[Allison]

#1018508

Hi Everyone,

I have been recently diagnosed with Graves disease I go in for the Radioactive Iodine Treatment tomorrow. This whole diagnosis process has been a whirlwind. I originally went to the doctor because I have been depressed. The Dr. ran some thyroid tests told me that I had an overactive thyroid. She then had me do a Thyroid ultrasound, result was I have a multinodular goiter (whatever that is) then sent me to an Endo. My endo did another thyroid test. Labs were
Free T3 4.86 Reference 2.77 – 5.27
Free T4 1.15 Reference 0.78 – 2.19
TSH <0.003 L Reference 0.465 – 4.680
Thyroid Stimulating Horm Receptor 1.02 Reference <=1.75
Then my endo Scheduled a thyroid uptake and Scan Results there said Hyperthyroidism Multiple Thyroid nodules following administration of 265 microcuries I123 the 4 hour uptake was 21% (normal 5-20%) and the 24 hour uptake was 40% (normal 7-35%)
I chose to do the Radioactive Iodine Ablation. I guess I don’t understand what this all means. I haven’t been told a whole lot other than I do have a mild form of the eye bulging. Any help suggestions would be greatly appreciated.
Thank you

[Ski]

#1065354

Hi Allison,

Just based on the fact that you have mild eye symptoms, I would say you may not want to choose RAI treatment. You can take a little time to examine all three treatment options and decide for yourself which you prefer. The RAI has a slight potential of "temporarily worsening" your eye symptoms, and depending on the level of your symptoms now, you may want to AT LEAST explore the option of taking prednisone (oral steroids) a little bit before and after the RAI (a few weeks in total), to minimize the possibility of worsening symptoms. Prednisone certainly carries its own side effects, so typically that option is reserved for those who have severe eye symptoms and have no other choice for treatment, but in any event, I wouldn’t rush to the RAI before you REALLY understand what’s going on, where you stand, and what your options are.

Nothing happens quickly while we recover from the hyperthyroidism associated with Graves’ Disease, so jumping on this and having treatment tomorrow isn’t likely to result in a "really quick" process of healing. You have the option to choose ATDs ("anti-thyroid drugs," either methimazole or PTU), which are medications that can keep your thyroid hormone levels in check. In about 40% of patients, they can take these medications for one to two years and achieve a "remission," meaning they have at least one year with normal thyroid hormone levels after they STOP taking them. Even if you do not achieve remission, these can be used longterm to control your thyroid hormone levels. The final option for treatment is thyroidectomy, surgical removal of the thyroid, which is perfectly valid and many have chosen it.

No need to rush, though treatment of some kind is essential. Unchecked, this can be very dangerous. ATDs can bring your thyroid hormone levels back into the normal range without permanently destroying your thyroid, so you can get your "mind" back, as it were (hyperthyroidism makes it VERY difficult to think rationally), and put your thoughts together to find out what you’d LIKE to do.

[sutan351]

#1065355

Hi Allison,

I still remember when I was first diagnosed….the endo we saw initially immediately recommended RAI. I was still reeling from being diagnosed with Graves and TED (I had the bulging eyes and double vision)and felt I needed time to understand what I had and A LOT more information before proceeding. I waited a while (over 2 1/2 years) because I was dealing with the eye issue and wanted this to run it’s course. I tried the ATD’s and was never quite able to stabalize on my own. The second endo I went to was much more understanding and willing to let me elect RAI when I was ready. When I did go through with the procedure I felt much better about the decision. Your timing may be different and many do chose RAI soon after diagnosis …but no need to do that immediately if you feel you need more time. Graves is a disease of patience! Take time to educate yourself and use all the wonderful resources/info from this board.

Best of luck and remember to be kind to yourself during this journey.

Sandy

[Allison]

#1065356

Thank you for all of your input. I have gone ahead and taken the RAI today. So far I have just been really tired. I slept for a couple of hours. Its kinda lonely around here. I have a 2 year old who is with my sister while I go thru this. I have a very supportive family which really helps. Now its the waiting game to see if this worked or not.

[Allison]

#1065357

Hi,

I do have a few questions my dr. hasn’t said if I need to change my diet at all or not I see him again on the 8th. But until then does anybody know?

