RAI due in 3 weeks....anxiety level a sky high! Positive stories....please!

Hi all :)

I am a very new newbie!

I am 27, when I found out I was pregnant for the 2nd time, I later that day discovered my footrest and constant heart palpitations.

I was diagnosed with graves disease and had the 18 months run of carbimazole and propanalol inbetween. After coming off the pills I went into remission for all of 4 months! I am currently back on carbimazole, and booked in for RAI in 3 weeks!! I have been driving myself insane with Google horror stories! The whole process makes me very anxious!

I would like to try for another baby as soon as I het the all clear after the RAI, which I have been told is 1 year before Ttc.

I am a pretty well informed patient with tremendous self discipline (I am also a very well controlled type 1 diabetic).

Anyone have a positive atory post RAI you could share for a nervous girl?

Thanks so much.

22 Replies

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  • Sorry phone typo - I discovered my goitre when pregnant.

  • Hi Tlee, Like bantam I had a positive experience & for me it was the right thing to do. I had it end of September 2013 & went underactive in the December. I have read people saying they don't want to take medication for the rest of their life but I don't have a problem taking 2 tiny tablets every day as for me that is nothing compared to having the symptoms of being overactive. The only side effect I had was a metallic taste for a day or two. I found the hardest thing not having close contact with family & friends, also not being able to go shopping as the person serving you could be pregnant. Good luck.

  • Hi Dusty,

    Thanks for your response. Lovely to hear of your positive experience!

    Yes, for me, being a type 1 diabetic - I have to take insulin for the rest of my life, so I am definitely not intimidated by having to take the tablets daily when hypothyroid.

    I am not sure of your age,Did you by any chance have kids afterwards?

    And your eyes? Did they worsen after?

    I have very mild TED, was at the ophthalmologist 2 months ago, and they say my eyes are beautiful for a diebetic (I am very well controlled) - 100% perfect, so at least that is good, I am expecting that my eyes will worsen when the thyroid is gone, as long as my vision is good :)

    Thanks again for your response Dusty!

  • Hi Dusty, I wanted to ask you, what was your experience with the weight gain like?

    I, of course, expect to gain back the weight lost, but did you gain a tremendous amount?

    As you hear of 20-40kgs!

    I am a very disciplined eater and like to exercise.

    Was just curious to hear your experience, as you never complained about it :)

  • Hi Tlee, I had lost about 20lbs when I was overactive & put on 7lbs approximately 6 weeks after RAI. I was in USA on holiday at the time so I was eating more than usual. I have been on 125 Levothyroxine for 18 months & my weight has been stable since I was upped to 125 & now weigh less than I did before being overactive. I started on 50 & had my blood taken every 4 weeks & Levothyroxine was increased according to blood test results.

    You asked if I had children after RAI, no I didn't so don't really know about pregnancy after it.

    I Also have mild TED in 1 eye & had op for ptosis on other eye prior to RAI. I have regular eye appointments at hospital just to check no changes to my eye.

    I hope you can also have a positive experience with RAI, good luck.

  • I had RAI 15 odd years ago and it was the best decision ever, so much easier to manage being hypo. You will no doubt get negative comments on here but you must do what is right for you, ignore the scare stories and go for it.

    I had no side effects at all, I went hypo within 4 weeks but apart from being a bit more tired wasn't aware of any other symptoms, started on Levo and never looked back. I had Graves on and off from about the age of 12, last relapse in my 40's was the last straw and I asked for RAI, wish I had done it earlier.

    Good luck, hope it goes well for you.

  • Hi Bantam,

    Thanks so much. Yes, as everyone else has said, there are alot of horror stories and not much backing for RAI, but I believe I am mentally strong enough to ensure what I have to, to get my body good again!

    Wow, you had graves for a very long time!! Glad to hear all is good with you now,

    I also miss exercise so much now :( I currently take propanalol 30 - 40g daily and feel very restless with the loss of activity due to the heartrate!

    I think I am dreading the fatigue and possible depression the most when becoming hypothyroid - I will have my blood drawn every 4 weeks so they can catch it quickly, but still about concerning!

    So great to hear your story Bantam :)

  • Hi

    Just wanted to say good luck with the RAI.

    I too didn't stay in remission for long and have now opted for surgery after looking at my situation and long discussion with Endo & family .

    You have done what is best for you so ignore negative comments if you get them. Everyone is different and what is right for you is not always right for another.

    So I hope it goes very well and all the best to you.

    Snow

    X

  • Thanks Snow, your message made me smile :)

    Hope the surgery goes/went well!!

    I am remaining positive, as I have a little girl that I have to be here for, and I want to try and push a positive frame of mind for as long as I can!!

    Please let me know how you doing after surgery x

  • Thanks my surgery is booked for 12th January :/.

    Yes we have to consider our family as well going through this.

    Hope you have lots of support from them.

    Your doing what's right for you so be strong and proud.

    Keep in touch and we are here for you

    X

  • Thanks!

    My RAI is booked for the 21st, I will be thinking of you the 12th!

    I am sure everything will go well, including recovery time.

