I NEED ADVICE ABOUT RAI ABLATION!

[Shari4]

Hey all!

I just came home from the Endo.  My blood tests for May and July are as follows:


Blood Tests - May 8, 2008:

TSH, 3rd generation  0.01 Low
T4 Free  1.7 Normal (range is 0.8-1.8)
T3 Free   462 High (range is 230-420)
Thyroid Peroxidase AB <10 normal
Thyroglobulin  AB <20.0  Normal

Blood Tests - July 9, 2008

TSH, 3rd generation  0.01 Low *Same
T4 Free  2.2 High (range is 0.8-1.8)  *Almost Doubled
T3 Free   703 High (range is 230-420) *WAY Higher
Thyroid Peroxidase AB <10 normal  *Same
Thyroglobulin  AB <20.0  Normal *Same

Endo wants one more blood test in two weeks, and then wants to do RAI Ablation.  I think I caught a fly in mouth as it hung open...  EVERYONE'S INPUT IS APPRECIATED!!!!   Stella, expect a call from me tonight!!!

Thank you all,

Shari

[AR-10]

Why is anyone pushing ablation on you?

Do you have a diagnosis of Grave's?
You show no test for TSI.

Do you have a diagnosis at all?
Have you been put on some type of thyroid med?

What is the reason the Endo wants to kill your gland?

[Shari4]

Whew, I was hoping you'd be here.  I only have a diagnosis of Hyperthyroidism.  I have had no test for TSI.  I have never been on Thyroid meds.  The Endo just said, "You are very Hyperthyroid, and we need to treat it with ablation".  I said, "What about Tapozole"?  She said "No - stay off the internet".  That was that!  I am TOTALLY FREAKED OUT!  I feel FINE!!!!!  Please tell me what to do....

[Shari4]

And where on earth is Smilerdeb?  She had RAI, and she hasn't been on in days!!  :(  

[AR-10]

I honestly don't know what to tell you.
You are wanting to get pregnant, aren't you?

If you have Grave's disease, which you don't know, being pregnant is difficult. If you have Hashimoto's, which you don't know, being pregnant is difficult. If your thyroid goes crazy during pregnancy you will have problems.

There are several things to consider. I think you need to know a lot more about your thyroid condition before you can make an educated decision on whether you want to destroy an organ AND leave it in your body.

You're Hyper. OK...why are you Hyper? Grave's? Thyroiditis? Hot nodule? Anything suspicious of cancer in there? Have you had an ultrasound?

My thyroid was "unremarkable" in composition, so I let them do RAI because keeping the gland was not on the list of options. If there were any nodules or funny bits in there, I would have pushed harder for surgery.

It sounds like your doctor is not giving you any options, just an order. It also sounds like you have not had enough testing to even have a proper diagnosis or a prognosis of future expectations.

What if you blindly follow the doctor's orders and then find out in three years you have thyroid cancer that was not caught early because somebody didn't think testing was important?

What if it's not autoimmune at all, but a temporary condition?

Did the Endo tell you that since you're so Hyper it probably won't work completely the first time? I'll bet that part didn't come up.

I would get a second opinion. I would want lots of conclusive test results and a trial run on PTU or Tapazole before I let them destroy an organ and leave it in my body.

[Shari4]

Thank you so much for responding.  It means the world to me!  I had a RAI Scan done in May.  Normal - no evidence of masses.  No reference to hot or cold.  31% after 24 hours on a scale of 9% to 35%.  Endo wasn't "happy" with the normal results, so she did a sonogram.  She found many sub-centimeter nodules throughout the thyroid bed.  Largest one on each lobe measures 0.75 cms.  Not large enough for FNA.  So, after this RAI Scan, Sono, and two blood tests, she wants to ablate it.  Without trying any meds first.  I don't understand.  Yes, I want to get pregnant, but I am 42 (will be 43 in September), and if I missed the "baby boat", my husband and I are accepting of that.  I know at my age it's a long-shot anyway.  I also know with every fiber of my being that a Second Opinion is in order.  The thing is, this Endo is the Chief of Endo at a very large hospital here.  Question:  How long can "temporary" last if it is, in fact, temporary???  I am 3-4 months into this, and had major dental work (and took lots of Amoxcilllian because of the metal in my spine) the week before my first blood test which showed the low TSH.

