# RAI treatment 1 yr ago still suffering from low now to high!



## jbiel123 (Mar 2, 2010)

I am 33 with 4 yr old twins* have a very active life and as a mother* was diagnosed about 1+ years ago with GD* all apparent symtoms* trimors, irratability, resting pulse of about 120+ etc.... had Radioactive Iodine (highest dose possible)* 2/09* after 4 months became hypo* then put on a series of meds, but since I am lactose intolerant ended up on Levoxyl w/o lactose base. I am currenlty on 75mcg and seeking another opinion as now my T* levels are low (indicating high) and my antibodies are thru the roof. New Endo doc felt and my thyroid is still present* debating on another radiation treamtment or thyroidectomy* just be rid of this. Need thoughts and advice. I am tired of the roller coaster rides and putting my family thru hell. What's to say this wont come back after and shock of radiation. Would having thyroid removed be a better option for me?


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## Andros (Aug 26, 2009)

jbiel123 said:


> I am 33 with 4 yr old twins* have a very active life and as a mother* was diagnosed about 1+ years ago with GD* all apparent symtoms* trimors, irratability, resting pulse of about 120+ etc.... had Radioactive Iodine (highest dose possible)* 2/09* after 4 months became hypo* then put on a series of meds, but since I am lactose intolerant ended up on Levoxyl w/o lactose base. I am currenlty on 75mcg and seeking another opinion as now my T* levels are low (indicating high) and my antibodies are thru the roof. New Endo doc felt and my thyroid is still present* debating on another radiation treamtment or thyroidectomy* just be rid of this. Need thoughts and advice. I am tired of the roller coaster rides and putting my family thru hell. What's to say this wont come back after and shock of radiation. Would having thyroid removed be a better option for me?


What is your TSH and what is the range. TSH alone does not indicate hyper. One must also have Free T4 and Free T3. If these are high and TSH low, then one would think hyper depending on how low the TSH is and how high the Frees are.

What antibodies are through the roof?

Well, are you going to have an uptake scan to see what is going on? What did the doctor say? You don't want to have another RAI for no good reason, I am sure.

And even though I had 3 RAI, I do wish I was offered the option of surgery at the time for now I will never know if I had cancer or not. Cancer does cause hyper in "some" patients.

So...................it might be good for you to have the surgery for more than one reason.


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## jbiel123 (Mar 2, 2010)

I have a medical background in Clinical trials x10+ years and ashamed to say I have no idea what my levels are and do not have copies of my labs. I have seen numerous docs and have had tons of blood drawn.... so gathering all of the "evidence" will be a chore. But realizing how important it is to be your own advocate changes things and I am all over the collection my records.


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## Andros (Aug 26, 2009)

jbiel123 said:


> I have a medical background in Clinical trials x10+ years and ashamed to say I have no idea what my levels are and do not have copies of my labs. I have seen numerous docs and have had tons of blood drawn.... so gathering all of the "evidence" will be a chore. But realizing how important it is to be your own advocate changes things and I am all over the collection my records.


This is good; at least your more recent records. It is a shame but if we don't have an ombudsman, we do have to advocate for ourselves.

Let us know what we can do to help! We are here for you!


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## jbiel123 (Mar 2, 2010)

Ok* so just had my labs faxed to me:

TSH* <0.1
Free T4* 1.07
Free T3 2.9
TSI* 443

What does this mean? So many different thoughts, opinions and scenarios. I know I feel hyper again* have lost weight, bowel changes, brittle nails, hot then super cold not to mention emotional roller coaster.


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## Andros (Aug 26, 2009)

jbiel123 said:


> Ok* so just had my labs faxed to me:
> 
> TSH* <0.1
> Free T4* 1.07
> ...


TSH waaaaaaaaaaaaaay low; can't tell the Frees w/o the ranges but you are working on that. 
Different labs use different ranges.

TSI (thyroid stimulating immunoglobulin) indicates hyper also. The healthy patient should have no TSI and if he/she does, that means hyper.

Please scroll down for TSI.....
http://graves.medshelf.org/Lab_Tests


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## jbiel123 (Mar 2, 2010)

Free T4 is 1.07 (0.73*1.95)NG/DL
Free T3 is 2.9 (2.3*4.2) PG/ML

Still taking Levoxyl 75mcg qAM. From what I can gather and researched is that my Graves is back. I was in remission after RAI 2/09 went hypo and now hyper again. Still opting for removal. So many doctors with so many different opinions. Very confusing!


