# really confused, scared...could use some support



## pandatx (Mar 27, 2013)

Just diagnosed with Graves. Had the RAIU test done at the Endocrinologist and got the scan today. Showed 74.4% uptake. She said I had 2 choices: the medication Methamazole or the RAI treatment. She was leaning toward the RAI and talked about the side effects of the medication (scary low white blood count, etc) but did more bloodwork today to see if I had certain antibodies and also to see if my regular thyroid levels TSH and free T4 had changed at all. I don't know what to do. I asked if there were any natural treatments, diet, supplements that might help and she said that if I chose to go that route she'd insist on a second opinion and also make me sign something saying I understood the risks I was taking with my heart and bones (already have mild osteoporosis and not being medicated). I don't know what to do. She said she'd like me to decide in a week. She also said the medication wouldn't help with possible goiter or the opthamologic stuff? But then I read online that you shouldn't rush to treat this and that it can resolve itself? I'm so scared and confused. I would appreciate hearing anyone's story or possible suggestions. Thank you so much in advance. xo Amy


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## Andros (Aug 26, 2009)

pandatx said:


> Just diagnosed with Graves. Had the RAIU test done at the Endocrinologist and got the scan today. Showed 74.4% uptake. She said I had 2 choices: the medication Methamazole or the RAI treatment. She was leaning toward the RAI and talked about the side effects of the medication (scary low white blood count, etc) but did more bloodwork today to see if I had certain antibodies and also to see if my regular thyroid levels TSH and free T4 had changed at all. I don't know what to do. I asked if there were any natural treatments, diet, supplements that might help and she said that if I chose to go that route she'd insist on a second opinion and also make me sign something saying I understood the risks I was taking with my heart and bones (already have mild osteoporosis and not being medicated). I don't know what to do. She said she'd like me to decide in a week. She also said the medication wouldn't help with possible goiter or the opthamologic stuff? But then I read online that you shouldn't rush to treat this and that it can resolve itself? I'm so scared and confused. I would appreciate hearing anyone's story or possible suggestions. Thank you so much in advance. xo Amy


You have a good doctor and clearly she cares for you. Had I known, I would have never gone through 18 months of torture w/Graves'. I would have had it yanked forthwith. I kid you not.

This is scary; I could not agree more and I feel for you big-time having been where you stand right now.


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## pandatx (Mar 27, 2013)

Thank you so much for replying Andros. What treatment did you opt for?

Its scary to read about the radioactive iodine treatment. My doc says it will only affect my thyroid but then I read other stuff online. Maybe I should ask about surgical removal?

I am so confused. I don't know what to do. Prior to this I was really active. Now she doesn't want me doing any vigorous workouts for the time being which isn't helping with my stress. I'm tired (not overly energetic) all the time. My arms feel so weak. I dont' sleep. I can't remember anything. This sucks so much. I don't know how to make this decision.


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## jsgarden1 (Aug 29, 2009)

I'm on the yank it out side. Mine's coming out next Tuesday. I did the meds, had the eye involvement, had it go stable for 2 years and then it came back with a vengence. Even with the meds my resting pulse at the doctors was 98. My BP was 158/90....I've always been 110/70 or close to it. The doctor is hoping once it's out and I'm properly medicated, the BP and pulse will calm down too. My understanding (and someone correct me if I'm wrong) is RAI is not the way to go with eye involvement. Meds didn't help my goiter at all either. Good luck on your decision.


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## webster2 (May 19, 2011)

I had mine removed. I have mild osteoporosis from being undiagnosed for a long time and very mild eye involvement on my left eye. I have never regretted having my thyroid out.

It does suck, and you are at the scariest part of the journey. There's a lot of really great info on this board. Read through the Graves section, and ask lots of questions. Be kind and patient with yourself, this feeling you have now isn't permanent and does get much better.


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## pandatx (Mar 27, 2013)

thank you for responding. I almost cried (again) when I ready your reply. You are right, I need to remember that I won't always feel this scared. I'm just processing it all right now. It helps so much to know that its normal to feel scared. That I'm not just being a big wuss.


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## JPGreco (Mar 2, 2012)

Hi Pandatx, I recently went through what you went through. I was diagnosed with Graves last year and since then have had 2 rounds or RAI treatment. My first uptake scan was 70% and I turned out to be allergic to the methimazole, so I know all about the chaos Graves causes in your life.

If you are already displaying signs of Graves Eye Disease, I would recommend against the RAI since it can aggravate it. Also, since I have not seen your labs, I had to have the RAI twice as I said, and my TT4 level was through the roof.

