Oh my word i am still on my roller coaster ride. I was on Levothyroxine for 6 years and spent all that time really ill. My GP took me off it earlier this year to see how my thyroid would hold up. My thyroid has just failed again and they put me back on levothyroxine. I have only taken it for a week and feel very unwell again. I have taken advice from here and am waiting for my private tests to arrive which will check antibodies and T3. However i have just been back this morning and seen the nurse practitioner as i have had a return of symptoms like i used to have. She has told me to stop taking the levothyroxine and get the private tests done then go back and see the GP. She thinks my body can not tolerate it and says there will be an alternative but it will cost more money. If this proves to be the case how the hell did my regular visits to the GP in 6 years not alert them to the fact i can not tolerate it. No wonder i feel rubbish and confused. Anyone else had similar x
Question as to if i can not tolerate Levothyroxine - Thyroid UK
Question as to if i can not tolerate Levothyroxine
Hi, sorry I can't give advice but do you mind me asking how they have now decided you can't tolerate Levo? Is it because you feel ill or were there blood results that suggested this? I'm asking because I haven't felt better since taking it (often worse and new symptoms and irritated skin and sudden hairloss too)) but my results now suggest all is well. Sorry to make this about me. I really hope that after 6 years you get what you need - how do you feel about this? I would be angry and maybe a bit defeated.
Hi there, don't worry if i can help anyone with my story then that is great. I am not sure how i feel yet to be honest as i spent six years chasing hospital appointments complaining about symptoms and never getting a resolve. I of course need this confirming by a doctor next week and am going to run the bloods through horizon. I have been told over the last six years i have Fibromyalgia, Lupus, connective tissue disease, mixed connective tissue disease and tested for MS. I had a lot of shooting nerve pain, numbness in various parts of the body, shortness of breath, palpitations, irregular periods, blurred vision, eye pain sometimes feeling like i was having a stroke to name but a few When i first started taking levo six years ago all my joints swelled and i was in so much pain i could not walk or lift a pan whilst cooking. I thought i was dying and was given hydroxycholoquine. These problems never subsided that much really and i lived like that for six years. Of course coming off it and then going back on has started all these symptoms off again. I would suggest you read the side effect leaflet in the levo and see if you can relate to any of those too. Don't give up on trying to resolve your issues. Good luck xx
You are grossly under-medicated. I said that to you two days ago. Your TSH if four, and your FT4 is right at the bottom of the range. How can you possibly know if levo doesn't suit you when you're not event taking enough. I would say that nurse doesn't know what she's talking about. And, you don't need private labs - no point in doing them anyway, if you stop taking levo just before doing them - because you already know that you are under-medicated and that your nutrients are suboptimal.
Get an increase in dose and take all the right supplements, bring your TSH down to 1 or under, then do private testing and see how you feel. At this point, you would just be wasting your money.
With all due respect i have taken on board what you have told me and thanked you for the information you have given me, but i can only go with what my doctors are telling me to do. I am not that knowledgeable at the moment to tell my GP different and whilst i appreciate your input i will have to go with GP advise above yours at the moment as i do not know you other than on this forum. The administrator on this site told me to get private bloods so conflicting advice between you and them. I am taking on board what everyone tells me but it has to be my decision which way to play this. Like i said i thanked you for the advice and it could well be that you are right but you could also be wrong. It may be that i can not tolerate the levothyroxine. So thank you but according to you Endo, Gp and nurse do not know what they are talking about and if this is the case then god help me.
Yes, of course it could be that you don't tolerate levo, I'm not contradicting that, I'm just saying that it's too soon to be able to tell because you are under-medicated.
And, it's not just according to me that endo/GP/nurses don't know what they're talking about, I think most of us on here are agreed on that point. And, if you've been reading on here, you must surely have realised that.
