[NLBatten]

#1058870

I have reviewed the forums hoping not to just ask the same questions everyone else has, but I feel like I need some specific reassurances. Just diagnosed Tuesday (2 days ago). And what scares me the most is the sort of casual way it all went down and I am already scheduled for RAI on Friday (24th). I’ll try to keep this short – haven’t been feeling great for a while (anxiety, hand tremors, weight loss, muscle weakness) but I have kidney stones and had 3 lithotripsy procedures last year (July, August and Nov). I still have the stones and will have to have another litho later this year. I had bi-lateral stents in from July 21 to Aug 18, so I just presumed I felt bad recovering from that. (That is no fun, let me tell you.) Anyway, GP sent me to Rheumatologist bcs my biggest complaint was muscle aches. Rhematoloist did TSH which came back < .1 (lab says should be > .3) and other than low Vitamin D and slightly low WBC, all else seemed fine, so back to the GP. GP referred me to endo who ordered thyroid scan and RAI Uptake (that was Thursday/Friday) and I got the diagnosis Tuesday. Here is what seems strange to me is that in Jan 2010, I was tested and had a slightly elevated TSH of 5.6. 4 weeks later it was down to 4.5 and no further tests. Last July (before my first lithotrpsy), my GP ran TSH and it was 2.1. When endo ran the test in Dec., it is < .1. Endo ran this yesterday and it is actually <.008 (yes 2 0's not just .08). T3 and T4 only slightly elevated. To the best of my knowledge there was no Thyroid Antibody test done. OK, so 1) How bad is this count? Is this severe hyperthyroidism or just mild? 2) Should I be asking for additional tests and/or seek a 2nd opinion or is this just pretty obviously Graves? (I know no one here is drs, but just from your experience. I don’t seem to have all the typical symptoms and I don’t want to do RAI if there is potential this is something else) 3) If I am going to get RAI, aren’t I supposed to have anti-thyroid meds first? Or maybe my count just isn’t that bad? I am just hoping for someone to tell me this seems relatively normal GD and just get on with the RAI. I am 44 y.o. female. Single no children. Type 2 Diabetic. Very overweight (though the Graves has helped that come down slightly). High cholesterol for many years. So no not in great health. At least the hyperthyroidism is something that I didn’t potentially do to myself as the other items are. Any help / reassurance is greatly apprecaited. And I promise to come back and post with the good that comes out of the treatment. :0)

[Kimberly]

#1170508

Hello – The RAIU test is generally considered diagnostic of Graves’ if the uptake is higher than normal and if it is distributed evenly throughout the thyroid gland. With thyroiditis, the uptake is generally lower than normal, and with overactive thyroid nodules, the nodules show up as tiny clusters on the scan with high intake.

Antibody tests (TSI, TRAb) can also be used to diagnose Graves’.

Keep in mind that there are three separate treatment options for hyperthyroidism due to Graves’ (Anti-Thyroid Drugs, surgery, RAI). All three have risks and benefits, so you definitely want to understand your options and make an informed choice.

One caution about RAI is if you have eye involvement — the latest guidance from the American Thyroid Association and American Association of Clinical Endocrinologists is that Anti-Thyroid Drugs or surgery are the preferred options for someone who has moderate to severe eye involvement, due to concerns over a worsening of eye symptoms. For mild eye involvement, the ATA/AACE guidance recommends steroid therapy in conjunction with RAI for patients who have risk factors such as smoking, excessive T3 levels, and excessive antibody levels. The guidance notes that steroid therapy should be “considered” if there is mild eye involvement, but no risk factors present.

Here is a link to the guidance document, and to a bulletin titled “Different Strokes for Different Folks” that does a nice job of sorting through the three treatment options.

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing. As an alternative, you can right-click the link and open it in a new tab or new window).

ATA/AACE Guidance:
http://thyroidguidelines.net/sites/thyroidguidelines.net/files/file/THY_2010_0417.pdf

“Different Strokes” article:
http://www.gdatf.org/about/about-graves-disease/patient-education/treating-graves-different-strokes-for-different-folks/

As for “pretreatment” with ATDs prior to RAI, this is somewhat controversial and varies by doctor. Some doctors believe it is helpful to bring thyroid hormone levels down *before* treating with RAI, while others believes that prior ATD use interferes with the effectiveness of the RAI treatment.

