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Overactive Thyroid Graves Part 4

Posted , 60 users are following.

Kat1807
Kat1807

We all have Graves Disease or overactive thyroid issues, most of us have been through RAI and are now on thyroxine.

10 likes, 1228 replies

1228 Replies

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  • marigold_64
    marigold_64

    Posted

    Hi Carol. Welcome to the forum.I'm sorry you're having so much trouble with your eyes.

    You're not vain at all, you just want to look like you've always done. It's only natural.

    I've had thyroid eye disease for many years and use artificial tears several times a day. I find they help a lot. My Graves flared up again about three years ago and my endo suggested a more permanent solution, either thyroidectomy or RAI. I went for the RAI and I haven't regretted it. I feel fine. My right eye protrudes the most, but it doesn't protrude as much as it did before the RAI. My eyelids are droopy, but I don't think other people notice it as much as I do. My endo referred me to a thyroid eye clinic before I had the RAI to make sure my eyes were stable.They said I could have the loose skin removed from my eyelids, and some tissue removed from behind my right eye. I decided to leave things for the moment as I don't think my eyes look too bad, and there's definite improvement, but I can go back if I change my mind. My eyes are sensitive to light.

    Marigold

  • Ladykinkavel
    Ladykinkavel

    Posted

    Hi everyone needs some help here so confused.... I was diagnosed with hyperthyroidism and graves disease for a little under 3 years, I have never been stable and level all over the place. Symptoms are very up and down I can go through weeks of being stuck in bed. I was under consultant care from early on as ended up in hospital very ill. Well I've been on carbimazole no higher than 20mg every other day. I was on propranolol but been off that a while. My consultant has advised me to have RAI. I got a second opinion this week. Blood test shown antibodies extremely high. She has put me on 40mg carbimazole and then couple days later I have to start 100mg levothyroxine. She also said rai wouldn't work as graves is too active. Anyone give any advice? ???? Very confused :-(
  • linda187
    linda187

    Posted

    For me, I found that adding L-carnitine to the Tapazole I was taking was what helped pushed my disease into remission and this was reflected in my blood tests. I no longer have antibodies. Though I started on regular L-carnitine, I found acetyl-L-carnitine to be more effective in normalizing my TSH levels.

    I asked my doctor to check my blood carnitine levels before I took it and I was deficient in carnitine.

    If you have both Graves and Hashimoto's, I don't know how carnitine will affect you but I have Graves only and it really really helped.

  • paige48223
    paige48223

    Posted

    Hello everyone, I'm new to this.

    I'm 19 and was diagnosed with overactive thyroid October 2012 and been on carbimazol up and down!!! Currently on 40mg and recently been given two sets of eye drops as my eyes have constantly been streaming/watering. I have my on and off days, generally feeling better than I have done. Mostly tired, blurry vision, palpitations, but recently my hair gets so greasy and my scalp has been so itchy,dry and spot like blisters. Does anyone else have this problem and could recommend shampoo they use, I have used so many as none seem to work. And it's driving me mad....

    Paige x

  • stefania3
    stefania3

    Posted

    Hello Paige, sorry to hear about all your problems. I don't actually have greasy hair, but I use plain old Johnsons baby shampoo - if it's good enough for babies, it's good enough for me. Wish my eyes were a bit watery: mine get so dry that I literally nearly have to peel off the lids from the eyeballs in the morning - very painful! Had plugs put into the tearducts but had to have one removed as that tearduct was a different shape!! Hope you'll be feeling better soon!

    Stefania

  • paige48223
    paige48223

    Posted

    Hi Stefania, that's really strange about yours eyes. Sometimes my eyes feel dry,but my right eye is forever watering so that's why I've got the eye drops. I will have to try that then. I used to be able to wash my hair like every other day or every two days, but I having to wash it everyday! I'll wash it when I come home from work at 7- the next morning it looks really greasy again. I've used so any products. I went to the doctors last May for my scalp having blisters and sore- they gave me some cream which didn't really work but when I went on holiday it seemed to clear up. But it keeps coming back,so frustrating .

    Paige x

  • marigold_64
    marigold_64

    Posted

    Hi Paige. Sorry you're having problems with your hair and scalp. When I was hyper my hair felt nothing like hair, more like cotton wool.Although it may be tempting to use a shampoo for greasy hair I think in the long term they stimulate production of oils. I find a mild shampoo works much better. I use Timotei Shampoo and Conditioner and my hair's better than it has been for a long time.I wash my hair every day, but I always have done. I hope you feel better soon.

    Hi Stefania. I hope you get your tearduct plugs sorted. An ophthalmologist told me that I had the smallest tearducts he'd ever seen. Have you noticed an improvement in the eye that still has the plug?

