fINISHED MY R.A.I TREATMENT

Hi there,

I am newly diognosed with hashimoto desease, i then had a full thyroidectomy in April of this year,

i was then informed that i had cancer.

I have been posing questions on hear for the last 3 months, while i was reading a question that was posted about R.A.I, some one was going through similat to me, i think admin had said,

"when people on here have R.A.I They may be ok afterward's and just forget to write to inform the group,"

I found this so distressing, as this would have been the time were i neaded to have more advice, i promised my self that i would not do that, so hear goes.

I went into a hospital in Bordeaux, France for my R.A.I on the 7th November,

I was given an injection for 2 days before hand. I was also told to avoid salt rich food or algue based food for 2 weeks.

On the first day,

I was not to eat after mid-day, i had lots of blood and urine tests done, i then saw a dr who took my medical history, i was told i could have something light to eat but must not eat or drink after midnight.

on the second day

I took a shower than was given my R.A.I Tablet, i swallowed it down with water, than i had to take a hot drink afterwards, i was told that this would help dissolve the tablet once it wsin my neck,

I would be allowed to drink in one and a half hours, but nothing with milk as it could cause nausia.

I was told time and time again, to keep chewing to get my saliva glands to work, also to drink 3 ltr's of water, I was given lunch a couple of hours later, followed by another shower.

All nightwear/underwar/towels that was used were to be put into plastic sacks.

On the third

I was left alone, i was not allowed outside my room, i spent the day resting and working on my laptop. I was told to inform them if i havent been to the toilet, as this could be dangerous.

Day 4.

Left to myself once again, i was given a srong laxitive in preperation for my full body scan the day after. I have had no side effects what so ever, i think this was because i followed the guide lines very closely.

Day 5,

Showered and changed into my day clothes, packed my bags and waited until a medic came to do a guiger count on me and to give me my safety guide lines once i go home.

I am then sent down to have my body scan, this takes over an hour and i was given my results with in 30 minutes.

Had a brief talk about their findings, all good news and i am free from cancer, cried bucketful of tears, its all the same in French or English.

I am given an armful of pescriptions for blood tests, thyroxine, echiograph and an appointment with my proffesor in 3 months time.

I am now at home in my nice bedroom, relaxing and making plans for Christmas.

If there is anything i can do to help any one, please feel free to contact me,

I could not have managed with out the help and suport i recieved from HealthUnlocked.

I will be keeping in touch and hope to be of some help to any one going through this terrible illness.

Take care every one and thank you.

6 Replies

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  • Thanks for posting, Charon and good to hear you didn't have any side effects and are clear.

    My experience was similar but we don't get thyrogen on the NHS and have to stop T4 4 weeks in advance and T3 2 weeks in advance so we get quite hypo. I had blood tests a week before admission (don't recall urine tests) and the radioactive capsule after pulse and bp tests same day I was admitted. Geiger counts every day via hand held monitor and was able to go home (with restrictions) a day early because levels were low due to drinking copious amounts and showering frequently. They wouldn't tell me the gamma ray results, I had to get them from the oncologist or surgeon a month later. There was slight iodine uptake so I had a lower dose 5 months later which was clear and I'm almost 3 years into remission now.

    4/5 months after the 2nd RAI I had thyroglobulin and thyroglobulin antibodies tested and these are used as cancer markers for subsequent tests, usually twice a year at first, then annually. Thyroglobulin ideally will be undetectable and thyroglobulin antibodies <20 as this means there is no thyroid activity detected.

    Take your Levothyroxine with a full glass of water on an empty stomach one hour before, or two hours after, food and drink, two hours away from other medication and supplements and four hours away from vitamin D3, calcium, iron and oestrogen.

  • Thanks for all this info I am at the middle of my treatment just had total thyroidectomy two weeks ago they thought it was cancerous but still waiting my follow up visit for biopsy results I'm takeing 150mg levonthyroxin in the morning before I eat at least half an hour but I take my calcium and vitamin d at the same time is this wrong? No one seems too bothered that they forgot to book my follow up visit and im having to chase up the hospital!! I need to be able to move on and hopefully the all clear will be the outcome but I feel like im in limbo untill the results I dont know how to prepare myself im feeling so much better I couldnt bare to stop my thyroxine and feel so ill again if I have to have iodine treatment I will have to wont I.?

  • Sounds as if you had good treatment .I went through the same 13 years ago without much explanation after having my throid gland removed due to papilliary cancer found purely accidentally. I had small children at the time and it was difficult not being able to be close to them for a while. I wish I had know about this site then (if it was going at the time) however we have it now and the site is so informative. You can get good sold information and support here, which is almost impossible to find elsewhere.

  • I had a thyroidectomy in August (follicular carcinoma) and was sent to Christies for follow up. I was offered three choices; RAI, no RAI or take part in a randomized trial where I would have a 50/50 chance of having or not having RAI. Apparently they are now trying to get a better picture of the real risks/benefits. As I was assessed as low risk I opted for no RAI, just regular follow ups. However just thought I should let you know that had I opted for the trial and had the RAI, I would have also been offered the thyrogen injections beforehand. Perhaps this is offered as an incentive to take part in the trial. I know they are having some trouble recruiting, as most people apparently have a very fixed idea (like me) beforehand over whether they want it or not.

  • Hi there,

    I am so sorry for a delay in writing back, I live in France and since coming out of hospital i have had so many visitors from the UK who wanted to come out and visit me, i think i made a mistake in allowing them all to come, the first 3 weeks after my treatment i began having symptoms of palpetations, headaches, exaustion, etc etc, i should have listened to my body and gone back to bed and stayed there until i was feeling better, i have over done it and am now sufferingfor it, (i didnt want to dissapoint family and friends)

    I see my specialist on the 2nd of February and should be told all my results and any aftercare that i may need, i am out of breath, have chest pains, face pain, dizziness, and tenderness inmy neck, also have lost two teeth, (may just be coinsidentle) im wondering if this is normal after RAI and will it settle down soon.

    I look forward to the New year and am determined to get on top of this blip in life, oh on a happier note, i was told the day i went into hospital, that i was to become a grandma, now with that news i am deffinetly coming out fighting.

    Happy New Year every one, wishing for better times for all of us.

  • HI Charon, just read your tale and illness details. I'm glad you are free of cancer now, it seems that we live close by; I'm in the charente/charente maritime not far from Cognac. HOw about you? I have hashimoto's condition and treated with Levothyrox. Compared to you I'm really fine although a lot of things connected to treatment, such as very dry eyes (quite painful), tiredness at times, insomnia, skin itchy, difficulty in losing weight but oh not so bad really. I take certain supplements such as B12 and Co enzyme Q10 but also natural plant therapy for arthritis . I'm looking for a good "well-being" doctor in the area, do you know one? IN any case feel free to contact me if you want to talk.

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