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Graves diease

Posted , 7 users are following.

joleene78405
joleene78405

I have had graves diease for abouta year and half and now stable on 5 mg of carbimazole, one of my eyes is affected, puffy, swollen eyelid retracting weird staring and one half of my face is different to the other, over the last 2 weeks I have had bad headaches with pressure behind eye and it looks worst ever which is strange as this is the first time my levels are normal, I have just returned to work from maternity leave and I am under a lot of pressure with 2 small children , my question is could stress be making my eye worse or could it be the carbimazole, I never had eye problems until I began taking medication, I have been waiting over 7 months on a eye appoint ant and I am very concerned and depressed anout my physical appearanceappearance

1 like, 29 replies

29 Replies

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  • lydia19176
    lydia19176 joleene78405

    Posted

    I live in the states   Early treatment will help with a better outcome so call your doctor tell them what's going on with your eye and he should get you in to be seen.  Good luck 
  • michelle60449
    michelle60449 joleene78405

    Posted

    Both of my eyes are affected. My left eye is far worse that my right eye. I suffer with sever dryness, redness, sharp pains, blurred/double vision, gritty swollen eye. I've been dealing with this for almost a year and will probably have orbital decompression surgery sometime in the near future. I was told by my opthalmologist the surgery will greatly improve my appearance, vision and all other symptoms. I'm taking 10mg of methimazole one a day. I started out taking 10 mg twice a day. I had  eye problems before taking the meds. Are you sure its the meds or the disease? Just know that you are not alone in this struggle. I deal with negative comments about my appearance everyday but you cant let that get you down.
    • joleene78405
      joleene78405 michelle60449

      Posted

      This is the problem everyone has differing opinions about the medication, symptoms etc, my graves was discovered during pregnancy and only because of fast purse, sweating anxiety it's not that I ever felt truly unwell until I started the medication that's when my eye problems began , it's very stressful, as if my eyes aren't bad enough my face is puffy and distorted, is this the thyroid eye diease or what is causing puffiness
    • jean34329
      jean34329 joleene78405

      Posted

      Hi Joleene

      In order to gwt an answer to the cause of your eye signs and smptoms it is essential that you go to a dr and get checked out.

      It could be that you require auto immune testing as well as an opthalmology opinion. I started with headaches and a trobbing pain in my right eye . I saw a consultant ophthalmologist who diagnosed dry eyes with concretions. I was referred to a neurologist who specialised in analgesic induced headaches.

      Jean.

      You really need to get a thorough eye examination by a qualified ophthalmologist.

      Thyer can occur in te first trimester of pregnancy.

       

    • sarah00123
      sarah00123 joleene78405

      Posted

      I have the exact symptoms as you and my eyes and face didn't get puffy until I started on carbimazole. I feel exhausted the next day if I have to do anything the previous day that is vaguely strenuous, which with young children is most of the time. I just have to carry on though and make sure I get enough rest. I don't seem to have lost any weight or have bags of nervous enwrgy like the text books say!!
    • joleene78405
      joleene78405 sarah00123

      Posted

      It's very hard, as how can you know if the thyroid is causing the puffiness or the actual medication, even  when my levels are stable my face is still puffy, I don't think my apoearance will ever be normal again
    • jean34329
      jean34329 joleene78405

      Posted

      Joleene

      May I ask you when the puffiness of your eyes and face started?

      I assume that you have had your baby.

      Have you been tested for auto immune diseases ?

    • joleene78405
      joleene78405 jean34329

      Posted

      Yes she's over a year old, I was quite swollen in pregnancy which was also put down to the thyroid and pregnancy, very puffy legs and ankles , this only really subsided about six months ago, during pregnancy the eye symptoms started, watering , itchy baggy but once I was put on higher dose of carbimazole the eye shape and really bad puffiness started, my levels are only now normal but my eyes are at the worst they have been , no one explains tests or results, I do think I have antibodies and I was told this is graves diease, I have added vitamins selenium etc through reading forums to no avail, I am quite a stressed out person and so this is completely taken over my life it stops me from going places and I can barely look people in the face, people hardly recognise me and I know it's due to the puffiness I just don't know why it won't subside
    • joleene78405
      joleene78405 linda187

      Posted

      5 mg of carbimazole, I have been on 40mg 20mg then 10mg and only at 5 had it settled , it was going very far under at anything else
    • linda187
      linda187 joleene78405

      Posted

      I am an another Board and we have found that many Endos overdose.  40 mg is way too high.  Often they are dosing according to TSH rather than the Free T3 or Free T4 levels. 
    • jean34329
      jean34329 sarah00123

      Posted

      Dear Sarah

      Did your thyroid problem start when you became pregnant?

      have you had time to google Carbimezole and Thyroid eye disease?

      Did you have any eclampsia whilst pregnant?

    • sarah00123
      sarah00123 jean34329

      Posted

      No it started about 8 weeks ago with swollen ankles and breathless and tachycardia. I work in A and E and got 1 of the docs to check me out. They thought I was having a heart attack as my ecg was abnormal as well. But they did bloods for thyroid at the same time and called me back in to clinic and told me. I was so relieved as I wasnt having a heart attack and thpught great maybe now Ill lise weight and have some energy. How wrong I was. Feeling lousy this week, going to the gp on monday. My 1st appt with endo is not intil 14th october!! I'm 51 yrs old!
    • sarah00123
      sarah00123

      Posted

      My kids are 8 and 10, I was a late starter, but had no probs with pregnancy!!
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