[AR-10]

How long a temporary condition is temporary is unpredictable and depends on the cause.

The ultrasound ruled out any large nodules or pockets of infection, so it's not a hot nodule and it's not thyroiditis.

The uptake scan shows RAI would work, and that your gland doesn't have hot and cold spots.

The Endo should run a TSI test and put you on Methimazole or Tapazole or PTU and see if A)you have Grave's or not, and B)you go into remission in a few months or a year.

The agravating thing is, there is a diagnosis in your file right now if the doctor has decided to proceed to RAI ablation.

So far your antibody tests indicate you do not have Hashimoto's, so it's either Grave's or some transient imbalance. Most people with TSI antibodies have one of the antibodies you tested negative for as well.

Most people with Grave's are put on meds before RAI is resorted to. There is a chance you could go into remission. That's IF you have Grave's.


Your dilemma is how can you get a second opinion fast.
You probably can't.

You need to talk to your Endo and get to the bottom of why you are being rushed into such a drastic procedure without trying drug therapy first.

[hypogirl80]

Much said already, You may want post your condition to Expert forum and let's see what Dr. Lupo say.  RAI is a one way street, I would not do it unless I have to. Usually, the first 2 or 3 years, Doctor order some thyroid meds to control the hyperthroid to see if it will go away later (depends on what was the original cause, there is a chance for some people), RAI will not be suggested untill at least 2 years later.  So, you need do more research before go ahead with RAI. Go see another Endo (I prefer a young one, and/or foreign born, since old US doctors are all trained with RAI next day)  and get another opinion.   Good luck,

[ibabug]

Hi all: I had RAI thinking I was doing the right thing 45 days ago. So far nothing, still hyper and feeling worse by the day. Recent TSH continues to be .06. I have hot and cold nodules, felt worse on Tapazole and symptoms seem to be fluctuating. So, to date the jury is still out. Does not appear based on tests that I have hashi's or graves. No FNA yet. I wish it was out and I could move on though.

[Shari4]

Okay - I just had the Endo's secretary fax me over the Report of the Thyroid Sonogram.

Dated:  May 30, 2008

Clinical Indication:  Goiter

The thyroid images were obtained using 12-14 Hz high frequency linear transducer in multiple planes.

Left lobe measures 4.58 x 1.77 x 1.27 cm in size.  Right lobe is 4.95 x 2.07 x 1.32 cm in size.  The isthmus is 0.31 cm in thickness.

Right Lobe:  Has mutliple small cystic lesions.
(1)  0.75 x 0.75 x 0.60 cm, largest nodule on the mid to lower pole.  Has indiscrete borders.

Left Lobe:  
(1) 0.78 x 0.76 x 0.73 cm, hypoechoic lesion on the middle pole with moderate vascularity.

IMPRESSION:  Multi Nodular Goiter with heterogeneous texture consistent with Hashimoto's Thyroiditis.  There are multiple subcentimeter areas throughout the thyroid bed.  I recommend a follow-up sonogram in one year and clinically as needed.

No antibodies, but this is her diagnosis.  That, or Graves.  I'm now completely confused.  AND SCARED!!!!!!!!!!!!

[Shari4]

Hey:

We were posting at the same time. Hypo, my Endo is a young, foreign Woman!  Iba, I have NO symptoms, and really don't want them!  I feel fine!!!  This is insane.  I don't want the RAI Ablation based on literally 2 blood tests, one NORMAL RAI Scan, and one confusing and abnormal Sonogram in a 12-week period.  I don't know what I am doing....

