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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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  • linda187
    linda187 Kat1807

    Posted

    Hi.  I have Graves but have not had RAI or surgery.  Just on methimazole.  My results now are okay

    TSH 2.18  (range 0.40 to 3.80)

    T3    5.0     (range 4.0 to 6.8)

    T4    13      (range 12 to 21)

    I was on Carnitine supplements but discontinued them two weeks ago as I want my TSH to be in the 1's and T4 to be in middle of range.  On methimazole 2.5 mg. 

    I have been concerned though because I have been having palpitations.  They were bad last night.  I have a Cardiology appointment next Wednesday. 24 hour Holter monitor was normal.  If I take a half of a 10 mg Propranolol tablet I am fine but without that my systolic blood pressures are very high up to 161.  My diastolic pressures are good in the 70's.   My antibodies have gone!  I post on a Facebook Graves site and this girl is trying to tell me my results are not good, that my TSH should not be over 1 and my T4 is too low, that I am hypo.  I don't feel hypo, especially not with the palpitations.  As long as they are in range and I don't feel hypo I am okay with where they are at.  Medication adjustments should make a difference for next blood tests.  Scared about the palpitations though because we have a lot of heart disease in my family.  Saw a new Naturopath today and am going to embark on a new program to get rid of metabolic syndrome and all that does with it.  Diet and supplements are supposed to be the way to do this.

     

  • joy87504
    joy87504 Kat1807

    Posted

    Hi Kat and all, I`m a bit late in coming to this discussion but found you all by chance while researching RAI. I was diagnosed with Graves 4 months ago, I`ve had my eyes checked and they`re ok, so now my endo has suggested RAI. Trouble is everywhere I look, people are advising against having it!!  

     I`m 63 and haven`t had a good result with carbimazole. I am better than I was but far from well yet, and basically would like my life back. I`ve had other health issues in the past and feel I don`t want to hang about feeling ill anymore.

    When I saw my endo this week, I barely said a word as she began discussing RAI and I was thrown to be honest. I had the idea she`d keep me on carbimazole for longer. But saying that I was pleased and relieved that `something` was getting done. I suppose I`m looking for reassurance and reading through your many posts have already done that - and thank you!

    I signed the consent form and was told I`d have the treatment in about 6 weeks time- to stop the carbimazole 5 days before and restart it 5 days after. With a blood test 6 weeks after the treatment to see what happens med wise next. Any advice from you all would be really helpful. 

    thanks again

    Joy x

    • marigold_64
      marigold_64 joy87504

      Posted

      Hi Joy.  Welcome to the forum.smile   I had RAI four years ago when I was 63, and I can honestly say I haven't regretted it for a minute.   I certainly wasn't pushed into it, in fact I was pushing to have it done.   I didn't want to faff about.  Without sounding morbid I felt that I wanted to feel well for the rest of the time I had left.    (That does sound morbid).

      I started with Graves in my twenties, had a course of Carbimazole and I was fine until four years ago when it flared up.    The endo said as it had flared up once it would probably flare up again and I needed something more permanent so I went for the RAI.     He said I couldn't stay on Carbimazole indefinitely anyway.    

      I was on block and replace before the RAI, and had to stop the Carbimazole and Thyroxine a week before the treatment, and I had to have my bloods checked two weeks after the RAI.  I was also on a low dose of steroids for a month as I have eye problems.   I did have to go back on block and replace for a few weeks after the RAI as it didn't appear to have worked, but when I stopped the block and replace again I was fine.    It took a while to find the right dose of Thyroxine for me, but since then I've felt really well.

      I hope everything goes well for you.   Please keep in touch.  If there's anything we can help with just ask.smile

       

    • AgW
      AgW joy87504

      Posted

      I had RAI over 2 years ago, at age 70. It took a few months to get the dose of thyroxine right but I have now been stable since. I chose RAI as I wanted to get off PTU as soon as possible (I was allergic to carbimazole). I haven't regretted it at all, just have to remember to take my thyroxine every day which I do as soon as I wake up. 

      Good luck

      AgW

    • stefania3
      stefania3 marigold_64

      Posted

      Hello Marigold, that's one of the things I'd hesitate about with RAI: the eyes.  I have been told if one has thyroid eye, RAI could make it worse.  And I'm not keen on taking steroids either.  I'm still on block and replace for the second time until the end of March.  Then I'll have to see.

      Take care,  Stefania

    • alice_in_wonderland
      alice_in_wonderland stefania3

      Posted

       hi AgW I  had RAI the same time as you 2 years ago and I have never regretted it.I take 100 mcg every day and have been really well ever since.Like you I would encourage anyone to do it as it is wonderful that we can do so as I went through 1 1/2 years of feeling unwell before I was offered it.So if anyone is offered it take it as it gave me a new lease of life.By the way I am now 76 and I thought I would never make that I was so poorly.It is such a simple procedure. Alice in Wonderland
    • Bess
      Bess marigold_64

      Posted

      Hello All, Marigold, Sue, Kat, Maria, its so lovely when I find your posts but I'm having trouble when I try to get on here, not sure why, it used to be so easy. Marigold, how did the kitchen turn out, are you pleased with it? I hope you are eating better and not losing any more weight. This anxiety thing is awful, if we lived nearer we could have nighttime tea and chats ! I hope the propanolol has helped. Has it stopped the migraine aura? I didnt get any for about 18 months then a couple of months ago it came back. Only isolated ones, not clusters like I used to get but I still hate them. They always seem to arrive when I feel under pressure or are really anxious. I havent had my bloods done for nearly a year, the last time I was underactive but the cardiologist didnt want to treat it, just leave well alone in case it put my heart rate up. I dont really have any symptoms so that suits me !

