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Recent confirmed graves

Posted , 7 users are following.

sambaines16
sambaines16

Recently been confirmed with graves and been given the 3 options of medication, radioactive iodine or the surgery. My specialist thinks surgery would be the best option. My condition is hereditary and my dad was also diagnosed at 25. He did have the surgery and his eyes also bulged before this. I've been told this could happen to me but the choice is totally my own. I have a 3 year old son and the thought of leaving him for 16 days is beyond difficult but is it the lesser evil of the surgery or would you recommend surgery?

they don't believe the constant trying to balance the thyroid is anything worthwhile to me so left with the two major options and don't know where to go. Any advice is greatly appreciated

sam x

0 likes, 16 replies

16 Replies

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  • ariadne43
    ariadne43 sambaines16

    Posted

    Hi there, I have opted for surgery as the radiocative idoine could possibly make my sore eyes worse.  For me surgery is the best option as being apart from my kids would be very distressing for me.  My sister-in-law got the rai and said she would choose surgery if she had to make that choice again.  She is now having difficulty with her levels again.  I had made that decision myself. Got my date for surgery today.
    • sambaines16
      sambaines16 ariadne43

      Posted

      Their concern is that because my dad had the eye problems there's every chance I could also inherit it however it is showing no signs yet. I know it's a decision I need to make for myself but I just don't know what direction to go as vain as it sounds I don't really fancy a big scar on my neck although it will eventually heal etc and the thought of someone cutting open my neck, I am also terrified of needles but don't think I can stay away from my son that long at all. Have no idea what direction to go in x
  • emmaj43
    emmaj43 sambaines16

    Posted

    Hi, I got diagnosed with graves in April 2013 and have had a lot of problems, terrible side effects and severe anxiety and high blood pressure, also an endrometrial cyst which was showing raised marker levels - the consultant thinks I have had graves since the birth of my son.  The consultant wanted me to have surgery as I didn't want to have RAI and be away from my son.  I did not want either options - I wanted to see how I was after medication.  I stopped Carbimazole and thyroxine in Sept 2014 and have maintained normal thyroid levels and starting to feel so much better.  The very sore eyes have gone, my strength is returning, I am starting to feel more normal and able to cope each day.  I just hope I continue to improve. I hated the medication.   Obviously if it does come back I will definitely opt for one of them.  My friend had RAI twice and is great now.  I know of lots of people with no thyroid and they do well.  Good luck with your decision, it is very difficult. Xx
    • sambaines16
      sambaines16 emmaj43

      Posted

      Thank you, I an struggling big time I have nothing but trouble with the carbimazole and had to go to put of hrs again at the weekend as I couldn't take a proper deep breath nor can I swallow properly they think I may have a rear goitre or a lump growing down my neck. It's trying to weigh up the pros and cons of each. so difficult x
    • emmaj43
      emmaj43 sambaines16

      Posted

      Have you had a scan to see if you have a goitre? Could it be anxiety?   If you dad had eye problems RAI could make it worse.  My consultant advised surgery - he said it is all dealt with straight away and your thyroid levels are controlled immediately.  How long have you been on the tablets?  My dad also had graves. X
    • sambaines16
      sambaines16 emmaj43

      Posted

      I will be going for the scan in the next few weeks they said. I've only been on the tablets 3 weeks but from 3 days since taking them I have had nothing but trouble. They think I may have the lowered white blood cells and bone marrow issue. I am a walking medical disaster honestly lol. My specialist already said she suggests surgery as the best option I have researched it a little I just feel like I need more info and people in the same boat. My dad passed away a year and a half ago and I've only recently been diagnosed so can't even go to him. He's actually in a medical book somewhere I'd love to find it bit it's nowhere I've tried lol x
    • emmaj43
      emmaj43 sambaines16