Now, surgery is an option. It just seems to me to be the easiest route for severe graves and hashi's disease, as trying to regulate the thyroid levels seems near impossible and with RAI you usually end up hypo anyway. So basically, 2 of the three options lead the same end results and two may or may not work. Only 1 is a sure bet to treat and that is surgery.

Me, I have no eye involvement or insurance, so I opted for RAI. But I'm a little sick in the head apparently and just didn't care about the RAI and apparently could function normally even though I was so hyper that my doctor was threatening to send me to the ER for emergency surgery. With that being said, after this second round of RAI, if it doesn't take, my doctor will not give me a 3rd dose and I have no option but for surgery. So even for me, over 2 years of treatment, I still may end up having to have surgery. Had I known, I would have just skipped all the BS and gotten straight to it.

Now, there is some evidence for homeopathic treatment, but it takes several years to be effective and there is no concrete evidence really. I did find medical study excerpts from medical journals on the effects of certain things on the thyroid, but with how easy surgery can be and if your doc is good, managing levels post surgery isn't all that difficult.

If your doc refuses to listen to how you feel and focuses only on lab results, titrating after surgery can be a real PITA. If they listen, its not that bad.

Best of luck to you.


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## pandatx (Mar 27, 2013)

Thank you JP for sharing your experience. Right now I'm not showing eye symptoms but I'm terrified to wait until they develop. I'm so mixed up, overwhelmed, confused. If you take the medication, does it take care of the eye issues too? Is the only way to avoid that by doing surgery? My Endo didn't even mention surgery. Right now I'm waiting for the lab results they took today. Hopefully will know more by the end of this week. My TSH taken 2 weeks ago was .008 and my iodine uptake was 74.4%. I guess you say surgery over RAI b/c its quicker and more certain, yes?

I just feel sick tonight. I know I'll adjust. I have to. I just need to process it all and its just a lot to take in. I wasn't expecting this. I really thought it was thyroiditis. This really sucks.

Can I ask about side effects from the RAI? Was it scary?


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## JPGreco (Mar 2, 2012)

The eye issues are not a guaranteed symptom. As I said, I've had 2 doses or RAI and I've been hyper for at least 10 years. I've been EXTREMELY hyper for at least 2-3 years, where my TT3 levels were several hundred units outside of normal and actually more than twice the normal range; I was around 400 where normal is 100-180. Through all of that I never had issues with my eyes, and only after RAI treatments did I have any skin issues, which was mild. So again, I'm kind of a freak of medical science. I played soccer 3 times a week through all of that where normal people can barely function. I actually do not qualify for clinical diagnosis of Graves since I do not display enough physical symptoms, even though my blood tests and scans say its 99% Graves. I never had TSI tested to be 100% sure. But again, I'm a medical weirdo. My pulse used to be so low it could only be found in my neck or with a stethoscope, but I was in very good shape (back in the day). Hell, even through all of the crazyness, my blood pressure stayed in the "very good" range, even with my heart beating 120 times a minute.

For me personally, RAI makes me sick. The docs say its not possible, but after both tracer doses and both treatment doses, I came down with a head cold, so for me, that is a side affect. Also, as I said, I got dry skin on my shins post RAI, very mild. Normal side affects are an increase in all symptoms though since the thyroid cells that are killed by the RAI dump their hormone stores, so you may feel worse, but its to be expected. Also, your thyroid may swell. Mine did the first time a fair amount, noticeable to me, but not my friends unless I pointed it out. The second time so far no swelling. Other than that, the LID was the most annoying aspect of it all. Contamination precautions were simple for me since I'm a single guy.

My tsh was undedectable through my lab at less than .01.
My TT3 and FT4 were both more than 3x the normal range before I started it all, recent tests say they are more than 2x the normal range. I have my first post RAI blood test the end of this month to see what affect this treatment has had.

I'm not 100% recommending surgery over RAI, however, it is something to discuss with your doctor based on your results. Surgery is a guarantee. RAI I've had 2x. Andros has had it 3x. So you may need more than 1 dose, that's all. From my research, it seems surgery is actually the easier route because A) its a one shot deal and B) you start your replacement hormones and don't have to try to balance them with a whacked out thyroid. This is even more prevalent in hashi's where the thyroid randomly produces hormone. How they even try to medicate is beyond me.
However, surgery has its down side. A) its surgery and has its risks too. B) Recovery time. RAI a few days you're good. Surgery may take a while for your neck to feel better. For me, it was a question of money. I've spent less than 500 dollars on RAI. Surgery is several grand and I don't have insurance. That was the decision maker, otherwise I would have just said F* it, and gotten it yanked out.


