I’ve been on Levothyroxine for about 11 years now. A few years ago I started with a strange painless static electricity feeling in my hands and over time it spread up through my body until I could feel it everywhere. I saw a neurologist and he basically said it was stress. I just accepted this as a weird neurological thing and have learned to live with it and try to ignore it best I can.
Anyway recently I’ve seen a couple of posts mentioning similar sensations so am now wondering if it’s actually related to my thyroid. Someone has recently posted saying they started feeling static electricity feelings after starting on Levothyroxine. Someone else mentioned feeling internal vibrations when they’re levels were off. Just wondered if anyone else had similar experiences?? Would like to think there might be a solution and I’m not going to feel like I’m plugged into a charger for the rest of my life!
Many thanks in advance!
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Daisybellerose
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I have nerve issues that I believe are hashi/thyroid related, but I haven't investigated further. I noticed kind of stinging in my hands and forearms when I had a TSH of 14. It comes back daily when my low low dose of armour (1/4 grain) that I dose 3 times a day starts to wear off, it wears off in like three hours. I also take 50 mcg Synthroid at night. I've never been on a regime that has alleviated my symtoms at all, but nerve sensations seem to be a part of it. I can't work out if it's from the disease itself or a side effect of the medication or something else entirely. I was dx hashi in June 2017 so it's been a long two years of trial and error.
Hi I get this sensation too ! I have been diagnosed Hashimotos for 20 years and on 100mg Levothyroxine. This has plagued me for about the last 3 years and my Dr or rheumatologist don’t know why other than it is caused by stress or fibromyalgia. My stress levels and anxiety peak with various symptoms that Hashimotos throws at me ! I try to keep stress levels down and avoid stimulants such as coffee and alcohol which makes the internal vibration worse but anxiety about my health does cause me stress 😬 hope you find your answers. Will be interested to hear if anyone else feels the same xx
Sorry to hear that but also reassuring to know there are others going through similar as at first I thought I was going mad! Doctors look at you like you’re crazy. I think mine was triggered by an anxious period but then has never subsided even when I’ve not particularly felt anxious about anything. I did wonder about fibromyalgia as my mum has been told she has this but the recent posts I’ve seen on various thyroid groups has made me question it recently. Its been suggested that poor conversion to t3 or even high reverse t3 can cause similar sensations. I’m thinking of either adding in some T3 or moving to NDT soon anyway as levo doesn’t seem to working for me anymore so it will be interesting to see if it helps. Would be do nice to feel normal again!
Hi I get this! I also didn’t know if it was Hashimoto related but the other day I messed up the timing of taking my thyroxine and took it 8 hours early (at nighttime instead of morning) and by the end if the next night it felt like my hands and forearms and elbows were so achy and hot somehow. I think this must have been linked. Generally though I get lots of tingly feelings in the day in hands, sometimes spasms in fingers.
Yes sounds like hypo symptoms maybe get your dose checked. I’m suffering with a lot more of these weird symptoms at the moment so have paid for a full thyroid panel. Hopefully this will shed some light on what’s going on!
I had this a lot especially in my legs. I’d get it on taking Levothyroxine. I don’t think it was the Levothyroxine perse. I think it was that I wasn’t converting T4 to T3 hardly and my body racing with tingling sensations trying to get to work. If I wasn’t converting hardly I was still under medicated. I haven’t had the tingling since I started T3 medication. I believe it was because my body was struggling to convert and still hypo.
That’s really interesting as I’m thinking I’m not converting properly anymore and waiting for my t3 result at the moment. My free T4 is high but I feel worse than ever. I’ve found a private GP who said he’ll prescribe T3 if I need it so fingers crossed it makes a difference! Thanks for your reply.
Fingers crossed! When my T4 was high and my T3 was low I felt the worst. I have had the DIO2 gene test recently. I am positive. If it’s helps you I’d suggest you get it too at £150. It will help any Dr making the decision about T3 medication if yours is positive too. I’ve had Hashimotos for 12 years and struggled from time to time with weakness. I’d be out walking my dogs and suddenly go very weak although I’d had breakfast. Some mornings in work I’d go very weak and blurred vision. I’d be sent home and sometimes even taken to hospital. No Dr would believe me or could find anything wrong. That was because they never checked nor understood T3 and the impact of low T3. I now know what and why with having the gene test. So for years T4 medication was not converting very well. Then last year it was like the T4 wasn’t converting at all after a GP increased the T4 I went worse. Then the day I took T3 was like a miracle.
Wow that’s amazing. I honestly can’t believe they don’t test t3 there must be so many people in a similar position. Ive never felt good on t4 but because the symptoms are so general you just put up with it. I didn’t realise there was any other option other than t4. I’ve learnt so much in the last 12 months just wish I’d started reading about it all so much sooner!
Probably not, tsh was fairly high but even when optimal hypo symtems still remain, eg dry skin, hair, fatigue, chronic constipation. Doesnt matter how low my tsh goes my symptoms remain.
Maybe not your thyroid then if symptoms persist with optimal levels. Are all your vitamins good. B12, ferritin, folate and D. They’ve got to be at the upper end of the ranges.
