Please help with Radioiodine Uptake Test

Hormones
1

Hello

I have a TSH 0.004. Other blood levels are within normal range. T3 is high normal. I've always been borderline hypo/have thyroid nodules for years. Went off armour thyroid a year ago and my TSH never recovered or rose. ENT had me in suppression. I have come to learn this was wrong as my initial readings were normal. 

Because of low TSH, my current doctor ordered a radioiodine uptake for next week. I have underlying past medical issues and have been researching the different types and doses of this nuclear pill.  Please post any info and or experience you've had with the thyroid scan. Any side effects?  Which type were you given? 131 is 100 times more potent than 123 from what I understand yet for a routine scan this radiologist says they use 131 with 200 mcg. Cancer is not a consideration. I've had biopsies and ultrasounds. 

I'm concerned this nuclear pill could trigger the return of:  (all resolved for years) tachycardia, occular migraines, tinnitus, vertigo.

I've been under great stress and trauma from the illness and loss of my husband last year. A week after he passed I began getting things I've never heard of like PVD (vitreous detachment/normal) but mine was accompanied by retinal bleed. Had it in both eyes. Labrynthitis causing severe and extended vertigo then dizziness for 3 months. Return of occular migraines one of which hit my speech center of brain causing stroke-like symptoms.  ER diagnosed another type of migraine aura.

I thought I was finished with all this illness stuff when a blood test showed the low TSH. I don't feel physically ill or hyperthyroid at all. I have no symptoms. I have read that chronic stress and trauma and virus can trigger thyroid issues. I've had all for the past year.

To the uptake scan. I believe the radiologist associated with my PCP group is using I 131. She mentioned 200 mcg.  Here is what I found.

Because123 I has a comparatively short half-life and emits only (gamma) photons, it is ideal for diagnostic testing.131 I has a half-life of 8 days and emits beta rays as well as gamma rays. This makes it useful for diagnostic and therapeutic purposes. But the use of131 I for routine diagnosis is discouraged because the radiation dose is about 100 times stronger than that of123 I.

Other noniodide radionuclides are used for the evaluation of patients with thyroid disorders include the following:

Technetium pertechnetate (99mTcO4): This is more widely used than 123 I because of availability and cost. [3] Unlike 123 I, which is both concentrated and organified within the thyroid, technetium pertechnetate is only concentrated in the thyroid.

Thank you for any advice, support, information. 

Jeannie 

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Mine was high and the doctor scared me into taking this test...its a test to see how much of your tyroid is working...or not working...was my understanding... I have no idea which pill/shot I had...the only thing for me with the test, was the affect it had on my purse...1000.00 co pay...

If your thyroid is normal...not sure why they are looking at your thyroid...I always thought the THS came from the pituitary gland....

Unless she thinks you have graves/hash which I hear you can take a blood test for those...which is what my doctor was looking for when she ordered the scan test... 

Sorry for your loss..

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Hi Rose

Thank you for replying. What did your uptake scan show as a diagnosis? I think he's looking for hyperactive thyroid. I have nodules which are scanned and biopsied every year. They are in fact shrinking. But the only problem is the low TSH level. I take tons of supplements and have read Alpha Lipoic Acid can lower TSH - as well as possibly zinc?  I stopped all suplements and had another blood tests. Waiting for results. But it's only been 2 weeks since first test so I don't think the #'s will be different.  

Wow 1000.00 copay?  Yow. That's high. 

I wouldn't mind having the test if it didn't involve radiation. I have a gut feeling my body is just coming down from grief / trauma / stress, which I've read can trigger the thyroid. I'd like to wait a few months as I have no symptoms but the doctors just want to forge on. 

I left a message for the radiologist asking what pill she was using on me. I have a few sensitivies which is why I wondered about side effects.

I'm happy you had none.

How do you feel? If your TSH was high that means hypo, right?  Are you treating for hypothyroidism?  I used to be then the TSH dropped, I went off meds but TSH never came back.

Did they test your blood for thyroid antibodies?  

hugs

Jeannie

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Hi Rose

My reply to your is holding for a moderator? I don't know why. I didn't add links etc. 

Jeannie

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Dont know why either....

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Hi...my blood work indicated I was hyperthyroid....so the doctor order the thyroid scan to see how much of my thyroid was working or not working and if I had graves and how far along the graves has progressed....my number was a 35...so I didnt require burning my thyroid out at this time or removing it...I believe it has to be closer to 70 or higher range for them to think about removing the thyroid...I then had the tyroid a-sound which showed I had two goiters as well...

My thyroid went back into normal range on its own...so Im not on any medication at this time...we are only watching the blood work...

I was more concered with my heart (papulations) and had the stress test on my heart to rule out any damage to my heart....which came back all good in the heart area....