And, of course it has to be your decision, but how can you make a decision if you don't have all the facts. It sounds like you've already made up your mind that levo doesn't suit you. I'm saying, how do you know? I'm not telling to do anything. I have no vested interest in this. You asked for advice. Perhaps you should have specified who you wanted advise from - is it just from admin? Because admin don't have any special knowledge that others don't. They don't have any special training in thyroid. And they are not appointed for their knowledge of thyroid. And yet, because an admin 'told you' to get blood tests done, you're going to do it?
She has told me to stop taking the levothyroxine and get the private tests done
This is why I said the nurse doesn't know what she's talking about - unless she actually said stop taking levo and wait six weeks and get private tests done. If you just stop for a couple of days before the tests, the results will be meaningless.
And, what's the point, anyway? You already know that you are under-medicated, and your nutrients are suboptimal. Saying that is not giving you advice, it is stating the obvious. What do you think the tests are going to tell you that you don't already know? That's what I don't understand. Blood tests can't tell you if you don't tolerate levo. They tell you a) your levels - therefore if your dose is too high or too low, b) how well you are absorbing from the gut, c) how well you are converting, and, possibly d) how well you absorb at a cellular level. But, they can't tell you how well you tolerate levo.
But, if you don't want my advice, that's fair enough. I try to help where I can, but I'm not going to force myself on anyone. I just find it so frustrating when the obvious is ignored. That's all. Good luck. 
The reason why the nurse told me to stop taking the levo was because in my medical records i had the same symptoms after starting the levo in 2013. I then went on to have what i can only describe as six years of hell after that and was told i had all sorts of conditions only to be then told i don't. The symptoms disapeared completley after stopping the medication this year and started again upon recently taking. I do understand you believe i am under medicated and i agree with you on that, (quite clearly as i am not taking any at all at the moment lol). In fact when you pointed that out i double checked with another GP in the family who agreed i should be on 100mg. The admin reference to T3 not been tested on the NHS prompted me to organise private bloods as i figured any information at this stage could prove helpful. Therefore i have taken bits of advice from everyone that fit me. It is difficult on txt and internet to gauge someones tone and sometimes it comes over a little abrupt. Most people who search for advice/ information on sites like this already feel pretty rubbish and they have to be very careful what advice they take. I have taken on board what you told me about supplements as no doubt you have spent time searching and checking that information yourself. I did thank you for your input and obviously i am in a pickle at the moment as hypo with no med's but i do not wish to go through the hell i went through again and really have to be very careful with any advice given at the moment. Thank You once again x
The admin reference to T3 not been tested on the NHS prompted me to organise private bloods as i figured any information at this stage could prove helpful.
Well, no, not really. Your FT3 could either be very low because your FT4 is low; or it could be higher than the FT4 because of the high TSH driving conversion. But, either way, it wouldn't tell you anything other than the fact that you're under-medicated. You see what I mean? The FT3 result doesn't always add extra information.
What dose were you taking during the six years you were taking it? Did you ever get your TSH down to 1?
To be honest over those years i started on 25mg right upto 150mg and was on 75mg when they took me off the med's. I honestly do not know if i got the TSH to 1. I have got a thyroid 6 test that covers all including antibodies? I have not done it yet as i am not sure how long to leave it as i have now stopped the med's? I took 75mg for 3 nights then 50mg for 4 nights and one night off currently? I have an appointment booked in with GP just over a weeks time and was hoping to show them the test results then. Thanks
I'm sorry, I just can't see the point, because I don't understand what you think the results are going to prove. As I said before, you already know you're under-medicated on 50 mcg levo, and you know that your nutrients are sub-optimal. If you haven't had your antibodies tested before, then they might show that you have Hashi's, but none of that has any bearing on your tolerance of levo. It just all seems like a waste of time and money, to me.
As I see it, you either stick with the levo until you get your TSH down to 1, then test to see how well you convert - but it would be best to optimise your nutrients before that. Or, you abandon the levo now, and get yourself either T3 or NDT.
I just don't know what you're trying to prove with the testing, so I can't advise on when to do it.
