help with graves disease

[rubysgolden]

hi there im just looking for some help with any info on some problems ive been having , i started a thread a while back but am starting a new one here .
   im feeling soo ill  .... i had some blood work done around last feb indicating thyroid  problems low TSH normal free t4 and high free t3 and high TPO antibodies .  and a RAIU test which  i think was around a 31 percent uptake ,  or around there  no nodules  . anyway endo doc said he thinks i have mild grave disease and started me on tapazole 5 mg once a day . i thought i felt a little better right away but then started to have stomach problems and stopped taking for a few days . but then still feeling sick started again at half dose but then upped it back to the 5 then stopped again because i thought the pillls were making me sick again .

after taking the meds some what half *** for a while longer i had some kind of attack started sweating profusely feeling really hot  , heart racing and  pounding  . feeling like was gonna pass out or throw up or diarrhea layed on bed felt like i was breathing hot furnace air or something basicly felt like i was gonna die . i have had similar attacks before  i almost thought i was gonna have to call 911 or get girlfriend to take me to hospital . any way after a while i came back around then got cold and really really tired and fell asleep . the naxt day i went with a ref feral for blood test that i already had from the endo . got results my tsh was still low free t4 normal and free t3 high 6.7 it was which isnt extremely high i dont think ? as range is 2.6 to 5.7 anyway i talked to endo doc he said he thinks i need more tapazole and told me to take one 5 mg pill in am and one in pm . which i did as this latest attack scared the crap out of me . anyway after taking the two pills a day for a coulpe or few weeks now im not sure if i fell better or worse or what i just feel sick all the time sometimes i wonder if i am feeling sicker from the meds i have started trying to work out but just yesterday i had a headach soo bad i was at the drug store getting my perscript for tapazole renewed and though i would check my blood pressure  it was 138 over 90 i have checked my blood pressure many times and its always really good im sure its the tapazole causing this ? i took it three more times while i was there and it was best at 126 over 82 but like i said i have never had a blood prusser prob before taking the tapazole even my resting heart rate has always been really good  like 60 beats per min but seems to be going up only since i started the tapazole . anyway im just feeling soo sick the head ach was soo bad yesterday that i didnt take the pm dose of tapazole head ach lasted all night not much sleep .

anyway sorry for the novel im just wondering i have read about a blood test for other antibodies called a TSI test i think , that people say is the difinative test to answer if i have graves for sure or not . but doc said its not a for sure test im confused is there a test that can tell absolutely if you have graves disease or is it like other disease that they dont really have a test for and the diagnoses is from symptoms  ? this just ***** soo bad on one hand im convinced i felt better before i started taking the tapazole but then on the other i know that i was ill before as well because i was not feeling well and having issues thats what brought me to get the blood test in the first place .
could tapazole give you high blood pressure ? could there be other diseases that could cause your tyriod to go out of whack like lymph node disease or cancer or something is there any other things i should be asking doc about ?i just dont know how im going to beabls to take the tapazole for a year or whatever it is with the way i feel how long should it take to start feeling better ? how am i supossed to even know if i am getting better if the med is making me fell sick ?  

[Barb135]

Your test results definitely indicate that you're hyper and they also indicate that you have Hashimoto's, according to the TPOab, though TPOab can be slightly elevated with Graves.  I'd still want the TSI test done to confirm Graves, since TSI is the definitive test.

The medication won't do you any good if you don't take it on a regular basis.  If the tapazole made you ill, your doctor could have prescribed propylthiouracil (PTU) instead to see how that would work.  

Tapazole can be taken, either with or without food, so if you were taking it without food when it made you sick, you should have tried it with food to see if that would help.  The thing is to be consistent every time you take the med - if you take it with food, do it all the time; or without food all the time and at the same time of day...

The RAIU is radioactive iodine and to my knowledge is not the type that will convert to additional thyroid hormones.

