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in reply to: Return to work release form #1172606
Your dr will have a form letter to sign that HR should accept.
in reply to: RAI coming up…what to expect?? #1172552Ok, this might make others mad, but honestly, I sometimes wonder if I missed something because it was really easy. Maybe I haven’t been dealing with it long enough or maybe I am in denial. The RAI part really felt like no more than taking a pill and then taking a few precautions around others for a few days. I did mine Friday at 1 and back to work on Monday. Now, as your thyroid hormones regulate, you may have some issues, but it is not necessarily related to the RAI. I felt a little spacey a few days but I am pretty sure that was the beta blocker (which I only took for 30 days). Then I went hypo pretty fast – 6 or 7 weeks and I could tell something was up – weight gain, hair loss, brittle nails, etc. but all in all, the RAI itself seems something not to be afraid of at all.
I know others have much more serious Graves symptoms, so maybe I am just really lucky….
in reply to: Kidney Surgery Monday & Now Wondering… #1172391Hope it all went well. Ask away. I will try to be as helpful as I can. To send a private message, I think you just click on the PM under my name in my post or click on my profile and from there is a link for sending a private message.
DRINK LOTS OF WATER!!!!!
in reply to: Kidney Surgery Monday & Now Wondering… #1172388Hi Kari! My sympathies go out to you for kidney stones. I had this same procedure (3 times) last year and also had ureter stents put in and left for 4 weeks. You don’t mention that part, so I am really hoping you do not have to go through that. Without the stents, the surgery is pretty easy. Passing the stone fragments afterwards can be uncomfortable. If you have any questions about this procedure specifically or just need to vent, feel freem to message me directly.
All that said, I have to have another one this year. (One stubborn stone that refuses to break down and pass) and my urologist just said I need to be under 4.5 TSH and be in “normal” range. Given you recently had TSH tests and you are being treated, you should be fine. You do need to be sure the anesthesiologist knows about it though it is likely they know very little about GD. As an aside, this procedure with the stents is the physical stress that I suspect kicked my Graves into gear. Before my first procedure in July, TSH was totally normal. By my last one in November, I was very hyper – I just didn’t find out until December. Since you have had RAI and your Graves is controlled, I should think stress won’t affect you too much one way or another, but it might be worth calling your dr that monitors your GD in a few weeks and let him know you had surgery and see if you should have your levels checked. Just keep an eye on your symptoms and call dr if you need to. It won’t hurt them to run another test just to put your mind at ease.
Best of luck! Anesthesia can be a little scary to think about – especially the first time, but be sure anesthesiologist knows its your first time to have general anesthesia and they should walk you thru it.
Nancy
in reply to: Kidney Surgery Monday & Now Wondering… #1172387Hi Kari! My sympathies go out to you for kidney stones. I had this same procedure (3 times) last year and also had ureter stents put in and left for 4 weeks. You don’t mention that part, so I am really hoping you do not have to go through that. Without the stents, the surgery is pretty easy. Passing the stone fragments afterwards can be uncomfortable. If you have any questions about this procedure specifically or just need to vent, feel freem to message me directly.
All that said, I have to have another one this year. (One stubborn stone that refuses to break down and pass) and my urologist just said I need to be under 4.5 TSH and be in “normal” range. Given you recently had TSH tests and you are being treated, you should be fine. You do need to be sure the anesthesiologist knows about it though it is likely they know very little about GD. As an aside, this procedure with the stents is the physical stress that I suspect kicked my Graves into gear. Before my first procedure in July, TSH was totally normal. By my last one in November, I was very hyper – I just didn’t find out until December. Since you have had RAI and your Graves is controlled, I should think stress won’t affect you too much one way or another, but it might be worth calling your dr that monitors your GD in a few weeks and let him know you had surgery and see if you should have your levels checked. Just keep an eye on your symptoms and call dr if you need to. It won’t hurt them to run another test just to put your mind at ease.
