Hi, I'm strange and my symptoms are strange too :D

I have 2 questions:

1. I get this weird/awful internal shaking/shivering/vibration that mostly comes on when I drop off to sleep. It can even wake me up in the night. Mostly it is in my main body but sometimes it can be isolated in my neck or ankles. I know it is probably just an illusion and that my organs aren't shaking around but seriously it is a scary feeling I can't ignore that. I haven't been able to pin down the trigger although I wonder if it is connected to food or maybe even the computer. The shaking has been happening for the last 4/5 years no matter what medications I have taken or stopped. It comes on when I am sluggish and when I also feel a bit hyper. There doesn't seem to be any rhyme or reason!

2. My latest results are TSH less than 0.02 - it has been the same for the past few yrs My free T3 is 3.9. Back in Feb 2014 my FT3 was 6.0 when I was taking 125 levothyroxine and 1/2 a T4 - the GP didn't know I was taking the T3 and I stopped taking this in Feb 2014 - maybe this was why the FT3 has dropped to 3.9? I have all the usual symptoms and the weight over the last few months is creeping on again along with aches and feeling very tired.

My GP wants to reduce my thyroxine but I think I need more. I am currently taking 125 levothyroxine for the past 18 months?


Carole :D

33 Replies

  • Welcome to the forum, Aakarlhamo.

    Did you still have the internal tremors when you were taking T3? I had them on T4 only but not on T4+T3.

    Stopping T3 is why your FT3 has dropped. It is quite low now and will be why you are symptomatic. Why did you stop T3?

    Your GP probably wants your TSH less suppressed but reducing your dose will almost certainly reduce your FT3 too. If your FT4 is high in range with low FT3 it means you aren't converting T4 to T3 well and you'll probably feel better if you reduce Levothyroxine to 100mcg and add 10mcg T3.

  • Hi Clutter

    Thanks for replying and that is encouraging to know I am not going mad - you know what I am talking about!

    I self medicated with the T3 taking half a 25ug tab along with the 125 Levo - is levo T4?

    I stopped taking the T3 when in Feb the FT3 came back at 6.0. I thought I would be in trouble with my GP and I was as she reduced the Levo but then reinstated it. I never told her abt the T3.

    Yes, I still had the shaking and it doesn't matter if I feel hypo or hyper within myself.

    I have never had a FT4 test as my surgery only test TSH and FT3. Ten yrs ago I tested positive for TPO antibodies.

    I have an appointment with GP on Fri and the nurse has indicated that she wants to cut back the levo because of the high TSH test result. My TSH has been less than 0.02 for the past few yrs and it is the T3 that fluctuates.


  • Carole, sorry, yes Levothyroxine is T4. Ideally FT3 will be in the top 75%-100% of range but it shouldn't go over. It's low T3 that makes us feel hypothyroid.

    As your TSH has been suppressed for a long time there is a danger that reducing your Levothyroxine will make you hypothyroid. Try and resist any attempt to lower it.

    Dr. A. Toft, ex-president of the BTA, discusses thyroid levels and dosing in this link Email if you want the full article to show your GP.

  • Thanks Clutter. Once I take my finger off the button I forget what is what!

    Just to get my facts straight my FT3 is bottom end of normal range so that is hypo.

    I am not sure where the TSH of less than 0.02 falls as the range is confusing.

    I know that the lower it is the more hyper you are as less TSHs are produced because there is more thyroxine floating abt - or something like that! Question is, as the TSH level has never budged regardless of what my FT3 is what does the GP hope to achieve when there is less FT3, so I am confused.

    Is my TSH in the hyper and osteoporosis danger zone? Shouldn't it be higher now because the FT3 has dropped to 3.9?

    I'll have a look at that article tomoz :D

  • Carole, TSH <0.04 is considered suppressed. TSH should rise in response to low circulating T3, but when TSH has been suppressed for some years it doesn't always recover. Your FT3 is probably within range but is nevertheless low. It is low FT3 which causes hypothyroid symptoms.

    Doctors do worry that suppressed TSH will lead to increased risk of osteoporosis and atrial fibrillation but there is research showing the increased risk is due to suppressed TSH and elevated FT4 & FT3 in hyperthyroid patients, not in hypothyroid patients on suppressive doses of Levothyroxine. Suppressed TSH does not mean you are hyper. Your FT3 would have to be over range too.

  • that's a great help. I will be able to put my point across more confidently now, Thanks Clutter.

  • Just tell her you don't agree. They are not supposed to lower your dose without your consent - but if you say nothing, that is taken as consent. They are there to advise, not to dictate.

