last night i thought i was dying!!!!

i felt so dreadful, i didnt know what to do with myself, i have been diagnosed hypothyroid in april, on 50 mg levothyroxine(actavis) since then and i have been having the shakes , tremors heart palpitations, it felt like i had poison in my blood, i felt ghastly,my legs went all mauve and mottely, i was sweating every 15 minutes, lots, i nearly took myself to hospital, it was about 5 am but i managed to sit the night out . I called the doctor earlier that day and as i had felt pretty awful all day and had gone to the lavatory to pee every 20 mins. I ache and my walking has not improved and my tinnitus hasn't improved, its become worse.

She said oh dear seems we've sent you hyper instead of hypo! but ive got a blood test Friday am which i hope will give some answers, as i went on a mad (assist ones thyroid) food hunt with my brother in his car as i haven't been out all week ive felt soo bad.

can levo do that ? or is there anything else the gp can do? I've never been so frightened in all my life.

Has any one else had this awful experience, ? I really dont want a repeat performance, as i am so frightened of taking the 50 mg i leave it as long as possible,,and Im finding that my painkillers, aren't working as well as i am only allowed two a day ,,at first they were great, now they only work for two hours not half the day and i hate taking them as they are strong(Napraxon).

I was also previously trying to explain to a friend that its not the change and hrt wont help!!!

can any one shed some light on this as im getting desperate and ive felt horrible and unable to work since may7th,this year.



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25 Replies

  • Am so sorry to hear that you have had such a bad reaction. Poor you.

    Can you possible put your blood test results up with the ranges ( they are the ones in the brackets).

    It sounds like there could be several reasons why you have reacted like this:-

    1. It could be that if you have been poorly for a while your adrenals have been affected. You might want to consider having a saliva test to check this

    2. It could be that you are intolerant of the fillers in levothyroxine and need a pure form

    3. If you iron levels , ferritin are low you won't be able to use the levothyroxine and it has back stacked in your system causing palpitations etc... Ask your doc to check your ferritin and iron levels.

    4. You don't say if your GP did blood tests for thyroid anti-bodies (TPO & TPA) -if this is the problem it could be that your antibody levels have dropped and your thyroid is now producing more thyroid hormones...hence becoming toxic.

    I would discuss all of the above with your Gp and ask her to carry out further tests. Then let us all know how you got on.

  • Thankyou waveylines

    I certainly have felt toxic for the past couple of weeks ,not well at all , in fact down hill more and more, and im next to useless at the moment but i was absolutely terrified!!!

    Mauve legs and everything,,,

    i will ask the nurse who takes the blood to get the doctor to check for all these things if poss but i must admit getting the right blood tests is a bit hit and miss there, as two out of four blood tests i had previously were sent for the wrong thing,

    Is there a pure form of that horrible drug.. Im beginning to hate it already as im so frightened of how its going to make me feel,,

    I will get back to you lovely people as this seems to be the only place im getting any answers and any sense..

    Incidently eating lots of shellfish if one isnt allergic to it really helps.


    for your concern and answers

    Kind regards


  • Astro,

    I'm sorry you felt so bad and were so frightened. Palpitations and tremors can be terrifying. Your GP's comment wasn't very reassuring and although your symptoms sound hyper they can also be experienced when you are undermedicated.

    Remember not to take Levothyroxine until after your blood draw tomorrow. Your results should be available Monday for the GP to review. Do you have an appointment to discuss them with her?

  • Dear Clutter

    thankyou so much for your reply, i was truly terrified..I have never in my life had anything quite as unpleasant as this feels. The thought of going to hospital and them taking out my gland terrifies me to along with the going to hospital thing. I have THE MOST difficulty sleeping at all with this ,im often up all night as i just cant go to sleep,and i managed to quell the symptoms a bit having shellfish and and trying to give my system a selium overload. was sweating and going to the loo so much and my heart was doing all sorts,,, no one warned me . I was so desperate to somehow stop all this going on !! is this normal with this horrible condition. and the mauve legs!!!!

    i will remember not to take that horrible tablet till after my test, and will make an appointment about four days later to make sure the results are in , but this is wearing me out.....!!!

    thankyou for your empathy x



    ps im not looking forward to this as the GP s there are not the best at disclosing what the test means or why all these horrible symptoms are happening so much , its sooo wearing.

    thankyou so much

  • Astro,

    GPs can't possibly understand all the different symptoms, which also vary in different people, unless they or their close family are hypothyroid. They know the theory, or some of it, but experiencing the symptoms is a lot different to theorising about it. That's why thyroid support fora are so helpful.