      Posted

      Can they not test you to see if your white blood cells are down? I was lucky as I had private medical insurance with work so didn't have to wait as I was a complete hypochondriac- the symptoms and side effects to the medication and graves was just horrendous and extreme - took 6 weeks to start feeling a little better- I can also remember not being able to swallow, but that was anxiety, lack of sleep, rash, high bp and just everything else.  Because of the eye problem I think you need to definitely think surgery,  apparently you really don't have that much of a scar and it is lower down than you imagine, you could wear a necklace, says  me who is also scared of the op!  If it comes back however I will definitely have it removed surgically - really don't like the idea of RAI. X
  • debbie38655
    debbie38655 sambaines16

    Posted

    Hi, I have had the surgery as doctor would not do RAI as I had the eye problems and the RAI does make it worse but I had toxic nodules as well goitre and medication wasnt working. Surgery was the best thing I ever did. felt better immediately but did take a good 6 months to bring levels under control. I have heard of bad things from RAI and sometimes doesnt work 1st time. But it is your choice. The scar is hardly noticable now and I dont even think about it......good luck with everything.
  • julie2510
    julie2510 sambaines16

    Posted

    Hi everyone just been told i have over active thyroid and ive been put on Propylthiouracil 150grms a day.And now ive started putting weight back on and i feel so tired got the consultant tomorrow.And when i swollow and it feels like theres somthing stuck in my throat as this happened to anyone else.And what food is good for you and what food is bad for you when you have a thyroid problem hope someone can help thank you .
    • debbie38655
      debbie38655 julie2510

      Posted

      Hi Julie,

      Have you been diagnosed as Graves Disease?? Apparently the palio diet is the best so lots of meat. i think it is the protien that helps us. but check with doctor. difficulty in swallowing could be a goitre which is a swollen thyroid gland. Again definately check this out with your doctor. Your weight will fluctuate so don't worry about it too much and just get better first....

    • julie2510
      julie2510 debbie38655

      Posted

      Hi Debbie not sure if it graves i guess he will tell me tomorrow.I had a ultra scan about 3 weeks ago and not heard anything so i think i will get to no tomorrow.My eyes are fine when i had the ultra scan i remember him saying that its swollen but my swollowing was alright then.Do you have graves Debbie.Do you take any supplments Debbie xxx
    • sarah78Grave
      sarah78Grave julie2510

      Posted

      Hi julie i suffer with graves. I dont think there is much of a diet to follow as such but chicken is very good.!my weight fluctuates when its over active i lose it and then when i go under active the weight comes back
    • debbie38655
      debbie38655 julie2510

      Posted

      I was diagnosed with graves and have had the total thyroidectomy. I hope you don't have it as it isnt a nice disease with lots of emotional rollercoaster rides. I had no support network at the time and was going thru a messy divorce so not a good time for me. I did speak with a lady who went totally into the natural therapy thing and diet and she said it took her a good 12 months to show results where as I had results after surgery straight away. But mine was more advanced than hers and really wasnt an option for me. I didnt realise I had the eye bulging thing but friends told me they looked strange. But that has settled down now. Calcium is usually something we have to keep an eye on after surgery but just lots of meat and protein but check with your doctor what he suggests.

      Good luck Julie and I have my fingers crossed for you tomorrow that all will be okay. Let me know how you get on....

  • julie2510
    julie2510 sambaines16

    Posted

    Hi everyone just wondering if anyone can help me please.I have been told i have a over active thyroid and ive been give Proplthiouracil i take 150grms a day and ive started putting weight back on now and i dont want to.I sweat like a pig and when i swollow it feels like theres somthing thereI go and see my consultant tomorrow. Can anyone tell me if as happened to anyone else. And does anyone no whats good to eat for thyroid and whats bad for it as well.
  • sarah78Grave
    sarah78Grave sambaines16

    Posted

    Hi i am a suffer of graves disease for the third time round now :-(. I personally would opt for the surgery like you say its less time away from your child. They gave me both options aswell but i am attempting the medication again to see if i can control it. As i dont really want to have surgery ot radio therpy gunna see how i get on. Xx
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