Help confused! Is it all in my mind?

Hi all im new here :-)

Basically iv was diagnosed with an underactive thyroid 7 years ago, never thought much about it to be honest, was told take this tablet and have regular bloods done.

Its only been from october last year 2016 that i started having out of the blue restlessness uneasiness/anxiety, felt full of energy couldnt sit down for 5 minutes, was running off like 4 hours sleep as couldnt sleep properly, couldnt understand it at all as had no trigger for this no deaths no trauma was happy i am 32 and never suffered with anxiety.

It was then i had a look at the leaflet that came with my levothyroxine and on the box it said new formula! And also the symptoms i was having was on the leaflet saying this means your dose is too high... anyway went to docs who didnt even check my bloods just palmed me off with anxiety meds and i just got worse where i had a anxiety attack xmas eve!!

Anyay in january had bloods checked and surprise surprise dose was too high but both tsh and tr was both high? Doc was confused so lowered dose to 75mcg from 100mcg.. and was told i needed bloods doing in 6 weeks.. anyway was still having anxiety restlessnes insomnia was in such a bad place so after 4 weeks of 75 decided to stop taking them alltogether to see if symptoms went and surprise surprise everything disappeared i felt fantastic happiest and healthiest iv ever been! Told doctor all this and she did bloods and said my tsh had now gone over 100 and i must start on at least 50mcg and that she is referring me to the endocrinologist because of the bloods and the symptoms as shes confused.. anyway took a 50mcg only yesterday and a few hours later started having racing heart,chest pains, shaking incontrollably, breathless, sweating anyway called doctor she said call 999 so an ambulance came and took me in long story short didnt find anything wrong, now im so scared to take anymore it was such a scary experience so havent took any since yesterday previous being 2 weeks without them like i said doctor said i know the risks its my decision weather to take them until i see endocrinologist which shes trying to get asap.. i just dont know what to think or do im scared, im feeling really healthy no energy drop no symptoms what so ever..

Does anyone know if they will put me on something else preferably something more natural? Will they find something else wrong? will i be ok staying of them for probably another 4 weeks?

Please help someone!

Thank you

62 Replies

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  • If you can get your blood tests results and the ranges people on here can give you good suggestions. You are entitled to get a copy of your blood test results I believe.

  • Hi thanks for replying! My blood levels are as follows

    Taken 31/8/16 :-

    T4 - 21.8pmol/L range [11- 23]

    TSH - 10.5 miu/L range [0.27- 4.5]

    Taken 9/1/17:-

    T4 - 24. 4 pmol/L range [11-23]

    Tsh - 8.1 miu/L range [0.27 -4.5]

    Taken 24/2/17:-

    T4 - 8.1 pmol/L range [11-23]

    Tsh - 140 miu/L range [0.27- 4.5]

    Hope these help u all to help me thank so so much for all your replys

  • Test results will help us make better educated guesses as to what is going on. But my feeling is that if you are feeling OK you are highly unlikely to fall into a hypothyroid coma, so its fine not to take your tablets till you see the endo. If you start feeling very fatigued, then start taking them.

    The chances of the endo giving you something 'more natural' are miniscule. But natural is not necessarily good. What you want first is something that is effective.

  • When i got diagnosed at 25 i left it a long long time before i actually went to the docs, so i know the signs but really the only sign that stuck out was falling asleep at around 6 o clock at night.. could i ask what u are taking and are u under active aswell?

  • My thyroid doesn't work at all any more. I'm on NDT because I don't convert T4 to T3 terribly well.

    In your case I do wonder whether you are underactive. That is not defined by your TSH, its defined by you FT3 levels.

  • Hi what do u mean not underactive? Do u think i have been miss diagnosed and that im actually over active with having seen my blood results?

    I have actually said to my doctor that i have spoken with a specialist (but i havent of course) and they have said my t3 needs testing, she has agreed to do a blood test tomorrow to check the t3.. what things will this indicate? Thank you so much for helping

  • If your T3 is normal, which I suspect, then you are not overactive. You would just have a very high TSH. The cause of that would need investigating, of course.

