Please can someone tell me , if one of the nasty side effects of this drug, (although many lucky ones dont get it) for the ones that do its intolerable.
Is there anywhere that us sufferers can write and tell them how unbearable it is so they can work out some magic ingredient to stop this, or take the things in it that make people shake out.?
I have lowered my dosage and feel like i have flu , i am frightened to take any more as the shakes got worse. They are intolerable now. I got told i couldn't alter my meds , ie take a form of it without fillers till after my blood test. Im not seeing my endo till dec,, so cant do anything till then!!!
any advice welcome.
Regards
Astro
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The difference is subtle, but trembling is a symptom of too much thyroid hormone and shivering (feeling cold inside) is a symptom of not enough thyroid hormone.
If you are on Levothyroxine, remember that it can take several weeks for any change in dose to take effect.
You need to get your FT3 and FT4 levels checked if you really want to know your actual thyroid hormone levels.
i was feeling very achy and wasnt well on 50 mg ,, so i upped it to 75mg,, i felt slightly better, but then the shakes kicked in big time so i had to lower it,
I still have the shakes badly now ive lowered it to 50 again , but i ache lots so i dont know what to do ,, do i shake or ache?
Internal shaking is also a classic symptom of adrenal problems. It certainly was for me. There's a good adrenal questionnaire here adrenalfatigue.org/take-the...
All of which means they think (or know) something is going on with your adrenals. The only proper test is the saliva test and the NHS won't do it. They also won't treat you. You need to get the test done and then, if it shows something, to find a doctor who will help you.
It's not "rare as hens teeth". Ask them how many patients they have "diagnosed" with ME/CFS and ask them how many of them have had their adrenal function tested using the saliva test. It's common, not rare.
my endo (pompous man) said there is nothing wrong with them , after i had the 24 hr pee test, i may ask him when i see him in december ,what i can do about this shaking inside, since i cant seem to get a nearer appointment , I hope that the gp can suggest something, as i cant go on like this ,, it makes me feel very tired and exhausted and it hampers my walking considerably as it makes my hip that much more painful.
However he seemed to think i was optimally dosed on 50 mg levo , but i hope it is the fillers in the levo as i want to ask for a liquid version that im told is filler free,
Thankyou for your concern and help,,i just want the day to come where i feel normal.
my gp wont do that!!!i dont know where to go to have that tested, I can see you're getting a bit fed up with my shaky postings , but i in turn am getting fed up with the lack of help im getting from my gps,, I have been told oh you need another blood test before we can alter your meds, as my last one was in june, which was months ago.
One of the gps i see says things like low cortisol is as rare as hens teeth,,, but he has admitted i am auto immune , and tells me that all hypothyroid cases go auto immune, thats usual!!!
Wonderful!, why dont they stop it before it gets that far? Ive also been told that shaking is a side effect of levothyroxine, but the only things ive been given are beta blockers and anti depressants , which they seem to think they can give me them with out a blood test!!! meanwhile im feeling like hell on earth, and the gps seem to think that s it ,,im cured as my blood tsh level was normal last time!!!! its not your fault dear lady ,,,,, ive been told all sort of rubbish , that its anxiety, im hypochondriac,,,
I do acknowledge that your posts are meant for the best possible reason , but I have to wait to see my endo in December now, and meanwhile the shaking is driving me nuts , its 24/7 and it keeps me awake, i feel sick and im exhausted as my body is shaking internally ,,,all the time..last night i was trying to cook and i burned my left palm as i was shaking so much,!!
Dear Lady , i wish i could get this seen to as im fed up not feeling normal and this shaky feeling is one of the worst things ive experienced along with the whole hypothyroid thing,
You are not exasperating me. I'm just trying to get the information because if you are anemic, for example, then adding thyroid hormone on top of that will make you sick.
Can you move up your appointment with the endo? Would you be able call them and ask for a 'last minute cancellation visit'? I.e. if someone cancels, can you fit yourself in at short notice? And then ask this person to do the rest of the blood tests that need doing? Even if your GP is an idiot.
Let's say, we do an experiment here, if you stopped taking everything thyroid, would the shaking stop? If you stop taking it, and you report on a day to day basis, can you do that? I'm not concerned about feeling like crap, but I am concerned about the shaking. One day at a time, okay? What dose are you on? Let's figure this out.
