RAI.....my experience....this was my experience doesn't mean it will be yours. I am a person that has mcs/ei...I am chemically sensitive

Please don't read this and think this will be your experience if your immune system functions normally...you will be fine...but I however was not fine...and what I went through still makes me cry 5 days after RAI..I had told my doctor I was chemically sensitive but he didn't listen...I begged for a low dose as I already had a TT on the 4th before they found cancer . The TT was for hashimotos and nodules...but cancer was found in both lobes..

I was told to go to hospital to take pregnancy test...it was negative...I was very afraid because I have trouble taking normal drugs like Tylenol or even a vitamin..I have environmental sensitivity to new carpets and paints etc...so I tried to be bold ...I was taken to a room where they pulled out a biohazard container...he pulled out two pills as my dose was 150😞... i did begin to cry...I swallowed both pills...within 15 minutes I got sensitive to light and sound...on ride home. I could feel warmth all over my body but centered in thyroid area.. I thought OK I can do this . I started drinking fluids. My family left. The warmth turned to burning all over and in stomach like glass and flames...I became severely nauseated...I tried everything. .nothing helped...I got very ill by the second day I couldn't eat ... I don't want to go into too much detail because it seems like a dream...but if you are sensitive don't take this unless you have no other recourse. I will never do it again. I would choose any alternative but never will I drink poison ever again...the tech made it sound so easy. It was like I fought a dragon for my life a few times I wished I wasn't around. I will state again I have a different situation but the nausea was indescribable for me..one night I wanted to call the paramedics because I started to swell and I was so sick..I convinced myself the Nuc tech must have overdosed me..this was my experience as a person with chemical sensitivity...I would not recommend this

15 Replies

  • I'm so sorry you went through this nightmare! I am extremely chemical sensitive. What were the pills you were given? I won't go to a hospital because I can't function under their regime. I feel so badly for you. Please take care!

  • It was radioactive iodine to kill the remaining cancer and all remaining cancer cells ..I did fine when I had my thyroidectomy...how are you? How do you tolerate your thyroid medication? I am taking small pieces of mine building up my tolerance...so you have your thyroid still? I don't want to lose touch .. people who are chemically sensitive need each other.

  • Hi...I'm hanging in here. I've been self-treating limitedly. I've been waiting to get Thyroid plus 12 blood tests. I'm going to go with NDT. I just have to go natural as possible with everything. Although my husband sees the horrible reactions to what he thinks to be the simplest of chemicals, he thinks it's a bit in my head and it sure isn't. Food allergies attack my nervous system as well, so I empathise greatly. I do have my thyroid still, but thyroid problems came after having Rheumatoid Arthritis for about 12 years and food allergies have been strongly a problem that long also. I've tolerated medications as well as supplements quite well except for Vitamin 3 which made me very hyper and I felt sick to my stomach as well, so I've stopped that one until I get test results from the private lab. It's quite a coordination to get the tests. I can't drive because of vertigo, so to schedule the blood tests means coordinating with the office for my husband's work to schedule a Monday or Tuesday in advance and a time of day that will somehow fit my sleep schedule which changes just when I need it not to. I really hate to go off my medication and supplements to have tests but must do so. I am on infliximab for Rheumatoid Arthritis at the hospital via I.V. every 8 weeks so wonder about the effects of that on my thyroid. The most difficult part for me is the frequent vertigo but also the doctors who treat me like I'm imagining problems. I do wish they would experience what I experience. Where is it you live? Do you have support at home for you?

  • I am in USA ...I am the one supposed to be taking care of everyone!! No husband ...and I have a child to take care of...I will pray for you...

  • I'm not an expert by any means, but how did they not know there was cancer in the thyroid before the surgery? Didn't they do a fine needle aspiration or biopsy or did it not show on any scans or other tests they did? I'm asking because I would think that if they know that there's cancer at the time of surgery, then maybe this would have indicated that they needed to be more radical re how much tissue surrounding the thyroid they remove during the surgery.

    Are you in the USA and does the hospital specialise in thyroid surgery?

