Radioactive Iodine treatment..now it seems I'm going Hypo 😢

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Hi I'm new here. In Nov 14 I had radioactive iodine treatment. My last blood tests were completed in January. They were supposed to be repeated last week but the nurse was off sick now it's the 25.3.15. I have started to feel unwell. Spacey..achey..nails are splitting ...sooooooooo exhausted and my eyes are very sore. I emailed the lovely endocrinologist I was under and he is arranging for me to have my bloods done this week at the hospital. I guess I've joined the forum for support and to tap into knowledge. My last bloods were TSH -1..its been like that since I was hyper due to a toxic nodule..T4 10 can't remember free T3 but it was normal. Is it possible to feel so ill so fast?

I have to go to work and I am concerned about how I will manage. I was initially told I was unlikely to go Hypo after radioactive treatment.

Do all my symptoms sound like Hypothyroidism to those of you that are in the know??

Thanks in advance if you read this post.

Taz. Feeling nothing less than dreadful.

😢😥😬

I

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12 Replies

  • Posted

    Hi Taz Tigs,sounds like you've had enough already.I'm not in the same position,but please try and join Thyroid Problems UK on facebook.It's worth joining facebook just for that,if you're not already on it.Really good group,all thyroid patients,and very supportive and knowledgeable.Wish you well.Gill
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  • Posted

    Hi there, i too had radioiodine treatment about 5 years ago. When the thyroid goes to hypo from hyper, it hit me like a tonne of bricks , exhausted was not the word and the sore eyes is part of that complete exhaustion. Hopefully your bloods will show this and they will stRt you on thyroxine , it will take a while to get your dose tweaked but you will get there and feel much better im sure 😄
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    • Posted

      Hi Thank you for your reply. I just want to.feel better..like everyone I guess. It's so frustrating. I was warned that radioactiveiodine can cause Hypo but I guess I didn't think it would happen so quickly. It sounds like the thyroxine has been successful for for you though? It encourages me not to get to down cast knowing it can work. Thank you 😊
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    • Posted

      Thanks for your encouragement..It means a lot. It's hard..I keep trying to explain to my other half how I'm feeling. He's trying to understand bless him. But I think you have to experience it to really. I said to him imagine having the flu..that's the best description I could find..😆 or think of. I am getting dizzy too..Not out right fainting but off balance and clumsy..dear oh dear.

      Taz

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  • Posted

    Hi Taz Tigs

    I had radioiodine April 2014 for overactive thyroid due to Grave's disease ... I had a dreadful week in May and ended up in A & E with uncontrollable vomiting ... Drs could find nothing but my immune sytem showing I was fighting something... things then really improved and I felt really well, like I had in my 20s, now 48. I was so delighted and had a glorious summer. By Autumn the endocrinologist said I needed replacement thyroxine (Levothyroxine) Ive been on it, increasing the dose from 25mg up to 150mg daily and I feel dreadful. Today has been especially bad: no energy, stiff movements, giddy, heavy head, hey-fever-like nose/face. Weary. Only pleased I didn't have to work today but am working tomorrow so apprehensive about that ... From what you say you do sound hypothyroid and if your endocrinologist is good, try and get an appointment ASAP. I am struggling however as I think the replacement thyroxine may be part of the problem too. If your specialist is prepared to discuss treatment options, see what they are and set-up a plan of action. I keep being told 'it takes time for you to settle' but things seem to have been getting increasingly worse. I haven't yet joined the FB group but plan to. I am sorry you are feeling so awful and wish you luck in getting the Drs to listen and take on board your symptoms. Zoe  

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    • Posted

      Hi Zoe,I'm hypothyroid because my pituitary doesn't work,so also have hypopituitarism.I have same symptoms ad you,which seem to be getting worse too.I'm on 200mcg Levothyroxine,and think that's disagreeing with me in some way,OR I need t3 treatment too.Don't know,and have to wait til June to see new Endo,so not holding my breath for quick improvement,unfortunately.If you google Unacceptable side effects of levothyroxine' , you'll be able to follow that discussion on this site.It certainly made me realise how many people are struggling with levo.Best of luck.Gill
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    • Posted

      Great reply Thank you so much Zoe110. Sorry for you though. I read your symptoms thinking yeah yeah that's me! I'm getting PAIN in my body ..everywhere at various degrees. I think in between the radioactive treatment and now I've had about 3 weeks where I felt somewhat normal. It is so awful isn't it ...horrible having to push through and work? Saving grace tomorrow is that I have training I'm the morning so it's not quite as taxing. I never realised just how ill this could make you feel. I know in the morning I will wake up and just want to stay in bed. There is no easy way forward it seems. It is certainly not as simple as taking a pill is it😬? I'll update you on my blood test results.

      Cheers Taz

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  • Posted

    Hi to all

    It really is great to hear others' experiences, both the positive and the negative. It seems there needs to be greater information given to people before they agree to have radioiodine - i was given no information about becoming hypothyroid, although warned it could occur. I think the thing I'm really strugging with is not being able to determine whether the symptoms stem from the replacement thyroxine or are being caused by my not having enough thyroxine? I have a friend who has had hypothyroidism since her 20s and she doesn't seem to have any of the problems I've been having - tiredness yes but not flu-like, hey fever-like, giddy/dizzy head fog which some days means I just about manage to get dressed and empty the dish washer   .... It really doesn't seem right. I am going to join the FB thyroid problems UK group as Gill and others have suggested and try to muster my energies towards campaigning. I think we need to find a public figure with these problems to help our cause.

    Taz Tigs I hope things do settle down for you as others have found. It does take time and I know I'm not such a patient person when it comes to myself. Let us know how your blood tests go. I've booked to see my GP next week to request more tests and try and talk options.   Best of luck Zoe

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    • Posted

      Hi. Well I managed to get up and go to work. My eyes are very sore. I know what you mean about not knowing if your symptoms are thyroid not been controlled or something else. You might have said but what are your TSh T3 and T 4 levels now? I'd they are normal, (although the more I read the less I'm sure what's normal). Do you think it's possible that you might have something else going on? Hope not though!

      I'll update as soon as results are back.

      Taz

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    • Posted

      I've had to go to bed 8 30. Work has wiped me out. I've got pain all over my body. I didn't really think this was a hypothyroidism. Anyway trying to rest so I can get up tomorrow 😢
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