Because I'm wondering if there's some excess adrenaline being produced by your adrenals. Which can be a problem. What is your blood pressure and heart rate? This can be entirely independent of the thyroid. There may be more things going on here.
I was sup to see the endo earlier , but they cancelled that appointment and made it DEC. If i don't take any levo, i feel like ive been in a car crash. I lowered it back to 50 mg from 75 as the shaking was intolerable, Its slightly better on 50 but still ghastly,,my son says he cant sit in the sofa with me as i vibrate too much, and my poor fella has to move his feet as hes just had a hip operation and he says he can feel the vibrations in his feet when i sit in the end if his bed, it feels like im a washing machine on 1000 spin speed, or when you pull one of those colour wheels with elastic and the colour wheel whizzes, that's what it feels like inside me! all the darned time. when i walk when i sit when i try and sleep, I had a 24 hr pee test and the endo said nothing wrong there ! he stuck me on clonodine for the sweats. said i was menaupausal , my gp gave me ranitidine, for the pills so they dont upset my stomach, im on loratadine to help with the fillers in the levothyroxine, im on diclofenic to stop the pain in my hip , and thats about it. I also take multi vits, vit c bit b , calcium, eve primrose oil, and fish and krill oil.
all natural oils for my poor 52 yr old bones!!! lol
my gp wont do cortisol tests as says as rare as hens teeth. I took myself off the 25 extra levo as i hate the shakes and thought it may help, but i shake from my legs to my head internally,, not so much my arms, but i did burn myself yesterday while cooking as i was shaking so much,, im shaking now all through my legs and my back!!
my endo is very pompous,he tells everyone how good he is at his job.
i sleep for about two hrs , thats it,,i didnt vibrate before taking levo, ever ,, i felt fine in march this year until my thyroid went,,then it started to die,,
ive never really taken many tablets and then my thyroid started to die and im on about 7 in the am and about 5 at night !!!! ghastly!!!
I wasnt at all well when i only took 50 mg levo , the loratadine helped calm some of the after effects, just not the shaking .
again gabkad, thankyou for your concern,,
youre cat looks lovely
i love tortoiseshells.
my sons dog is too big to be around cats , but i used to have at least 20 cats in the past, and the whole area that i used to live in took the kittens . they all went to good homes .
i cant take hrt i had breast cancer. i take loratadine as it helps as my body doesn't like levothyroxine at all,
and i take diclofenic for the pain.eveything else seems to bung me up !!!Im the worlds worst patient as my body doesnt like conforming,,neither does my brain much!!! lol
ps,, not much in to taking pills and not into drugs either,, stopped drinking two yrs ago too, only used to have some wine or whisky to get me to sleep and when that didnt work ,, stopped !!! i dont think one can drink with levothyroxine anyway. at least my head is telling my body ,,no dont even think of it!!!
i can see the tremors when i swim., that embarrassing( i go swimming to try and help my hip,,its not anything vigorous at all,and in exhausted after)so i dont do it as much as i should.
its also all day lone and mostly in my legs and torso, occasionally it goes to my head and thats really annoying. Its mostly in my left keg and left side which is odd as its my right side with the hip bursitis,, but either way its not good,,,
im just fes up of not getting the right treatment and all the wrong answers,, hope this finds you well xxx
Replacement hormones that are biochemocally the same as the ones you should be making - estriol, estradiol, progesterone, testosterone. The ones in the HRT pills that most doctors give out (and which are implicated in various illnesses) are not the same as the ones you make. If they were, they couldn't be patented. I don't know what they make the fke progesterone out of (it's actually progestin - not progesterone), but the fake estrogen is often made of horse pee.
Generally, you need to go to a private doctor. If you do a web search for bio identical hormones or bioHRT you'll find several, but most of them are in the south-east or London. If you just need a small amount of progesterone, it's easy to buy creams online. There are a few bioidentical products that the NHS do, but they don't do individual doses - just one size fits all - I think they do vagifem estriol pessaries in some areas and this article mentions a few products near the end.
