Rapid eye movements and chronic pain anyone?

Hello again, I did not have my blood tests the other week as I was taken in to A&E in chronic pain. The docs suspected kidney stones initially. It was later diagnosed as a massive muscular seizure in my abdomen and lower back. I have never known pain like it. Can this happen with ?Grave's disease? I was hyper thyroid, taken into hypo using carbimazole and have been on thyroxine since that time. I have variously been told I am Hashi and had Grave's!! I cannot be both. (?) I am prone to autoimmune diseases due to a genetic fault.

I have noticed a symptom ( i googled it) possibly called NYSTAGMUS; rapid involuntary movement of the eyes. Does anyone else get this? I mentioned it to my doctor when I was hyperthyroid and he had never experienced anyone with that condition; at that time I did not know the name of the condition; I described it to him and he had no answer for it.

I am going to get my bloods done soon. I have an appointment with cardiology because I have missed heart beats and palpitations. These manifested during my hyper phase and the cardiology dept never liaised with the endo!

Apologies for widdling on.

19 Replies

  • Archaepon,

    It's not uncommon to have Graves and Hashimoto's antibodies. You won't be hyper and hypo though, you will be one or the other.


    Missed heartbeats (ectopic beats) and palpitations are common in hyperthyroid and hypothyroid patients. They're a nuisance and may be uncomfortable but aren't usually damaging. They usually improve when you are optimally medicated but I've found they don't necessarily completely resolve.

  • Thanks. I remember an Endo taking me into 'mild' hypo with carbimazole then treating me with Levo. I am really fuzzy on the events. The eye movements came with the hyper and seem to be happening again.

  • Archaepon,

    Try to arrange an early morning and fasting (water only) thyroid test to check your levels.

  • Thanks. Need to gather my strength then book a test. Early mornings destroy me cos of my ME/exhaustion. Needs to be done though. I can sleep later.

  • Archaepon,

    Remember to take Levothyroxine after the blood draw.

  • I was told and then I've found that if you have an eye problem you are better of consulting and optician that a GP or other specialist doctor who doesn't specialise in ophthalmology. Why? Because opticians are trained to look for eye diseases, and if they decide your condition is serious will refer you to an eye hospital to see an ophthalmologist.

    Likewise if you have a problem with the inside of your mouth you are better of seeing a dentist then a GP or other specialist doctor who doesn't specialise in oral maxillofacial issues. Again the dentist can directly refer you to a hospital if they decide your condition is serious enough. (I've heard more horror stories about this than anything else.)

  • It is not an eye problem as such. It seems to be a reaction to some deficiency or medication. I have had a recent eye test.

  • Did you ask the optician likely causes?

  • I forgot as I have not had it for quite a while until recently.

  • I thought it might be associated with thyroid disease as I had it many times before my diagnosis with hyperthyroid. It settled with the carbimazole. The GP had no idea what it was. It is not bothersome just an empirical observation that may be connected and as yet unrecorded part of hyeprthyroid. I am a genetic one off so that may be the problem.

  • I have huge abdominal& spine muscle cramps & spasms when overmedicated & also on t4. My eyes twitched & my head nodded on T4 - I was told it was due to T4 toxicity. Very scary. Hope you get things sorted & feel better soon.

  • Muscles seizing up can be caused by low iron and low magnesium, both of which are common in people with thyroid problems, either hypothyroid or hyperthryoid.

    Iron can be tested easily enough. Ask your doctors for a full iron panel. I don't know if they will do it, but ask anyway. Once you have been tested ask for a copy of the results, post them on here and ask for feedback.

    Magnesium - There is a serum (blood) test for magnesium but it is very unreliable. The body needs magnesium in every (?) cell in the body. If the blood levels of magnesium get too low the body steals it from other cells to put it into the blood. So you can be extremely deficient in magnesium with perfectly normal blood tests. Therefore, I suggest supplementing magnesium anyway, without bothering with blood tests (unless you have poor kidney function). You need the equivalent of about 300mg - 400mg of magnesium per day. There are lots of different kinds of magnesium supplement in various different forms. Choose the one that appeals to you from these lists :




    It would also be worth getting B12, folate and vitamin D tested. Having low levels of any of those will cause all sorts of unpleasant symptoms.

  • Nystagmus - nutritional causes :


    Note that thiamine and thiamin are alternative names for vitamin B1. You can buy 50mg and 100mg supplements of thiamine/vitamin B1 very easily without prescription.

    Do a search for nystagmus and thiamine (or thiamin or vitamin B1) for more info.

    It would be a good idea to take a good quality B Complex as well as extra thiamine, because B vitamins shouldn't be allowed to get too out of sync with each other. A deficiency of one and high levels of another isn't good.

    Please do your own research into the safety and suitability for you personally of anything I may suggest.

  • I take B1 on prescription. I also take a good a quality B vit. So....

  • How much B1 do you take per day?

  • 50 mg. Plus the multi B vit tablets input.

  • Oh well. Unlikely you are deficient in B1 then! It was a good idea while it lasted.

    I'd definitely suggest the magnesium supplementing then. :)

  • I've had it at night and woke during it too it's horrible makes me feel extremely dizzy and I can still feel my eyes moving when I wake its awful. I haven't been diagnosed with thyroid but when I posted the other day with my story and results people were suspicious and thought I had or was on my way to autoimmune thyroid hashi whether they are linked I don't know but rapid eye movement is just a stage of sleep in a lot of people isn't it?

  • The eye movement isn't when I am asleep: That is REM. I am awake and my eyes 'flash' side to side until I find a focus. I saw someone with it on 'GPs Behind Closed Doors', it was the first time I had seen someone else with the condition. I assumed it might be part of hyperthyroid because I had it many times before diagnosis of my condition. It remains a mystery; but is called nystagmus nevertheless.

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