  • Misswoosie,

    Even though a radical thyroidectomy is done to cut out cancer there is still remnant thyroid tissue left in the thyroid bed and thyroid cells are loosed into the body during surgery so RAI may be recommended to ablate those cells according to the patient's risk factors of having recurrence.

  • Omg you poor thing! Everyone is different! No judging on here! Wat is RAI? don't you need your thyroid taken out if there is cancer?

    I'm quite sensitive too my doctor started me on Erfa thyroid he said just start with 60 mg! Yes right a felt spaced out and palpitations! Luckily he listened to me next time and started on the lowest dose I'm now up to 100 mg that's enough for me! Find a doctor who listens Big hugs

  • Yes I had a thyroidectomy on Aug 4 then they found cancer. I had a thyroidectomy for hashimotos and 5 nodules..I was then told I had to do radioactive iodine in order to kill any remaining cancer or thyroid cells. The RAI was way harder than the surgery for me. I am taking smaller doses of armour...I am supposed to be taking 120 mcgs... but can only tolerate around 30 right now but I am extremely hypo now in the hundreds.

  • Hi I too received RAI its barbaric not a experience I would go through again frightening & given as a medical treatment my question is would the doctors prescribe this for theirselves? Now it's early days for you it sounds as though your doctor is on the case Armour is Natural so therefore should be easier for your body to except it does get better I like you had the RAI after having my thyroid removed it's upwards and onward if Armour doesn't work there is other Natural thyroid medication that might but give Armour a chance think to yourself it can only get better take care

  • My toxic multinodular goiter and hyperthyroidism, undiagnosed for a long time, caused anxiety and depression that ruled my Life. I ceased to function as a normal person. Talents and abilities died. A prestigious university medical center decided RAI. I begged, cried, please I cannot emotionally, mentally endure 3 to 6 months of hormone dump and extremes of RAI that may not even work please just do thyroidectomy. Response was "but that's major surgery. " Refused to listen to me. The day of scheduled RAI the head of Radiology talked about the procedure with me, I shared again my terror, and she immediately, with great care for me, arranged for a surgical consult. Long story short, it's a miracle, the anxiety and fear and terror caused by the hormone left along with the thyroid itself. Stand up for yourself! Listen NOT to others, only to your own Heart.

  • Dear itsjakefromstatefarm, I am so sorry for what you have endured, I understand the fear of allergies, I have suffered so many also. You are still trying to deal with the horrendous trauma and it will take a long time. Please do not be cross with yourself. for, what was poison to your body was a treatment by medics whom you trusted to make you feel better rather than desperately ill. I too have suffered greatly at the expense of ordered medication techniques & like you am now hyper vigilant about all medication. Please be very kind to yourself and allow yourself to recover at your pace. I wish you better health, less worry and peace. No one understands the terror chemically sensitive people suffer. Thinking of you Pixiewixie

  • I'm so sorry you went through this. They should have kept you in hospital overnight to monitor you. I'm sensitive to a lot of meds so I understand and agree doctors do not. I went through radiation for breast cancer but they said I could take a pill instead of chemo. I could not function on the chemo pill and I was a full time caregiver to my mom who had dementia. Those of us sensitive to meds have little alternatives. Hope you're doing better.

  • Hi itsjackfromstatefarm RAI is really harsh stuff but a nessesary to kill your cancer cells. I too had RAI to destroy my thyroid due to Graves' disease. I was very unwell afterwards. I had mine as a drink after 5 years I still feel freaked out. How are you coping with the medication for underactive. Life does get easier. It's just shite for some of the time. I wish you heaps of luck for the future 😬

  • Thank u...I am taking small amounts daily of armour trying to build up my tolerance....god bless u

  • Oh dear I am so sorry for you. I had RAI 8 months as a definitive treatment after a rollercoaster ride of Graves disease for 25 years. I must say it was the best thing I did. My last relapse was terrible, I could never go through that again and I felt so ill on PTU. My levels have been fairly stable and I have not gone hypo, so presently not taking any meds and feeling better than I can remember in some time. I live in hope that if and when I go hyper it can be controlled well. I did have inactive eye disease which has not been affected at all. Just wanted to give the other side of RAI. Good luck to everyone.

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