds so can try it more slowly by half or even a quarter a day but slowly increase but the more common reason is the fillers. All tablets have fillers in then to make them more stable and to bilk them up as with that small amount you would struggle to see it. Each type has several fillers in them and so it can be difficult to find wihich is the problem. But it is easy to check if that is what is upsetting you.

    Take an anti histamine tablet an hour before your thyroid meds and see how you feel then. If that improves then have a word with the pharmacist about trying another brand. That might not work the first time as it night still include the filler at fault but if you find one that works ask pharmacy to mark it on your card. They may prefer the doctor to mark it on your script so that you always get that one. They may offer you TEVA but I would suggest not at the moment as lots have been complaining about it so not the one to be trialling!

    If that is ruled out try taking less till your body accepts it and if not it could be the other extreme that you aren't talking enough so suggest to GP you raise up to 50 or may be 25/50 alternate days. When we take Levo the body can get lazy and shut down it's own mechanism so you could be getting less in your meds than you were naturally producing before instead of adding your meds to what your body was producing so you could have been really low on meds

    Start with the most common and easiest to do first though-testing the fillers, good luck!

  • Thanks silverfox7 that's really helpful, I've just checked and my latest batch of Levo is a different manufacturer so not sure if that will add to or help with my problems. This morning my joints are so stiff I think the initial effect of having the Levo has completely worn off! I definitely think I need more but by the same token I need to work out if I'm reacting to something in the meds as you said.

  • That's something else I've found out over the years. Always stick to the same brand. When I was first diagnosed almost 30 years ago now I was given 3 x 38 at a time but offer the next 3 packets were a different brand and I felt different on them so I was upset on the fist box then juggled a bit on the second and fine on the third but then it was all change again on the next script. Then I read on an American site, the only info that was around then., that the manufacturers worked to a +/- of 10% so looking at a 100 mcg tablet it could actually, depending on the brand vary between 90 and 110 mcg do that if one batch was a place that worked to 110 and the next only 90 then 20 mcg difference was huge when you consider you increase or decrease by 25 in the norm. I asked the pharmacist if that applied in the U.K. and she thought it would do so from then onwards I always had MP. In 2009 the 10% dropped to 5 % so more accurate but never the less enough to make you feel different. Then fairly recently on hearing how the NHS was struggling I decided to do my bit to help. It didn't save a fortune but as the saying goes every little helps. Over the years all my meds had been multiples of 25 so I could easily vary the dose but I found that 100 mcg were much cheaper than the 25's so I decided to order some on each. Disaster!!! It soon became obvious that even within the same brand that 4x 25 was a different potency than 1x 100! So looks better and cheaper to have all 100's and use a pill cutter to break then down if need be.

    As Bantam and GG have said above, it's takes a while to get to know what is right for you and on may not have given it enough time. You need to listen to your body and learn what it is trying to tell you but because of the testing intervals it can take a long time to get yourself in the right place and it's not just on Levo, NDT is just the same, a lot of trial and error! Everything to do with the thyroid works slowly, that's how it is and trying to cut corners doesn't work in the long term. Patience is the word but well worth it! Your body takes a time to get used to the changes and we are probably very different on that and some just seem to sail through so we should be pleased for them and accept it may not be the same for us. If you go along with this natural clinic then I really hope it works for you but I wouldn't stop your Levo before you go unless they tell you to.

    Starting NDT your body has to get used to the T3 element and again we can all do that at different rates so are told to start with one grain and hold that forca few weeks till slowly increasing. The idea being that you take the new T3 slowly but your body also has a store of T4 when you stop your Levo so you are using that up whilst your new NDT dose is increasing g so you are not aware so much of the change over but having done that there may well be a period of time getting the correct dose for you. It is easier I think to learn and e peridnce Levo before considering NDT so it still may not be an instant fix for you. You still have to get the conversion right if that's a problem and you may not have been on Levo long enough to know that it is.

    I'm not trying to sound negative but just saying there can be pitfalls with anything until you have got it right. I hope what ever you decide it goes well for you.

  • Thanks Silverfox I am thinking I might just slowly up my dose and see how I feel for a while, initally I felt good on Levo and my puffy ankles have disappeared so I think it is doing something I just think I probably need a bit more. So I'll take a bit more and see how I feel, at least that way I'll know if it's the fillers or underactive symptoms. I think maybe I'm expecting too much too soon. I'm reading Dr Peatfield's book and looking at all the things that signify an underactive thyroid it's becoming clear that my thyroid has probably been struggling for years and it's not going to revert to normal in a few weeks!

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