    Marigold.x

  • stefania3
    stefania3

    Posted

    Hello Marigold, there is a very slight improvement in the morning. But my eyes still get very sore and bloodshot, regardsless if I'm at the computer, reading or knitting. Am thinking of trying out some eye drops from the health shop next.

    x Stefania

  • paige48223
    paige48223

    Posted

    Thank you marigold I will take a look and try it out. Stefania I have two sets of eye drops you can get from the chemist that work for me...lactic-lube at night and viscotears twice a day. Obviously check you can use them, but I've found them beneficial

    Paige x

  • barry-p
    barry-p

    Posted

    Hello everyone hope you are all doing ok and in good health,

    Dont get on much these days but try to keep a check on how everyone is.

    Marigold,bess,elaine,dave etc how have yous been ?

    Just got my latest blood results back and was quite surprised.

    My TSH has gone from 5.2 to 3.2 since january and ft4 is 17.8.

    Quite surprised because im on 50 mcg of thyroxine and ever since RAI 4 years ago my levels have beem degenerating.

    Doctor said its fine as they can fluctuate but its still worrying incase the thyroid is fighting back..

    Has this happened to anyone else after RAI ?

  • marigold_64
    marigold_64

    Posted

    Hi Barry,

    Good to hear from you.My endo said it was normal for the levels to fluctuate.I'm on 50 mcg too, which is a low dose so our thyroids must still be producing some thyroxine.

    When I had my bloods checked last April (I hadn't had them checked for a year) my TSH was 5.31 and my T4 was 15.I feel better when my T4 is higher than that so my GP suggested I took 50 and 75 mcgs on alternate days.By June my TSH was 3.2 and my T4 had gone up to 20.I didn't want it to go any higher so I went back to 50 mgs daily and by July my TSH was 3.75 and T4 18.I haven't had my bloods checked since then, but I feel fine and my weight is steady. My endo said that the TSH level wasn't that important when you'd had RAI.

    Everyone is very quiet at the moment, so I suppose that's a good sign. smile

    Keep in touch.

    Marigold

  • Bess
    Bess

    Posted

    Hello all, Marigold and Barry, the bad penny is back ! Havent been on here for ages, so much has been going on. I'm finally moving back home, near my daughter and I found a place and sold my house in 10 days so its been manic ! Hope to move in a few weeks. I've been worried in case all the stress started off my thyroid again, am trying to keep calm. The old heart is coping but I hate the beta blockers, walking is like driving the car with the handbrake on. Still, at least I'm still here.

    Barry, its unsettling when levels fluctuate, I suppose you could have another test fairly soon to see how things are going? If you are feeling ok, I suppose that will be a good guide, all the best.

    Marigold, how are you ? Are you still getting migraine auras, I think you were having a bad time with them a while ago? Anyone heard from Sue or Kat and all the other lovely lot ? Hope everyone's ok.

    Commiserations to all on here going through a rough time, it always seems to go on forever but it does eventually get better.

    Take care all,

    Bess xx

    • marigold_64
      marigold_64 Bess

      Posted

      Hello Bess.   How lovely to hear from you.   I hope everything goes well with your move.   Try and keep calm, moving house is a very stressful time.   We were going to move a few months ago, found a buyer in two days, everything going well and then they started messing us about.  We thought things over and decided to stay where we are.  We'll have to move at some point in the future as the garden is very big, but there's still some life in us so we should be able to manage it for a few years yet.  smile   It'll be lovely for you to be near your daughter.

      Are you feeling ok apart from the betablockers?    I still get the migraine auras.    I can go for weeks and then I get several a day for a few days and then they stop.   I've come to the conclusion that they're stress related.    If I worry about something it sets them off.  You wouldn't believe the silly things I worry about.rolleyes  My GP has said I can go on betablockers which should stop them, but I'll see how I go.

      I don't like taking drugs unless it's absolutely necessary.

      It's very quiet on here so come on Sue, Kat, Deb and everyone.  Let us know you're ok.  Thinking of everyone.

      Keep in touch Bess.

      Marigold

      xxx

       

    • Bess
      Bess marigold_64

      Posted

      Hello Marigold, lovely to get your reply. There seems to be a change of format on here. I had to search for my post and then saw there was a reply from you which I hadnt been notified about. Perhaps its me getting it wrong but it was useful to get an email when there were replies. I'm sorry you are still getting the migraine auras, horrible things. I have to admit that since being on this particular beta blocker (bisoprolol), I have had any auras (about a year now, the longest I have gone). That's done it, bet it comes back now ! When I was in hospital last year I was told my thyroid was now a bit underactive, but they didnt want to treat it because of possibly raising my heart rate when they werent sure what was going on. Perhaps thats why the auras stopped. I would rather be a bit under than overactive. The anxiety and palps with being over is truly awful. I am on a high dose of betablockers so dont let that put you off. Am due for a medication review soon, not sure whether to ask for a reduction in dose or wait until the house goes through ! I'm glad you are settled where you are for now, you can move when you are ready. What a pair of worriers we are! I hope Sue is ok, I wonder if she is having more holiday adventures, I miss seeing here posts. Have a good Easter everyone and hope all feeling better soon.

      Bess xx

    • Bess
      Bess marigold_64

      Posted

      oh, found out why I'm not getting notifications, the box needs ticking again. My fault.
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