Your TSH could be suppressed with the T4 and still requiring T3. That happened to me last year.
My T4 was at top of range. TSH suppressed. But T3 was 3.9(3.7-6.0). I had to lower the T4. Immediately I felt better even though T3 was not yet prescribed. But was still comprised. Once T3 prescribed I was normal.
That’s interesting. I was thinking of lowering my dose while I wait for decision on the t3 but was a bit nervous I might end up feeling worse! Did your t3 change as your t4 came down with the lowered dose or was it not really affected?
Hi. No it didn’t change my T3 tests, it stayed the same as very low. I may have felt better as my TSH came back within range. I believe my TSH was shouting ‘lower the T4 please’. It was even effecting ability to walk properly and my cortisol was very low. Have you had yours checked. Unbelievably as I started the T3 medication within a month my cortisol also improved from 150 (155-607) at 9am to 311 at 9am then a month later again it was 450. It hadn’t been that high in over a year during my long term thyroid issue last year. All I ever needed was T3 as my gene test also confirmed. Have you thought about the gene test. I wish now that I’d got it done first not last.
Have you had B12, vit D, folate and ferritin checked also. These should all be optimal not just scraping the barrel at the bottom end of the NHS ranges. These vitamins help drive the thyroid functions.
When I think about it now it could have been cortisol being low causing the tingling in my body. I’m not really sure as two things were going on at same time. low T3 and low cortisol.
Ok I might try reducing it from tonight and see if I start feeling a bit better! I’ve tried to test most things and been supplementing where necessary. Nothing was particularly low apart from vit D but that’s coming up (albeit very slowly!)
I did a cortisol saliva test and all read ok apart from evening was high. I had had an unusually quiet and relaxing day that day so maybe I need to do it on a normal day when the kids are around etc!
Yes if my t3 does come back low I’ll definitely do the gene test
Good luck. Take it easy. And reduce T4 slowly then see how you feel and get your bloods done again in 4/6 weeks. only reduce a small amount. What dosage are you on? I reduced from 100mcg to 75mcg. I was over medicated at 100 mcg. I only need a small amount of T4 for some unknown reason to me. I now take 5mcg T3 twice a day this again is only a small T3 dose. But small it may be,it makes me normal.
That's a Great move . You are reducing to 88mcg T4 . Like I like to do it . But give it some more time a few days might not be enough . It usually takes me personally about 22 -23 days till I feel no new changes are happening and things are settling . Everyone is different . Some it can take sooner while others can take a bit longer still .
Great suggestions . Personally I like to reduce or raise my dose even slower from 100 mcg T4 I reduce to 88 mcg T4 . And visa versa . I wait and see how my body acclimates to the new dose change . Slow and Steady Wins The Race .
With a high FT4 it makes it difficult to add any T3/NDT . One can get all kinds of symptoms . Thinking that the T3 is no good . Lowering first the FT4 in US would be around 1.1 -1.2 when one can start adding any T3 . Hopefully starting with a very low dose at first . Increasing slowly doses with lab results and while journaling symptoms . The TSH is not a good reflections at this point when lowering T4 since it could some time even sometimes months for the TSH to rise and reflect the new changes . That's why dosing by TSH only is incorrect .The most important markers at this point would be FT4 FT3 .
Looks like , as you aren't feeling on top of the world that you have a conversion issue asFT4 on the high side so chances are FT3 is too low but your doctor will have to fight to get that tested. Have you optimum results for Vit D, B12, folate and ferritin tested? These help your thyroid to work better and help conversion issues. I managed to reverse mine doing that but it can take time if levels are very low. Once you add in T3 your can't see if conversion is now working so may be aswell to stick with Levo till that is improved.
Yes I’ve tested all the key things and all middle of the range so have been supplementing to get those up. Vitamin D is the stubborn one! Going to retest in a couple of weeks. Everything takes such a long time! Guess patience is key! X
Very true! We do need a lot of patience! But keep taking the supplements as they are often for life but when optimal and feeling better you may find a maintenance dose
I use to get this a lot but noticed since starting T3 it’s settled. On days when I forget to take T3 I’ve noticed it returns in the afternoons. Am still waiting for nerve conduction studies but am convinced it’s T3 depletion related
Interesting. Yes my neurologist sent me for nerve conduction tests even though I feel the sensation absolutely everywhere! Surprise surprise they came back ok 🙄
I got electric shock sensations especially in my knees prior to treatment that was probably problems with calcium magnesium and potassium all being out of whack with the thyroid seriously failing. Not quite what you describe which also pretty abnormal and the skin can get all sorts of weird feeling with this wretched disorder. I’d be suspecting you are not properly optimised on your medication.
I had this sensation like electricity is running through me . May I say not very comfortable feeling . It was mainly running through my arm . At first I did away with it . But I experienced this strange sensation more often and I started to connect it to my high FT4's . Lowering my FT4 dose has helped with these sensations to stop .
I'm on T3 and sometimes get it in my legs. I also get in my stomach what feels like that tingly sensation before a sneeze. I hadn't linked it to stress / lack of sleep but it could well be that.
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