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#1 May 16, 2020 17:06:09

kellyirvin78
Registered: 2020-05-16
Posts: 1
Profile  

New to this and need advice!!

Hello, My name is Kelly, I was diagnosed with Graves last year. I went to the Dr gir a check up due to extreme heart palpitations, 4+ edema in my lower extremities and feeling as of my whole insides were shaking. I have never felt that bad in my life and I really thought I was losing my mind. I was also going through needing a hysterectomy due to cancer cells on my cervix, needless to say it was a horrible time! My PCP started me on methimazole and propranolol. My TSH was 0.00 and my T3 and T4 were extremely high. Long story short, after months of not getting answers or help I referred myself to an Endocrinologist, he was able to get my levels up enough to clear me for my hysterectomy, which was my main concern at the time. I was feeling better on the meds but have noticed in the last 2 months the tremors and palpitations returning. I had my labs checked last week and TSH is back down to 0.01, T3 is normal and T4 is mildly elevated at 4.6. I was supposed to go to enodo in April but COVID hit and appt is rescheduled for June. My question is, is it normal to start having symptoms again if T3 and T4 are basically normal but TSH is low? Dr said he expects me to have to have surgery as my iodine uptake test was basically normal so the RAI would not work on me. I am so ready to feel normal and can focus more on fixing this now that I had my hysterectomy. Any advice or input would be appreciated! Thank you!

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#2 May 20, 2020 17:55:48

Liz1967
Registered: 2014-02-25
Posts: 297
Profile  

New to this and need advice!!

It is hard to keep levels where you want them on methimazole. It requires frequent monitoring and dose changes. It is more difficult when all you have to go on are the FT levels as the TSH is nondetectable. For me, a thyroidectomy made me feel normal very quickly. Your levels will have to go down quite a bit before they will consider surgery. In other words, they need to get you on the hypo side or risk thyroid storm during surgery. This is all much harder with the pandemic, but the thyroidectomy solves the hyper problem.

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#3 May 20, 2020 18:43:47

Kimberly
Online Facilitator
Registered: 2008-10-14
Posts: 4182
Profile  

New to this and need advice!!

Hello and welcome - The experience with methimazole is very individual. Many patients end up doing well on a low dose, while others experience side effects or have issues getting stabilized.

One thought is whether you got a definite diagnosis of Graves' disease, as you can have elevated T3/T4 and suppressed TSH for other reasons. (For example, the early stages of Hashimoto's or an overactive nodule.) Antibody testing (TSI or TRAb) can help point you in the right direction.


Kimberly
GDATF Forum Facilitator

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

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#4 May 21, 2020 08:48:57

terppsi
From: Portugal
Registered: 2013-12-04
Posts: 21
Profile  

New to this and need advice!!

Hi Kelly,

It took a long time for me to get to the right MMI doseage. At one point I had to be checked once a month, I was very reactive to minor changes of the doseage. So hang on in there.
I was diagnosed becaus my heart was racing and I kept loosing weight, so my PCP asked for a TSH, FT4 and T3 plus anitibody check. Then he referred me to an endo and the endo had me have a TRABS test and a nuclear medicine exam and all that confirmed I had Graves disease.
And now, after 5 years, I seem to be in remission and am tapering off the MMI.
So there is hope at the end of the tunnel.

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