    You've done well to continue taking Levothyroxine when I know you've thought the medication has made your symptoms worse. Not long now until you know what your levels are and what happens next to make you feel better.

  • Thankyou clutter

    for your understanding and empathy

    had blood test this am and didn't take the levo till after,,,

    i dread taking it as i don't know how bad its going to make me feel hours later.

    However we shall see ,, booked an appointment for Tuesday when results should be in

    and a very nice lady on this forum advised me what to discuss with the GP,, im seeing one of the males in the practice as the new women whom i normally prefer are so useless..

    This forum has been wonderful , everyone really has been like earth angels to me and i really don't think i could have got by without it.


    Kind regards


  • Dear clutter,,

    i am trying to copy and paste my blood test results but it wont do it,,, in april my tsh levels were through the roof 15.26.

    in may now after 50 ml levo they are back down to 3.11

    they also tested my bloods for my kidneys and no all blood tests are seemingly normal,!!

    I asked the doc to test for low cortisol which he said he would but he said its as rare as hens teeth!!!i also asked him to test my anti bodies,, he said he would and he said well you have a referral for an endo.... but at the moment we cant really tell anything as its only been six weeks,,

    he said he wouldnt test for haemoglobin as thats high cos i smoke,,(yes naughty) but im only doing it at the moment as i didnt want to put on any more weight,,, and im cutting down again to stop by end july as i managed it jan- march,,just the two stone heavier my poor little body cant do it ,, smoking is the only thing that keep s my weight under ten stone,,,I told the doc that i felt the worst ive ever felt and felt like i was dying as my heart was going far too fast and i have shortness of breath and felt like my blood was poisoned..

    He said it sounds like im just menopausal....!!!!!

    i told him ive been through that ,


    he also said im blaming everything on the pills,, but irealy dont want to have to take as much levo as this its making me feel horrible? any ideas???/

    kind regards


  • If your TSH is 3.11 you are undermedicated Astro. GP should increase your Levothyroxine until your TSH is just above or just below 1. You are absolutely not going to feel any better while you are undermedicated. Your GP should increase your dose to 75mcg. If you are taking Actavis ask for Mercury Pharma instead, or vice versa.

    If increased dose doesn't work after a few weeks it is acknowledged that some people do feel unwell on Levothyroxine alone and can do better with a little Liothyronine (T3) added. You could discuss this with your GP but they are usually reluctant to prescribe T3 and your only alternative may be to buy it on the internet.

  • Thankyou Clutter

    My GP said nothing about being under medicated but seemed happy to keep me at 3.11, he said it was too soon to tell as i had just been on levo for about 6 weeks, since 24th april, but he also said as i think i mentioned that low cortisol is as rare as hens teeth,!!!!!! He also said ,, oh well youre in line to see a ' gland doctor;.(endocronologist)so we will see!!!

    Ive heard it mentioned alot and particularly if people are stressed,,

    I feel rubbish most days and ever muscle in my lower body hurts,, i have to take a painkiller to move which is ridiculous and they are so strong im only allowed two a day. Somedays they dont work at all,, today it took me one hour to get up my local newsagent that is only 5 mins up the rd, and i have to go back to work in july , Its so painfull to walk without a stick its unreal and i cant have a stick at work.

    My GP said he will test for low cortisol , and anti bodies, and the menaupause!!! but how your bloods can tell that i dont know , but he seems to atribute all my symptoms to the menopause,, as he says its quite common for someone my age to have thyroid trouble and menopause,! However i will mention that he has very little regard for women in general,!

    He seems to think im just some wimpering menopausal hypochondriac, but ive never been to the doctor so much in all my life,, even with breast cancer i only went when i had to. I have this other blood test on friday and then i will have to have another appointment on the tues,,

    I will mention about undermediaction , i dont usually take my meds till about 11 ish as im afraid of all the symptoms happening all throughout the day, as they do if i take it at night ,, if i take it at 11 ish i can get through a bit of the day but then i totally collapse as i feel dreadfull and am getting frightened about going back to work in this unfit state,,

    I hope you are feeling a little better.and are enjoying yourself,, youre very knowlegeable i must say and im very grateful for all your input and eveyone else . i also feel that the initial cause was stress ,, but hes saying its my age and the menopause!!!!??????



  • I forgot to refer you to the question dated June 8, 2001 a low dose of of levo: on the same link as below.