  • Hi Greygoose, I will definitely talk to her and thanks to Clutter I can put now my point across. I am not the sort to let it rest because I have to live the symptoms!! She is a new dr and as yet I haven't seen her about my thyroid and meds so fingers crossed it will work out ok :D

  • Fingers crossed! :)

  • Just an update. The drs went really well and she said, no need to lower my thyroxine and to keep it as is!! She was so easy to talk to as well :D It looks like the nurse got confused when she gave me my results. So PHEW and breathe :DD

  • That's great! Very pleased for you! :)

  • I get this vibration too, usually when something happens to startle me when I'm dropping off to sleep. I have no idea why, but I'll be interested to read the responses.

  • Just to add... I've been having this for years but have only been diagnosed hypothyroid 8 weeks ago, and on levithyrixine for 7 weeks.

  • Hi Meds456,

    Poor old you as it is really not very nice. Fingers crossed we can get to the bottom of it :D

    At least we know we are not crazy or alone :D

    Have you had it whereby you have been asleep and the shaking wakes you up?


  • I'm not sure. I think a loud bang (for example) wakes me up, my heart beats quickly and there is the shaking. I wonder if it's adrenaline causing it- a sort of fight or flight response to being woken by a noise?

    I worry that my OH can feel it- I've never asked him!

  • Yes, adrenaline. I thought I had bookmarked the article about this but very often it is due to adrenaline due to your blood sugar level falling during the sleep. A snack around bedtime might help. I have to find that article which explains it so well.

  • Any breathing problems during sleep? Even simple things like chronic nasal congestion can result in sudden wakenings.

  • I meant to say Clutter, before I had a hysterectomy I had an external tremor, which stopped after my op.

    I was diagnosed with the thyroid abt 6 months later when all the symptoms really kicked in. The internal shaking then came on gradually.

    For a few yrs before my op I did loose weight for no reason. I was also really tired and wld get funny sensations round my throat. I thought it was my hysterectomy that set off the hypo but I have since learnt that the weight loss was connected. Strange though how the external tremor changed to an internal one!


  • Maybe Med456,especially as you wake up abruptly. Mine is more I am drifting off and the shaking brings me back. It is getting to the point where Ican feel an underlying shivering sensation when I am awake now.

    What is a OH?

  • Sorry- OH is other half.

    I would not describe this as a shivering sensation. It's a definite vibration, like someone's put an electric toothbrush or a vibrator (sorry) right in the middle of my body. Very, very weird. I've never told anyone about it because I thought I was just weird!

  • Yep, you describe it well but sometimes it feels like a tight shivering - more so when I am awake and aware of it.

    All the health professionals look at me like I am weird and my doctor put it down to the fact that it is because the body is at rest at you become more aware of things!!!!!!

  • I also had this feeling it was a bit like I was a car in idel

    I also rember that a sudden noise I couldn't see would set it off

    My daughter lived at home then and if I was in bed and she ened her wardrobe or turned her light on it would set me off

    The worst one was someone washing up and the pans or cups banging

    At the time I was told my thyroid was normal but a few months

    Later I was diagnosed hyper I have graves and hashi antibodys

    Since I have been on carbimazole this has stopped I'm now over medicated and hypo and although i have now got pains in joints

    And I'm exusted im no longer easily startled

  • Did the loud noises make you jump, startle you?

  • Yes, loud or any unexpected noise makes me jump easily but it definitely doesn't set off the shaking/vibration.

    I think it was the Thyroiduk site that I first found a reference to it some years ago. All it said was that some people with hypothyroidism experience a weird internal shivering!! I never explored it further as I was under the impression that it would cost money.

    I have seen good therapists and nutritionists over the years and they are just as baffled. Mention that it could be the liver or kidneys being the favourite cause but nothing concrete,

    I do seem to have some digestive issues and appear to be intolerant to starchy foods unless it is just my metabolism? Anyway, I wonder whether it could be food related as sometimes it is like the digestive tract is vibrating, Although it can be other places but mostly the centre of my body.

    It sure is a head twister trying to get to the bottom of it so I can do something about it, I expect you feel the same?

  • Wow. I never knew it was a 'thing'. It was just my weird secret until today :-)

  • Awe, yours sounds like Med435's symptoms with the sudden noise.

    Noise doesn't affect me.

    There doesn't seem to be a happy balance with it all does there :(

    My sister had Graves and she took carbimazole. I can remember her hating them.

    in the end she had the radiation? to kill off the thyroid and then just took levo from which

    she did everso well - loads better.