[HyperT77]

Does a Nuclear RAI Scan show everything?  My Endo told me I did not have cancer.  My original diagnosis was Grave's Disease.  Then 1 month after being on Methimazole my levels dropped to a Hypo T range.  Then he thought I might just have Thyroiditis.  

Just wondering why my TSH stayed low for 8 months and is now coming up.  After a couple of months on the Methimazole my TSH was at .   I don't have the numbers in front of me, but he told on a scale of 1-10 that my FT3 & T4 were at a 7-8 and that most of his patients were at a 2-3.  He has me go in every 4 weeks for lab work saying that he wants to keep "close tabs" on me.

It "feels" as if I might be headed into remission but then there are months where I really wonder.

Does this make any since to you?

[4lynnie]

I had RAI in March, and it wasn't bad at all.   I had a few sore spots in my mouth and nose;  had ablation on Thursday and went back to work on Monday.   In the midwest there is a division on treatment - half conservative and the other aggressive.   Aggressive worked for me.    RAI was ordered after TT because of papillary cancer.   I was OK with the plan then, and still am.

[hypogirl80]

I guess today is not my day. Usually foreign doctors use more of medicine rather than RAI.  The only reason that I can see is your doctor must be US med school trained. Anyway, RAI was used more than 70% of time in US to treat Hyperthroid, but in Europe and Asia, less than 20% of Hyperthoid was treated with RAI. It has been a debate for many years.  My own experience tells me  'DO not do RAI unless you have to'.  After RAI, in most cases, you get rid of Hyper, but you get Hypo, -one,+one. I don't see you gain that much.   Based on your 7/9's test, you should have some hyper symptoms, but you said you feel fine. well, if you feel OK, then, I suggest just follow up with your test,  postpone your RAI as long as you can and find another doctor to prescribe you some thyroid meds just in case you need it.

[hypogirl80]

Cancer is a different story, I think you did the right thing.

[AR-10]

Shari,

The sonogram describes a thyroid that is mildly damaged and has a couple of nodules. The cystic lesions and "multiple subcentimeter areas" are infected spots, past or present. The person who sent the report to your doctor says it looks typical of Hashimoto's Thyroiditis.

That says something is going on, and has been for a while. The technician does not note "OMG!!!SURGERY!!!", so it doesn't look like there is a major concern for cancer. The indication is to have another look at it in a year.

I have seen Dr. Lupo say that it is possible to have Hashimoto's and not have any antibodies. I've never read that in any medical journal, but I have seen him say it. The absolute no doubt difinitive test for Hashimoto's is a FNA biopsy that finds hurthle cells with a specific characteristic.

The sonogram does not paint a picture of Grave's, and a TSI that came back very high would be comforting in a sick sort of way, because then you would have a diagnosis that would lean toward the possibilty of RAI solving the problem.

You may be going through a bout of thyroiditis and your levels will come down. You may be getting ready for years of hormone levels going up and down. RAI right now may be the kindest thing for your body and your health.

It might also be a huge mistake.
You could probably get three conflicting opinions, and then you will still have to decide. That said, a second opinion would be very nice.

I just think it is unreasonable to be expected to agree to RAI without the doctor knowing more about what is going on, and taking at least fifteen minutes to go over her thoughts and all the possible implications of doing it or not doing it.

It will be a life changing event. Maybe for the better, maybe not. Her outright rejection of Tapazole needs to be explained. Her rush to do it now needs to be justified.


HyperT,
an RAI uptake scan shows how well the thyroid absorbs iodine and whether it absorbs it throughout the gland. It detects hot nodules, and detects hot or cold spots in the thyroid.

It should be used in conjunction with an ultrasound(or sonogram) to have a clear picture of the condition of the gland.