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## Andros (Aug 26, 2009)

jbiel123 said:


> Free T4 is 1.07 (0.73*1.95)NG/DL
> Free T3 is 2.9 (2.3*4.2) PG/ML
> 
> Still taking Levoxyl 75mcg qAM. From what I can gather and researched is that my Graves is back. I was in remission after RAI 2/09 went hypo and now hyper again. Still opting for removal. So many doctors with so many different opinions. Very confusing!


Wow!!! Even though you are on the Levoxyl, the Frees are below mid*range. And I might add that I have observed this phenomenon with strange looking labs many times. Especially w/hyperthyroid and cancer.

It would seem the "signals" are bouncing off one another and the Frees don't reflect what the TSH suggests and vice versa. The antibodies do this for there are stimulating, blocking and binding (antibodies and autoantibodies.) It is a very confusing mix.

I could not agree with you more. Ablation (surgical removal)is the way to go here. Then after a healing period, you can pick up the pieces of your life.


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## jbiel123 (Mar 2, 2010)

I am seeing a surgeon on Monday 3/18* for consult on removal of thyroid. I have stopped the Levoxyl myself* since I have been told that most will not pursue the surgery until they get a "true and accurate" reading of my thyroid levels* so w/o the meds. Is that true? At this point I am sticking with a PA that left the town's most popular Endo to go to a GP. She is really good and listens to "how I am feeling" vs* "text book treatment". I just need to know if I should stop the Levoxyl??


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## Andros (Aug 26, 2009)

jbiel123 said:


> I am seeing a surgeon on Monday 3/18* for consult on removal of thyroid. I have stopped the Levoxyl myself* since I have been told that most will not pursue the surgery until they get a "true and accurate" reading of my thyroid levels* so w/o the meds. Is that true? At this point I am sticking with a PA that left the town's most popular Endo to go to a GP. She is really good and listens to "how I am feeling" vs* "text book treatment". I just need to know if I should stop the Levoxyl??


Glad about the surgeon appt.; you must let us know and please call your PA about stopping your med. None of us are qualified to give medical advice and let us know about that also. I personally always love to learn more and garnering info is one way to do that.

I know you are excited about seeing the surgeon. Whooooooooooohoo! I was so so glad to have all of that behind me.


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## jbiel123 (Mar 2, 2010)

Discussed with PA that stopping the Levoxyl until I see the surgeon would be best* I go from extremely gittery to completely exhausted within a 2 hour time*frame* also, very cold to very sweaty! I am taking Prozac 20mg BID for the depression* but cannot take anything for anxiety due to the high levels of energy spurts I have already. I feel like my body is at "war" with itself and am struggling each day just to do what I need to do! My poor family is suffering* as they watch me go from hyper to taking a nap. I am so tired of living this way. I am praying this surgery I am pushing for will be the key to a normal life!!!


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## Andros (Aug 26, 2009)

jbiel123 said:


> Discussed with PA that stopping the Levoxyl until I see the surgeon would be best* I go from extremely gittery to completely exhausted within a 2 hour time*frame* also, very cold to very sweaty! I am taking Prozac 20mg BID for the depression* but cannot take anything for anxiety due to the high levels of energy spurts I have already. I feel like my body is at "war" with itself and am struggling each day just to do what I need to do! My poor family is suffering* as they watch me go from hyper to taking a nap. I am so tired of living this way. I am praying this surgery I am pushing for will be the key to a normal life!!!


I am so glad you consulted w/ the PA! Even when resting, the metabolism is speeding and the patient becomes exhausted. I do know how you feel.

Here's hoping that you are going to have a pre*surgery party and soon! Let us know.


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## Lovlkn (Dec 20, 2009)

jbiel123 said:


> I am seeing a surgeon on Monday 3/18* for consult on removal of thyroid. I have stopped the Levoxyl myself* since I have been told that most will not pursue the surgery until they get a "true and accurate" reading of my thyroid levels* so w/o the meds. Is that true? At this point I am sticking with a PA that left the town's most popular Endo to go to a GP. She is really good and listens to "how I am feeling" vs* "text book treatment". I just need to know if I should stop the Levoxyl??


NOT true * if anything you want to be euthroid before your surgery, not hyper.

The surgeon ill make a decision to remove based on your medical history and failed RAI.

You should not stop taking your medication and the PA is wrong to have told you that.

If you do not need a referral to a surgeon and get an appointment with a surgeon bring in medical records for the last year since your RAI and that will be enough for them to remove it.


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