  • Aakarlhamo

    It's funny that you keep being told its your kidneys

    Before I was diagnosed every time I called the doctor they did phone consultations and every time she said it sounded like cystis even though urine didn't show that it became a family joke that it was the only thing my doctor would diagnosed got a headache must be cystis funny how she would treat me for cytis with no medical evidence but kept saying thyroid was within range and would not treat eventually I shouted at her on phone an said this is not cystis she was not amused and said come and see me tomorrow if you have had it this long it can't be urgent

    Next morning she took my pulse which was 158 she then sat there and said your very ill and sent me straight to hospital

    The shakes stopped quite quickly when I was put on beta blockers and the jumping and shaking set of by be startled calmed down with carbizamole I put it down to the tacycardia but prehaps it is a throyid sympton in general

  • Hi, (I too have Hashimoto's Thyroiditis). I had and still sometimes have internal tremors in my thighs and torso as I go off to sleep. When I was still teaching full-time and had just arrived home from a hectic day teaching 6 year olds and a 30 minute stressful drive as I got out of the car and waiting for the elevator to my apartment I would get the inner tremors (this was before I started taking Levothyroxine). It mostly happens when I go off to sleep and start to relax. Sometimes I get heart palpitations at the same time. I've tried researching this on the internet and have found no explanations or treatment for this. I've told my endocrinologist and he's not concerned and as it doesn't hurt I try not to worry too much. A couple of times the tremors have been all over my body. I'm guessing it's something to do with relaxing and whatever hormones, muscles, nerves play a part in that. I've been taking Levothyroxin for over 2 years and I have the tremors less often but I also gave up full-time teaching at the same time and had a hysterectomy during that time. Best of luck finding the answer and please let me know if you do find the answer :)

  • I have Hashi's, but had a total thyroidectomy 1.5 years ago. The internal vibrations started the day after surgery and have not stopped. I get them mostly at night as I drift off to sleep. If I wake in night or if I'm startled in the night, they are really bad. I know that this is an old post, but I just wondering if anyone has found any answers. thank you!

  • Morning :D

    Still no further forward with the reason for the internal shaking.

    Hopefully, someone with an explanation will see this post and enlighten us all.

    I for one would love to know the connection between sleep/rest and them?

    One thing though, it is good to know that there are others who suffer these strange symptoms - not that I would wish them on anyone....

  • I'm experiencing this right now.

    I've been having other symtoms of muscle twitching, zaps, and burning.

    I have hashimotos...

    Currently I'm trying to fall asleep and every once and awhile my muscles will twitch.

    I feel like my breathing is fast, but when I start to doze off my body feels like its shaking. I can't fall alseep like this because I think I'm going to die. It intensifies as I try to stay with it.

    Sometimes when my twitching is bad I feel like I'm going to have a seizure.

    This vibration feeling feels like a seizure is going to start.

    I've never had a seizure. I've experienced this vibration feeling a dozen or so times. Like once every two months. And its always in responce to a bad day of twitching.

    I've looked into channelopathy and neuromyotonia.

    I've been diagnosed with BFS, Hashimotos, low Vit D, Neg Lyme, borderline low B12, GERD or Achalasia.

  • Here are two things that give you google and doctor question clues....

    1) This is total bs... I think. And it makes me mad that there are so many alternative medicine people in public and all the real researchers are super private.

    2) Sleep paralysis and vibrations. If you look at sleep dosorder forums you'll find that the vibration feeling we have is common in people with sleep disorder/sleep paralysis.

    I think these issues are neuro electrical in nature or chemical... And are consequences of our bodies information and disease processes... Which really sucks.

    One remedy I have for the vibrations is body rocky to fall asleep. You should also make sure your breathing is normal, meaning you aren't trying to control it. Let the autonomic part of your body take over the breathing.

    Hope we can all get through this! We have so much potential and we should be strong. People go through worse. We are strong and importantly not crazy or full of anxiety. Our symptoms are apart of a real dosease process and we need to be patient and seek help from our doctors.

  • Hi! I also get this. I have Hashimotos. I get it when I'm drifting off to sleep, but also sometimes in the day, I think we probably notice it more when we are still and laying down. The main link I've found is that it comes when I'm feeling what I refer to as 'off balance' - I also think it might link to magnesium deficiency. I'm going to get my bloods done to see if anything is up as I'm experiencing it a lot at the moment. I'm super interested in how it relates to sleep, must be sleep hormones involved. Glad to see I'm not the only one!

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