Sorry that I can't particularly help but my experience might help you figure out what the cause may or may not be. I started getting internal tremors BEFORE I started Levothyroxine. They would happen when I got out of the car after a long days work (teaching 6 year olds - so needed lots of energy and patience) and was waiting for the lift to my apartment and the usual time I got them was when I would lye down in bed to go to sleep. I would also sometimes get heart palpitations which would stop if I lay on my side instead of my back. About the time I started Levothyroxine the shakes stopped. But I also started taking a B - Complex (this is supposed to be good for your adrenals and nerves) and Vit D3. I was also very lucky to be able to give up full time work when I started Levothyroxine and so that might have helped too. Hope this helps with your investigation on the cause of your shakes/tremors.
Astro - you could supplement your Adrenals without waiting for the GP to say yay or nay, or finding someone to do the right blood test for you (or, indeed, finding the money to pay for same!). There is a selection on Amazon - some for people who are vegetarians, some from animals extracts. Also Vit B12 and Vit D3 may well help. None of this can harm you.
One presumes you will need to fill more prescriptions between now and December. It might be worth talking to your pharmacist about the fillers in your Levo and these shakes. And whether s/he can fill your scrip with another brand, known to be less toxic in that way.
Levo and its T4 take quite a while to leave your system. So you may have adjusted enough to stop the shakes - but it will take quite a long time to work through, and the shakes to stop.
This is awful for you. And so frightening. One would imagine that the carelessness and callousness of your medical professionals is beyond belief - but the people I've seen about my hypothyroidism are just the same. You will need to become your own expert - as you are doing. When you finally see this elusive Endo in December I wouldn't be at all surprised if you find you know more than s/he does.
I have been off work for 6 months (well it will be that at the end of oct) I am a vegetarian ,i d take b 12 and b complex vitamins and vit c and calcium and various fish oils, I also supplement with magnesium , for bones , and vit d, i think all my mineral and vitamin supplements are in order.
Im so fed up of the health service , expecting us to be our own, doctors as this thyroid business is so complex, then what you can eat and what you cant eat,,blah blah,, makes one feel like giving up living when one cant even enjoy the food one used to enjoy. I now have to be careful of anything with flour in it, and certain veg that makes me ill,, its all very frustrating, i used to eat what i liked and not put on a pound, i used to work when i wanted and worked long hours and felt fine, then all at once my body just gave up and i havent been the same since.
5 years ago i had breast cancer , but was considerably younger, and my body recovered within three months of all that radio therapy and stuff and i had about ten bouts of that , and all though i was tired for a few months nothing like this.
I have hit the menopause and have a hip bursitis and an autoimmune thyroid , all at once and my body just couldnt handle it all, along with the stress of my family all being ill around me(my brother is dealing with a tumour , my daughter has internal probs, and my fella and his hip operation, the whole thing, and at the time it looked as if they were all going to have their ops at the same time. I ve got to say my son has been an angel working extra hours to keep things afloat).
But these shakes,, I get up in the am to take my pills and the 1000 spin speed washing machine thing starts ,, and it doesnt go until i go to bed at night ,, or in the early hours of the am more often,, my hip is so sore as its not getting better qas my thyroid is dying and not helping my body heal.
By december i shouldnt wonder that i haven't read more books on the thyroid than he has in his whole career,, hes a pompous man and not the easiest to get on with. Im on actavis levothyroxine, and have been since april , i really hate taking it , i always take it on an empty stomach about 5 am ..so to get my body used to processing it before i have to go back to work.
I feel so weak at the moment that that prospect isnt a good one as they tell me ive got to be 100 fit before i return ,,,as i do a job outside, and walking is a huge part of it,, i dont feel strong enough currently as i dont go out alot as its too painful, but i am seeing a hip specialist on 2 october.. Just fed up of gps and endos not getting things right as the health service doesnt let them or they just cant be bothered.
Why do people constantly promote MORE medicine instead of the way back to Health?? I am sure you all have heard of Natural Medicine? I know from experience NHS Endos will give you as many drugs as they can which means you are just filled with toxic chemicals! How about a NEW approach? How about trying a Functional Medical Practitioner? They are located here: functionalmedicine.org and by the way, the cost is not as expensive as you think. THERE is help astro but you have to look elsewhere! Try getting a free consultation and you will see. Many offer this. Many offer supplements which would be so much better on your body then toxic HRT! I am sure you all know there is even information on this site. I take T3 which I buy myself, and this made a world of difference, changing my diet and also working on healing my adrenal fatigue is all a process but heading in the right direction. Cancer is a fungus, can be healed with bacon soda, honestly. But there is no money in that! Google it, read and look at all the free summits out there for adrenals, thyroid, functional medicine, and so on. I know you can get help but the NHS protocol for Thyroid is USELESS! Use them for some blood tests, and even those are not conclusive.