[rubysgolden]

ok , thanks again barb maybe i could ask just a couple more things if you wouldn't mind .

is it possible that someone could have a mechanical problem with there neck and spine that could be causing a twisting or pushing on the thyroid like squeezing it  ? some how and cause this  ? or maybe if not a mechanical issue maybe a swollen gland or something else  pushing on the thyroid gland its self .

i ask because i have been having neck and spine issues for a while , and even if i tilt my head back its clearly visible that my throat looks like its being pushed out and to one side kinda bulging one way . i sometimes strain my neck a certain way and get what i can only call a brain stem headache that nothing seems to help with and last for a day or two .  but this it not a goiter no goiters were found when i went to the doc . im going to be asking him this next time i see him but have you ever herd of such a thing ?

i do realize that for now , whatever the cause i need to take the meds to get the hormone levels down but i cant stop wondering  

[Barb135]

Hi there... We need to have more information in order to give you the best advice.  

First off, we need to know your exact TSH, Free T4 and Free T3 levels, along with the reference ranges... I know you did give the one Free T3 at 6.7, with a range of 2.6-5.7... yes, that's quite high and does indicate hyperthyroidism, though not necessarily Graves Disease.

Although Graves is said to be the # 1 cause of hyperthyroidism, hyperthyroidism is also, common in early stages of Hashimoto's Thyroiditis, even though Hashimoto's is, typically, associated with hypothyroidism.  It's not unusual for the thyroid to "dump" large quantities of thyroid hormones prior to one going hypo, with Hashimoto's...  

It's also not unusual for one to have nodules that leak thyroid hormone, independently of the thyroid... a thyroid ultrasound can determine whether you have nodules or not. If you haven't had one, you should ask your endo to order one.  An ultrasound will also show characteristics that can further indicate thyroidititis.  

Blood tests to determine whether one has Hashimoto's are Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TgAb).  Both are needed, since some of us have one or the other and some of us have both.  

You heard right, that the definitive test for Graves Disease is the Thyroid Stimulating Immunoglobulin (TSI) test.  The thing about TSI is that the result is, typically, read as a percentage and one is considered not to have Graves Disease unless the percentage is over 140% or something like that (labs may vary).  The thing is, that if one doesn't have Graves, TSI should be negative...

It "is" also possible for one to have, both, Hashimoto's and Graves, at the same time, with one or the other being dominant at any given time...

Your symptoms, including the high blood pressure, are certainly those of hyperthyroidism.  You just need to have your doctor find the correct cause.

[rubysgolden]

thanks barb ,

my test results from feb 17 were as follows

tsh = .16 ref rang =  .35 to 5
free t 4 = 18 ref range =12 to 22
free t 3  = 6.1 ref range = 2.6 to 5.7
TPO ab = 102 ref range <35kiu/l

after this some time went by before my first appointment with endo doc i had some ups and downs and thought i was actully starting to feel better

next blood test even showed that my tsh was starting to climb back to normal levels but just barely i thought doc was going to say that it was just something that was gonna pass and i wouldnt need any treatment , not that i really knew anything much about graves . test results were from
may 6th

tsh = .39 ref range = .35 to 5
free t4 = 18 ref range =12 to 22
free t3 = 6.2 ref range =2.6 to 5.7
no TPO test done this time

so at first i said i didnt want any meds and i had the RAIU test which i think was 31 percent uptake and no nodules seen then i had one of these weird attacks called doc and he started me on the tapazole and like i said had some trouble with the meds making me sick so tried taking them in half dose and then missing a day here and there wen they made me sick even went for a week or two with none then had the latest attack and went for another blood test date was july 8th results were

tsh = .28 ref range = .35 to 5
free t4 =19 ref range =12 to 22
free t3 = 6.7 ref range 2.6 to 5.7

another thing im wondering is with the RAIU test  , can taking the RAI cause any kind of increased in thyroid hormone ? not sure if im understanding properly or not,  but .... with that test are we actually loading up the thyroid with an over abundance of iodine  ,that the thyroid will then convert to hormones causing an uptick in levels for a sort time after  or am i thinking of this wrong ?  
thanks so much for any more info / help