[NLBatten]

in reply to: Just diagnosed w/ Graves – need some reassurance #1170521

Hi Jenn. I am doing well thanks. I was a little tired again a few days but not too bad. My joints have been really achey the last few days but maybe that is unrelated. All in all though, much better than I was before the beta blockers and seemingly no side effects from the RAI. I go back to dr on 3/23 to redo labs.

I have not throat punched myself and will try to continue to avoid that.

Glad you are well also. When I read these boards about people’s concerns about RAI, I worry that I made a rash decision without thinking about it too much, but what’s done is done. It seems I have been one of the lucky ones really with this disease in terms of symptoms. Hopefully it will continue that way!

Keep in touch. Let me know how you are.

[NLBatten]

in reply to: Hi, Im new & Confused. Please help……Sorry if long! #1170668

Wow Jennifer, you have been through a lot! I was only recently diagnosed (Feb. 21) and had the RAI on Feb. 24. Fast I know, but I am so tired of being sick and the side effects from the meds (especially potential liver problems) scared me and I didn’t consider surgery an option. Anyway, I don’t know if this will help you, but I had some of the same questions about wondering if the diagnoses of Graves was accurate since it was so quick and definitive. I had only 3 TSH blood tests and then the RAI uptake and they said definitely Graves. NO antibody test, ultrasound, etc. My numbers were similar to yours sort of – latest TSH was <.008 T3 and T4 were only very slightly elevated. When I went to get the RAI, the radiologist asked the tech what my "number" was from the uptake and she said 53. Radiologist told me that 10-20 is normal, 25 is high and over 50 is definitely Graves. (I think these are percentages of iodine uptake in the thyroid.) No need for any further tests. So, they may not give you a copy of the scan to review, but they might (should) tell you what the number was (% of uptake). I believe I read that if it is under 50, that doesn't mean it isn't Graves (it would just require further testing), but just that if it is over 50, it is definitely Graves. Hearing it at least made me realize the dr. wasn't making a rash decision. All roads for me lead to Graves. Maybe getting that number from the uptake test will give you some more guidance.

[NLBatten]

in reply to: A question about Thyroid Storm before my dr appt tomorrow #1170592

Sarah, it is interesting that you say you feel like you are running a race. That is exactly what my dr said to me as to why I am so tired and my resting heart rate is nowhere near what yours is. Imagine, if you were exercising, that is likely where heart rate would be on a healthy person. Don’t know if that helps you, but it made me feel better knowing there was a reason I was tired and not just being lazy or feeling sorry for myself.

Try to not make a decision tonigth and wait and see what she says tomorrow. If it were me, I don’t think I would fly, but that’s just because my dr saw me right before I was about to go out of town. (I had a panic attack which really made my heart race.) So what she did was run another TSH, see where we were and luckily mine wasn’t that bad, so she felt safe with me traveling and just told me what symptoms to watch for. If you both decide it is best not to go and you are concerned about losing the ticket, see if your dr will give you a written medical excuse not to fly then call the airline and see if you can get some relief on the ticket. At least they may just give you full credit to take the flight another time instead of charging you the change fee. It’s worth a try.

[NLBatten]

in reply to: New Dr. Tomorrow, What to ask? #1170582

I don’t really have too much to add as I was only diagnosed last week. I have had kidney stones though (3 lithotripsy “blasting” since last summer). I wonder if it is at all related to Graves? Anyway, I have seen a lot of drs. I have to write my questions down and frankly practice it before I go in and then read off my list. I have even (just last week) called and asked the dr to call me because I had more questions. For some reason, drs intimidate the heck out of me, but we know our bodies the best and our health is very much our responsibility so as Bobbi said ask questions instead of telling him, but don’t feel bad about asking and strongly expressing your fears. Re your resting heart rate, mine was 110 and that is how they thought to run more tests and diagnose so it is definitely important to tell him. (Actually nurse should take pulse after your BP. Ask what count she came up with if she doesn’t just offer the info up.)