Best of luck! Anesthesia can be a little scary to think about – especially the first time, but be sure anesthesiologist knows its your first time to have general anesthesia and they should walk you thru it.
Nancy
Alexis – I am not sure if she will prescribe T3/Cytomel or not. Right now, she just said wait 3 months and we will check it again. It was only 6 weeks from the time I started Synthroid so hopefully it will improve by the next test. I have my eye on a new dr in town if I don’t feel like this dr responds on the next test. She is “lab only” dr except face to face visit once per year. Not sure how I feel about that yet. It is convenient and cheaper but it concerns me that she saw me once since RAI and doesn’t intend to see me until 12 months later. Suppose as long as I am paying attention to my symptoms and can contact her if needed, it will be ok.
Nancy
in reply to: Cannot Believe it… #1172311That is great news! I am really struggling with that right now myself and so hoping it stabilizes soon. So happy to know that there is hope around the corner! Thanks for sharing!
in reply to: Okay. What would you do? #1172223Alexis – glad you made a decision. Hopefully that was the hardest part.
Not to confuse you any more but for what it’s worth, my endo said only to take Brand Synthroid and not generic. She said she had found the generics not to deliver as consistently. My insurance charges me a penalty because I am using brand (even though dr says “brand medically necessary”), but the cost isn’t too bad. in reply to: radioactive iodine or not help please #1172250I agree with Shirley. I did a lot of research and never saw anything that said RAI could lead to cancer or leukemia. It is something they have been using for over 50 years and have very good results with. The treatment options info in this forum are very good. They helped me reach my decision for RAI and while I am only 3 months out, I don’t regret it.
As Shirley said, we all have to reach our own decision. We are not doctors and cannot substitute for your dr info. We can only give you our experiences, but please do be cautious on too much internet research. You will find a lot of the “experiences” out there (other than on this site) are only from people complaining or upset. As many have said on here, most websites are not made up by people who are doing well and feeling healthy. Except this website. The reason I really like this site is that you see so many positive responses from the moderators and folks like Shirley. Just take what you read elsewhere with a grain of salt and realize once you finally reach your decision, you will have peace with it and just go forward.
Best of luck! Keep us posted!
in reply to: shoulder post op and graves #1172183Rotator cuff takes a VERY long time to recover from. It is very likely just some nerves being compressed due to swelling from the shoulder. I had all kinds of random pain with my RTC repair – and sometimes down in my hand. I found ice and anti-inflammatories helped. Once you get in to PT, they can do some manual stretches that may help. Are you sure it is ok to use TENS machine yet? I know it is different with every patient, but if you weren’t given that by your dr or a PT, I would consider calling and ask PT before you use it again.
Also, once I had my RAI, I found a lot of my shoulder pain went away. I know that seems strange but I think I had a lot of muscle and joint pain from being hyperthyroid and that was 18 months after my shoulder surgery. You have to be very patient with RTC. Most ortho will tell you it is a full 6 months for arthroscopic repair and 1 year for open repair to be fully healed and I have often heard tales of it taking up to 2 years to get full recovery. You are only a couple of weeks out, so pain is to be expected – even if in an odd place. (Oddly I actually had leg pain after one of my open shoulder repairs. Best we could figure is 1) how I was sleeping and holding / carrying myself and 2) compression on a nerve that ran through my neck near my shoulder incision.) Be patient with yourself and still be diligent about exercises and ice.
in reply to: TSH Testing Only Once Stabilized Post RAI #1172139Beach45 – you could still turn hypo very quickly. My TSH at 4 weeks post-RAI was <.008 (same as before RAI). I was tested again 3 weeks later because I felt strongly I had Hypo symptoms and in just 3 weeks had shot to 7.8 TSH. So hang in there. My understanding is not everyone reacts as quickly as I did, but it can happen, so try to wait it out. I felt not great for first 3 weeks after RAI, then really good for about 2 weeks and then not so good again which is why I asked to be tested early. It is a rollercoaster ride for sure!
in reply to: Controversy over T4 vs. a T3 / T4 combo #1171981I am so very glad you posted this! I have been so confused about this myself as I joined another thyroid internet “group” for potential local support and have been overwhelmed with their emails / comments about this subject (and the other massive amount of supplements and other hormones they take). As always, Bobbi, Kimberly and Shirley you have come through for us with great explanations!
