Graves diease

Posted , 7 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

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

Report

29 Replies

Next
  • Posted

    It is neither the stress nor the medicine.  Thyroid eye disease (TED) happens to many Graves patients.  Some have it worse than others.  I don't know if  you live in a city or small town.  I live in a large city with teaching hospitals and I would go to Emerg if I had that because you will get referred a lot sooner if they document the eye problem.  I saw a cardiologist within 2 weeks and had an Echo in another week.  That was pretty good.  A lot of patients with eye disease say they get relief from using Witch Hazel on pads and placed over closed eyelids.  Also taking selenium 200 mg helps.  I just found a new eye drop made in England called Refresh Optive Fusion which really helps the dryness in my eyes and redness.  If the eye problem is more severe, you need to see an ocular surgeon specialist.
    Report
    • Posted

      This is a totally wrong use of an ER, go to your GP and he will refer you just as quickly if not quicker as the ER send a letter to your GP who will then refer you, so it is in fact slower to go via ER. I work in an ER and a chronic illness is neither an Accident nor an emergency unless you have a very rare thyroid storm. PLEASE DO NOT USE YOU ER /A&E TO TRY AND BYPASS OR SHORTCUT THE SYSTEM. IT DOES NOT WORK AND YOU MAY PUT OTHER LIVES AT RISK. YOU WILL ALSO HAVE TO WAIT A LONG TIME BECAUSE YOUR PROBLEM ISN'T URGENT,
      Report
    • Posted

      T always seems when my thyroid goes under the eye symptoms get worse, my face is also really puffy, I get up every day at 5 to ice my eyes before work at 8 as to go out with my ice so puffy and big I would be embarrassed, the swelling makes the eye more noticeable, I lice in Northern Ireland, I phoned today and was told there is a 17 month waiting list so I can still expect to wait a year and even then I don't know if doc will help. Do steroids help the swelling ? I am very depressed at present I have people say the carbimazole makes the eye worse , I don't know weather to continue on medication or stop altogether to see does the eyes improve , 
      Report
    • Posted

      Do not stop your Methimazole.  The eye problems are not caused by the med but are in fact, part of Graves disease.  Though it goes along with Graves, it is considered a separate disease.  Some people experience no eye symptoms, some experience mild symptoms like dry eyes and others are majorly affected with eye swelling and protrusion and double vision and require an ocular surgeon to correct the problem.  Also getting your Graves disease into remission will help.  For the eye problem, what others have told me they do is soak cotton pads in witch hazel and place them over closed eyes to get some relief.  They take selenium 200 mg or eat 2 hazelnuts a day.  Steroids are absolutely used in the more severe swollen cases and are necessary.  For getting your Graves into remission, taking supplements along with your medication also helps.  I took Regular L-Carnitine 3,000 mg after reading a research article about this that said it was  beneficial for hyperthyroid patients.  I also took vitamin D, 1,000 to 5,000 IU per day along with curcumin for inflammation and a few others.  Some hyper patients also take Motherwort and Melissa to calm them.  All of these can be taken along with your methimazole or carbimazole. 
      Report
    • Posted

      I was interested to read your reply. I was wondering if you are a nurse, a dr or administrator.

      When I had the same signs and symptoms the clinical lead sent me to the eye clinic the SAME afternoon. The eye clinic examined my eyes and I had a posterior vitreous detachment. I was then asked to go backto the eye clinic the NEXT DAY for review.

      Going to A and E as it is known in Britain with eye conditions is NOT wasting anyone's time. Until one gets ones eyes examined then how can one know what the cause of the signs and symptoms are. In ophthalmology the signs and symptoms can be due to various serious eye conditions requiring urgent attention. It is best to err on the side of caution than to risk an irreversible condition.

      We must look after our vision.

      Are you a nurse or a dr?

      Does your ER dept actually have a seperate eye specialist or ophthalmic department?

      Do you have the necessary equipment to safely carry out weeye exminations? Hope you do not mind my asking.

      o you have a slit amo

      Jean

      Are you a trained nurse or a doctor or an ophthalmic trained nurse?

      I disagree with what you say. Eyes are precious.

      It is no

      Report
  • Posted

    It is quite ridiculius that you have to wait so long for an eye appointment when youhave the signs and symptoms you describe. What provisional diagnosis have you received? who referred you to see an eye specialist? Was it n endocrinologist or your GP?

    I would go to the nearest eye hospital allteratively ring up an optician tomorrow and seek advice, find out the name of an optician/optemerist who is employed by the local CCG to see people the same day as an emergency.

    If you live in the States or elsewhere then there must be an emergency eye service that is the equivlent in your area?

    Report
    • Posted

      Why is it an emergency? It is uncomfortable and unpleasant I agree, but you are not going to lose your sight within 24 hours so it is NOT an emergency! I also suffer from TED, so I understand what it is like with headaches, sore painful itchy eyes and puffy horrible eyelids, but whatever else it is not an emergency. Please will people stop using emergency services to try and get seen quicker. No wonder we all have to wait so long in ED. save emergency services for real emergencies. 
      Report
    • Posted

      They do it differently in Canada.  I got referred to a cardiologist and had cardiac testing when I had cardiac symptoms because waiting 3 months for an appointment might have resulted in death. It is an average 3 month wait to get in to see a specialist and I am sure it is no different in her country.  I also once had a throat problem that was so painful, I could not eat and I could not sleep.  I would have had to wait 3 months to see an ENT doc.   I saw an ENT resident in Emerg who diagnosed my condition and gave me treatment immediately.  My GP did not know what it was.  Thyroid eye disease is a serious issue for some people.  They can lose their sight if they do not get immediate treatment.  Believe me I have seen TED patients at thyroid conferences and it makes me sad because if they had been diagnosed properly immediately, they might have not had their permanent disabilities.  Other patients with thyroid disease have mild eye symptoms such as I did and do not require urgent attention but I would not discourage her from going to an Emerg Dept.
      Report
    • Posted

      I was actually referred to by the gp as endocrinologist at first dismissed the symptoms and told me it would settle with the carbimazole, I have another appointment with endo in 4 weeks, I don't feel the eye symptoms are taken seriously, when I was diagnosed she simply said yes that's graves you have, no explanation of the diease , symptoms, she was not at all helpful
      Report
  • Posted

    I have had the same issues with my eyes, you need to revisit your  thyriod doctor again. He should test you for Graves' disease antibodies. He may need to readjust your medication dose.  Also he should refer you to a eye specialist who works with patients with TED Graves' disease. The good news is your eyes can go  back to normal. Mine did. The pressure is gone and dryness better.  I know it very upsetting but it helps to know it can get better. Good luck. 
    Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up