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Eyes

Posted , 7 users are following.

joleene78405
joleene78405

Can anyone tell me how they cope with bulging eyes, thought I was over this stage now my other eye is playing up, my face swells off an on all day I don't even recognise myself in mirror, some days I feel like I am going mad, my results are more in the hypo range now and I think that has worsened the eye problems, I am coming up to 2 years with this hateful graves diease , I take selenium, fish oil and carniture all to no avail. Any suggestions for help with eyes would be very appreciated

1 like, 18 replies

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  • linda187
    linda187 joleene78405

    Posted

    You need to ask your doctor to refer you to an ocular specialist.  There are ophthalmologists who are trained to deal with Graves eye disease both medically and surgically.  Also if you are not already doing so, you need to add Vitamin D, 1,000 to 5,000 IU per day to your supplements. 
    • joleene78405
      joleene78405 linda187

      Posted

      Hi yes I have been on the waiting list from march last year the waiting time is 19 months
    • linda187
      linda187 joleene78405

      Posted

      Getting your thyroid labs into range where you want them helps lower antibodies and thereby helps the eye disease as well.  I would add vitamin D to your supplements.  The other thing that has been known to give relief is to put cotton pads soaked in witch hazel over closed eyelids for relief of eye symptoms.  As far as the wait list, I am assuming you live in UK?  I would go to the Emergency Department of the nearest large teaching hospital.  You can’t wait 19 months to get treatment for this.  They can prescribe steroids for you so you would get some help even if you have to wait to be evaluated by an ocular surgeon.
    • jane95340
      jane95340 joleene78405

      Posted

      Hi Joleene

      Are u in the US?

      Sorry to hear about your difficulties with your eyes.

      19 months and still waiting appears to be rather unusual and extremely concernong tbh.

      I had an eye problem and went to the local eye hospital where they have an emergency eye clinic/casualty.

      However I realise that not everyone is in the same fortunate position whereby they can access a major teaching eye hospital so readily and easily.

      It may be worth enquiring of the hospital if they could indicate when you are likely to be seen.

      I wondered if you could access an optometrist who could chase up this referral?

      Have you got a local eye hospital where you could be seen as an emergency in the eye casualty department?

      Have you had any thyroid antibody tests done at all?

      Have you anti nuclear antibody tests been done?

      Are you able to get any tests done yourself? 

      Personally I would chase up this referral and insist that something be done Hope the above is helpful.

    • joleene78405
      joleene78405 linda187

      Posted

      Hi yes' in Northern Ireland, it doesn't seem like anyone cares about the effect on eyes as I keep being told it should settle etc my tsh has actually improvedimproved
    • joleene78405
      joleene78405 jane95340

      Posted

      I have already tried that , I have gad referral letters etc and to no avail it is just a long waiting list, I live in Northern Ireland, I have the antibioties gor graves diease that was tasted two years ago, other tests I am unaware, the endocrinologists I see are to put it bluntly , rubbish, I actually came off the phone in tears recently as I am having such a bad few months with my eyes , acne  face swelling tongue swelling, I am taking all sorts of vitamins cutting out aspartame, sugar , I am so stressed with the symptoms I feel my life gas been taken over
    • linda187
      linda187 joleene78405

      Posted

      The eye component of Graves disease is separate from the rest of the disease and is not necessarily related to the TSH.  It is more related to the antibodies.  Some people get it and some don’t.  There are people who had RAI and 7 years later got eye disease even though their thyroids were not hyperactive anymore.   The only thing I would suggest is to go to an Emergency Department of a large teaching hospital and get treated or referred from there. 
  • hypnocool
    hypnocool joleene78405

    Posted

    So when I was first diagnosed.  Endo told me to take Selenium for my eyes.  I took it and I went hypo symptoms so fast but my TSH is still not reading(< .01="" means="" really="" hyper).=""  so="" i="" stopped="" the="" selenium="" 200mcg="" day.=""  i="" was="" taking="" probably="" a="" lot.=""  then="" i="" did="" more="" reading="" that="" brazil="" nuts="" does="" have="" selenium="" so="" i="" just="" eat="" that="" 1="" nut="" per="" day.=""  so="" then="" my="" tsh=""  gradually="" started="" reading="" again=""> 1.  Are you taking any propanolol by any chance?  That med made swell up like a marsmallow.  So I gradually stopped that one either and since my TSH is reading and I contiunously check my hr thru my phone app.  What type of Carnitine are you taking? Acetyl L carnitine is very potent like the Selenium 200mcg.  Im currently taking L-Carnitine.  I was told by my Grave's Eye doctor that in order for my eyes not to flare up I should get my TSH reading normal again and don't smoke or any people that smokes stay away from them.  It's true, my eye gets hurt whenever i was around them.  So I stopped hanging around friends who smokes. 
    • jane95340
      jane95340 hypnocool

      Posted

      Hi I took selenium and it made me ill. i also took L - Carnitine and it made my heart race.

      I found it that it can cause crdiac arrhythmias. I also felt very anxious.

      It seems that if th eye problem flares up that it is a sign of  low Tsh. does anyone else get this impression?

      Does anyone know what a normal level of TSH is pleae? Mine is 0.15. T4 is increased as it is 15.4

    • joleene78405
      joleene78405 hypnocool

      Posted

      Hi yes I ve started both those vitamins recently, my tsh is improved from 0.01 to now 0.27 so that hasn't helped, I feel I ve been over medicated. I will maybe try a break from the supplements for a week to see dies symptoms subside. No I don't take propanadol as I am no longer hyper so the swellng in my face us eith the eye diease or my thyroid being low, when you say potent in what way do you mean, thanks
    • joleene78405
      joleene78405 jane95340

      Posted

      I do take both those vitamins I will take a break. My tsh gas improved but eye symptoms persist,
    • hypnocool
      hypnocool joleene78405

      Posted

      looking at my labs my endo considers < 0.40="" tsh="" is="" considered="" hyper.=""  when="" i="" tried="" selenium="" supplements="" somehow="" sometimes="" i="" get="" these="" hypo="" symptoms="" but="" my="" tsh=""  is="" still="" not="" reading=""><0. so i was still hyper at that time. i don't how to explain it but it's kinda tricking my brain.  my t4 and t3 were in the normal range but my tsh wasnt reading...  so="" i="" was="" still="" hyper="" at="" that="" time.="" i="" don't="" how="" to="" explain="" it="" but="" it's="" kinda="" tricking="" my="" brain.=""  my="" t4="" and="" t3="" were="" in="" the="" normal="" range="" but="" my="" tsh="" wasnt="">
    • hypnocool
      hypnocool jane95340

      Posted

      did you take the Acetyl L- carnitine? That one is fast acting, it me gave the shakes....like my hand shakes so I stopped it after 2 days.  Then I bought L-carnitine that one was better for me.  Yes when my TSH was low I got this eye ache more... I believe normal TSH is .40 to 4.0 but 2.0 is good. lots of room for + or - .
  • Alberta23
    Alberta23 joleene78405

    Posted

    Hello Joleene I did not get the bulging eyes but I am still under the eye specialist because my eyes became dry and itchy with pressure behind the eyes I used eye drops and put cold wet eye pads over my eylids. I am hoping my visit to eye specalist in Dec. will be my last.  regards Jacky 
    • joleene78405
      joleene78405 Alberta23

      Posted

      Yes i do all that also and it does help, it's more the physical change I find quite difficult, 
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