Sorry, I’ve probably made you more…not less…confused! However, you definitely want to understand all of your options before committing to a particular treatment choice.

[snelsen]

#1170509

Hi and welcome! You have had QUITE a year or two. I am sorry. I know that those stents are very uncomfortable, and not fun AT ALL!
Your questions and concerns are valid, and i found myself scratching my head, wondering, as you did, why RAI is planned so quickly. My own response for myself would be to decide to cancel the plan for tomorrow. THis seems too fast and emergent for a situation which probably is not emergency. Then regroup, perhaps taking your chart notes and labs to another end. and/or calling the office of the endo you have, simply saying that this is too quick, you do not regard it as an emergency, and you want to learn more about your options for treatment. it is so important for you to feel at peace about the treatment path you select, and the doctor you have. Frequently, these two are very related!

Kimberly wisely mentioned that there are considerations to ponder with each treatment, but one very significant one is the status of your eyes, when it comes to choosing RAI> The body of evidence has grown to be significant enough to include in your weighing of which treatment you decide to have.
Included in these comments, is having an endo who knows Graves’, is very nice and supportive, and respectful of your wanting to understand these options and to understand Graves’.

To honor your questions (:!
1. Can’t really be answered, how “bad” our hyperthyroidism is, is dependent on our symptoms (for instance, if our heart rate were 160, that is a serious problem, regardless of labs.) As you already know, (if you know the normal ranges of the TSH, T3 T4, then you know when a lab is high or low.
I think you are doing a very good job of answering your own questions. Since you have few if any symptoms, (I believe this is what you said) except a little weight loss, at this point, if you read about hyperthroidism from a reliable source, you don’t have a “classic case” of hyper symtoms.
2. I’d ask for a 2nd opinion, based on your concerns, your less than clear picture of Graves’at this time. YOu need a really nice endo. Many of them are very familiar with diabetes, but not very familiar with graves’. You might find this situation with your endo.
3. I think Kimberly addressed the relatioship of being treated with ATD’s first before RAI as opposed to moving right toward the RAI with no prior treatment. THis is something I know absolutely nothing about, including what Kimberly mentioned. Another good question for a new doc, or slug through and decide if you want to remain with this one.
DO WRITE AGAIN.
Shirley

[NLBatten]

#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.

[snelsen]

#1170511

Great! Seems like you found this forum at the right time for you. You are a different person now, that you have taken action, been heard, and understand the rationale. Go, girl, I am with you all the way!
I’ll be thinking of you tomorrow. I totally hear you, you have had enough surgical interventions for 3 or 4 people! i sure hope you get those stents out soon. I really look forward to hearing from you again.
shirley

[jrs1218]

#1170513

I am so curious how you are doing. I just had the RAI done on 2/24 also. I hope you are doing well!
Jenn

[NLBatten]

#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

[jrs1218]

#1170512

Hi Nancy!
I’m feeling really good too. I decided to stay at a hotel because I have dogs and a son. My son would stay away, but my little dog would not. I’m heading home tomorrow night although I am still going to do my best not to stand too close to my son for a few more days. I’m curious though, what did they tell you to do? They are so vague with information that it’s really frustrating.

In fact, this whole Graves thing has been really vague. The only time I have gotten good information is when I dug for it myself. (I was diagnosed in May/June and decided to try the Methimazole.) It wasn’t for me. I went hypo for 6 months and then finally took the smallest dose, cut it in half and took a half pill every other day (2.5mg every other day) and I still didn’t feel right. I am hoping that this RAI works better.

Glad you are feeling well. I’m tired too, but I have almost watched all of Grimm season 1. Work on Monday. No rest for the weary. I can’t imagine how you went from diagnosis on Tuesday to RAI on Friday, I would have freaked. (Especially with the mental state I was in at diagnosis.) I wish I had your courage to begin with. It would have taken me less time overall to recover.

Best wishes!
Jenn

[NLBatten]

#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!