If you have Grave's and are taking methimazole, you can go hypo if the methimazole dose is too high. It is good your doctor wants to keep close tabs on you. If you are on a steady dose and your hormone numbers are sort of high, you will have to wait to see if they start falling, or if you will need a little higher dose to force them down. On a scale of 1-10, you want them at a six or a seven anyway, not a two or a three.

[Shari4]

Hey, Girls!

Lynnie, if I had cancer, I would get a TT and RAI.  Endo is sure it is not cancer.  Hypo, lol at today is not your day.  I appreciate your (and everyone's) input.  My Endo was schooled in New Dehli, India!  I have to find another Endo.  My friend is having a partial thyroidectomy by an ENT.  She wants me to call him.  I am hesitant, because she has a benign mass on her thyroid and normal blood ranges for Thyroid.  I read all of the symptoms of Hyper, and I admit I have two very slight symptoms.  One is the slightest tremor in my left hand that comes and goes.  The other is slight breathlessness only when WAY over doing it.  I do smoke about a pack a day.  No weight loss, I sleep like a baby, I am not moody or irritable, and I have regular periods every month on the dot.  Last year, my blood work was totally fine.  Recent changes over the last year include getting married and moving into a beautiful new home with many skylights (lived in a basement apartment for years before that).  I need another opinion.

[Shari4]

Hi again, helpful Angel!

The report of that Sonogram was done by the Endo herself, as she did the Sonogram in her office!  No technician.  She said (I asked her a MILLION times) that it's not cancer.  Now I'm even more confused.  Your word is golden when it come to RAI, and to see you say that, "RAI right now may be the kindest thing for your body and your health" gives me cause to pause....

[AR-10]

I said that because in hindsight, for me, it would have been better if the first Endo I saw had nuked me immediately. Well, the second Endo. The first one was pathetic and would have screwed it up.

My health suffered and my body incurred a lot of damage while doctors failed to control my hormone levels. But my case was a little odd.

You don't really understand what condition your thyroid is in. If you have some transient thing going on then you need to take an anti-thyroid drug and be monitored until it passes.

If you have Grave's or Hashimoto's drug therapy can probably control it.

If it takes a year to get you away from hyper, or you spend five years going up and down like a yoyo, then you might be better off doing RAI now, before your body gets messed up.

But RAI doesn't guarantee you won't have trouble maintaining your levels, either.

The bottom line is, it's a hard decision and an important one. You need all the facts laid out with a prognosis of future expectations.

You need a second opinion. A second opinion means time, which means you need drugs now. It's a difficult situation. If you're not going to do RAI soon, you need to be on drugs.

[Shari4]

I hear you.  The only drug she gave me was the Inderal "Band-Aid" for symptons I really don't have.  And you are right, of course.  I need to know why she's skipping the anti-thyroid drugs.  Could it be because I had a spinal fusion and have alot of metal (2 eight inch titanium rods, 12 screws, and  two mesh cages) in my back?  Maybe it's because I have nerve damage in my left leg that affects my sympathetic nervous system?  Maybe RAI will make all of that worse!!!  I will get these answers, AND a second opinion within a week.  My friend is an OR nurse in a great hospital, and she's going to try to get me in tomorrow to see the doctor that's removing HER thyroid this month!!!  Thank you so much for all of your help.  I read her your replies, and she agrees with everything you say!!!  I hope you are feeling well, and I will definately be bothering you again soon!!!

Sincerely,
Shari

[stella5349]

Sorry - Huge post and I wasn't on. Thank God for AR.

What the heck - Unless I missed something I do not see any of the TSI testing or uptake scans to put you into this decision of permanent nuking the gland.

I do see you levels MAY indicate hyperthyroidism - but to be pushed into RAI before further testing is done that is ........... (we'll , I am just shaking my head!!)

Here you are suffering as you say "no symptoms" and your doctor is pushing you into a permanent ablation of a gland where you will be on meds for life.

She states - get off the internet? - We'll excuse me.