    It's all speculation till they measure T3. I'm amazed they haven't bothered till now, because your TSH and T4 have been inconsistent for a while. They just looked at each in isolation without thinking about the relationship. Doctors have such a poor understanding of statistics!

  • But has the tsh gone so high on the last test because iv been off them for 3 weeks well it was 2 weeks then 3 weeks now? ..

  • Hi again... i have managed to get a t3 blood test today, doctor is not happy about this and has said if i want anymore bloods taken i will have to pay!! Told her about teva having their license withdrawn she said shes not aware of that and im going too far!!.. anyway because she wants me taking the levo while i see the specialist she has given me another prescription today and told me to go around the chemist and try the other brand available which is actavis, so i managed to get the actavis brand of levo from a nearby chemist... now what i need to now is how people have gone on with the actavis?. And becauee i have been off it for 3 weeks should i just start by cutting it in half so that im just on 25mcg instead of 50mcg straight away? Will i have any side effects of taking them after not having any for 3 weeks?.. what do u all think? 🤔

  • Well, I can't go telling you to ignore your doctor's advice, so I won't.

    But I have to say I think she is playing with fire. You are the lady who reports that she feels ill taking levo, yes? You might or might not react to the Actavis, but why is she suggesting you take medication when you feel well without? TSH is not a killer in itself - only in the action it has on the thyroid gland. And if your high TSH was having the usual effect on your thyroid gland you'd be jigging around unable to sleep and crazy nervous.

    Your high TSH is not producing symptoms of hyperthyroidism, but the levo does, and she wants you to take it anyway?

    Promise me that if you feel worse you'll stop taking the Actavis?

  • Hi thanks for the quick reply.. see im so confused.. i dont know of i was just on such a high dose in the first place that caused all the symtoms anxiety and such or if it was the new formula, but even when i was taking it the last bloods before last came back both t4 and tsh high, then the last bloods i had done where the t4 had dropped and the tsh gone high was probably because i had been off them for 2 weeks?.. i have started feeling anxious jittery nervous pins and needles loss of appetite and cant sleep properly is that because of the high tsh? Or is it because i havent got peace of mind yet? .. and if i take the actavis levo will the tsh lower and symptoms subside? And also could it have been the new formula that just didnt agree with me that set my bloods wappy and caused the symptoms too? And i thought when u have an underactive thyroid that your tsh goes high and u start feeling sleepy/ constipated body slows down? Just so confused...

  • Answering the last question first, yes, you should be fatigued, cold, constipated if you are underactive. And that is not happening in your case.

    TSH is thyroid stimulating hormone. It is used as an indicator of how much more thyroid hormone the body would like. In normal patients T4 at the top of the range, while TSH is significantly elevated does not occur. But TSH doesn't affect you directly and cause the jittery/anxious symptoms. Those are caused by either elevated T3 or high cortisol from the adrenal gland.

    So yes, you are right to feel confused. Until they do all the tests, and probably scan both your thyroid and pituitary, there won't be an answer. If you are already jittery, and not fatigued I cannot understand why your doctor would want to risk making it worse.

  • Iv decided im not gonna take the levo until my t3 results come back... just hate feeling all jittery and anxious legs like jelly, like i said dont know if this is lack of peace of mind or something else?..

  • I would do the same in your position. You don't feel cold, fatigued and sluggish, if you did then it would be a good idea to take the levo.

    Its true that your TSH has gone sky high. But we can't feel TSH. Your T4 has gone low too, but you don't seem to be feeling it. So although I don't have the foggiest idea what is going on with you, I can't see there is any point in risking you becoming even more jittery than you are already. And by the way, in my experience normal worry about things comes in waves - the fact that you are jittery all the time suggests that something is going on. My best guess would be that your adrenals are playing up, but that is for the endo to check. Adrenals are part of his/her remit too.

    When my NDT was withdrawn my adrenals went into overdrive trying to make up for the lack of T3 in my system. I was jittery and couldn't sleep, while being exhausted at the same time and gaining weight rapidly. Its just possible that this is happening to you. But the endo should be able to test for that. I wasn't tested at the time, it was a year or two later that someone suggested the adrenals were the root cause of my sleeplessness and sugar abuse.

