Graves question: Has anyone with Graves disease... - Thyroid UK

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Graves question

JennaShi profile image
9 Replies

Has anyone with Graves disease gotten a Tsi antibodies test or been diagnosed this way?

Even further question, has anyone with hashimotos who has previously been diagnosed with Graves disease gotten this antibody test? Did anything show up?

I recently came across a person who was having a dimilar issue (low t3) but was having racing heart and palptitations. Is this normal for hashimotos? If so what can someone do about it if they have to raise their t3.. is t that dangerous?

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JennaShi profile image
JennaShi
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9 Replies
Rmichelle profile image
Rmichelle

Hi there i have hashis and was tested by antibody test tpo but i also have graves according to endo but he refused to do tsi test as he said it was not necessary, i am currently on titration doses of carbimazole over last 8 months but i do get hashi flares which do give me palps,trembles jittery etc which is usually a hyper swing for a few days, i have had a ecg and a holter monitor fitted for 24 hours-i do have a slight sinus rythmn and ectopic heart beat but with any type of thyroid disease whether its hypo and hashis or hyper and graves heart issues are no surprise as hyper and hypo bith give out palps etc. If you are concerned get your gp to send you for a holter machine to be fitted.xx

JennaShi profile image
JennaShi in reply to Rmichelle

Hi Rmichelle, thanks for your reply! Wow that is very interesting. I didnt know that it could be possible to have both hyper and hypo. However flares would make sense. Do you think ypur doctor is going off of the fact that you already show a autoimmune disease with your tpo and constant heart racing/ palps? Do you think its just flares or has he tested your thyroid and found that its stay hyper fpr a while? How do feel ? I was looking up tpo antibodies and found that they are common within hashi and graves disease. So that could be another indication for you?

I previously had hyperthyroidism and my endo said she thought ot was graves. I didnt know what that was and still kind of dont but i was hyper for i think a couple years before getting the rai treatment and i went from being hyper (for close to 5 years) to normal to hypo/ hashi (the last two years). I am going to get a test soon for the tsi, but am nervous and not sure now if antibodies will show up if I had graves due to the rai treatment or if I had graves.

How do you raise your ft3 if your heart has these hyper spells?

Rmichelle profile image
Rmichelle in reply to JennaShi

I am due to have a dose change of carbi next week after seeing endo as i am currently been on 2.5mgs but will drop to 1.25 so that will raise my ft3 and ft4 into upper range hopefully, my gp has nothing to do with my care its down to my useless endo-im on my 3rd as both previously wont discuss hashis etc!!😈 i have had 2 thyroid scans whixh have confirmed chronic hashi damage with nodules whixh endo is yet to discuss. My levels are wirhin clinical range but still not right as i think im overmedicated which does not help with heart palps etc and i also have iron defiency too whixh i have been supplementing and managed to raise it from 10 to 27 in 3 months.

Lol😊 im afraid gps are not very knowledgeable when it comes to the thyroid and they have not had any involvement in my testing at all especially with monitiring-i get regular blood work every 6 weeks and my levels are never showing a higher free3 or 4 to suggest hyper activity. You can have hashi and graves but not at the same time as one another.😊😊

JennaShi profile image
JennaShi in reply to Rmichelle

Ohh, is carbimazole a hyperthyroid medicine? I apologize, Icam not familiar with the name. I took Methimazole but adter researching it looks like they are similar. I can see why you would be having heart issues? If your labs are clearly not showing hyperthyroid, would taking a hyper thyroid med make your thyroid more surpressed? I guess I am a pittle confused by what you are saying with your labs and with what the doctor is giving you and trying to understand. I hope reducing the meds will help for sure. I did look online with the stop the thyroid maddness website and it looks like you can order your own TSI as well as tpo and tgab antibodies test. I believe its the same for UK, I am not in the UK. But I was able to find out my antibodies through order from them. It could be helpful since the doctors dont lke to test those things as you have mentioned. Its sounds like your thyroid is confusing! I hope that you are able to get it sorted out so you can feel much better!

Rmichelle profile image
Rmichelle in reply to JennaShi

Hi there i was hyperthyroud back in july and was on 20mgs but nowcim on just 2.5mgs titration down doses as carbi is taken in very tiny doses for 12 to 18 months to keep me in the range. I will come off meds around october time to see whether ive stabilised. Yes good luck with your thyroid too.😊😊

JennaShi profile image
JennaShi in reply to Rmichelle

Ohh ok gotcha, now I understand. Thank you for explaining it to me and Thank you :)!

Rmichelle profile image
Rmichelle

Oh forgot to mention my ft3 does sit in the lower range and im trying to raise it to higher in the range.😊

I think that TSI or TRab tests are the ONLY way to be sure tha tyou have Graves, not some other form of thyroiditis (including Hashis in the high hormone/flare stage)

JennaShi profile image
JennaShi

Yes, i agree. I dont understand how doctors diagnose graves for sure wothout this test.

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