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#1 July 20, 2018 07:23:19

Liz1967
Registered: 2014-02-25
Posts: 247
Profile  

Still fluctuating after all these years

Sue, I forget if we have already mentioned this, but I assume you have had a post TT ultrasound looking for thyroid remnant that could still be intermittently chugging out hormone? I know some studies suggest radiation after TT to be sure nothing at all is left of the thyroid.

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#2 July 20, 2018 15:19:48

SueAndHerZoo
From: New England
Registered: 2013-03-27
Posts: 434
Profile  

Still fluctuating after all these years

No! I have never had any type of follow-up checking to see if anything remained - neither the surgeon, the endocrinologist, or my GP ever suggested that! That would certainly be a plausible, feasible answer to my fluctuating levels!

I have TSH and free T4 drawn again in about 7 weeks and then see my doc again… if my levels did something crazy again after this recent TINY Snythroid dose change, I will definitely ask if she can order me a test!

Thank you!
Sue


Goiter for 25 years, diagnosed with Graves in 2006, Methimazole with one 12-month remission, total thyroidectomy July 16, 2013.

“People don't always remember what you say or what you do, but they always remember the way you made them feel.”

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#3 July 20, 2018 15:46:52

Liz1967
Registered: 2014-02-25
Posts: 247
Profile  

Still fluctuating after all these years

I had one postop TT checkup at six weeks and he did an ultrasound in the office, even tho he was positive he got it all. He had done it preop too. Thyroid cancer patients get followup to be sure nothing at all is left and my doc felt it was just as vital for Graves patients. I think there may other tests like scintigraphy to look for the tiniest of thyroid tissue left behind.

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#4 July 21, 2018 12:55:28

SueAndHerZoo
From: New England
Registered: 2013-03-27
Posts: 434
Profile  

Still fluctuating after all these years

Liz1967
I had one postop TT checkup at six weeks and he did an ultrasound in the office, even tho he was positive he got it all. He had done it preop too. Thyroid cancer patients get followup to be sure nothing at all is left and my doc felt it was just as vital for Graves patients. I think there may other tests like scintigraphy to look for the tiniest of thyroid tissue left behind.

I have just made a note in Things to Discuss with Doc“ about this….. what a shocker (and possibly what a shame!) that no doctor has ever even insinuated that I could still be producing some.

I THINK, about a year ago when I expressed my frustration at my crazy fluctuating levels that the doctor mumbled something about ”maybe still some thyroid tissue that hasn't died off yet“ and I said ”but it was over 3 years ago" and she shrugged and said anything's possible. I should have pursued it, and I certainly will now!
Sue


Goiter for 25 years, diagnosed with Graves in 2006, Methimazole with one 12-month remission, total thyroidectomy July 16, 2013.

“People don't always remember what you say or what you do, but they always remember the way you made them feel.”

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#5 July 21, 2018 15:39:43

Liz1967
Registered: 2014-02-25
Posts: 247
Profile  

Still fluctuating after all these years

This article mentions four patients with recurrence of hyper due to thyroid remnants.
https://www.ncbi.nlm.nih.gov/pubmed/22547016

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#6 July 22, 2018 14:15:02

emmtee
From: Phoenix, AZ
Registered: 2011-10-26
Posts: 137
Profile  

Still fluctuating after all these years

I haven't had an ultrasound since my TT, but my endo still checks my neck at my appointments. She said it's possible for some thyroid tissue to grow back, and it's more likely to happen in hyperthyroid patients. Wendy Williams had RAI 19 years ago, and she had some thyroid tissue grow back.

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#7 Aug. 11, 2018 15:55:40

Cl14
Registered: 2018-08-11
Posts: 4
Profile  

Still fluctuating after all these years

Hello,

I was recently diagnosed with Graves’ disease in May 2018. I was severely hyperthyroid at the time and was placed on 30 mg of Methimazole daily. With regular blood work and Endo visits my levels dropped and as of now I was kicked into hypothyroid and am taking 5 mg Methimazole daily. The new symptoms are really tough. I’m so tired and achy all the time. I’m hoping to start feeling better soon with less medication but I’m not sure what to expect or long I’ll remain hypo. Looking for advice.

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#8 Aug. 13, 2018 09:32:25

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 4057
Profile  

Still fluctuating after all these years

Hello and welcome - methimazole clears the body fairly quickly, so you should start to see those hypO symptoms resolve soon. It can sometimes take a few adjustments to find the “sweet spot” dose that will keep your levels stable, so watch out for your old hypER symptoms creeping back in - and if that happens, call your doctor ASAP to get a new set of labs.


Kimberly
GDATF Forum Facilitator

…through nature's inflexible grace, I'm learning to live…
– Dream Theater

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#9 Aug. 13, 2018 09:42:40

SueAndHerZoo
From: New England
Registered: 2013-03-27
Posts: 434
Profile  

Still fluctuating after all these years

Hello Cl14.
I agree with Kimberly, but also what I have found EXTREMELY helpful over the years is to keep a log or journal of how I'm feeling at each medication dose. I have a list of symptoms that I seem to feel when I'm going hyper, and a list of symptoms for when I think I'm going hypo, a list for when I'm simply changing from one to the other, etc. It has helped immensely to look back over it and see if whatever symptoms I'm having coincide with whatever change I've recently made.

Also, when you have your blood tested, always ask for a hard copy of the results and on that piece of paper, write down how you were feeling the day you had them drawn. You can then look back over the past bloodwork and see a pattern, see at which TSH levels you felt best, etc.

We have to be our own doctors in dealing with this disease.
Sue


Goiter for 25 years, diagnosed with Graves in 2006, Methimazole with one 12-month remission, total thyroidectomy July 16, 2013.

“People don't always remember what you say or what you do, but they always remember the way you made them feel.”

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#10 today 20:18:33

Cl14
Registered: 2018-08-11
Posts: 4
Profile  

Still fluctuating after all these years

Hi Sue, thank you for tour reply. I really appreciate the advice.

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