Good luck! Deep breaths! Remember drs mean to do good. They just get caught up in the business of it all sometimes. AND if you don’t like this guy, keep searching until you find someone you feel safe with.

[NLBatten]

in reply to: Just diagnosed w/ Graves – need some reassurance #1170519

Thanks for the info Bobbi! I wish there was more consistent info from the doctors. No one told me not to eat after the dose. I even asked and they said it was fine to leave there and eat. AND No one told me about the potential to experience more hyper symptoms. I already started on the beta-blocker, so hopefully it will get me through. I feel pretty great today. I know it’s too soon for the RAI to work, but the beta-blockers really must be.

Thanks again.

[NLBatten]

in reply to: Just diagnosed w/ Graves – need some reassurance #1170515

Hey Jenn. Glad you are feeling ok. So far I seem less tired today but certainly slept enough yesterday to make up for today. I too am headed back to work tomorrow.

I do feel like the info was a little vague. They gave me a sheet of paper that said cautious for 5 days but said that is the state requirement (Texas) and it is really very conservative so I was fine to go back to work Monday. My job doesn’t involve being around children or pregnant women and I sit in my own office, so that helps. I will probably just tell people to stay 6 feet away until Wednesday just to be safe. But again, the head radiologist for the hospital is the one that gave me the dose and told me even 3 days was conservative. So, I’m not sure the real answer. He did say specifically to keep children or small pets away from your neck as that is where the radiation would be concentrated (?). Believe he only meant 3 days though.

Regarding being brave, that isn’t necessarily the case. I was told I was hyperthyroid at the end of December and it took 6 weeks to get to my GP and then to an endo. In the meantime I read a lot (probably too much), so I had a feeling it was Graves and knew before dr told me what the 3 treatments were. I originally thought I would do anti-thyroid meds first, but she said it would only stall it and RAI would “cure” it. I needed a “cure” and I didn’t want to try other things and end up at RAI in the end. I am tired of being sick and still have other unrelated issues to deal with, so if I could get this one knocked out (mostly), then that’s what I wanted to do. I did feel a little backed into a corner and not a lot of info, but the links Kimberly provided in response to my original post were really helpful.

I hope the RAI works for you and you start feeling better soon. Take care!

[NLBatten]

in reply to: Just diagnosed w/ Graves – need some reassurance #1170514

Hi Jenn! So far so good. I’m tired, but I think that’s just because I have been laying around the house for 24 hours – afraid to go out of the house and contaminate someone. How are you feeling after yours? I hope you are feeling well!

Nancy

[NLBatten]

in reply to: Just diagnosed w/ Graves – need some reassurance #1170510

Thank you very much for the responses and for the link to that article discussing the 3 treatment options. I sent an email to the endo last night after posting this and she called me back today (not the nurse – actually the dr). I asked her the questions I asked you all and she was able to give me sufficient answers. I actually felt much more comfortable after discussing with her. When I asked didn’t we need to do antibody or other labs, she said the results of the RAIU and Thyroid Scan were definitively Graves. NO doubt at all and only with that doubt would she need other labs. That made me feel more confident in the correct diagnosis and just hearing her speak made me feel she really did know what she was talking about – she just didn’t express it very well when she gave me the diagnosis.

I read the article about the options and have decided RAI is best for me. I have no desire to have another surgery (I have had 4 too many of those in the last 18 months and will have to have at least 1 more this year for kidney stones). The antithyroid med does not appear to be a permanent solution for most and trust me if things can go wrong, they will for me. (I seem to follow Murphy’s Law when it comes to medical issues!) I already have low white blood cell count and issues with my liver, so the side effects of this med just screams stay away. I have no eye involvement currently. So, RAI it is. I have an appt at 1:00 p.m. tomorrow. No need to put it off. Once I make a decision, I am ready to get on with it. Besides I am so sick and tired of being sick and tired. :0) I feel confident now that this is the best way to go and look forward to feeling better soon.

Again, I appreciate all your advice and will check back in.

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