I have Graves Disease and I am being pressured in to making a definitive decision: RAI or surgery...

[RhubarbAndCustard]

Hello,

I have been diagnosed with Graves Disease since August 2015, aged 31. I have tried Block & Replace but unfortunately I relapsed last July after 6 months of no treatment.

I am currently on 5mg of Carbimazole daily but my Endo is pushing me to make a definitive decision regarding the future of my thyroid. Basically, RAI or surgery.

For the first time in a long while I actually feel well and wonder why I can't stay on Carbimazole for longer, I understand the health risks associated but if I am doing ok then why not? I am due a checkup on Thursday where I know they will want an answer off me but I am just not ready, has anyone else been in this situation?

Thanks!

[GoodnessGraves]

I had the RAI and now I am hypo!! I wish I never did the Radio Active Iodine!!! I am suffering badly, cold, weak/tired, pain, feeling depressed, foggy brain, headaches, nerve pain!!! Get this tho, every so often (2yr intervals) I relapse!! The Graves comes back!!!!!!! It never left!!!!! I was diagnosed and treated in 2007. Being without a thyroid sucks, you still have Graves!! My doctor felt RAI would be necessary because i was liable to die young because my thyroid was too toxic!! SMH..i should have gotten a second opinion.

[RhubarbAndCustard in reply to GoodnessGraves]

Oh dear, sounds like you've had a right nightmare When did you have the RAI?

My appointment is in 2 hours and they want to schedule me in for surgery as I said that was my preferred option but I am not ready to make this decision and I feel they are forcing me too. I feel well on the Carbimazole so would prefer just to stay on this for the next few months at least.

[GoodnessGraves in reply to RhubarbAndCustard]

I was given RAI in October of '07 and by january of '08 I was hypo and put on replacement hormones (SYNTHROID) at 125mcg. I stayed at that dose until 2012 when i was told that the Graves returned andmy dose needs to be lowered. But during all of this i had EXTREME sympotms of hypo!! IT GETS VERY CONFUSING AFTER RAI IS PERFORMED.. MY ADVICE BE YOUR OWN DOCTOR..LEARN AS MUCH AS YOU CAN about the role of these medicines (side effects) and how to treat your body (eating +lifestyle).. The body repairs itself for the most part but if there is no organ to repair, then what???

[redeyes2 in reply to RhubarbAndCustard]

RhubarbAndCustard,

I hope you are doing well. I cannot undestand them forcing you to make a decision when you were doing perfectly fine and were happy with the way things were.

Please let us know what happened with you. Did you get a second opinion from a dr? I sure hope so. Good luck. Post back and let us know. Red

[RhubarbAndCustard in reply to redeyes2]

Hi, I opted for surgery in the end, the thought of RAI just doesn't sit right with me at all. I am now waiting to hear from the surgeon... I really hope this is the right decision for me x

[redeyes2 in reply to RhubarbAndCustard]

What is the surgery for; do they remove the thyroid? Is it goiter? My drs have never mentioned any surgery for the thyroid. I have Graves and my thyroid stays pretty good most of the time. My Grave's has been more with eye problems; which I have had surgeries for. They tell me even if I got RAI it would not change the eye problem. I will probably always have some eye issues.... that is the current dx for me. (waah) I am grateful my thyroid behaves most of the time.

[WebDeb]

I have just been offered surgery or RAI after 2.5 years on carbimazole and a relapse, interested to know if things have settled. Going hypo is expected and my endo says 6months to settle after treatment, then thyroxin and finding the right dose. Have you found your levels and starting to feel "normal"? I do hope you are doing better.

TC

[RhubarbAndCustard in reply to WebDeb]

Hi, I have opted for surgery, I wish I could stay on the Carbimazole but it's a lot to keep monitoring and my dosage is altered to suit my levels all of the time, I keep getting close to being hypo. I hope surgery is the right decision, I am nervous x

[WebDeb in reply to RhubarbAndCustard]

What tipped your decision? I'm in intrigued as I'm just starting my research but surgery seems quite scary to me, but then I am a big wimp What about RAI put you off? The thought of taking radioactive iodine treatment and possible side effects?

Good luck with the surgery, it has the be the right decision for each individual x

[RhubarbAndCustard in reply to WebDeb]

I've read a lot of posts where people have ended up regretting RAI, they have ended up with worse symptoms, I know removing my thyroid is a final decision but I just don't want to put RAI in to my body. The fact that I can't be near anyone for a couple of weeks scares me and the increase (albeit small) of cancer and it might not even work. I want to start a family too. I'd rather just get it removed and start levo and go from there even though I know there are risks associated with a total thyroidectomy. I have just made a decision even though I heavily dislike my 2 options. See what you think when you start looking in to it x

[Helenca]

I had RAI 35 years ago and have lived a thyroid nightmare ever since. To begin with my endo “forgot” to make a followup appt for me after the procedure, so my TSH went to 300, I kid you not. She sent me to the ER for intervenous t3 after I went essentially psycho and my husband called her in a panic. After that I continued to be hypo with all symptoms, even though my numbers were sometimes in the “normal” range. Cold hands and feet, dry skin, sluggishness, insomnia, anxiety, everything. I’ve bounced around from one med to another — t4 only, Armour, dosages up and down. Only one thing is clear and consistent: my thyroid situation depends TOTALLY on how much carbohydrate I eat. When I’m careful and stick to 50 grams per day or less (essentially ketogenic) my thyroid seems to get a break, and my TSH goes way down under .1, so I have to adjust my dose. When I backslide and start eating bread and sweets I go totally hypo on the same dose. VERY CLEAR after 35 years. I now think I might have cured my Graves disease with a strict keto diet, and regret every day having that RAI!