I used to shake internally all the time. Some days worse than others. Stopped after about a month of starting to take Floradix. Subsequently found my ferritin was very low, though haemoglobin was fine. (I also take Levo for Hashi's).
Gosh, you are suffering, and you must feel very frightened as well.
Internal shaking seems to be part of the perimenopause, and you seem to be having a very hard time of going through this transition.
I am not in your shoes, so I can't really know, what you are going through, but I do feel your anxiety and utter frustration of what you can do to relieve your situation.
If you feel you have to take something to get you through, then do so, but remember, that they only temporary mask the symptoms.
The worst symptoms of the menopause is during the perimenopause, one day Astro, all these symptoms
will disappear.
You body is going through hell, but you will survive this.
I would suggest you try some relaxation tapes, also do some self talking:
Say: I am going to get through this, it is very hard on me, and I feel sooooo horrible, but one day soon, these horrible symptoms will have had there day, and eventually go away.
I must do my bit to help my body through this difficult time.
Do this relaxing throughout the day, often.
I will tell you something that I took to get me through, this period, it worked for me, it may not for you,
but it must, be worth a try.
Phytoestrogen food have a hormone like qualities.
They mimic the effect of estrogen as a low dose, and block human estrogen at high levels.
I ate phytoestrogen rich food, and also, I consumed soya yoghurt.
I was well aware, that soya was a goitrogen, I took the yoghurt 12 hours away from my Levo pill.
Soya yoghurt is also a phytoestrogen.
It worked for me..........................
If it helps you, other people are going through what you are, perhaps there is a forum you could join, it makes going through this a lot easier, when sharing your feelings.
Take real good care of yourself, you will see this through, you are having a hard time of it, but you will be fine.
thats very kind,, i am aware that the shaking is a menopausal thing too but i feel its more the levo as its the same sort of shakes and its all over, its embarrassing as well as frightening , as if i go swimming to help my hip the water sort of shakes too,,
You say one day all this will stop , well i know nothing lasts forever , but at this rate i will stop before the shakes !!!
thankyou for all your help
kind regards
astro
Its so frustrating when you cant get to the bottom of things, its like banging your head on a brick wall l kmow the feeling! Lets hope you get some other form of thyroid replacement then at least you will know if its the levo.
I am foing ok come off meds trying for remission from Graves. Ferratin is stored iron and is checked by a blood test by GP, floridex think its called is a supplement containing iron , Hooe you feel better soon , sending hug x
I had a blood test on Friday,, results next friday, i should think they are going to say oh your tsh is normal right we've sorted you're thyroid...!! your all optimally dosed!!! and all that malarchy..
I hope he doesn't as im sort of banking on this doctor as ive known him since my teens.and i hope hes not such an arrogant pig as to look at me like ive waddled out of some textbook too.
But this inside shakes is driving me bonkers. I heard its also a symptom of menopause, but i will mention to him that i think my hormones have gone squiffy ,,(im not a gp so medical terms aren't my forte!!! )!! its either that or the levo.. im not a good patient any way, My body tends to fight anything foreign, thats prob why i chose to go veggy, as my body didnt like meat at all.
any how i have tended to listen to my body when its yelling at me, its stupid not to...
Hi. I have exactly the same symptoms as you ( have done for the past 8 months ). I have now resorted to Valium. I am on Erfa - not over medicated ( only on 60mg a day in divided doses ). I have had some degree of adrenal fatigue and have been told that this could be causing the vibration feeling ( like I have had way too much coffee ). It feels as though I have too much adrenaline and it causes, tickly coughing, tight chest and permanent tingling. Totally interferes with my daily living. Yet - after many posts on here and seeing so-called thyroid doctors - no-one can tell me what it is let alone what to do about it.
