Double vision with Graves and hyperthyroidism

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Has anyone any experience of double vision which continues to worsen week by week?  It's driving me crazy.  I have had four different stronger prisms on my glasses since 29 May 2018 which I am told is unusual.  The light is affecting my eyes really badly and I am even wearing a baseball hat indoors!  My endocrinologist says my T4 and T3 are within range but my TSH is low at 0.05 and I should just continue taking my daily 40mg Carbimazole and 50mcg Levothyroxine.  I have made the decision to take Vitamin D3 but wonder if there is anything else.  It doesn't help that I have terrible brain fog and the muscle weakness and aching joints keep me awake at night.  Help!    

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  • Posted

    I am assuming that because you have eye symptoms that you have Graves Disease?  I also assume that you live in the UK?  You are on a Block and Replace regimen which is very common in the UK but not in the Western world.  I live in Canada.  If I were you, I would search for an ophthalmologist who specializes in Graves ocular problems.  You might require eye surgery or perhaps just an ocular steroid but in any case, there are eye specialists who specialize in Graves eye disease.  The muscle weakness I believe is due to the loss of vitamins, minerals and amino acids in the body with Graves disease.  In my case (I have Graves diagnosed in 2007) I just have very dry eyes and use drops every day.  I had a TSH of less than 0.001 for 2 years.  Then in 2009 I read a research article about the benefits of hyperthyroid patients taking Regular L-Carnitine, 3,000 to 4,000 mg a day.  I didn't want to take this without knowing my start level so I had my doc test my Total Carnitine and Free Carnitine levels and I was deficient as are most hyper patients.  I also got my vitamin D and Magnesium levels tested and I was deficient in those as well so took all these supplements and my TSH started to improve.  I then took Acetyl-L-Carnitine and my TSH just shot right up.  However Acetyl requires a lot of dose adjustments or stopping and starting based on lab tests in order to not go hypo and I usually caution anyone who tries this as I have seen too many people go from Hyper to Hypo on it.  The Regular L-Carnitine does not cause this problem and helps muscle weakness.  In your case, I would not recommend Acetyl because you are on a block and replace regimen.  If you want to try the Regular L-Carnitine, I would not take more than 500 mg to start and see how you feel on it.  Almost all patients are deficient in vitamin D and this is necessary for optimal thyroid functioning,  I took 1,000 to 5,000 IU of vitamin D3 in gel caps form.  I found this form better than pill form. 

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    • Posted

      Hi Linda 

      Thank you for your very full and knowledgeable reply. Yes I do have Graves disease which when I was first tested came back as a false negative. As you surmised I live in the UK and  I was put on a Block and Replace regime because I had swung many times from hyper to hypo.  It was only after starting 40mg Carbimasole and 25mcg of Levothyroxine that I developed the double vision. 

      It appears that our system here is very different from yours in Canada.  My endocrinologist who I last saw at the end of January also looks after the welfare of diabetics so getting someone here who specialises purely in Graves is not usual.  Here we seem to see many people - Orthoptists to fit prisms, Field Vision Specialists to test peripheral vision and then Eye Consultants who oversee the eye conditions. Fortunately it was my eye consultant who prescribed eyes drops which I use four times a day because my eyes are so dry and gritty otherwise I don't know how I would manage.  

      I have never been tested for any sort of vitamin deficiency but I will certainly ask about all your suggestions  regarding Regular L-Carnitine, Free Carnitine and Magnesium when I see my endocrinologist again in October.  I think I said previously that I am taking Vitamin D3 in gel caps but I am nervous about taking anything else which may make my situation worse.  All I know is that I have to be able to get a handle on this complaint so I will be asking for all my test results to date  so I can fully understand what is happening to me.

      Thank you

      Rosemary 

       

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  • Posted

    Have you been tested for Hashimoto's antibodies as well as Graves?  That would certainly explain why you would bounce back and forth.  I don't know of many Graves patients that go from High to Low and back.  

    It is the same in Canada.  Most Endos primarily treat diabetics and will see thyroid patients but there are fewer of them compared to diabetics.

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    • Posted

      Hi Linda

      As far as I am aware I have not be tested for Hashimoto's antibodies.  So getting all my results to date would probably show whether I had or not?

      Thanks for all your help

       

       

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    • Posted

      You may have been tested for anti-TPO.  If so and the result is elevated, it indicates a high level of inflammation.  The test for Hashi's is TGAb.   Hashimoto's antibodies attack the thyroid gland directly while Graves antibodies attack the TSH receptors in the pituitary gland.  I don't usually see Graves patients going from high to low and back but I see that a lot with Hashi patients or those who have both Graves and Hashimoto's.

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