  • Dear shaws

    I am on 50 mg still and my endo appointment has been put back till end of july,

    I have been feeling really bad lately and i spent the last week breaking out in a sweat every hour or so badland having so little energy i could hardly move...#

    would this be down to too little meds as i find i am having symptoms of both hypo and hyper,,,one doctor said iwas prob on too higher dose and its sent me hyper,,,!!!

    help still feeling terrible !!

    Regards astro

  • Dear Clutter

    sorry to be such a pin but you seem to understand blood tests,

    I tried to copy and paste but this site wont have it , and it wont let one do attachments either..

    however i will copy out my blood test from april and then june i really dont understand why i am sweating so much now, and feeling very very tired and very shakey..i have also had a test for low cortisol, and menopausal symptoms and the receptionsit said they have all come back normal no,,action,,, i dont understand why i am feeling so bad and i am totally unable to sleep at night due to these waves of tiredness where i just collapse and go to sleep for about 20 mins,,#

    any way here goes

    april blood test ,,serum TSH -15.26 0.35-5.00

    SERUM FREE T4 9.00 9.00-22.00








    SERUM T4 14.3 NORMAL

    I feel better if i dont take the levo until the afternoon,,, but i dread taking it ,, it makes me feel so rough .. dr said im blaming it all on the tablets,,

    i still feel really ill and i dont know how they can find out whats making me feel so rough if all my bloods come back normal ?

    sorry to bother you again,,

    regards astro.

  • Astro, your TSH is still too high and your FT4 a little low for you to feel well. I think you are still undermedicated. Your TSH should be just above/below 1.0 and your FT4 in the tope 75% of range.

    It's rare to have an allergic reaction to thyroid hormone but the fillers can make one feel unwell. If you are taking Actavis ask your pharmacist to give you Mercury Pharma or vice versa when you get your next scrip. For now, try taking an antihistamine like Clarityn or Piriton an hour before you take your Levothyroxine and see whether it is more tolerable.

    You are sweating, shaking and unable to sleep because you are undermedicated.

    Ask for a printout of your cortisol and menopause blood results and post them on a new question for comment.

    Have you asked for ferritin, vitamin D, B12 and folate to be tested? Deficiency or low in range can present similarly to hypothyroid symptoms and vitaminD deficiency causes joint and bone pain.

  • This is some advice from Dr Lowe - re adverse reaction etc

    If you go to the date September 6, 2001 to read Dr Lowe's explanation if having a reaction to the medication:

    and also the date April 22, 2007

  • thankyou shaws

    i read all that with great interest.

    I also noted that there was a survey done either on here or thyroid uk and 50% of folk who are on levo

    say its not working properly.

    I will mention that to the GP ,but since i have asked to see a specialist they tend to make comments like well you have been referred to a specialist you can sort that out with them!

    Trouble is they don't realise how much one is suffering in the mean time.

    Thankyou sooo much

    Kind regards


  • Dear Shaws

    As mentioned in my reply to Clutter

    my Gp just thinks im menopausal and my thryroid just happened to go as a consequence of this because of my age,,

    I had a disagreement with the GP i am under at the surgery so asked to see any other GP , as i find any tiny amount of stress makes me very giddy and sick with heart palpitations, and i feel like im going to die,,

    i know this seems dramatic, but the GP i had the disagreement with suggested i had heart problems any way,, Ive never had them in my life,until i was put on levothyroxine,.

    I need to get back to work before my salary goes down to half and i lose my job as my Gp is not listening to me and my health is deteriorating rapidly. It took me an hour to walk a 5 minute journey today .!!! My job involves walking at least miles a day , but im going to have to ask to do an office based job as i can no longer walk very far at all. I was quite fit a couple of months ago and all of a sudden put on two stone and my body just buckled under the stress of the bad way they were treating me at work, and all my familys ill health!!!

    Now im not getting any better, but my GP thinks im a menopausal hypochondriac,, but he at least will test me for low cortisol and anti bodies and the menopause!!!

    test on Friday consultation again prob the following tues,, i will copy the part you showed me and take it to him.




  • It was hell for me on levothyroxine. The first time I ever had horrendous palps and you just don't know what's going on. As soon as some T3 was added it made such a difference that I knew I had to have an alternative to levo. I am now on T3 alone and also did fine on NDT. I am sure it's the fillers/binders which don't agree with some of us. I felt far more unwell than before I was diagnosed with a TSH of 100.