      Sue, so sorry you have had such a difficult time, how are things going now? Dementia is a heartbreaking thing to have to deal with. Sounds like your lovely family are a great support.

      Hope Maria, Kat, Barry and everyone ok, will get off now before this flaming computer gives up on me altogether or I throw it out of the window.Hope all new posters are coping ok, let us know how you get on Bess xxx.

    • marigold_64
      marigold_64 Bess

      Posted

      Hello Bess.    Lovely to hear from you.  The kitchen turned out well, we're delighted with it.   It was a bit of a nightmare getting it done, washing up in a bowl in the bath, but we got there in the end.  Hubby says never again, but he often says that.  lol     It did feel like I was in the wrong house for a while, but once we got our bits and bobs round us it felt like home.

      I'm eating better, but I haven't put any weight back on.  I lose weight very easily, and don't put it back on easily.  Yes, we could have midnight feasts and chats.  Wouldn't it be fun?   My GP said to take the Propranolol as and when up to three a day, but I try just to take one when I go to bed.  It helps to stop things going round in my head.    You know what I mean, going over conversations and hoping I haven't said the wrong thing to someone.   I thought the migraine auras were caused by stress, but I didn't have one when we were getting the kitchen done.   I've only had two auras since I started on the Propranolol, both on the same day.    I wish I knew what causes them.    I'm pleased you're only have isolated ones.   When they come in clusters they wear you out.

      I have my blood checked once a year, the last time was in June and the results were almost identical to last year.

      I hope you've settled well in your new home.  Did you have to do a lot of work, or was it how you wanted it?   Take care.

      Thinking of everyone.

      love,

      Marigold

      xxx

  • joy87504
    joy87504 Kat1807

    Posted

    Hello again and thanks for welcoming me. I`m so pleased that I found you all as already I feel much better about having the radioiodine treatment. I have to wait for the appointment to come through but they said within the next 6 weeks. 

    Could you tell me what happens on the day please? Do I just turn up, take the pill/drink and come home, or do they keep you there for a while to see if everythings ok? Do they give us all a standard dose??

    I`m aware that I need to keep away from pregnant ladies and children - and as there`s just my husband and me at home, that shouldn`t be a problem.

    thanks again

    Joy x

    • marigold_64
      marigold_64 joy87504

      Posted

      Hi Joy.    Where I had my RAI everyone has the same dose.     They said they'd tried giving different doses to different people, but it didn't make any difference to the results.    I think it varies from place to place.

      The doctor who gave me the capsule explained all about it and asked if there was anything I wanted to know.  Our granddaughter was 18 months at the time, and he said I could pick her up and give her a kiss, but I shouldn't sit her on my knee for any length of time.    He said it was ok to go shopping as I wouldn't be close enough to anyone for long enough to hurt them.   Then when I'd swallowed the capsule I had to sit in the waiting room for half and hour before I went home.    I could have a cup of tea when I got home, but nothing to eat for about three hours.    There's nothing to it really.    I thought  'is that it'? lol

      I'm sure you'll be fine.

      Marigoldxx

       

    • joy87504
      joy87504 marigold_64

      Posted

      Thanks Marigold, I`m glad I wont have to stay in the hospital longer than half an hour. I`m looking forward to getting it done and out of the way now, I don`t want to faff about either lol.

      My husband recently retired and then I was diagnosed with this, we want to get on with life!!!

      Its good to know that I`ll be able to do things like shopping, I`ll miss the grandchildren but hey ho...needs must.

      Thanks again and I`m pleased to see that you`re doing well now.

      Joy  x

       

       

    • joy87504
      joy87504 marigold_64

      Posted

      Hi Marigold and everyone

      I`ve had my appointment for RAI come through for 9th October.  Not too long to wait. I`ll be glad to get it over and done with now and looking forward to getting well again. 

      Joy xx

    • davids76
      davids76 joy87504

      Posted

      Good news.

      Don't go worrying too much about it though will you cheesygrin

    • marigold_64
      marigold_64 davids76

      Posted

      Hi David.    Are you feeling any better?   I think it's hard not to worry when you have Graves.  It's just one of the many symptoms.

      Marigold

    • marigold_64
      marigold_64 joy87504

      Posted

      Hi Joy,

      That's good news.  You don't have long to wait.  Try not to worry about it.  Once it's done and you get on the right dose of thyroxine you'll soon start to feel better.     Keep in touch and let us know how you get on.

      Marigold xx

    • joy87504
      joy87504 marigold_64

      Posted

      Thanks Marigold and David, I`ll be glad to get it done now and move onto the next step of getting well again. 

      I am a bit nervous but as you say Marigold, that is part of Graves. 

      I`ll keep you posted.

      How are you feeling Dave? Hope you get something sorted soon too.

      Joy x

    • davids76
      davids76 marigold_64

      Posted

      Hi

      Fatigued. Back to work tomorrow, for 6.5 hours then two days off - two and a half really as finish at 1.30.

      I've noted my anxiety levels are much worse and even a panic attack or two - bizarre how they have come on.

      How are you?

    • davids76
      davids76 joy87504

      Posted

      Hi

      Yes, please keep us all updated biggrin

      I'm tired but up for work tomorrow. 6.5 hours and then 2.5 days off. Rested all weekend and today.

    • marigold_64
      marigold_64 davids76

      Posted

      Hi David.   I hope work isn't too tiring tomorrow. 

      I think an advent calendar type thingy would be good for Joy, but what would be behind all the little doors?    Probably pills instead of chocolates.lol

    • davids76
      davids76 marigold_64

      Posted

      Hi marigold.

      It wasn't too bad, but it was just one day. Now two days off. Friday through Sunday will be my big test.

      Thurs I have Endo.

      Yes, probably pills - Carbimazole behind some, Propanalol behind some and appointments behind others crylol

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