    And your results at the beginning of the year were odd. With T4 over range your TSH should be much lower, and not also over range. Its not long now till you see the endo, and as long as you don't start on hypo symptoms it shouldn't make that much difference. If you start having palpitations, or really slump then I would go to A&E but its fairly unlikely given how slowly thyroid things normally happen.

    In the end I'd say do whatever worries you the least. If I were the endo (God forbid!) I would probably ask you to try taking the levo again, but starting very small, just to see what happens and get some inkling of what is going on. But its one thing doing these things under medical supervision, another to do it on your own when it won't be necessary in a couple of weeks.

  • Yes im just not sure what to do at the minute, i was also questioning whether the new formula of levo from teva could have maybe made my bloods go unsteady? What do u think?.. so thats why the doc suggested i get the actavist brand that i have been on before at my old place 4 years ago.. was gonna start taking half of one which would be 25mcg and see, but gonna see what the t3 comes back as first which will be mon or tues next week...

  • I'm not a Levo user so haven't paid any attention to the Teva story. Best to talk to people who know.

  • Hi just to let u know, im now thinking its not my adrenals as the anxiety/nervousness is coming in waves like u said, and its mainly when im over thinking everything thats going off, e.g am i going to die or seriously damage myself if i dont take levo up until i see endo which will be probably y weeks all in all?.. will i have a reaction again and end up in a&e again? Why did my bloods go hay wire in the first place? Will the endo even do anything?

    Should get the t3 results tomorrow so hopefully will have more clearer understanding after putting results on here..

  • I don't agree with your logic, whether or not the adrenals are off (after all anxiety always comes from the adrenals) anxiety will always come in waves.

    But you are in no state to cope with any extra anxiety that might be caused by the medication.

  • This is very true, i really dont need anymore anxiety at the minute, i just need peace of mind then i know ill be ok..

    I have heard that theres a chance a build up of t4 is possible? Possibly because its not converting to t3? And thats the reason i had the a&e episode when taking just one 50mcg last monday?...

  • Unlikely.

    A build up of T4 is more usually converted to RT3, which slows you down. T4 itself is pretty well inactive, but there are people who can feel it regardless.

    Its more likely other things in the tablets, or the fact that you are now hyper-anxious and can wind yourself up over anything. Sorry, that sounds unkind, and implies that you have some sort of control over the whole thing, which is clearly not the case.

    I would really, really like to see a 24hour saliva cortisol test in your case. But the NHS doesn't recognise the validity of them.

    I'm currently rushing out of the door, but here's some things for you to do.

    Take the Adrenal Quiz at at adrenalquiz.com -its not definitive because there are so many other things that can look like adrenal 'fatigue'.

    Meditate. You can get a few weeks free from headspace.com. Their beginners course is really good. Do it at least twice a day. It will feel like its not affecting you at all to start with. And my mind still wanders after years of doing it, but it does help.

    Consider taking Ashwagandha, especially at night.

  • How do i put a picture on of my t3 and antibidy results for u all to see?

  • Hi again when your free could u please have a look at my t3 and antibody results iv posted a picture of them on a new post.. as im getting told different things..

  • Omg this is the same thing thats currently happening to me and ive just written an almost identical post to you!! So i cant help but im under an endo and she too doesnt know whats going on?? Hoping we can get some answers from someone more knowledgeable. Im off eltroxin 2 wks but unlike you feel dreadful...anxiety gone but im so fatigued with severe migraines...

  • Ah im so sorry your going through the same, and im sorry your having fatigue and migrains, i was feeling so good for the 2 weeks off them then obviously took one yesterday to end up in A&E none the wiser i told them all at A&E my story i was adament it was the tablet! They werent having none of it hoping the specialist helps me, what has your doc said about not taking your thyroxine?

  • I got blds done after 13 days off levo and endo rang me next day saying id to go straight back on 50mcgs. Im still v v unwell and feel like im not converting t4 to t3 anymore or absorbing or sth. I too get so stressed out like you wondering am i going to die or be left in this living hell. I will update you as soon as i get any answers or anymore tests done. Good luck

  • Which manufacturer makes your eltroxin?