  • Personally, i would look into natural treatment for reversing this. I am for my hashi's..sorry.

  • I did the natural alternatives for over a year.. unfortunately I got sicker ...good luck ..

  • Hi Faith, thanks.

    When you say you are for your Hashi's....do you mean you are content with your hypo thyroid ?

    All the best :)

  • Hello, I just wanted to say I have had radioactive iodine treatment and I am so glad I did. Perhaps naively I didn't even look it up, my endocrinologist said I needed it and I assumed he knew best as he had years of experience and is a very well respected consultant. I had never known anyone with thyroid problems and had never looked on any of these forums at the time.

    I was extremely unwell when I got diagnosed, not through the fault of the GP, I didn't go and see them, I had symptoms for a long time and managed to explain them away, it was only when my heart started beating so fast I could constantly hear it in my head, I couldn't climb more than a few steps without becoming very breathless, I was constantly dizzy, I spent weeks just laying still. I stupidly ignored the diarrhoea I had a few times a day, the constant hunger (I got up during the night to eat), I hardly slept, the anxiety, tremors, sweating and everything else I was experiencing.

    When my own heart beat was driving me mad I saw GP and within 2 weeks saw an endocrinologist, who was worried about me going into thyroid storm. For almost 3 years I took carbimazole which they tried to reduce unsuccessfully. I was offered radioactive iodine or a thyroidectomy. My endocrinologist believed the radioactive iodine would suit me the best. Really I would have done anything to get better, everyday I felt like I was going to die. Obviously it wasn't fun having it, especially having to stay away from my children who were small at the time. It didn't make me feel any worse but it was hard keeping my distance from people.

    That was 6 years ago now ( I was 30) and I am so glad I did it, it changed my life. I went very underactive fairly quickly and as many people on here will agree there were some not very pleasant symptoms that come with that. It's taken a lot of experimenting with my levothyroxine dosage, diet and lifestyle to get where I am now, I never feel quite right but personally I have managed to cope with that far better than before the iodine.

    I could not have coped like that long term, everything was a struggle, the extreme palpitations made me afraid to leave the house for a while.

    Also I had Graves' disease which I know some people would say should be a contra indication to have RAI treatment but I am glad I wasn't very informed about the whole thing, if I had known more it might have worried me. Everyone reacts differently to different treatments and peoples opinions differ, all I know is that it was the right treatment for me.

    I was unable to have more children but I am quite sure this is caused by the endometriosis that I also have. I have a good friend that also ended up having RAI and she has just had her first baby and says the consultants and midwives were excellent at keeping her thyroid levels stable.

    I hope all goes well for you, try not to be nervous, think of it as taking a positive step towards a healthy future.

    Xx

  • Hi Betty,

    What a great message, wonderful to hear, and that you are doing so well years down the line!

    I am also dealt with professors of the endocrine section at my hospital. They say it is best, and considering how well they looked after me when I was pregnant with diabetes, I have to have some belief in them as well.

    Yes, I also have graves (grrrr!) The racing heart was my 1st indicator as well.

    Did you have any problems with your eyes after RAI? I expect a worsening, as they say it is to be expected.

    I also expect to gain weight..I dont mind gaining weight back. However, I am very concerned about packing on the pounds with no end in sight!! As some people say they have struggled with that.

    I take everything in my stride and I expect struggles with the descent into hypo state, but I believe my body cannot stay in the state it is in now, which is quite obvious.

    Also the fatigue and possible depression - I am mentally very strong and have never struggled with that, but we will see how it goes :)

    Wow, the Graves and RAI ablation is actually quite a common occurrence as so many people know of people who have had it! Makes you feel better!

    xxx

  • I am glad you have been looked after well with your diabetes. I feel it can be good to investigate for yourself but unlike a GP the endocrinologists are very experienced and understanding. Mine had 40 years experience, he had retired a couple of years ago but was missed so much he ended up coming back part time.

    I have been very fortunate with my eyes, I don't know how I have managed to get away with it but the only eye problems I have had since are sensitive watery eyes.

    I did have the weight gain but honestly i just didn't let it bother me. I gained about 20lbs and quite quickly. When I was overactive I ate everything in sight, I craved carbohydrates and sugar which was very unlike me and should have been one of the warnings of problems. I am vegetarian and usually eat very healthily so after the RAI I just ate as healthy as possible, even though I was gaining weight I knew I was being healthy so I just got on with it. After about 18 months my weight settled, I found a good balance with my medication. I then lost the extra weight through excerise, it took about 6 months and I didn't put it back on. I have never been on a diet, I don't agree with them. I suppose over all I am a bit bigger than I was but I was overactive for a long time and like you say that is not a state you can live in long term.

    Now I am nearly 5ft 8" and a size 12- 14 which I think is just a normal size, it's different for everyone but weight is one thing I don't worry about too much as long as I feel okay.

    I have never had depression although when I was first hyper the GP thought it might be the case as I was so unwell I couldn't cope but it was just that I was very unwell, once I had treatment with endocrinologist I was okay.