I understand about the stress...my dad passed away in 09 and four days later my husband passed....I lost everything...even the dog/cat...had two son in JH school...6 months later my youngest had fallen out of a tree and had to have his neck fused...it was not a clean break in his neck but, would have lead to death or paralyzation...

I so understand stress....I did have a skin thing (inchy bumps) the dr said was from stress...Im thinking its when the whole thyroid thing began...I thought, it was just stress and menapause...as I was 54... 

the test was fine...the diet was a killer.... 

I believe the thyroid panel is the blood work that I had done....I go every couple of months for the panel... 

I do try and eat without gluten/sugar as I feel better when these items are not in my diet....

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Hi Rose

They finally did post my reply. Thank you for the info. I'm so sorry for your losses and all the stress you went through. I hope you're better now.

Were/are you treated by an Endo or Primary care dr?  I can't see an Endo till January so my PCP is ordering the uptake scan. I postponed it till new bloodwork comes back. Other than grief, I feel so normal now I hate to mess with anything. 

I'm happy your thyroid went back to normal on its own! Was it because the stress calmed down? Your uptake of 35 is normal I think. That's great. I hope mine comes back that good.

Did you have any antibodies in your blood for Hashis and/or Graves? What was the final determination as to why your thyroid was temporarily hyper? 

I appreciate all of your responses. Thank you so much!

hugs

Jeannie

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Thanks...life is good....I've since remarried and both boys are in college and doing well.... 

My Primary Doctor ordered the blood work....(my yearly visit) she noticed I had gained weight and looked tired....so she wanted to check my thyoid...she also had me come back in, to have it retested...since it was still high...she sent me to the endo...

No...35 is not normal....it just tells the doctor there is no need to destroy my thyroid just yet.....

I have Graves...

I'd hold off on the Thyroid scan tell you see a endo...you might not need to take one....the scan is to see how much of your thyroid is working...and a lot of the times T3/4 goes back to normal on its own.. 

Its called Subclinical Hyperthyroidism...

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I'm so happy to hear the words, "Life is good"  :-)  

Did you have antibodies in your blood?  

What food did you have to eliminate from your diet before the test? 

Sorry to be asking so many questions. This is all new to me and unsettling. You have tons of good info and are comforting. 

hugs

Jeannie

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Yes...it was high...

You have to eat a low iodine diet and no foods with red dye...like strawberries....no fish of any kind...

I was not fun....almond butter and those jewish crackers is pretty much what I lived on......no vits...

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Thank you Rose :-) 

Matzos lol  I was thinking of those with fresh ground no salt peanut butter.  I kept getting iodine confused with sodium. I think it's okay to have dairy with natural sodium if no iodized salt is added? 

I bought plain oats and bananas. Ahh red dye. I live on strawberries and greek yogurt and soy milk (shakes)  

Without my gallbladder it's hard for me to digest some veggies, especially if they're not really soft. 

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The lady that calls to set up the apointment for you...will give you a list of what not to eat....I dont think dairy is one of them... 

Not Allowed—Avoid These Foods and Ingredients

Iodized salt, sea salt, and any foods containing iodized salt and sea salt

Seafood and sea products, including carrageenan, agar-agar, algin, alginate, and nori

Dairy products

Egg yolks or whole eggs or foods with whole eggs

Bakery products with iodine/iodate dough conditioners or high-iodine ingredients. Low-iodine items are fine.

Red Dye #3, erythrosine (or E127 in Europe)

Most chocolate (due to milk content). Cocoa powder and some dark chocolates are allowed

Soybeans and soybean products (however, soy oil is allowed)

Iodine-containing vitamins and food supplements

If you take a medication containing iodine or red dye #3, check with your physician...

If you've had seafood within the last 6 months...you'll have to wait...

 

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Hi Rose

Thank you for the list. She said not to eat shell fish. I ate lobster on 9/28. She didn't say anything about 6 months.  Maybe I should call her. 

Just saw doc for annual physical. Everything is perfect other than the TSH which makes me very irritated.  He doesn't get why I don't have symptoms as my TSH is so low. He suspects my nodules or graves. If it's the nodule or nodules (they are big)  I'll have them removed. I don't want to do the radioiodine ablation. 

I wonder if adrenaline rushes and stress could activate the nodules? It's such a guessing game. Can't wait to know for sure. 

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Not all nodules means graves or anything else...other than you have nodules....I have friends with nodules and nothing else is wrong...yes the TSH is low/high...and blood count is off...doesnt mean anything is wrong..

I'd just wait for the endo....

She/he might only need to do an altrasound...and it might not even be a thyroid problem....could be a pituitary gland issue...

And if its graves...you can just take a blood test to determine that... 

I think your doctor is jumping the gun a little....I'd wait on the endo... 