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## pandatx (Mar 27, 2013)

i hear ya. Thank you, again, for sharing with me. Helps to not feel so freaked out. My heart rate is through the roof so they put me on beta blockers. That's actually what sent me to the Dr in the first place. I'm in really good shape (for my age...hell, for any age) and I eat pretty clean and my normal resting heart rate is not 130, you know? So now my heart rate is controlled with the medication (that I SO did not want to take...originally would only agree to 1/4 of a pill) but of course that isn't solving the problem. Will definitely see what she says about surgical option. Also, have an appt with a second Endo at the end of the month. Still deciding whether to keep it or not. Figure it can't hurt.


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## JPGreco (Mar 2, 2012)

Sounds like your endo isn't bad if they listened to you. But can't hurt for second opinions.

I used to be on antenolol, and I'm now on propanolol. The propanolol I'm on 60mg a day, though the last few days I've been missing doses and my heart rate hasn't climbed and for the first time I recently counted it in the 60's again, so I'm hoping the second dose took. Seems like most all of my physical symptoms are subsiding. I can't really be sure since its been so long that I've been hyper, I really don't know how my body would have changed normally from 25-32, so I can't be sure if the new normal is still symptoms or just me.

So rest easy for now. As crazy as it all sounds, its actually very treatable. And remember, the vast majority of what you'll find online are people's bad experiences. Most people don't post good news, and that's true for almost everything.


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## pandatx (Mar 27, 2013)

thank you so very much for helping to ease my anxiety today. I really, really appreciate it.

Amy


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## HotGrandma (Sep 21, 2012)

Sorry you are riding on the same bus I'm on too. I highly advocate a drug called alloputinol fot the eyes. Hopefully this is this ips the link. If not its in this forum under graves named GED and Allopurinol. http://www.thyroidboards.com/showthread.php?t=7005. I firmly believe this is what made my eyes go cold. I also believe if I would have started this drug sooner I would not need surgery now.


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## pandatx (Mar 27, 2013)

Thank you HotGrandma. How do I know if my eyes are involved if they aren't showing symptoms? Is this something one of the blood tests would show? Which treatment option did you choose. Of course this was on my mind the second I opened my eyes this morning.


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## HotGrandma (Sep 21, 2012)

Graves and Graves eye disease are two separate diseases. They are both caused by the antibodies. Eye involvment for me started as redness in one eye I thought it was screen burnt from the computer. Over time both eyes became red, watery, irritated like something was in them. Then the swelling was so bad that both eyes popped out of my head. So if you have eye involvemenmt you will know. Its important to have your antibodies tested (TSI, TSH receptor ab, TRAB) those are the major antibodies that relate to eye disease. Before RAI or surgery these antibodies need to be under control or RAI and surgery could trigger the eye disease also called GED, TED and GO.

Sorry you are on this bus. Its a slow ride, eventually you will get to your destination.


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## pandatx (Mar 27, 2013)

Thank you so much for explaining. This is scary


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## kathlav (Mar 26, 2013)

All my endo has said everytime I have mentioned possible eye symptoms is 'oh that's interesting' so have first of all booked myself in for a routine eye test with an opthamologist at Boots chemist on Friday. Don't know if they will be specialised enough to spot anything especially as at the moment things are settled except for a watery left eye, But maybe he/she could refer me to someone who could!

I really don't want to make any decisions about what course of action to take until I know for sure if the eyes are symptomatic.


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## Andros (Aug 26, 2009)

pandatx said:


> Thank you so much for replying Andros. What treatment did you opt for?
> 
> Its scary to read about the radioactive iodine treatment. My doc says it will only affect my thyroid but then I read other stuff online. Maybe I should ask about surgical removal?
> 
> I am so confused. I don't know what to do. Prior to this I was really active. Now she doesn't want me doing any vigorous workouts for the time being which isn't helping with my stress. I'm tired (not overly energetic) all the time. My arms feel so weak. I dont' sleep. I can't remember anything. This sucks so much. I don't know how to make this decision.


You would be better off with surgical removal; I had RAI but that is because I had no choice at the time.

Take your time making a decison and we are definitely here to answer your questions w/credible information.