  • Dear Astroscope

    Sorry to hear you have felt so bad, it must have been horrible and scary and you feel totally out of control, I haven't worked since Feb as I had a similar a strange reaction, it felt like an alien suddenly swelling up in my throat and some very strange hyper symptoms, sometimes it's been so bad I haven't been able to go out. I thought it was the thyroxine so I came off it for a few weeks only for another attack to start, as the bloods are within range the Endo doesn't think it's thyroid related, I was just waiting for him to say it was in my head but he agreed some people do complain of this.

    It's a roller coaster with thyroid problems, I don't even bother telling anyone how I feel anymore as it's difficult for them to understand, my husband said the problem is you look so well they don't believe you, but he does understand and that's the main thing...

    Keep strong and stand firm with your GP, take someone with you and a list of questions


  • Dear Runnergirl

    THANKYOU for your reply, sorry to hear that you have been off work so long but i can totally understand.

    The last time i was off work for three months was when i had breast cancer 5 years ago.

    I am usually really hard working ,and have to be very ill to have time off,, but this was like tumbling down

    a hill, first my leg wouldn't work it just felt like a lead weight and hurt lots, then my kidneys started playing up the next day , then i started shaking and sweating and feeling giddy and all the rest of the thyroid things kicked in,,, whilst on 50 mg levothyroxine,,, and my gp had said oh give it six weeks you will feel like a new woman,,,

    well thats true ,,i dont like the one i feel like,, the old me was healthy and could work long hours and be normal and help everybody.

    This is like ive been run over by a bus and everything hurts and doesn't want to work properly and i cant sleep and i cant think ive been having hypo symptoms and hyper and im in a complete mess..

    I understand this thing about people dont think there's anything wrong with you as they cant see it ,,but inside im feeling like someone's tipped some electric poison and is shoving me in a sauna,!

    I know everyone feels different with this but I realy wish the GP s would listen instead of thinking we all wander out of the text book all carved out the same.

    Thankyou for your advice,

    Kind regards


  • Perhaps it's hypoglycemia. The symptoms are similar to what you describe - absolutely horrible. Peeing a lot goes with it because when there's not enough glucose available, your body burns fat quickly, producing "ketone bodies" that have a strong diuretic effect. I know this seems counterintuitive, but try avoiding carbohydrates for a few days; eat meat, fish, eggs, poultry and perhaps small amounts of hard cheese and two 1-cup portions of "water vegetables" such as peppers, cucumbers, leafy greens, etc. (no carrots or onions) with vinegar & oil dressing (no bought dressings containing sugar or starch). If it's hypoglycemia, you'll still pee a lot (because with no carbs you'll still burn fat), but you'll feel much better within three days. After this "induction" I find that up to 60 grams of carbs daily are tolerable, and some people can handle more.

  • Dear wombatty

    Thank you for your reply

    Im a pescatrian, i eat fish and vegetables i gave up meat after working on a farm when i was a mere teenager.However I find this hypo hyper thyroid ism so confusing and difficult, especially with food. I find there are foods that i used to love that i can no longer eat and they make my condition soo much worse ,its mental!! I have to read all the packets.I found over the last three days that eating nothing but shell fish, and fresh veg, hardly any starch , made me feel alot better,, I had to give up bread as that made matters loads worse, and porridge, and some vegetables like aall the goitrogens as guess what ,,bingo feel like rubbish again, but keeping to fresh foods and shellfish and vegetables like artichokes and asparagus and beans ,eggs and things all proteins made me at least get through the night. Still cant sleep and find the nights the hardest, as mostly peeing through the night , but i think thats something to do with the fact that the thyroid and the kidneys are like snipers in the dark together..!!

    I have small amounts of cheese,, i love that too!! but i cant eat lots as i have a hernia and ive put on two stone not eating much a t all all of the sudden and that was a huge shock!! i cant lose the weight whatever i seem to do and i cant exercise as my bursitis on my hip not good and not getting any better.

    I am desperately trying to get well as i have a month to recover and back to work,,my brother and i have been looking after each other as hes just had major surgery and will be off work for months.. I just wish everyone on this forum is getting better slowly, and one day the Gps will listen to us.


    Kind regards


  • You sweet dear ! Yes, there are things that can help. I was diagnosed as hypo , then another medical doctor said I had no thyroid problem . So who do you believe ? I refused to take any of the synthetic drugs that the medical community pushes on women. My body was going through menopause and the last thing needed were the awful drugs that only add to the symptoms I already had...( anxiety and panic attacks, racy-internal feeling 24/7, frustration over worrying about my symptoms, not being able to sleep , loss of 25 lbs., not wanting to leave my house cause I felt so bad, and more ...). I got to an acupuncturist and Chinese med. Dr. ( that was wonderful at relieving my stress/anxiety) . Then I found a naturopathic clinic that did ALL the needed thyroid blood spot tests ( not just TSH, T3 and T4) , and saliva test for adrenal and hormonal balance.I feel tons better than I had felt. Do I still have symptoms....yes. I have gained all the lost weight back, and then some. I also have a new symptom, heat/humidity intolerance. The old symptoms have virtually gone away though !

