Follow up after TT

[Totie]

I had a full TT back in 1994 because of Hyperthyroidism/Goiter/Graves Disease. They never mentioned cancer one way or the other. My question is should i have had follow ups after the surgery? After surgery it took about a year to get me back on track with the thyroid level. I was taking 200 mcg levothroid for the past 12 years, but last year my family doctor changed the dose to 125 mcg, but never told me why. I have been having a lot of symptoms the past two years, but he keeps telling me it is not thyroid related. I do not know what my lab results have been the last two years. They symptoms i have feel like when i had graves disease. I have even suggested my parathyroids to him, but he said my calcium level was okay at 10.8 six months ago.

Frequent urination
weight loss/have lost inches in hips and thighs
loss of muscles in the hips, thighs
muscle aches, cramps in the hips, thighs and ulinary areas (not sensitive to touches)
trouble sleeping ( I can go all day on two hrs of sleep and does not bother me)
neck pain that goes towards my ears, under chin, and down towards my chest

My concern is the bad ahces on my thighs and hips, it is like the more they hurt, the more they shrink. I have always maintained my weight 115-125 never over or under; i am 5'2. On Jan. 10 i weighed 124, now i am about 105, i have lost drastic body mass and did not need to. When i asked him about it, he asked if i wanted to try an anti-depressant. I gave up. I would have thought that since i had thyroid disease he would have referred me to and Endocrinologist for a full work up, including an Ultra Scan of the thyroid area. Should i push for that when i go back to a new dr. on April 1,2008?

[Mark Lupo, M.D.]

Would make sure the TSH is balanced with the significant dose change -- 200mcg may have been too much for you and if so it may take some time to recover now that the dose has been lowered. The target TSH is typically around 1.0.  

If the TSH is low, despite the dose decrease then there is a slight chance the graves is back - this is where the ultrasound will help document if there is any thyroid tissue that has grown back.  Then test TSI (the Graves antibody) to see if it is still high.

The calcium of 10.8 seems a little high - would repeat and consider a check of PTH.

[kitcurious]

Hi,
I am not a doctor just another thyroid patient. Dr. Lupo will tell you what tests to have, I just wanted to offer my sympathy because your post was so familiar.  

I have a Hashitoxicosis dx, uninodular goiter  nodule right side, TPO 1238, Tgab 95 ,am 5'3"and lost down to just under 100 pounds when I went hyper. Never slept either, but ran at high speed. Levoxyl was discontinued TSH remained hyper and recently had an elevated uptake on I-123.

My neck pain shoots to the jaw, ear and down into the clavicle. Do you also have spasms in the mouth/chin area sometimes when this neck pain happens?  

Maybe you could request copies your blood tests, keep a log of your symptoms and take it all with you to the endocrinologist. Perhaps write down your questions so you don't forget once you get there.

I'm sorry you have had a difficult time communicating with your former doctor  and hope you get answers soon.

[Totie]

Yes the neck pain shoots to jaw, ear and down into the clavicle. Wow, someone who knows what i am talking about....Maybe i am not going crazy. Is the pain caused by lymph nodes or something. I don't have a thyroid so that could not be it. They gave me radiation iodine for the graves disease, but did not work that was why it was eventually removed.

Did your muscles shrink as well? I have not felt this way since I was diagnosed with graves disease, but my primary dr. just keeps telling me everything is normal.

I have requested my medical records for the last two years since my symptoms started two years ago. I read about people and these tests that they get i can say i have never had any of them done, except the TT, that was it. I never found out if it was cancerous or not, my primary never told me anything. Something has to be going on if he dropped my dosage from 200 mcg to 125 mcg. I was literally giving up, if it had not been for my nephew who works in a hospital and gave the list of symptoms to his doctor friend and he emailed me about what tests to ask for when i see this new doctor.

[kitcurious]

Well, my thigh muscles got weaker and when I rode my bike (which I love to do, pretty trail near my house) it was much harder- took much more effort a few months after going hyper than it did when I was just a little hypo. Even though riding regularly over time should have made me more fit, I was getting measurably less so.

I am glad you were able to find good advice through your nephew. I can't see the doc dropping your dose unless he was concerned you were going hyper...

Hopefully, your new doctor will be more open about your results. My endo is always upfront and they always offer to xerox test results for me. This helps because I can then take copies to my primary care doc and cardiologist .

It's often good that any given doc knows what tests have been run on you by another one in the past.

I have no expertise, but would guess that not only do you need new thyroid ( and more comprehensive)  bloodwork, but  also  imaging- ultrasound and possibly nuclear imaging- to make sure that everything is okay. Hopefully a simple correction in therapy will have you feeling much better soon.
Dr. Lupo is the best, and will advise  you on where to begin.

[Totie]

Thanks for your replies kitcurious....

I was told once by my  primary doctor that since I no longer have a thyroid and on medication i no longer have thyroid disease, I guess i really need a new docotr...

I have an appt. with a new doctor on April 1; I will keep you posted on it.  Besides the board how else can I keep you updated?

[Totie]

Thank you for your reply. I will surely do more pushing with the new doctor. I had been told before by my primary that i no longer have thyroid disease since i no longer have a thyroid. I guess it is time for a new doctor.

[Totie]

Will they finally did a CT Scan on my neck area, and today they call and tell me that they found thyroid tissue. I wish they would had listened to me about my symptoms 2 years ago. I do not go back to my primary