  • Hi im on levothyroxine medication, manufacturer is teva.. also it has said new formula! on the box since last october since iv been have these side effects?..

  • kez1984 I had terrible trouble with TEVA before the new formulation. I can only say that different formulations of Levo do perform very differently for me. TEVA had their license for 100mcg Levo withdrawn in 2012/13 and it sounds like it's been reformulated and re-released but it could still perform differently for different people. Levothyroxine is a difficult drug to manufacture and all sorts of things effect it like the storage of the bulk material, the manufacturing methods, the fillers used and a myriad of other factors such as heat and moisture because it's not a stable drug. There is no guarantee that just because it's been given a license for use that it will perform the same way for everyone. Just one factor worth checking out with your GP.

  • Thanks for the info! What would u suggest instead then? What are u taking?.. What do u think of my blood results? Any opinions.. thanks for replying

  • There are four recipes of levothyroxine tablet in the UK:

    Eltroxin/Mercury Pharma levothyroxine

    Actavis/Almus

    Wockhardt

    Teva (only New Formulation is available)

    Ask your pharmacy to give you one of the other makes.

  • Thanks thats great will look into which one, when iv seen the endocrinologist which will be in about 4 week, been off levo 2 weeks already since the side effects and the episode i had monday ending up in A&E!! Not having any hypo symtoms as of yet though quite the opposite in fact!... do u know which type has been long standing and good reviews? Thanks x

  • I think that is the wrong way to look at it. We have people here who are fine on one, but not on another. Every one of them is hated by some and regarded as the best by others.

    Only Teva has changed in the recent past.

    Wockhardt is only available in 25 microgram tablets so that can be a problem.

  • How do i put a picture on of my t3 and antibody results for u all to see?

  • You prepare the picture (whether a scan or a photograph). Make sure you cut or obscure personally identifying information like name, NHS number, address and GP's name.

    Then you write a new post. As you do that, you will see a button [ Add Photo ] - click on that and browse to your image. Then post!

    Or you transcribe the results and post them.

  • Thank you i figured it out!

    What do u think of my results?

  • Hi your bloodtest results are a bit confusing,t4 high when on levo but tsh high as well, my guess your not converting t4 to t3 properly and tsh is telling body you need more t3 .have you had your t3 checked? If you haven't ask gp if they will do thou often NHS labs won't do test even when gp asks for it,you could always get private bloodtest done , medichecks or blue horizon are both good places to have home kits from, you would need at least t4,T3 and tsh done at same time, would at least then stand a chance of knowing what's going on with thyroid.it could be you are allergic to the filler's in the levo tablets, are these the same make of levo you always taken? These are just a few ideas of what could be the problem, hope this helps you

  • Well, given your results, it seems to me that you're probably a bad converter. Your TSH has got to be high for a reason, and that reason obviously isn't the FT4 being low. Therefore, your FT3 is probably low because you are not converting that T4 you're taking, to T3.

    However, as they rarely - if ever - test the FT3, they would have no idea what's going on. They also have this weird idea that everyone is a perfect converter, which couldn't be further from the truth! You need your FT4 and your FT3 tested at the same time, to see how well you are converting.

    As for feeling better now that you've stopped the levo... This is a well-known phenomena. Just about everyone that stops their levo for a while, for whatever reason, reports feeling so much better! In the short time. And nobody knows why! Unfortunately, that well-being doesn't last. Eventually, the hypo symptoms will come flooding back, and probably bring a few friends with them. You cannot live without thyroid hormone.

    Will the endo give you 'something else'? That is very, very doubtful. The majority of endos are convince that the only way is Levo! But, then, the majority of endos know nothing about thyroid. By 'something more natural', I presume you mean something like Armour or Erfa. It's very hard to get that prescribed, and, it's not as 'natural' as all that, either. The pills still have to have fillers, which are what causes problems for most people that have problems with pills. You could ask for T3, but, as you haven't had your FT3 tested, you'll find it hard to make a good case for it. They are very reluctant to prescribe it, because they don't really know what it is. So, we come back to that all-important FT3 test, which really has to be your next step, I fear.

