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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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Avatar_f_tn
"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
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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Avatar_f_tn
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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Avatar_f_tn
"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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Avatar_f_tn
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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Avatar_f_tn
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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Here I am almost a year ago since I posted, and I thought you would like an update in that you are so helpful to so many.  About three weeks after the first post, I became free of symptoms, I was not short of breath upon exertion for the first time in a year ! I felt mentally alert, full of energy and was back to being me.  Well, the dr. was excited and said that now I needed Synthroid since my TSH was like 9 (this was taken the week before and she said that tests are always lagging) So she started me on 137mcg of Synthroid and I felt like I had drank 5 pots of coffee but kept taking it for about 5 days then said I need to stop that high of dose and I became short of breath again, and haven't changed since which has been heart breaking.  We stopped the med and TSH went to 62 but no change in my symptoms, any of them, really, and then we started 25mcg a day and by Dec., I was at a 3.3,and she was satisfied...for all my symptoms : eat more fiber, take an antidepressant, take a sleeping pill and go to the gym again and build up some.  I was stunned.
Being a physical educ. teacher, and having some knowledge of my own body and what is going on, I couldn't believe her comment on the exercise, let alone the other 'take a pill' comments....but, get this, she does another blood test and my TSH was now 6.6 so she said she was premature in her discussion and upped my meds to 25 four days a week and then 50 three days a week, and I went to 5.5 on TSH, so we tried 50 every day and I went hyper down to .9 and all my symptoms are aggravated.  She felt that 5.5 was okay and that .9 is okay, and I am NOT okay....I don't feel well.  I have been searching for another doctor,but just don't know how to go about it. I have read about questions to ask, and I am uncomfortable calling a place and doing that.  All that said, I am wondering why I have such fluctuation yet since the RAI. Perhaps my thyroid still isn't done ? I still can't believe this endocrinologist is at Johns Hopkins and seems clueless at to symptoms and testing Free T3 n 4.  I am retired and so want to feel better and enjoy my grandchildren and vacations and be able to do more than slowly go through the motions of life.....
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I commented on the other thread you posted on, before I saw this.  Here's my comment on that thread:
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Why did you have your thyroid ablated?  Are TSH and T4 all that are being tested?   Is that Free T4 or Total T4?  Please post the actual result and be sure to include reference range, since ranges vary lab to lab and have to come from your own report. If your report doesn't specify whether it's Free T4 or Total T4, it's assumed to be Total and isn't nearly as useful.

What about Free T3 - has that been tested at all?  

TSH is merely a messenger hormone produced by the pituitary gland to stimulate the thyroid.  If you thyroid was ablated, it's not going to respond; therefore, you have to provide adequate hormones for your body, in the form of replacement hormones.

By the same token, T4 isn't used directly by the cells.  It's a storage hormone that must be converted to T3, prior to use.   Of the total T4 in your blood approximately 90-95% will be bound by protein and is not usable.  Therefore, you have to test the unbound ("Free") T4 in order to find out exactly how much is available to be converted to T3.

Like T4, much of the T3 in your body is bound by a protein and can't be used, so you have to test the unbound ("Free") T3 to find out exactly how much is available for use.  Free T3 is the hormone used directly by the individual cells.

Not all of us convert FT4 to FT3, adequately, so we have to add a source of T3, such as cytomel, generic liothyronine or a desiccated hormone derived from pigs that contains both T4 and T3.

Targeting TSH is like shooting a moving target, because TSH is affected by so many variables and can vary as much as 75% over the course of a day.  

Unfortunately, doctors who dose medication, based on TSH levels, tend to keep their patients ill much longer than necessary.

Ask your doctor to test Free T3 and Free T4, along with the TSH.  If he refuses, find a different doctor.
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I see now why you had your thyroid ablated.  

Doctors from some of most respected teaching hospitals are often the worst and the sad thing is they are teaching future doctors to be just like them.
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