# Graves and Horrible Symptoms for years, time for Thyroidectomy?



## gravesguy (Feb 18, 2016)

This is kind of a long one but I WILL REALLY APPERCIATE any input. I am 31 year old male and type one diabetic for 18 years. I was diagnosed with graves disease a year ago and was very hyper TSH <0.006 range - 0.450-4.500 , T4 5.61 range - 0.82-1.77 (no T3 test at this time, March 2015) I was put on 30mg of methimazole for about 3 weeks and then it was upped to 40mg because I was still hyper. I remained on 40mg for about 1.5 months and then discovered I was overmedicated went hypo. T3 2.0 range- 2.0-4.4 , T4 0.43 range-0.82-1.77 , TSH 38.120 range- 0.450-4.500 at this time I took a drug holiday for a weekend and then continued with 10mg methimazole for about 7 - 8 months and my levels were fine. I then found out my levels were creeping back up a bit and was put on 15mg of methimazole. And have been on that for 3 weeks and my levels are now normal again

My symptoms however are horrible and I feel like complete crap. Even when I went hypo I felt hyper racing heart, anxiety etc. There was a couple months after I got on methimazole where I felt good. I would say I only felt good for 2-3 months. I sleep fine and this is the best time I have symptom free.

I had an ultrasound last week and said my thyroid was all lumpy and typical graves looking thyroid.
My main complaint is dizziness and leg weakness I am not sure if it is related to my thyroid, but I know when my levels are off it definitely exacerbates my symptoms. I have 24/7 dizziness and am unbalanced. I will list my symptoms that have completely put the brakes on my life as I know it. Here they are:

Dizziness - like a moving, spinning, tilting, lightheaded, unbalanced feeling with head pressure
Feel faint and sometimes very faint like I am going to actually faint, but don't.
Feel weak and sometimes feel like I am not even here
Feel disconnected feeling like almost my body is disconnected from me and a feeling of numbness in my body
Legs feel heavy, wobbly, uncoordinated, unbalanced and weak.
Legs feel stiff and like the ground is rubber or moving.
Sometimes feet and lower legs feel so weak they feel like they are trembling very slightly when standing.
When standing still like in a line at store or in the shower my legs feel weak like they won't hold me up this feeling is in the lower part of my legs like from the knee down.
Standing in the shower with my eyes closed sometimes makes me feel Really off balance with my lower legs and feet
Hyper sensitive to any ground surface, even the slightest variation in the ground can kind of throw me off balance or make my feet and legs feel weird and off balance.
All my leg symptoms seem to happen when I am standing or walking
Get plenty of sleep, but sometimes feel very exhausted
Light headed / off balance
Sometimes have had free falling felling when I close my eyes.
A moving feeling like I am in a hammock
have light sensitivity where it feels like I have to shut my eyes like I am staring into the sun.
The light that affects me in this way are florescent lights. And walmart lights are the worst
Head pressure, Ear pressure that affects my hearing at times, Headaches

All these symptoms have been going on for 3 years off and on and each year seems to get worse and worse. Although I was just diagnosed with graves 1 year ago. During the first two years with my symptoms I did have my thyroid levels (well at least my TSH) tested and they were mostly normal with the occasional slightly hyper level that resolved itself.

I have seen several ENT's and have a lot of balance testing done all normal. Cardiologist with eco being normal, have had tilt table test which was inconclusive, but later told most likely do not have pots. Seen I think 7 neurologist all of which best guess was Vestibular migraine and or anxiety except one said mal de debarquement and the other most recent saying psychological dizziness. A lot saying take an SSRI which I have not done yet because even moving my head back and forth or turning around now will make me dizzy. I am not sure if my graves are causing my symptoms or something else

Does either TT or RAI stop the disease process or most importantly the symptoms? Am I at the point where my levels cannot be stabilized with methimazole?

I am kinda between a rock and a hard place. I am not sure what to do from here if I want to continue the methimazole to I guess only band aid my problem or if I should do a thyroidectomy? I do not have a strong voice to begin with and do not want to lose my voice or have it be weaker.

I have heard a lot of people not even have any success with RAI, need more than one round or feel awful after anyways or even have to have TT after RAI. Also read there are a lot more yo yo symptoms and stabilizing times with RAI. I want to be DONE with this and get on with my life.
Any input from anyone with experience or knowledge on this would be great, thank you


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## webster2 (May 19, 2011)

TT best way to go, IMHO.


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## Lovlkn (Dec 20, 2009)

Welcome to the board!

Sounds like you have been struggling for a long time. I struggled for a long time to get a diagnosis then 4.5 years on Tapazole, never being able to stabilize and with frequent labs ( monthly ) and dose changes.

Sounds like it's time to consider the "permanent" fix to graves, have a total thyroidectomy vs the RAI. One and done , then you can focus on dialing in your replacement medications.

I struggled with anxiety while on Tapazol anti thyroid meds and post surgery had very little - while it took me awhile to dial in my replacement med's post TT, overall I felt better than being on anti thyroid med's.

RAI is a guess on the dosage to totally kill of your thyroid - very inexact and can prolong your suffering and possibly require more than 1 dose. If you have any eye involvement, you want to steer clear of RAI.


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