    I have had extreme fatigue on and off but I am not sure this is just down to my thyroid problems. As I said I also have endometriosis and one of the symptoms of that is fatigue so it may be a combination of both. Aren't I lucky?!

    Sometimes it's lasts a few weeks and can be like I have been hit by a ton of bricks and other times I loads of energy.

    I am sure you will be fine, you sound like a positive person. I am quite positive, sometimes annoyingly so! But I don't like to dwell on things too much, if I feel rubbish I let myself for a few days and then I just think worse things happen at sea. I might adjust my meds but overall I am a happy person and feel lucky to live my life.

  • Hi Tlee

    Im so glad you have posted on here and reading peoples replies I have had under active Thyroid for about 24 years and on the whole been fine a couple of months ago my GP took me off and said my blood results were to high six weeks after I started to feel really tired pains in my legs and I can only describe it as feeling confused I have worked full time in a stressful job for 20 years and never been late once the last couple of weeks I have been late 3 times where I have been so tired I went back to my GP who was really unhelpful and said he was not putting me back on I asked to see an endo and he told me it was a three month wait I felt so ill I could not wait that long so paid private he has told me I have now gone hyper I thought that meant I would have more energy. He has put me on 10 Carbimazole and recommended I have RAI in February he told me I would go back to being hypo and be on tablets for the rest of my life which I thought I would be anyway so that's not a problem but reading things on hear I want to know what can happen to your eyes nobody has mentioned that to me and I know feel worried.

    Jay Jay

  • Hi Jay Jay,

    Yes, with hyper, you have tons of energy to start with (I was up until 2 in the morning most days!), but then ultimately later down the line, you crash and burn and find you have absolute energy depletion - which is where I am now, I crash at about 2pm every day! But from what I hear, the hypo no-energy is worse than what the hyperthyroid's get. - You would probably know more about that :)

    it is said, that if you have any signs of Thyroid Eye Disease, it can worsen after RAI - as the antibodies have no thyroid to attack, so they attack your eyes, but this is in Graves Disease mainly... But ultimately, if you are one of the unfortunate ones, your eyes would worsen either way, with RAI it might just speed up the process afterwards, I believe this is in 50% of the cases....I am sure someone else on the forum can clarify for you.

    All the best, don't worry, I am sure everything will work out well :)

  • I am new on here. You were recommended by a colleague who has hypothyroidism. I have had Graves disease for 25 years. I had my third relapse after 18 years remission (with no treatment) last year, I suspect after the death of my husband the year before. My first experience of the disease was characterised by one big eye, weight loss, sweating, frequent visits to the loo and inability to relax, all this settled well on PTU as I am allergic to Carbimozole. The last relapse has been simply hideous! I have been so ill, I was put on propanolol last year for palpitations and chest pain. I had 2 visits to A & E with suspected heart attack..the pain and jumping in my chest and my throat was excrutiating. All tests negative. I couldn't walk up one flight of stairs without breathlessness and heart racing. When my levels started to settle I came off propanolol. Because of the number of relapses I now need what they call 'definitive' treatment. Surgery was mentioned, but as my TED is 'inactive' it is thought that RAI is suitable. I am desperate to start to feel well again and sincerely hope that this treatment might hold some hope. Only those who have this disorder can possibly understand the misery this causes including joint pains and recurrent colds and viruses to name a few. I am anxious even though my colleagues and family are very supportive.

    My initial results were TSH 0.01 T4 32.7, T3 13.7.

    After 100mgs a day PTU for 7 weeks TSH <0.1, T4 23, T3 8.9. TPO antibodies 163.

    After 200mgs a day PTU for 8 weeks my last test showed T4 and T3 normal and TSH 2.2.

    Overall I lost about a stone in weight, I weigh around 55kgs.

    I get my RAI in two weeks, I need to stop PTU one week before treatment. I hope someone can reassure me, I know some of the posts are very reassuring but others instill horror.

  • Hi Grandma :)

    The fact that you have gone a length of 18 years, with no flare ups is amazing!

    I have had to change my RAI date to in 2 months, as we just found out we have to move within 2 weeks, the day before I had to go for RAI & due to work. I am under tremendous stress, and I need to be in a good head space when going for the RAI. I go in 2 months!

    Yes, I believe you have to stop the ATD within 1-2 weeks before RAI.

    I am sorry, I cannot reassure you, as I have not been for mine yet.

    I can say, that, with me personally, I have also been scaring myself terribly with all the horror stories out there, but really, I believe RAI would be better in the long run. I will be putting my negative thoughts aside and going for it. What happens, happens.....I will just deal with it, as long as you know your body, and know how it should be functioning - for anyone that is already off to a good start.

    I am only 27 years old, and my first remission only lasted 5 months - so you are very fortunate that you have had such a long remission time. However, as usual, it comes back with a vengeance, sorry to hear!

    All will go well I am sure. Thinking of you. x

  • My friend has RAI which "normalised" her thyroid, ie she didn't go hypo. Unfortunately her TED did worsen. I have read that selenium can help with this :

    thyroid.org/patient-thyroid...

    Good luck.

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