Greygoose has given you good advice.
Have you tried asking your Doctor for a different brand of Levothyroxine? You could be allergic to the brand 's fillers because some people are. You could try NDT which you can order from abroad. I have taken Thyroid S and it suited me ... I know you don't want to go against your doctor but sometimes we have to take charge of our own health. I had to ... just read my profile ... Doctors never helped me and I spent years lying in bed feeling depressed and suicidal. Please help yourself don't end up like I did. I am well now for the moment but I know this disease will always be a part of my life.
Hi, thank you for your reply. This happened with the brand teva and avtis so it is quite possible i just cant tolerate the med's. It's not that i do not want to go against the doctor i just need to feel more confident as to knowledge about the thyroid and med's etc. Believe me i know they get it wrong a lot but right at this moment i am still trying to lean as much as i can. I have been told that many conflicting things it is difficult to know whats what xxx
I was also going to suggest you try another brand. Medication has fillers in it to bulk it up and also keep it stable so it’s not unusual to find the mixture of fillers don’t agree with you so you may be best asking the pharmacy if you can try a different brand though you may have to try more than one. If that turns out to have caused some problems then ask your doctor to put that on your prescription and then you should always be given the right one in future. I would always check though that the pharmacy cy have given you the preferred brand but you must look dtraight away-after you have left the pharmacy they won’t exchange it.
This forum is run by Thyroid uk and it’s recomnended by NHS Choices but I u derstand your nervousness and wanting to keep on the right side of your doctor but many of us are now aware that doctors are often not as aware of treatment as many of us are but of course we can only give you suggestions and wouldn’t insist so most suggestions are valid ones but it’s then down to you to suggest them to your doctor and I’m sure if anyone every gave you the wrong advise then someone, possibly more than one would point that out.
Treating a thyroid issue can be frustrating and drawn out. Everything seems to work so slowly and sadly we can’t speed it up or try to cut corners so that can be very frustrating as well. We are started where you are now and we have possibly all made mistakes as well but there is a lot to learn. I found two things very helpful when I started out. This forum is run by Thyroid uk and they have a wonder web site so my first adice would be to look at that. They have lots of info you can easily print off to show your doctor if need be, lots of help and things to do and probably more importantly things not to do! Takes time to get your head around it but Thyroid Uk are recommended by NHS Choices under the HealthUnlocked banner so the support is sound on their site. But we are all different so sometimes we need to tweak things depending on how we react.
The other way I used to learn was to read the questions and then the answers. After a while I didn’t look at the answers but managed to work out something similar so I then just looked at the questions and thought of the answer then saw that I had got it right or was nearly there and then you realise that you are beginning to understand your body more and what you need to do to help it.
So read as much as you can, shout out if you don’t understand and hopefully you will start to understand more about what you need to be well again. Many are here to help you on your journey but remember patience is often needed and we may have to try a few things to improve so welcome to the forum!
Hi Maplewood, Greygoose's advice if good. Unfortunately it is the case that doctors, Endos and nurses do know next to nothing 
I haven't had a chance to go back and look at all your old results, but its very possible you were on completely the wrong dose for 6 years and that's why you had a terrible experience. Its an extremely common story, and the vast majority of people coming to the forum who have felt rubbish on Levo have been on the wrong dose for a long time, sometimes decades.
Best practice with Levo is to start on 50mcg, then stick with that dose and retest after 6 weeks, then adjust by 25mcg. Carry on like this until symptoms are resolved or freeT4 is high in range. It can easily take 6 months of diligent adjusting to feel well, and many people feel worse before they feel better.
Its also very possible you can't tolerate Levo, some people can't, but it's much more rare. The majority of people can get well on Levo alone.
My advice if you want to get private bloods is to stick with one dose for 6 weeks, either nothing at all or your current dose whichever you prefer. Then after the 6 weeks take the test. If you don't wait the full 6 weeks your blood test might not be accurate.
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