As AR states RAI can and could be right - but maybe not - I am still torn about my decision of RAI 6 yrs ago - but I had uncontrollable symptoms of Graves disease - THAT WAS properly Dx'd with TSI antibody labs AND TWO uptake scans confirming the autoimmune disorder.

The unfortunate thing for me was the ENDO did not properly follow up after the ablation and sent me almost to death with hypothyroidism and never tested for TPO antibodies that NOW confirms I had them too.  It sounds as through your doctor is not considering the fact that you will need monitoring after the ablation.

He/she comes across and I experienced - the endo taking care of me at that time was "Yeah - well do the RAI - give you a pill you take once a day - and you'll be fine. HAH.

I am not in favor of jumping into this RAI for you - I think the anti-thyroid meds is the way to go - IF you choose to do that.

As I said to you - when I was Graves I was <0.001 BUT I suffered. Know after 6 yrs of hypohe// and NOW finally getting back my optimal levels I have a TSH of 0.04 and feel fine.

[Shari4]

THANK YOU ALL FOR YOUR SUPPORT!  I just had to scream that.  It's obvious I need a TSI Level Test (thank you Stella, AR-10, & 898), and I am waiting for my PCP to call me back.  If the Endo won't order it, I know my PCP will!  I will keep reading this site for the rest of the day and into the night!  I have posted all my tests on my profile.  You people are so amazing, and I pray God blesses every one of you with good health!

Sincerely,
Shari

[Smilerdeb]

Sorry Hon.....I been busy keeping CALM lol.

I am feeling like a million dollars!
3 weeks now POST RAI.
my TSI at diagnosis was 420 (ref range <150)
Then in May 2008 was 550
3 weeks after RAI my TSI is 120
Seems the Graves Antibodies have settled down.

RAI AND SURGERY ARE THE LAST RESORT SHARI.
I HAD TO HAVE RAI BECAUSE OF FIBRILLATIONS AND THYROID CANCER.
SURGERY WAS TOO RISKY FOR ME BUT IS SCHEDULED END OF AUGUST.
DEMAND TSI HON......
DEMAND ...TIME....
DEMAND ...ANOTHER ENDO IF TSI SHOWS AS NORMAL .


I AM DOING WELL AFTER RAI BUT EVERYONE IS DIFFERENT...RESEARCH EVERYTHING OVER AND OVER SHARI.
ITS YOUR ORGAN AND YOUR BODY.
THE THYROID DOESNT DIE OFF STRAIGHT AWAY AFTER RAI, IT CAN TAKE MONTHS.
I EVEN EMALIED AR-10 AS MY LEVELS HAVE GONE UP THIS WEEK AFTER RAI THOUGH COMFORTING THAT MY TSH HAS ALSO COME UP TOO.

YOU HAVE A LOT OF SUPPORT HERE TOO!
*HUGS*
DEBS

[Shari4]

I am so happy for you!!  Happy you're here on this board, and for your support.  I will demand TSI.  If TSI is normal, it's a new Endo for me :)  You look absolutely "radient" in your new pictures - lol, and I mean that in the most beautiful way!  I will check out that site as well!!!

Love & Hugs!

Shari

[Shari4]

Your comments did not fall on deaf ears....  I made an appointment with a new Endo!  She will test EVERYTHING - including TSI.  She's supposedly very detailed in her labs as well as her imaging.  I also have another Endo on stand-by, just in case!  Appointment is August 13, or sooner if they can get me in!!  Now I have to remember to ask all the right questions!!!  Meanwhile, I am taking myself off the Inderal (which I hardly took to begin with) so my new blood tests won't be effected.  Any advice, thoughts or questions are always appreciated!!!  

Shari

[898]

Try to use plain (non-iodized salt).

[Shari4]

Why???  Lol, 898 - the man of mystery - when you make a statement like that, you must explain!!!!!

[898]

In hyperthyroid patients, adding iodine to the diet may elevate thyroid hormone levels even higher.