If you get and answer - please post for the rest of us! Good luck to you.
when i find out what this shaking is, weather its the levo, my silly hormones , or the menopause
I will deffo post,,
Im just fed up feeling like ive been sitting on a washing machine all day,, it interferes with my walking , which is difficult at the moment with my bursitis, but my endo is so pompous he spends most of the time telling me how good he is at his job!!!
I was feeling a little better when i took 75mg levo but then the shakes started, which made me think it was that, as i hadnt upped anything else.
anyway thanks for your care all of you
if it wasnt for this community i dont think i would have got through this
Well - I am 6 years post menopause so it's not that. I do use Progesterone as I have osteoporosis ( another little gift from declining hormones ). I have has bad stress for many years so I'm guessing it's the adrenals as I cannot raise the NDT past 60mg at the moment. I am hoping to see Dr Barry Peatfield but can't afford his fee yet. NHS completely useless - Levo made me worse as I have Hashis and can't convert T4 to T3 - hence trying the NDT. Hope you feel better soon.
I saw Dr Peaterfield had moved to warlingham,!! but since ive been off for six months with this i cant afford diddly,,,
I have auto immune hypothyroidism too..
I hope i feel better soon as i am so weak, im frigtened to go back to my job as its outside with the public and stressfull, I told my boss i couldnt protect myself out on the streets like i used to as i cant run or walk fast any where as my bursitis on my hip is bad. Caused by too much walking ,,,
but these shakes and panic attacks , luckily the panic attacks have subsided somewhat, but the shakes are horrid,
You have bee through the mill! I do hope things improve for you - for all of us out here that are not being treated properly. Keep using this site - it's a point of contact and empathy if nothing else. All the best. x
I've been lowered down to 75 it's way too low for me but the tremors have stopped but I know I'm going to feel awful soon. I wish somthing could be done I'm on mercury pharma eltroxin. Unfortunately it's the only brand I can get here in Ireland. The endo and my doc tried to tell me it was all in my head but thankfully I was able to prove them wrong on lower dose. If only they would listen to us those shakes are awful. I hope you get results soon. Best of luck
The tremors are the pits,, I had to say to myself would i rather shake or ache,,,?
I ache lots on 50 mg , and im hoping that by lowering it i can eventually stop the shakes, its not working so far, so i will see what happens with my blood test on friday ,,,
Good luck with all your gp/endo/ visits,, i hope your gps in ireland care more about getting you cured as in uk, they seem to think they can palm us off with more meds that dont do a thing than actually getting the stuff to work,
I just feel like sleeping the whole time as its a respite from these darned shakes,
I really feel sorry for anyone who has any sort of disease that makes them shake the whole time with no cure ,,,
hope you dont feel too bad soon ,, all the best,, my thoughts are with you,
Thanks Astro I ache so much myself but would rather take painkillers than zanax and sleeping pills for those bloody tremors. I think all docs and endos are the same they tried to tell me my urge to urinate and anxiety and tremors were nothing to do with eltroxin but I proved them wrong when I got put on lower dose everything eased. Now my endo is trying to tell me that I'm tired because if taking half a sleeping tab despite the fact that I'm not taking them anymore. Don't think they will ever understand us I wish they would live in our shoes for just one day.. Hope you get some relief soon
Astro, I have to say that I am going through the same thing right now and desperately trying to figure out what is going on and how to make it stop. I dont know how often you are on here as I see this post is a year old. If you are on reach out to me please.
yep i agree,,im sitting here at night aching, and these ruddy tremors are driving me nuts,, ,, its gone thru my legs right up my torso and all down my back and all the way back down to my legs ,,,its like sitting on a washing machine and its so annoying ,,,it makes me so tired, but i cant sleep ,,,!!! nuts eh?
Did you ever find the cause of your shaking inside.? I haveit regularly . Drives me nuts. I have searched the www and everywhere says its anxiety which I do have. The thing is I never had it before I went on thyroxine .I don't know what to think
I have the same feeling its as if I am moving, It feels as though I am shaking but its a tremble inside, haven't got a clue. I can be honest the only time this stopped alongside the muscle twitching is when I was doing the parasite cleanse! sleep improved hair grew etc
I also have the unbearable shake inside from the synthetic thyroid， even stop 10 months ago and switch to nurture ones. I still suffered. Do I like to know how about it to you now? I hope you have bet it right.
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Thanks for the replies
T3 can cause you to have a heart attack