  • Thank you for your really informative advice sounds like u know your stuff.. i looked into this myself i also thought the same that my t4 wasnt converting to t3 properly, i will be asking my doctor for the t3 blood test and see what she says, she has also done an antibody test too dont know if this helps anyone.. also i though being allergic to the fillers i would get swollen tongue face etc?.. iv been told the levothyroxine are and have been for many years made by teva but i question the new formula that is in bold on packet? Doctor said shes looked into this it cant be anything added or it would show in bold and its just the tablets bigger? I question shes looked into it.. im just so frustrated and annoyed i really want to take them i really do but when u go through whatni went through its scary it felt like my body went into some kond of shock it was herrendous.. i really hope they either give me t3 or something else..

  • Antibodies are very important. Your doctor won't know what to do about them, but if they are positive, there are things you can do yourself to reduce them.

    a) Try a 100% gluten-free diet. This often reduces antibodies, and makes a lot of people feel a whole lot better.

    b) Take selenium. This can reduce antibodies, and can also help with conversion.

    Also, if you have antibodies, you need your TSH suppressed. But you might have difficulty persuading your doctor on that one! However, the less gland activity there is, the less antibody activity there will be. So, really worth a try. And, the best way to suppress your TSH is to take T3, so you have an argument, there. And, you're going to need all the arguments you can get.

  • Hi i managed to get a t3 blood test taken yesterday, what should it come back as if it is normal?.. also since having the episode monday when i was took in A&E im getting bad anxiety nervousness loss of appetite, is this just all the worry and no peace of mind? Thinking i may have to take some anxiety pills as have 2 children to look after....

  • There's no such thing as normal. There is a range, and it depends where it falls in the range. Your case is unusual, as you don't feel ill with the usual hypo symptoms, so one would expect it to fall quite high in the range. But, in your case, what is more important is comparing the FT4 with the FT3, to see how well you are converting. If you are converting well, the FT3 will be right up the top of the range, or over the top. But, there's no point in trying to second guess the result. When will you get the results?

  • I should get the results of the t3 and antibodys mon or tue next week, so just hanging on in there.. will the doctor know anything about the t3 results do u think?..

  • Nothing at all, I don't suppose. Just post them on here - with the ranges, of course. :)

  • I will do for definite as people on here seem to have more of a clue than my doctor who is confused by it all..

  • Yes, most doctors are confused by it all. But then, they don't have it.

  • Hi when your free could u have a look at my t3 and antibody results pictures iv posted on a new post as im getting told different things by different people thanks so much..

  • Well, I've had a look at both posts, but I can't see where you're being told different things. You are very hypo, and you have Hashi's. There's not much more that can be said at the moment.

    Your original question was, why were your TSH and FT4 both high at the same time. And, I suggested it was because you were a bad converter. However, now that you've been off levo for... what? 3 weeks? It's impossible to tell how well you convert, because you have nothing to convert. We'll have to wait and see when you've build your FT4 level up a bit. But, I still think that's a possibility.

    You were wondering why you were feeling anxious, and thought it was because you were over medicated. But, anxiety is also a symptom of being under-medicated. And, if you weren't converting well, even though your FT4 was high, your FT3 would have been low, meaning that you were, in effect, under-medicated. But, as you didn't have your FT3 tested at the same time, it's impossible to tell, now.

    The other possibility, as others have said, is that it was the fillers in the tablets that didn't agree with you. And, you've had plenty of advice on how to handle that. But, the most important thing is that you get back on thyroid hormone replacement of some kind, as soon as possible. :)

  • Hi thank you for your response.. i have now started taking the actavis levo been on the 50mcg for 2 days now, no side effects or anything yet.. i truly believe i was over medicated though over xmas as i was so anxious and bouncing off the walls and it did calm down when she reduced from 100mcg to 75mcg and completely stopped when i stopped taking them?...

  • Hmmm... Well, we'll never know.