[Ski]

#1065358

There’s not much in diet that is necessary to change at this point ~ you may want to skip seaweed for a while, while your thyroid is still working, because it’s the only food with enough iodine in it to be worrisome.

A word of caution ~ the waiting can be a VERY long process, not just a week or two, not even a month or two. You need at least six weeks just to flush out the excess thyroid hormone that existed in your system on the day you took the RAI, and the RAI can continue to affect your thyroid function for up to six months (though it does the bulk of its work in the first six weeks), so your levels can be fluctuating throughout, and that’s pretty hard on your body too (even if they’re moving in the right direction).

At first, some patients experience a short period (a few days) where they feel even more hyper than before ~ it happens because the thyroid cells that are dying have also been storing thyroid hormone, so when they are destroyed, that hormone gets pumped into your system. It can happen any time in the first few weeks, but it is transient. If you feel particularly anxious, call your doctor and see what they say. Sometimes the doctor will give a few days’ worth of blood pressure meds to relieve those symptoms. Sometimes it’s not a concern. Sometimes it doesn’t even happen.

Keep close at hand a list of classic hypothyroid symptoms, so that you can evaluate the way you feel and get your blood tested if you believe you’ve slipped into hypothyroidism. Look for at least four or five of the classic symptoms, happening to you regularly, before you ask to be tested. I went to the lab WAY more often than I needed to, but I didn’t really have an idea of what to look for either. I felt "slower," so I got tested, but I wasn’t truly hypo for quite some time. A standing order at the lab can help because you can get tested whenever you believe you’ve hit that point, but the doctor may rescind it if you use it too often.

Beginning the replacement thyroid hormone as soon as you DO read hypo is important to shortening the recovery curve. Your lab results can lag behind your symptoms, and then it takes a while for the replacement to build UP, so as I mentioned before ~ all a great big waiting game. But the advantage you have is this: you got a diagnosis and have begun treatment. There are those who are ill and don’t even know what they’ve got, because their doctor never bothers to do a simple blood test. So, as lousy as you may feel in the coming weeks, remember, at least you’re on the road to healing and health. You WILL GET THERE. I promise. ” title=”Very Happy” />

[Allison]

#1065359

HI Everyone
I thought I would update you on how things are going. So far I took the RAI treatment on the 3rd of June. I saw my Endo one week after that. He wanted to do a follow up, he said that most people have symptoms about that time. I however have had no changes yet, some minor throat irritation but that is all. I have been doing pretty well otherwise. I go back to see the Endo in 4 weeks and every 4 weeks after that until I go hypo. and we will go from there.

Thanks for all your input…. I will keep you updated on my progress as I go.

Thanks again

Allison

[mamabear]

#1065360

Keep up the good work, keep us posted!!!!

Great for you!

[Allison]

#1065361

A new update:

Well I have gained a little bit of weight back I don’t know if it is due to being home for 8 days with not much to do or if I am starting to go Hypo. I am starting to loose a lot of hair too. What types of things should I be looking for as I go Hypo?

Thank you

[Kimberly]

#1065362

Hi Allison – Symptoms of hypO vary from person to person, but a few of the common ones include fatigue, joint pain, weight gain, slow pulse, hair/nail changes, intolerance to cold, and constipation. These symptoms aren’t a 100% guarantee of being hypo though. I’ve read many stories from patients who had RAI or thyroidectomy and were *sure* they were hypo, only to have the labs show that they were in the normal range. Please be patient with yourself as you go through this process.

As for the hair issues, many of us experience hair loss when our levels are moving either up or down. This usually resolves when levels begin to stabilize again.

Best of luck!

[Allison]

#1065363

Hi Everyone,

I am doing well. I just saw my endocrinologist Dr Hao. The first set of Lab results after having RAI are as follows.

Free T3: 7.90 reference 2.2 – 4.1 pg/mL
Free T4: 2.90 reference 0.85 – 1.71 ng/dL
TSH: <0.02 reference 0.27 – 4.20 uIU/mL

My results just before the RAI treatment were:

Free T3: 4.86 reference 2.77 – 5.27 pg/mL
Free T4: 1.15 reference 0.78 – 2.19 ng/dL
TSH: <0.003 reference 0.465 – 4.680 uIU/mL

I continue to have no problems. It seems like everything is still the same as before. I am still on Propranolol 20mg twice daily. My next visit with Dr. Hao is in September.

Allison

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