[Bobbi]

#1170516

We all make the radiation dose into a really big thing. But it isn’t. Think of the dental tech that has to leave the room to turn on the xray machine to look at your teeth. It isn’t that the dose of radiation on that xray is so high as to endanger her/him. It’s that radiation doses accumulate over a lifetime, and today’s dental xray is added to all the dental xrays that he/she performs in the course of her job. THAT might put her over the top eventually, so she leaves the room. The recommendations are to help keep unnecessary radiation away from other people. That’s all. You are not glowing, and you don’t need to fret about the distance you maintain from your coworkers unless you have them very close to your neck. Don’t hold small animals or people against your neck for a while. Otherwise, relax. You are not Typhoid Mary.

[Bobbi]

#1170517

A P.S. In case your doctor didn’t warn you: about one week after RAI (give or take) as thyroid cells start to die off, they released their stored supplies of thyroid hormone into your blood, and you will feel really hyper for a while. It is not thyroid storm — in thyroid storm, thyroid cells are continuing to make hormone and dumping it into the body. In this case the cells are dying off, not making new hormone, so the amount of time you feel more hyper than usual is limited to a few days. Some of our doctors give us instructions for increasing the beta blockers for a while. These drugs help to ameliorate the feeling of being hyper, and they protect the heart. But not all of us need to be on these drugs, so if you aren’t on them, don’t worry. Just be prepared for more hyper for a bit of time.

[jrs1218]

#1170518

Thanks Bobbi! I’m not worried about work, just my son. I am following the strict guidelines that are suggested by the ATA just for my son and the 10 or so neighborhood kids that I love very much. I actually wish I did glow so that I could tell what needed cleaned and when I wasn’t dangerous to them anymore. Maybe they can work something into the treatment. I think it would be appreciated by many. My dose was 20 mCi so they say he shouldn’t sleep with me for 20 days. I’ll stick to that. It said 8 days for my hubbie. That isn’t too long to be inconvenienced if it keeps them safe.
I’m still feeling pretty darn good over all. I accidentally hit myself in the neck and I feel a little sore all over now. i don’t know if I knocked something loose or what, but I don’t recommend doing it and will attempt to not repeat that.
I’m going back to work in 9 hours. I’m not concerned about that.
The reason I asked what Nancy was told is that I just wanted to hear what someone else was told. There is a lot of bad information out there. My administering doctor actually had the gall to say, “Take the pill then I will tell you the bad news.” He was a horses ass. So full of himself. The bad news was that I couldn’t eat for 3 more hours. I should have kicked him. Had he done that when I was first diagnosed, I was pretty explosive and may have done just that.
So far my experiences with endos and hospial imaging doctors have been pretty bad. I like the girl (young doctor) I am seeing now, but her office is so screwed up they don’t know which end is up and they waste a lot of time and energy. (For example, I filled out my patient card and they entered my information into their system incorrectly, and when I asked them to change it, they entered it in wrong again only it was a different wrong way. I have been seeing them since September and they still don’t have it right.) My other favorite is the first time I went to have labs done and I asked the front desk what I needed to do and they said, “I don’t know.” Really?!? How can you not know? I have turned into a bit of a bitch through all of this. I 100% do not have patience for alot of things I used to be fine with.
I will be looking for my 3rd endo very shortly. I will probably start calling around tomorrow.
Once again, I will reiterate, I feel good. That’s the goal, right? Nancy, I hope you continue to feel well. Bobbi, I appreciate your insite. My RAI doctor did warn me to fill my beta blocker prescription, just in case. The bummer with me being hyper is that I don’t lose weight. I get so hungry that I gain weight! Drats! I’m glad this should only be a few days. I’m up 10 pounds or so and don’t want to add to that. I really like the freshness of cooking for the LID diet. I might stick to that only with iodine. i like making my own breads and not using boxes and cans to cook. Portion control for me is key. I need my stomach to shrink to half the size. So I can lose about 30 pounds.
I need to go to sleep. Best wishes to you both!!

[NLBatten]

#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.

[jrs1218]

#1170520

Hey Nancy! I wanted to check on you. We are just about 2 weeks post ablation. How are you feeling? I’ve been feeling pretty good. The shakes have started a bit and my heart pounds at night, but overall I am good. I accidentally throat punched myself a couple times. I don’t recommend that. I’ve been very tired the last 2 days. Not sure if that’s lack of sleep or lack of thyroid. Anyway, just wanted to see how you were doing. Talk to you soon! Best wishes!
Jenn

[NLBatten]

#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.

[Author]

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