  • Yeah suppose we can only presume until i see the endo and thats only if they even investigate everything properly!.. either way i have got a lot of fighting talk and knowledge since joining this site! Thanks to u all on here! 😀

  • How do i put a picture on of my t3 and antibody results for u all to see?

  • Best to start a new thread where you will see the bit about adding a pic 😊

  • Hi i hope you dont mind me piggybacking on this post. Ive been Hashis Hypo for 14+ yrs on Levo doing ok...but last yr i went thru early menopause and my thyroid went crazy which is only been looked at now. My blds are similar with high TSH and high Ft4. Endo did my FT3 a few mths ago when i queried conversion issues and she said No my FT3 is ok. Ive had blds done again last wk as im so unwell and Endo now focusing on it having contacted specislists in Oxford. I live in Ireland. My question is what should i expect my FT3 to be. My guess is if its in 'normal range' i will be told same. Can it be in normal range but still not be converting properly??

    TIA,

    Louise

  • It can indeed. And I don't think your doctor really understands the issue. You need to see the actual number, not just her opinion.

    If you are converting well, your FT3 will be higher than the FT4 in their respective ranges. So, if your FT4 is right up the top of the range, and the FT3 about mid-range (which doctors think is perfect!), then you won't be converting very well. Which will mean that you need your FT4 to be way over-range to get your FT3 up to the top of the range, which is not good. Conversion is not just about being 'in-range', It's about where the Frees are in the ranges, compared to each other. And so many people don't get that.

  • Thank you so much GreyGoose!! Ive never had an issue on Levo before so never educated myself but by god i need to now. Unfortunately my TSH is hypo with a FT4 in upper range and sometimes over so i will need to see my results from last weeks tests and discuss with my endo. Im grateful i now have the knowledge to discuss FT3 with her thanks to you.

  • You're welcome. :)

  • Any change in tablets could have an impact on your health. The way levothyroxine is made means that various chemicals are involved as solvents that 'carry' the Levothryoxine into the excipients or fillers. I think I read that when an investigation was made into why people were feeling ill in New Zealand after a change in production, one of the factors was a change in the percentage of solvents used. Solvents are not listed as ingredients because they evaporate and therefore are not present in the final product but they may affect the way the final product works and how it dissolves for the patient. One suggestion would be to change to a different product and see if it makes a difference while you wait to see an Endocrinologist. Teva had big problems before. Their manufacturing license was withdrawn in 2013 (You could check the date). Perhaps you could ask your pharmacist which Levothyroxines have been around for a long time and are tried and tested and have not changed their formulation for the last few years?

  • Same thing happened to me- I literally felt like my medication was going to kill me! I stopped taking it immediately and felt like myself again. But, unlike you, I have mainained a tsh under 7 which I believe has to do with dietary changes. I have been gluten free for over a year and eat organic- made a huge difference. I would definitely work with your doctor as to how to handle that high tsh though- maybe a different brand of the levo.

  • Hi how long was u on meds for and which one? Was u severly under active when u was first diagnose? X

  • Hi, was wondering how under active was u at the beginning what signs did u have before u found out u had an under active thyroid.. as i always presumed u could only ever not have treatment if u was borderline? I would love to have my levels normal by being healthy and eating right, not sure thats gonna happen with a tsh as high as mine though?...

  • Do any of u suggest a different type of levo and whether i will be able to get it prescribed on the nhs?... also do any of u others that have not already said think maybe i need t3 from the look of my blood results? I have managed to get a t3 blood test for tomorrow! X

  • Hi. Some of your symptoms are like mine. Are you taking tevo thyroxin. New formulation is on the last prescription I had 3 weeks ago. And I am itching from head to foot can't sleep leg cramps and depressed. So as I was taking thyroxin from wockhardt company and had no problem. I have only had s

    These problems since using Teva tablets. Today I am back on the original thyroxin. And guess what I am not stripping my skin with itches and legs are less cramped. I have only taken the teva one for 3 weeks and am struggling to get the others but I am not taking teva. Apparently they were took off the market in 2012 now back on with new formula. Well thay can keep them they must be cheaper as all the chemists are using them. Hope this helps

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