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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 know what the anxious heart punding hyper symptoms feels like, but my main delay and problem is i am not sure what is causing the rest of my most debelitating symptoms and if i would still have them regardless if i had a tt or not?
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 and hopfelly go into remmision 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 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="" know="" what="" the="" anxious="" heart="" punding="" hyper="" symptoms="" feels="" like,="" but="" my="" main="" delay="" and="" problem="" is="" i="" am="" not="" sure="" what="" is="" causing="" the="" rest="" of="" my="" most="" debelitating="" symptoms="" and="" if="" i="" would="" still="" have="" them="" regardless="" if="" i="" had="" a="" tt="" or="" not?="" 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="" and="" hopfelly="" go="" into="" remmision 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="">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 know what the anxious heart punding hyper symptoms feels like, but my main delay and problem is i am not sure what is causing the rest of my most debelitating symptoms and if i would still have them regardless if i had a tt or not?
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 and hopfelly go into remmision 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>
1 like, 26 replies
chris1863 ty31825
Posted
Sounds somthing like what I have been dealing with but have not been dignosesed
Really strange and nightmare health turn. all stated during trip to Cincinnati Ohio trip on may 12 I felt really bad and very weak like flu. So bad that took to wheelchair. But did hit back of head in soft spot on table as I was laying back on air mattress. Was fweling bad before though.Went to er on way back one nurse thought one ear was inflamed he had to dig around and looke good and he looked at tonsils said they were still to inlarged from the tonsillitis I had a month before thought body is still fighting it. But doc the actuly doc did not see me tell very end and said was just fatige tests show fine. Need more done but he would not do it.arge .Just wonding if that virus good have went to ear? Any way little bit better with rest
then all the vertigo and real bads nausa could not eat much for weeks lost 20ilbs.which told bppv no one would do eply had to wait a month to see ent.was given prednisone which put me in more daze and gave real cold bad shakes shot bloodpressure up 170 over 100 somthing and was then give after that that put me in complete brain fog/ weak couldn't thank which stoped after off it for a for few weeks but still don't feel right. so medicine may have prolonged this. Also noticed i was geting dizzy after using sinus rinse. Before trip .Was not as dizzy before and after doing them felt like i might have got water in ears so i shook my head alot. Wish i have never used the rinse.this was before trip. Now having still having a little balance issue but mainly truple with eyes thing i see move give bad feeling and they dont seem to want to focus and there alot blurrer then before all this started matter of fact eye doc first time seeing one said near sighted 20.50 but i know i could see clearer before all this. Also main thing still bothering me is eye thing even somtimes hurt and bothers eyes to look at phone. And can't focus and concentrate to whatch tv and light headed have wooshy swimy head fealing when moving at times.weak in daze feel like i going to faint some days and barly stay to myself like out of not conected to world.some Sorry for long story. Just want to get back to myself and well. Before all this went to Florida in 2016 did 3 theme parks one day no problems was well. Also have seen ent did vng thought bppv but it was a month in to symptoms so nysteagmes had stoped he though had slower moving fluid left side and a tiny nystagmus. So did eply sent home with to to do for left side. No ear pressure showed and no hearing loss becouse seen another ent to who done hearing test. But he almost is saying he don't think it's ears possable butsending me to nuraligist and vrt rehab.also all blood work they have done all the basics plus few others show good no high white blood count. Have had that many times due to er visits. Had ct said fine ultra sound of abdominal and ct showed fine other than fatty lever. Only think I have been told is low vita d 13.4 and scored low on pulmonary stress test which showed low lung capicity 60 67 with inhaler but xray chest clear and test for copd says not predposed. Mid you did not have shot of breath before all mentioned I have spent days crying and so stressed out couse I can't do anything tell .also can't take any inhalers for side effects.all of them. Update recent spirometry came back nomal Any one have any ideas or advice just want life back.
now still swimy type headed light headed have trouble focusing eyes watching movement bothers me ever bad felling or almost some sort of disconnect hard to explain. vission has changed during all this as well. But eye doc says eyes fine just need glasses for nearsightedness 1.50 percription. Cant wear caouse throughs more dizzyness and is just to much on top of everything.Eyes were fine or clearer before all this. Also heart rate is up some days when standing and moving can go all the way 136 to 140 pulse rate. Not always though last few days been down around 100 to 115 some time little lower? Extremely weak last few days again and can't stand to look at motion. Very dizzy lightheaded.
Just looked up latest TSH is 0.37 was 0.89 in may then a few months ago was 0.59
Docs just now taking me seriously. StI'll done so may other tests blood work er visits etc. Now heart in and other of rythem cardo heart doc says. Is this sound like hypothyroidism or adrenal problem doc finely doing tests. But can't get me a to endo unless a dignosses is already made???? Also have lost 40lbs still losing. Also mom has had thyroid issues and grandmother and aunt. Buy like said Tsh in around may was 0.89 now it's low at 0.28 matter of fact it was 0.37 the day before. The normal lab range is 0.50 to 4.00