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Just diagnosed with Graves Disease, feeling alone and scared

Posted , 13 users are following.

claire64756
claire64756

I was diagnosed with GD yesterday after being referred to a specialist after strange blood test results by my GP.  The specialist has put me on 

40mg of Carbimazole for six weeks and then I have to go onto Thyroxine too and get checked again.  I am feeling so low, panicky and worried about the condition, the treatment and what my future will be.  The internet is full of horror stories but I need a bit of hope...  Any encouraging stories please because at the moment I cant stop crying.

2 likes, 31 replies

31 Replies

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  • christine57219
    christine57219 claire64756

    Posted

    Hi Claire, I was diagnosed with Graves in 2013 when I was put on 40 mg Carmimazole for a couple of months.  The Carbimazole WILL help you to stop feeling so panicky and anxious, takes a few weeks to kick in.  After a couple of months I was put on Levothyroxine too, it's called Block & Replace here in the UK.  It may take a while to get the levels of the medications "good" for you so that you begin to feel more like your old self and then hopefully after 12/18 months when meds are stopped, you will go into "remission" - didn't work for me the first time and my specialist is pushing for me to have RAI BUT I am digging my heels in and having another shot at Block & Replace or the titration method (slowing reducing the meds).  I see my specialist again on 30th December so will decide then on the way forward.  I am forever hopeful and there are many knowledgeable people on this forum and others who will help you - they know more on here than the specialists !!  Meanwhile you have to be monitored carefully i.e. blood tests SHOULD be done every 6 weeks (mine were not) and meds adjusted accordingly depending on the way YOU FEEL and NOT based soley on your blood results being "within range".  Someone else with more knowledge on that will, I am sure, explain that in more detail.  Ask for copies/print outs of all of your blood test results and post them on here for advice.  Try and educate yourself on this horrendous disease, it's taking me sometime to do that but there's plenty of help here.  Chin up, there are so many of us in the same boat and there are many success stories and I'm hoping to be included in that and hope you are too !  wink

    Christine

    Christine

    • claire64756
      claire64756 christine57219

      Posted

      Thank you Christine, I have a great Endo who I am sure will get me well again.  Already booked in to see him again with bloods in 6 weeks time.  Do you take the Carbimazold as one dose or do you spread it out.  I am aneamic too because of Gynae issues but Endo has told me to carry on with iron supplements and not to have any surgery until I get the tyroid level.
    • christine57219
      christine57219 claire64756

      Posted

      Hi Claire I take the Carbimazole as one dose in the mornings, most patients do unless advised by their Endo or GP to do otherwise.  I've just started taking vitamins as recommended by many Graves sufferers so I'm taking a Vitamin B complex, Vitamin C, Zinc and L-Carnite apparently helps to reduce the level of anti bodies.  Also avoid stress (if at all possible).  Stress is certainly a trigger for my hyper symptoms to flare up.  Sleep when you need it - in other words be kind to yourself and listen to your body AND mind, pushing yourself to do things because you feel lazy if you don't do them only makes it worse !!
  • Alberta23
    Alberta23 claire64756

    Posted

    Hello Claire,

    I was in the same dark place as you some years ago couldnt understand what was happening to me I too was put on caramozole and it didnt work, I did not have the usual lump in my throat or the protuding eyes although my eyelids stuck to my eyes at times and the palutations were awlful I thought my heart was trying to escape. I also got very hot and itchy rash and went down to 5stone 7lbs. After a couple of months I had radio active iodine which has worked a treat I still have to take throxine every day and have put on more weight than I would like. I used to cry for no reason possible because I could no longer rush about and do all the things I was used to. I had to retire at 50 and take early pension. I am now in my 70s and have been well for the last 20 years so there is light at the end of the tunnel.    Family and friends try to help but cant understand what you are going through.  The worse thing was having to spend three weeks apart from my family and pet dog until the radiation worse off.  If posible take someone with you when you see the specialist because I couldnt always understand or take in what they were telling me.   regards  Jacky      

  • claire64756
    claire64756

    Posted

    Thanks everyone for your advice and support, it is really good to know that there is a place to go to ask fellow sufferers.
  • Alberta23
    Alberta23 claire64756

    Posted

    Hello Claire Hope all is now going well for you I developed Graves when I was in my forties it is frightening and you wonder what you did to deserve feeling so ill. I am now in my 73rd year  I did have to have radio active iodine treatment and have been on Thyrozine ever since. I was working as a BT technician when I developed Graves and went down to 5 stone what is strange my husband and grown up children didnt seem to notice although I was shaking and had a very fast heart beat so could not lay flat at night. It was a friend who hadnt seen me for some time made me see a doctor. Like you I was crying all the time I cant understand why I hadnt realised what was wrong as my mum had suffered from Graves after having my brother years earlier.  It is only recently I have been diagonsoed with Copd so there is light at the end of the tunnel. I would suggest you take someone with you to your doctors appointments as you cant always take in what they are telling you write down any questions before you go. regards Jacky   
  • marchcrown
    marchcrown claire64756

    Posted

    Hi how are you doing now? I just got diagnosed today and I'm very scared too. I don't want surgery or radiation. I need hope. I want to live a normal life. I also stopped watching scary testimonies because we are all different.

    • linda187
      linda187 marchcrown

      Posted

      Get a copy of your lab tests and post them to this Board.  Always keep your own file on your lab tests so you can see  your progress.  There is a lot you can do to feel better.  I was diagnosed in 2007 and currently my Graves antibodies are not detectable, all my thyroid labs are normal and I am taking 2.5 mg of Methimazole 3 times a week.  My doc said I could stop the Methimazole if I want to but I found that slight decreases work better than abrupt stopping or big decreases.  I will get lab tests done again in 6 week's time.

    • marchcrown
      marchcrown linda187

      Posted

      Thank you so much Linda! Your post gives me hope for the future. I didn't know I could post my lab tests here. That is such a great idea. Good luck with your blood work.

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