[Quinnie]

#1060453

Hello I am a new member and was hoping to hear from others who maybe have had a similar experience.

I had a complete thyroidectomy in 2010.

Recently due to a weight loss I’ve worked at thru diet and exersize, I became hyperthyroid for a month or so before realizing.

Mad anxiety, irritability and this relentless left under eye twitch for 3 weeks finally clued me in.

So I cut back on my medicine for a few days and after a week it finally stopped. Or so I thought. 6 days back into my regular medicine routine the twitching returned. So on that same day (6 days back into normal medicine but with missing 4 doses in the prior 12 days) I went to doctor to do blood test. Results showed
Free t3 2.69
T4 9.9
TSH 1.54

Of course it was normal as I had missed 4 doses in the past 2 weeks. So the doctor said your fine just keep taking it. Well no I didn’t agree. It’s my body after all and I could feel I was still too ramped up (I was hyper once before without the eye twitches so I know how it feels)

So I decided to stop taking my medicine for 5 consecutive days and then go back to it faithfully. Of course 3 days into stopping the medicine the eye twitching also stops.

Today is day 5 of medicine stoppage and I feel great. No eye twitching and the horrible anxiety is mostly gone. So tomorrow I start meds again as I know I need them and I have always been compliant before. This is my first time going against any doctor and I am 43.

My fear is the mad eye twitching will return. The twitching is very aggressive and only stops for a minute before starting again. It keeps me from sleeping and of course looks ridiculous.

Has anyone experienced eye twitches being overmedicated / hyperthyroid? Did it go away? How long until it went away?

I should also say even though the twitching has stopped there is still a tightness and mild occasional tingling under my eye which is unnerving as it feels ready to twitch. Also very dry sore eyes.

Thank you for your time

[Kimberly]

#1182718

Hello and welcome – I’ve heard of a handful of Graves’ patients complain of eye twitching, but have not seen any specific research on this. Hopefully, others will chime in with their experiences.

You can definitely set yourself back by stopping/starting the meds. If your doctor isn’t taking your concerns seriously and isn’t willing to work with you, you might check out the “Looking for a Doctor?” thread in the announcements section of the forum. There are several options where you can search by location.

Some patients do feel best (and have stable labs) by alternating specific doses on specific days – but definitely find a doctor who will work with you on this instead of making adjustments on your own.

If your eyes are dry, that would be worth a visit to an experienced ophthalmologist for an expert opinion. You can also check out this video from the GDATF’s 2011 Boston conference on eye dryness/discomfort:

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

https://www.youtube.com/watch?v=xat5SBU_1_c

Hope that you can get some relief soon!

[gatorgirly]

#1182719

For me, my eyes only twitch when I’m extremely overtired – which I certainly was all the time when I was hyperthyroid. At first I found myself blaming a lot of symptoms on my thyroid levels when instead they were unrelated or maybe just a second-tier side effect (hyperthyroid -> fatigue -> eye twitching).

What do you mean that you become hyperthyroid due to weight loss? Weight does not control your thyroid levels – rather it is usually the other way around. You didn’t cause yourself to be hyperthyroid because you’re eating better and working out and losing weight.

Like Kimberly said, you definitely shouldn’t be changing your doses on your own, especially as it takes a while for thyroid levels to stabilize. My endocrinologist and I agreed a while back that I feel my best on the “hyper” end of normal with a TSH below 2.0, even though according to my lab, normal is 0.5 to 4.5.

One of my first TED symptoms was severe dryness. Even if you’re not yet experiencing actual eye/vision changes, it’s always good to get some baseline tests done so that if and when changes begin, your specialist can see that there are measurable changes taking place – especially if they aren’t noticeable to those not familiar with the way your eyes normally look.

Good luck!

[Carito71]

#1182720

Hello Quinnie.

I haven’t had that experience but I can see the twitching happening from being tired. My husband doesn’t have thyroid problems and when he is very tired, like from long hours of work, his eye will twitch. It goes away when he is rested.

Gatorgirly, I believe she said that she had a “complete thyroidectomy in 2010”. That leads me to think that if she lost weight by exercise and her dose did not get readjusted correctly then she is receiving more Rx than needed b/c now her weight is less. I have a friend who had a TT and she has to maintain her weight. If she gains weight she starts to feel sick b/c her dose needs to be readjusted. She maintains a very healthy routine and hasn’t had a dose change in years b/c she maintains the same weight.

Just my 2 cents.

Quinnie, hope you feel better soon. I agree about looking for a new Dr if the one you have is not willing to help you with your symptoms. I had to change mine when I first was diagnosed with GD b/c he wasn’t willing to help. You can also talk to your Dr that you have now and tell him that you prefer trying the lower dose for a while since that is the dose in which you feel better. If he doesn’t want to then ask him to tell you what is the danger in trying. I had to do that once with my Dr b/c he didn’t want to keep me on the Rx. He wanted to take me off. He couldn’t explain it though b/c in reality there was no danger. All my labs looked good at the time and I didn’t see the logic in discontinuing the Rx since my TSI was still elevated and I guess after talking, he didn’t see it either. I went over all the numbers with him. I brought my labs chart that I made and I showed him how good I was doing at the low dose. He went for it and let me stay on the low dose for a whole year. He would see me every three months and write the prescription again . Sometimes they are so busy and want to go by the lab #s only but we need to be more specific and truly tell them how we feel and what we want. We have to be partners with them in treating our problem. If you show the Dr that you know what you are talking about with charts and documentation, the majority are willing to hear you out.

All the best.

Carol

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