 

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I was thinking of putting the test off but I'm nervous that if it is graves, I don't want to build any antigens or antibodies that could attack my eyes.

I do have TPO and TSI antibodies in my blood, above normal but not very high, and he said that could be from hashimoto's at one time. So he's not sure which is causing the absent TSH - either overactive nodules producing too much hormone or graves. It could be either.

Do you think I could have a suppressed TSH with nothing wrong as I don't have symptoms of hyper?  My only concern is protecting my eyes from antibody attack. My initial reaction was to wait a few months but he kind of made me anxious.

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Graves is a very very slow moving...it has the nick name Wax...

I'd wait on the Endo....there is nothing you can do with graves anyways...no treatment for graves...its for life if you have it...and just because you have graves doesnt mean you'll have ophthalmopathy...which only about 30% have some eye troubles...out of 1 million and eyes would be treated by an eye doctor...you can always go see one and ask him if you're worried about your eyes...

The eyes are a worry to me too...I have dry eyes and a sensation of grit or irritation in my eyes....and also sensitive to light....I had my eyes looked at....I do have the onset of cateracts (sp) ..she said nothing about graves...but, I'll go again in a few months to be sure and stay on top of it....As the eyes should be evaluated on a continuing basis by an ophthalmologist during the active phase of the disease...thats usually when your T3/T4 are high..causing hyperthyroid...having your thyroid removed does not take away graves.... 

Hashimoto's never goes away either...if you had it once..you still have it...its also an autoimmune Disease and has No Cure....same as graves...some people have both...usually hash goes with hypo...graves goes with hyper....

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I've seen my opthamologist 5x a year for 2 yrs in a row due to the PVD with retinal bleeds - unrelated to immune system.  I just saw him on 9.19 and he said all was fine. My PCP examined my eyes this morning and said he doesn't see signs - so did the surgeon last week, said they look fine.  So the eye disease progresses slowly too if you get it?

I have early onset cataracts too!  Other than that all okay.  30% sound like a high number! so it's 30% out of a million cases?  That would make it lesser then. I've read so many different things like 14 out of 100,000 - then I read 1 in 4 get it which totally freaked me out!  Then I read most people who get it will have only mild symptoms that resolve without treatment.  3 - 5 % would be serious. So who knows for sure. 

I know someone who had it bad and her thyroid is normal. She had to have the decompression surgery. It's really scary. 

My PCP said most cases develop after RAI! Imagine? Burn the thyroid and get the TED. I think it's because it dumps all the hormones into the blood and you're overwhelmed with antigens or whatever irritates the eyes. So I will never have RAI.  I'll take meds if I have to -  also take herbs. I ordered L-Carnitine, Lemon Balm & Bugleweed. I read they really work to bind the receptors and help raise TSH. 

Do you have symptoms now? I don't have any. It's just so strange and so sudden. I put a call into the ENDO to see if they would take me earlier and to ask what his protocol is and if he'd want the test anyway.  Part of me doesn't want the test but the other part just wants to know what the heck I have.

 

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I have no symptoms...other than I run hot a lot of the time....which drives me nuts...

and my eyes bother me....I think its just from the dust in the house...I keep a clean house...just its old and takes time to fix everything...we've replaced the heater and cooler...just not the duct work/vents...they need to be changed out....I'm sure it would cut down on the dust...

Plus the cataracts....not sure how they affect the eyes... j

I also have the bugleweed...I've not tried it yet....since my t3/t4 are normal I didnt want to mess it up....Do you use the bugleweed?  

 

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I ordered acetyl L-carnitine, lemon balm & Bugleweed. As soon as they arrrive and after the diagnosis I'm going to definitely take them.  I've been in touch with a naturopath who seems pretty good. I plan on seeing her. I'll see the endo too but not sure when. 

I'm happy to hear you belive your gritty eyes are dust. Sounds right. Also allergies can do it. Cataracts grow very slowly and eventually cloud your vision. But my DR said jokingly, by the time mine would be troublesome I'll not have to worry. hint hint LOL  

My T's are okay.  I need to raise my TSH.  Do you think the herbs interfere with TSH?  What's your level now?

I think we need to bind the TSH receptors (the overload our thyroids are making) ?  I'm trying to grasp this all. So if we bind them and stop antibodies hopefully we'll lessen chance of eye involvement, although some say it's separate issue.

I'm dropping into crisis mode. It's just been too much these past 2 yrs and this last year of me getting one thing after another, vertigo, retinal bleeds, occular migraines  -  I'm losing ability to cope. 

Are you coping ok?  Do you block it all out? I tried blocking Tom's death but honestly I think it made me worse.

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Rose ... I meant to say do you think the herbs interfere with T's not TSH.  They do hopefully lift TSH.  My head is all over the place.