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## HotGrandma (Sep 21, 2012)

kathlav said:


> All my endo has said everytime I have mentioned possible eye symptoms is 'oh that's interesting' so have first of all booked myself in for a routine eye test with an opthamologist at Boots chemist on Friday. Don't know if they will be specialised enough to spot anything especially as at the moment things are settled except for a watery left eye, But maybe he/she could refer me to someone who could!
> 
> I really don't want to make any decisions about what course of action to take until I know for sure if the eyes are symptomatic.


kathlav

If your eye's are involved you will know. I went to seven different eye doctors that all said "dry eye" "allergies" "environmental". Finally when my pressures were 31 and 33 they said "glaucoma". It wasn't until I had the TSI antibodies tested and they were high that any doctor listened to me that there was something more serious going on that dry eye.

Everyone is different. You could only have involvement for a few weeks to years. Have you had any antibody tests?


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## Andros (Aug 26, 2009)

pandatx said:


> Thank you JP for sharing your experience. Right now I'm not showing eye symptoms but I'm terrified to wait until they develop. I'm so mixed up, overwhelmed, confused. If you take the medication, does it take care of the eye issues too? Is the only way to avoid that by doing surgery? My Endo didn't even mention surgery. Right now I'm waiting for the lab results they took today. Hopefully will know more by the end of this week. My TSH taken 2 weeks ago was .008 and my iodine uptake was 74.4%. I guess you say surgery over RAI b/c its quicker and more certain, yes?
> 
> I just feel sick tonight. I know I'll adjust. I have to. I just need to process it all and its just a lot to take in. I wasn't expecting this. I really thought it was thyroiditis. This really sucks.
> 
> Can I ask about side effects from the RAI? Was it scary?


See if you can go talk to an ENT; they do this stuff all the time.


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## kathlav (Mar 26, 2013)

Hi HotGrandma,
How are you doing? We have chatted about this before.......I have been diagnosed with graves in March 2013 after being treated since august 2012 for hyperthyroidism thyroiditis (mistakenly).Tried for a remission unsuccessfully(obviously)......
I had a RAIU early March 2013 and was told I have Graves although no antibodies have been tested!
Except TPO which were elevated.
The reason I went to the doctors in the first place was because since probably around Oct 2011 my eyes have been sore, puffy, watery (left eye in particular) they looked so different to me that I started researching plastic surgeons to have the eye bags removed. 
Dec 2011 after taking asprin one eye swelled very badly, this happened several times after that but I hadn't made the link with the asprin.
My doctor checked my albumen (edema) thinking it was related to my ulcerative colitis, which it can be.
Eventually after about six eye swellings I finally made the asprin and nurofen link, phoned doctor told her I thought I was allergic to asprin(had never been before, but....)

I had been having lots of hyper symptoms and after coming back from a holiday in teneriffe july 2012 looked at all my photos.....I looked sweaty and surprised in all of them!
I had been having problems with trembling hands, weightloss, insomnia, itchy, sweaty, forever hot, always hungry, forgetfulness, high blood pressure ,lost my period completely...thought menopause.
I was looking up all symptoms of hyperthyroid and saw the TED link...went to doctor who did FT4 and TSH.
FT4 64.5 (12-22) and TSH <0.01(0.3-5.0).
since being on the carbimazole and propranolol, the pressure behind my eyes seemed to get better, the swelling under the eyebrow ridge lessened, the staring quality subsided.
Still get the watering and have super baggy eyes...but I have no visual problems, very lucky. Still don't know if this is TED or just thyroid related eye symptoms, it's only mild if it is.
So next move eye test!


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## HotGrandma (Sep 21, 2012)

Kathlav

Good Grief are you hyper.

I would really recommend you have your antibodies tested. TSI, TSH receptor ab, and or TRAB. Those are the antibodies that attack your eyes. As long as those are active your eye's could be succeptible. Caution, if your levels go hypo those antibodies can still aggrivate the eyes. Without those nasty antibodies under control the TED does its own thing, no matter what an eye doctor does, the antibodies are in control.

Me...............05/02/2013 "eye muscle" surgery. Whooho. But what will I do without 2 of me, no more double. I hope at least.


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## kathlav (Mar 26, 2013)

Hiya HotG,

yeah my levels are still a bit hyper now as I had to come off the carb for a while so they could test my blood for neutropenia, went straight back on after just over a week FT4 last test done was 26.8, TSH still supressed. Next Endo appt 2nd week in May bloods to be done a week before. The 64.5 FT4 was when I was diagnosed in Aug 2012.

