Posted , 8 users are following.
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.
1 like, 38 replies
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kelly81213 ChattyC
Posted
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
icecool kelly81213
Posted
ChattyC kelly81213
Posted
I'm in a similar situation and the fear of RAI and nit being able to use medications until it's gone scares me.
linda187 ChattyC
Posted
ChattyC linda187
Posted
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,
ceola22 linda187
Posted
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!
ceola22 linda187
Posted
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.
ceola22 ChattyC
Posted
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.
icecool linda187
Posted
icecool ceola22
Posted
linda187 icecool
Posted
It is a prescription drug and I would not buy it online. I don't need to as it is readily available at any pharmacy and it is covered under my drug plan.
linda187
Posted
ceola22 icecool
Posted
This all new to me so I'm really not sure since I just had my thyroid removed less than a month ago. I have to take Levo to get my levels back to normal if I don't take it I'll become hypo and will endure more complications. I don't think that there's a remission when one have a thyroidectomy but I still have more research to do. Great point by the way.
However, I'm experiencing very side effects from Levo. My body is on a new found bad journey and I was pretty healthy prior to taking the med. I'm currently taking levo88 mcg and it's really been rough. I had (4) huge goiters that needed to removed even though they were benign and wasn't causing any discomfort.
My Endo suggested thyroidectomy and I agreed but it took me (3) years to go through it. And, over the (3) years the goiters had grown a few centimeters more. I had a very overactive thyroid, I was diagnosed back in 2004.
The Levo side effects are horrific I've experienced; hair loss, insomnia, fatigue, slight heart palpitations, extreme day& night sweat, muscle/joint pain and the list goes on. I'm living a terrible midnight and I'm in extreme discomfort. I need to find a better med & methods on treating this decease.. I can not continue to be in comfort, I have to take this med or some form for the remainder of my life because in I longer have a thyroid. This really sucks!
I've recently had a visit with my endo and I inquired about the T3 T4 but she refused to go further with it. She did inform me that it takes a quite a dosages to get the dose correct. Most patients who haven taking the combo states that they feel so much better. I just think it was her way of sticking to her guns. I also inquired about OTC & NDT all natural thyroid meds and was told it wasn't a good match for me as well due to it being pig thyroid. So immstuck feeling miserable and it's only been three welds. Any suggestions? Thx!
linda187 ceola22
Posted
I would find another doctor. Besides the prescription Armour (T3/T4 from a pig's gland), you can also get T3/T4 compounded at a Compounding pharmacy but you do require a doctor's prescription to do that. I would not accept that it is difficult finding a dose. The pharmacist can help her with that as he knows what is usually prescribed. Also you can get your vitamins checked, especially vitamin D and Magnesium, as they are important to help proper thyroid functioning. You can supplement if you are deficient.
Sue1247 ChattyC
Posted
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.
icecool Sue1247
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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?
ChattyC icecool
Posted
I'm sorry you are in a flare. Thanks for the advice. Be well.
ChattyC Sue1247
Posted
Thanks Sue. Lots of valuable advice. As soon as I'm stabilized I plan on taking action.
icecool ChattyC
Posted
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