Hello
I was hyper about three years ago and was able to get it under control with medication. It has come back and the Uptake Scan indicates I have a nodule and the thyroid needs to be removed.
I am trying to investigate the pros and cons of RAI or surgery.
I would love to hear any suggestions you may have.
Thanks in advance.
Hi chatty
I was told I had to have RAI by endro doctor, but I refused due to having children and my daughters boyfriend has a daughter (1 yr at the time) and she was due to have a baby within the next 4 weeks and I sed to doc I couldn't have it as you are not aloud around young children and pregnant people, her reply was get them to move out for 6 weeks 😲 , my reply was not what she was expecting and also your thyroid can start working and them go haywire again it happens to my mother, so I opt for removal and then my meds got it under control in January so op was stopped. I went for a check up 2 weeks ago and it's gone way bk up to 25.8 from 15 six weeks earlier.
Good luck with your decision x
I am not an expert but my instinct is to go for a partial thyroidectomy.
For myself, I was adamant with my doctors that I would not have RAI or surgery. I got my Graves disease into remission with a low dose of Methimazole and added supplements to my treatment.
Surgery is final and RAI doesn't always work first time. If you don't have Thyroid eye disease I'd go for the RAI as it works for most people. Whatever you do please don't let it go on too long as I've let mine do. I went into remission once and it came back following a bad infection (sepsis) It gets worse each time I have any stress - and who will avoid that? Presuming you can be stabilised again and go into remission the chances of it returning are higher each time. After first remissioin it's 40% and so on. I'm now at the stage where I can't be stablised and if I could there's a (95% chance of it coming back. It's a part of your body that is now going to cause you problems for the rest of your life and you will be better off without it rather than having to take an unsafe drug to suppress it. Also be careful of any alternatrive remedies as recommended on previous posts. Check everything on WebMd for side effects particularly if you are already on meds. I wish you luck. I've allowed this disease to control my life for the past three years and I'm seeing the surgeon in two weeks. When I'm feeling reasonably OK I hestitate but I* know it's going to be for the best long term.
I agree with you Sue.
I am going thrugh a flare up again. It is worse in many respects but not all. However the fear of it going worse is always there also fearful of the nodules becoming cancerous Why are drs so hopeless when it comes to thyroid issues?
I'm sorry you are in a flare. Thanks for the advice. Be well.
Thanks Sue. Lots of valuable advice. As soon as I'm stabilized I plan on taking action.
Thanks Linda. Mine has to go. Have already been in remission once and can't remain on medicine much longer. Playing havoc with my system,
I'm in a similar situation and the fear of RAI and nit being able to use medications until it's gone scares me.
Thans Chatty. Unless you have been through this then it is impossible to understand all the issues involved. I would give anything to get this b...... thyroid gland removed. I cannot stand the way I feel atm.
Was in bed all aday fast asleep.
It has been going on now for three years. 3 yrs of my life wasted just like that. How lomg ago did yours start, sorry if u have already said and I missed it.
Take care xx
Hi chatty, I had my thyroid removed last month, it wasn't so bad. I did not have to have RAI. I had (4) goiters on each side, it wasn't cancerous but my neck was huge and it had to go. Just to let you know; after surgery you must take meds for life. And, the meds has several unwanted side affects. Such as; weight gain, hair loss, brain fog, night sweats, muscle & joint pain. Once it's removed you'll have hypothyroidism and everything slows down including your weight. So, expect to gain about 10lbs within the first 3 months. A healthy diet & exercise is advised.
I'm very nervous about the weight gain because I never been over 135lbs in my life, I'm currently 125lbs. The meds are pretty harsh which they all are no matter what decease you may have. However; your doctor will prescribe a recommended dosage. It takes about (6) months to get the dosage regulated.
I'm having many of the aforementioned side affects, I kinda regret having the surgery now. However; I don't want to discourage you. I have a great family support system so in ok mentally and I'm sure you do too. Just talk to your Primary care doctor or endocrinologist about the pros & cons and do your own online research. The doctors don't always tell the truth about the side effects and the synthoid meds that they prescribe. There's other alternatives for meds too. Good luck dear!
Hi Linda, you were very lucky. If you do not have any goiters the meds should work fine for you. My best friend has graves decease and she went through hell. I let mine get out of hand so I had to have it removed. The side affects of the meds a terrible though. Now that it's removed I currently have hypothyroidism. Everything slows down including your weight, I'm not too thrilled about that since I'm very thin weighing in at 125lbs. I wish you the very best! Good luck Hun!
Many patients do better on a T3/T4 protocol rather than levothyroxine alone. This is because T4 converts to the active hormone T3 for use in the body and some people have a problem converting it. There are T3/T4 combinations already combined as meds or patients can add the T3 drug Cytomel to their Levothyroxine. This can also be made up in a Compounding pharmacy but all of these options requires your doctors prescription so you might want to take up this discussion with your doctor.
Linda, thx so much for responding. Actually, I tried convincing my Endocronologist to put me on OTC or NDT but I was refused. Stated its pig thyroid and it's too difficult to find the correct dosage. She also stated that it wouldn't be a good match for me since I no longer have my thyroid. She swears that the Levo or synthoid is best for me. She say I just have to give it a chance and stay off of the Internet on forums. I NEVER do that- This is my inspirational!
I had a Thyroidectomy approximately (3) weeks all benign. My Endo stated that I'm still have hyperthyroidism and she's trying to give me the correct dosage of Levo so that I can be normal. I no longer want to take the Levo the side affects are horrible, it is not agreeing w/me at all. I need another alternative med that'll work for me. I might have to choose another Endocronologist.
Ive noticed in one of the threads that you have graves decease. How long have you had the disease? Will you choose surgery or RAI? What meds are you're taking for your graves decease if any at this point. How long have you been in remission? If you choose surgery please do your research months before and please have a support system. Actually, I think I should've gotten counseling. However; I'll be your inspiration. And, if you have any helpful hints that you think I can use, please feel free to share them with me. I'm a newbie to the site. It's very nice to meet you. Thx again Linda.
oh I see that you refuse surgery & RAI. Actually I don't blame especially if it's in remission. I'm going through hell right now. My endo can't get my dosage right. I was on methimazole at one point myself and it was the Pitts too. I was diagnosed with hyperthyroidism 12 years ago and I took myself off the meds for a while it was working me over. Good luck to you Linda.
Surgery isn't that bad. It's the meds that they put you on afterwards. Be sure to ask your surgeon and endocrinologists many questions prior to surgery. And ask about T3 T4 meds it's much better than Levo/synthoid. I heard OTC & NDT was good as well is more natural but its pig thyroid. Actually it's probably much better than the meds from the phamacutical companies. They usually serve poison on a platter. Just be careful. Good luck to you dear.
Linda as the Methimazole prescribed for you or did u buy it online?
How can u tell when you are in remission though?
I will never choose surgery or RAI. I do not need to. Low dose Antithyroid meds work just fine for me. I was diagnosed in 2007 and have been in remission since 2012 on a very low dose of antithyroid meds plus supplements. My cousin had her thyroid removed because she had thyroid cancer and she is not doing well on levothyroxine because no matter how high a dose she takes, she does not feel normal. I disagree with what you were told about the difficulty of determining the dose of a T3/T4 combination. Clearly with my cousin who is taking the maximum levothyroxine dose and still not feeling normal, she might do better on the pig thyroid med. This is what they used before levothyroxine was on the market.