Beach45 – I thought I would give you my brief story so you won’t be disappointed if you don’t get great results right away. DX 2/21; RAI 2/24 (fast I know). 4 weeks post-RAI there was no change in TSH but T3 & T4 had come back in to normal range. Endo said wait 6 more weeks and try again. A couple of weeks after first post-RAI labs, I started feeling hypO symptoms (splitting/flaking nails, fatigue, gained 9 lbs in 1 week, muscle aches, etc.) I was panicked because I was going on vacation for a week, so I asked for another test at 3 weeks (i.e. 7 weeks post-RAI). In just those 3 weeks, my TSH jumped to 7.8 (not that high considering most people but drastic given I had been at <.008) and T3 & T4 were quite low. She started me on Synthroid (likely half of the dose I will eventually take as I am quite overweight and one of the ways they determine doseage is weight) and I was to return in 6 to 8 weeks. (You will see from some of Bobbi's posts that there is no need to test more often, as it takes times for the numbers to catch up and testing too often and then adjusting meds too often can send you on a hyper/hypo rollercoaster. ) Anyway, I am 5 1/2 weeks into my Synthroid dose and while I would like to tell you otherwise, I don't feel great and frankly still having hypo symptoms. I am very anxious to get my next labs and move on to the next higher doseage of Synthroid with the hope that will start to help. I say all that to say, be patient but listen to your body. If your labs this week show no change, don’t be discouraged. Watch for hypo symptoms but it appears that not everyone goes hypo as fast as I did. If you have symptoms consistenly before it is time for new labs, call and get new labs. When you do go on Synthroid (or other), you have to wait it out. I read somewhere it takes about 3 weeks to start feeling the effects and even then, the first dose might not be the right dose. It is a tough wait. I am under incredible stress at work right now and I hurt all over, but I am getting thru just waiting for next Monday when I can test again and start moving on to the next step. And even then, even if it is the right dose, it could be another 3 weeks until it starts helping. Reading this board and being part of this group is very helpful though because I can see there is a light at the end of the tunnel and despite what many on the internet would have you believe, you can live a normal life with this disease. Thanks to all of you who give us hope (and great advice)!
I had 4 shoulder surgeries in the last 12 years and it’s really hard to pinpoint your pain. It hurt all over – from my back and down into my fingertips sometimes. I did call dr and got a strong anti-inflammatory. Until then, can you take Advil or Naproxen? I used that in between my doses of Vicodin and it seemed to help with swelling which gave some relief. You could try some ice. Are you in a sling? Maybe it’s just a muscle cramp. If you are in a sling, you can try to ease your arm out of the sling and straighten your arm out. That relieved the muscle cramps for me some. Be careful. Don’t move the shoulder/arm away from your body. Just straighten from elbow out.
The 2 surgeries I had that were arthroscopic, I felt magically better on day 46 after surgery. On the 2 open surgeries it was a good 3 months before I felt I had turned a corner. It is a slow process but once you turn the corner, it will feel so much better than before surgery, you will be very glad you did it.
Wish I had better advice. It just takes time, patience, exercise/rehab, ice and pain pills. Hang in there.
Nancy
in reply to: Had the Scan Done #1171860I know it is not what you were hoping for but at least you have a name for it now and can go forward with a treatment plan instead of being in limbo. At least it made me feel better knowing there was really something wrong and it wasn’t just all in my head.
in reply to: Why is RAI so controversial on the internet? #1171849Yes what elf said. Well said….
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