I shall mention to her once again about getting TSI or TRab to be done but everytime I mention it she say's it's not necessary as she has a diagnosis....surly she needs to know the levels to know when to try for remission. I know she is a diabetic endo and not specialising in thyroid problems /maybe I will have more luck convincing the opthamologist to do blood tests for antibodies? Can they order bloods to be done?
TPO antibodies last tested were 137 (<50) done back in 2012

Is that surgery for 2nd May 2013? or have you had it done already HG?


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## HotGrandma (Sep 21, 2012)

2nd of May 2013 (in 3 weeks) is the surgery.

You could also go to labs on line and order the antibodies yourself. Your Primary care doctor can also order them. Ask your endo flat out how she can be sure your treatment is on the right path is she doesn't have all the information. The complete picture. Maybe she'll go for the TSH receptor ab (antibodies). Its faster and cheaper. Then you could do like I did. Doc said my labs were within range. Low side or bottom, so I added TSH to his lab. Wrote it on the lab draw myself. What difference does it make I have to pay for it anyway. TSH was 15.9, so now he believes hypo.


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## kathlav (Mar 26, 2013)

3 weeks is not too long to wait now,

Bet you can't wait, long time coming huh?

Unless I go private, which could be rather costly all treatment in the UK is on the NHS, I think the attitude is 'well you're not paying for it ,you can't dictate what we test for'.

And if I start down the private route there is no going back to NHS, so if my symptoms worsened ..enough for me to have to stop working i' m stuffed.

Don't get me wrong I think the NHS is wonderful, just over burdened and underfunded.

I am going to try next endo appointment to ask for TRab, my GP does not want to go over Endo's head. Urrrrhhh Hierachy hey.

I shall have my fingers crossed for you in the up and coming weeks, you and your double! x


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## AmyT (Apr 3, 2013)

I had mine removed when I found out I had Graves. I think it was the best choice for me, it seemed like the quickest way to nip it in the bud. And I was especially glad I chose that option after I met with an eye doctor to monitor for graves eye disease. He told me there is a greater risk of having eye involvement if you go the radiation route. His explanation had something to do with the eye tissue being similar enough to the thyroid that when the thyroid is slowly being destroyed, the graves antibodies go nuts and attack the eyes instead. I'm sure there is a more clinical explanation, but that is how he dumbed it down for me.

Good luck with whatever you decide!


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## kathlav (Mar 26, 2013)

Thanks AmyT,

My first idea when I started reading up on Hyperthyroidism (even from the beginning I thought I had Graves even if my endo thought it was thyroiditis) was I will give it a chance to go into remission on it's own, until my endo decided my thyroiditis(s******)was ready to go into remission after 6/7 months. So I had to start all over again trying to get out of my hyper phase.....the high BP 160/110 and heart palps are scary and the insomnia is draining.
My idea now is that I give it the 2 years for possible remission, then get a Total thyroidectomy, my endo may have a different idea....in fact I am positive she wants me to have RAI.
I am getting tired of putting off things in life, would love to return to the gym, classes I had been doing Open University courses before all this started, my brain just about keeps up with work and memory has all but fizzled away.
I hope one day to get back to the old, happy me, and to stop being such a 'moaning minnie', as my hubby calls me.
If anything starts going downhill fast this plan might change, will get this opticians appointment out of the way, and then endocrinologist apt and see what she say's.

After that who knows? How are you now? did you settle quickly on levo?


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## AmyT (Apr 3, 2013)

kathlav said:


> Thanks AmyT,
> 
> My first idea when I started reading up on Hyperthyroidism (even from the beginning I thought I had Graves even if my endo thought it was thyroiditis) was I will give it a chance to go into remission on it's own, until my endo decided my thyroiditis(s******)was ready to go into remission after 6/7 months. So I had to start all over again trying to get out of my hyper phase.....the high BP 160/110 and heart palps are scary and the insomnia is draining.
> My idea now is that I give it the 2 years for possible remission, then get a Total thyroidectomy, my endo may have a different idea....in fact I am positive she wants me to have RAI.
> ...


I just changed to armour...I never could seem to get back to normal on synthroid - but I have refused to let it stop me from living life...even if sometimes life just exhausts me. I do crossfit, ride and show horses and work a full time job...which would make even people with a thyroid tired...lol...

Sometimes I think I may never get back to what used to be my "normal" and sometimes I question whether I really actually remember what that felt like...so I'm hoping that once I finally get situated on whatever meds finally work the best, I will learn to love my new "normal".


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## webster2 (May 19, 2011)

I have learned to love my new normal...it is the currently only game in town.


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## kathlav (Mar 26, 2013)

The new normal sounds like the place to be!

Happy for you both...and so pleased HG is getting her surgery soon.


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