    The problem with traditional medical doctors is that they only treat symptoms, and this is done poorly.They are not taught in med school to treat the body as a whole unit ( as it were intended), but only treat parts and symptoms ,never the root cause. They over medicate women (and men) who are having hormonal problems, as saying it's always the thyroid ( they never address that it could be the adrenal gland etc.). They also want to put everyone on depression meds, as was done to me. After taking one of there wonder drugs , and having terrible heart palpitations and feeling like I was going to die, I threw the drugs in the garbage. Get to a reputable naturopathic as soon as you can, and start to educate yourself. Listen to your body and take control, DON'T just blindly follow everything 'they' tell you to do (or take). They aren't God....and they aren't always correct in their diagnoses . I'm not intending to put all doctors down, I just don't like their school of thought, and this comes from personal experiance.

  • Thankyou Miss CC

    My opinions of the medical profession since i went hypo thyroid have tumbled down hill like a stone gathering moss lately.

    One GPsays one thing and another says something else, and they all think we should react the same as the text book says we should.

    I have explained to all theGPs that even if you cut paper dolls out of a newspaper the text is different on all and people are as different especially when it comes to drugs and reactions to them.

    I blame genes and blood types but im no doctor,,

    however i do feel better if i dont take the silly drug till later in the day, but it just starts doing its worse later in the morning then. I should have listened to my body before this happened. But i didnt think anything was the matter.. i just limped a bit and it wasnt getting better i just thought i had a virus,,

    and bang the thyroid goes all haywire on me,, and things went wrong on a daily basis since 7 may...

    I am trying to find natural ways of dealing with this and trying to give my body foods that support the thyroid,, but as for the hormones its not making and things,, all a bit confusing. I am waiting to see an endocrinologist , but its all a waiting game,, and in the mean time im trying to learn all I can,, i too believe thaat doctors aren't gods ..only human like the rest of us,, but they have access to the things that can help is they listen to us and dont think they know it all.


    kind regards


  • I hope you read my last reply to your issues. I have had this for the past 3 months. I'm having a flare up of my Hashimoto's and having horrible hyper symptoms and Thyroid swelling. This may be what is happening to you. It appears that your dose of t4 is too low to relieve hypothyroid symptoms, but just enough to suppress your TSH, which will make you more ill. When you become more ill, you are more likely to have a flare up and hyper symptoms. T4 alone rarely works for most people. 50 is a very low dose. It appears that your doctor is medicating you based on TSH. If this is the case, you need to find another doctor or order your tests yourself. free t3, free t4, reverse t3 are the tests that you need, including ferritin and iron tests. Read all you can about Hashimoto's. Hyper symptoms are common. I don't know why doctors don't recognise this or inform us, but they don't. I have come to the conclussion, that most people are pretty much on their own with this. Please read the links from Shaws!!!

  • Dear Faith63

    I agree, i felt really alone when i was diagnosed, the only one i knew with any previous problem's was one of my bosses who has had her thyroid removed, but at least she understands. I called my personnel office and they dont understand why i have been off work so long,,they just think it sounds like a bad cold. However one GP admitted to possibly giving the wrong dose and sending me hyper, and its thrown my whole system into melt down. The GPS

    do seem to think that if they balance the TSH levels all will be ok ,, but my kidneys are suffering big time and my purple legs ,, that was a shock!!!

    I do take iron tablets and b12 selium and vit d and have been eating more shellfish which really improved matters, but i cant afford this all the time as its expensive and as i have been off sick for so long, i wont be able to work in the same department when i go back as i can hardly walk now.

    I have read lots about Hashimoto's . I am still getting to grips with how important the thyroid is to health as its something i knew little about until now,.

    I have read the links from shaws,, but i must admit the other night felt soo scary that i really had to concentrate on some puzzle i hate just to get me through the night and to try and focus on something else as i was feeling so rough and so frightened.. However I am sorry to hear of anyone on this site going through a bad time as i can really empathise , its horrible, and knowing that one can have a heart attack if they dont get it right or kidney failure or something life threatening as they(GPs) arent listening is scarier,.

    Thankyou for your reply



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