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Still symptomatic 2 months after RAI
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Still symptomatic 2 months after RAI

Hello, I am still symptomatic 2 months after the RAI treatment. I saw the doctor at Johns Hopkins thursday and she said that my TSH is now 1.28 and my other thyroid tests are now normal and I am cured of my Graves Disease. I told her that I have not changed, all my symptoms are still occuring and she said then my symptoms are not from my thyroid.  I was just hoping that it was going to take time for the symptoms to clear up but according to her, the TSH is the lagging indicator that all is well, so therefore.......
I am still short of breath upon minimal exertion for almost a year now.......and still could cry easily, sweaty, itchy, trouble sleeping, and so on...
I do have four autoimmune diseases; autoimmune hepatitis, Hashimoto's, vitiligo, and Graves Disease.
Of course, I am feeling extremely frustrated after a year of specialists from two cities...have worked with cardiologists, pulmonologists, rheumatologists, and endocrinologists, in addition to many regular doctors ! I have had excellent care, but no answer as to why I am short of breath upon minimal exertion. I was healthy working out at the gym three days a week, normal weight, when this SOB hit me :(
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"Why would a specialist at Johns Hopkins say that I was cured of my Graves Disease so definitely?"

Because she doesn't listen to her patients...all she wants to see is lab numbers that "prove" they are "cured".

Because she's a doctor and wants to pat herself on the back for a job well done.

Did she test your FT3 and FT4 levels?  Those are really much more indicative of thyroid status than TSH.  If she's only testing TSH, you will probably want to shop for a new doctor.

I have heard so many people on this forum talk about difficulties in the year after RAI.  It's obvious that once your thyroid is actually "dead", you will have to be on replacement hormones.  Until that happens, it's also obvious that something is still going on.  How could that not cause symptoms?  You are in transition from hyper to hypo.  The road is going to be a bit bumpy for a while.

If you have FT3 and FT4 results with reference ranges, please post them.  
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RAI doesn't "kill" your thyroid immediately.  It can take up to a year for the thyroid to completely die off.  While this is happening, the dying cells "dump" hormone into your bloodstream, so you can still feel hyper for quite a while, but this should diminish as time goes on.

Eventually, you will be hypo and will have to take replacement thryoid hormones.  Until that happens, you are still in the process of being "cured" of your Graves' Disease.  

Once your thyroid dies off complately, Graves' and Hashi's will no longer be factors.  
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Thank you for your comment; you were helpful before when you wrote that, and I believe that, as well.  Why would a specialist at Johns Hopkins say that I was cured of my Graves Disease so definitely? I was disappointed in her. She is sending me back to the pulmonologist who sent me to her and also getting another one that specializes in autoimmune diseases to see if there is a connection there.....one foot in front of the other and keep smiling and hope that someone somewhere figures this all out.  Thanks again....
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"Why would a specialist at Johns Hopkins say that I was cured of my Graves Disease so definitely?"

Because she doesn't listen to her patients...all she wants to see is lab numbers that "prove" they are "cured".

Because she's a doctor and wants to pat herself on the back for a job well done.

Did she test your FT3 and FT4 levels?  Those are really much more indicative of thyroid status than TSH.  If she's only testing TSH, you will probably want to shop for a new doctor.

I have heard so many people on this forum talk about difficulties in the year after RAI.  It's obvious that once your thyroid is actually "dead", you will have to be on replacement hormones.  Until that happens, it's also obvious that something is still going on.  How could that not cause symptoms?  You are in transition from hyper to hypo.  The road is going to be a bit bumpy for a while.

If you have FT3 and FT4 results with reference ranges, please post them.  
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Avatar_f_tn
Yes, she checked the T4 and it was 1.1
I agree about the doctors wanting good test results and then they are done; I have seen four endocrinologists in the past two years and my PCP and they don't listen to the symptoms, just the test results......I am about ready to go "outside the box " and search for alternative care.  What say you about looking in that direction? jw
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What's the range on your FT4?  Ranges vary lab to lab, so they have to come from your own lab report.  No FT3?
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the range was .6 to 1.8
nope, no T3 by her.

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Your FT4 is at 42% of range, and the target is 50% (just something to shoot for until you find where you feel best).  So, according to both FT4 and TSH, you're labs are looking pretty good.  However, we have no clue what your FT3 is doing.  FT3 is the test that correlates best with symptoms, so it's very important.

Do you notice your symptoms changing at all?  Less frequent?  Shorter duration?  As your thyroid dies, it unfortunately doesn't do it on a nice, gentle slope.  It tends to work in fits and starts, sometimes dumps too much hormone, sometimes doesn't produce enough.

I guess my opinion on "alternative care" would have to depend on which alternative.  LOL  Endos are by no means the be-all and end-all.  PCPs, internal medicine doctors, and a wide range of lesser used specialties or alternatives can all treat thyroid IF they have the desire to learn about it.  Before choosing any doctor, regardless of philosophy, I'd try to pre-interview them.  When I was looking for my endo, I faxed out a questionnaire to all the endos in the area in my health plan.  You can also do this over the phone (probably through a nurse).

MY PCP is diabetic, and I'm almost certain she would give much better care than any endo to her diabetic patients.  However, I was "priviledged" to learn just how little she knows about thyroid.

A few pertinent questions can weed out the worst of the worst.  What tests do they regularly order for thyroid patients?  Which thyroid meds are they open to using?  Do they treat clinically to relieve symptoms, or are the just into numbers (although you'd think that they'd know the "right" answer to this, you get some surprisingly candid comments).  
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Thank you ! I am afraid to ask for her to check my Free T3 :(
guess I will just go along and see how I feel......my mental state is somewhat better....waiting to see a pulmonologist that specializes in autoimmune diseases; although, I have hope that time will make me feel better as the thyroid dies off from the RAI treatment. Thank you :)
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