[misslex]

#1060031

Hello Everyone,

I have a follow-up appointment with my endocrinologist tomorrow that I am very nervous about. My backstory is this: diagnosed in April with GD after receiving bloodwork showing subclinical hyperthyroidism – GD confirmed after sonogram of thyroid and radioactive iodine uptake scan. Started on 10 mg of MMI/day for almost a month, was taken off MMI after my left eyelid swelled. Started 50 mg/PTU, was on that for a week before I developed mouth ulcers and was advised to stop PTU by my endo. I’ve had bloodwork done and my numbers are back in the normal range, starting to swing towards hypo.

My endo wants me to stay off drugs to see if I’m in remission. If I’m not, he thinks RAI would be the next option. I do not see RAI or TT surgery as options currently – my Graves is not that extreme, and it’s possible that the reaction I had to the MMI wasn’t an actual allergic reaction. I understand that there is an antibody test that can help determine whether or not you are actually in remission – does anyone know the name of that test so that I can request it at my appointment tomorrow?

My plan, as such, is to go along with the endo and try being meds-free for a few weeks. If it becomes clear that my GD is still active, I would like to try a very low dose of MMI with antihistamine. If my endo is not open to this as an option, I think it’s time I find a new one. Has anyone had luck after reacting to MMI with combining MMI therapy and antihistamines?

Thanks, as always!

[bigad]

#1179780

misslex wrote:

I understand that there is an antibody test that can help determine whether or not you are actually in remission – does anyone know the name of that test so that I can request it at my appointment tomorrow?

Antibody tests (TRAb, TSI) can be helpful in predicting which patients are in remission.

[misslex]

#1179781

bigad wrote:

misslex wrote:

I understand that there is an antibody test that can help determine whether or not you are actually in remission – does anyone know the name of that test so that I can request it at my appointment tomorrow?

Antibody tests (TRAb, TSI) can be helpful in predicting which patients are in remission.

Thank you!

[Kimberly]

#1179782

Hello – The use of an antihistamine with Methimazole is more common with skin reactions, so I don’t know if this would help you with the eye issue. Of course, since eye involvement can come with Graves’, it’s hard to say whether or not the Methimazole caused that reaction.

The medical guidance recommends the TRAb test when checking for remission, as this test picks up both blocking and stimulating antibodies. The TSI test is specific to stimulating antibodies.

Hope this helps!

[misslex]

#1179783

Thank you, Kimberly!

[Naisly]

#1179784

This is quoted from the company who does the TSI testing from an email I sent them.

Quote:

“Published Guidelines by the ATA which recommend TRAb testing in certain clinical situations. When these Guidelines use the term TRAb they mean anti-TSHR autoantibodies (TSH Receptor antibodies) and they are not distinguishing between tests that measure antibodies that bind to the TSHR (and do not distinguish between stimulating, blocking or neutral) versus TSI which specifically measure stimulating antibodies. The reason that the Guidelines are not specific is that the binding tests have been available for a long time whereas the TSI tests were only FDA-cleared 5 years ago. Since then there are many publications that have demonstrated the value of TSI over TRAb (i.e. binding tests).

Many physicians were trained before either of these anti-TSHR tests were available and became accustomed to using RAIU to diagnose. Although RAIU still has a role, today TRAb/TSI testing coupled with Ultrasound is effective in the vast majority of cases. There is no question that TSI is preferable to TRAb because it provides more information. It will take a while for physicians to adopt TSI more routinely.”

Hope it helps.

[misslex]

#1179785

Naisly wrote:

This is quoted from the company who does the TSI testing from an email I sent them.

Quote:

“Published Guidelines by the ATA which recommend TRAb testing in certain clinical situations. When these Guidelines use the term TRAb they mean anti-TSHR autoantibodies (TSH Receptor antibodies) and they are not distinguishing between tests that measure antibodies that bind to the TSHR (and do not distinguish between stimulating, blocking or neutral) versus TSI which specifically measure stimulating antibodies. The reason that the Guidelines are not specific is that the binding tests have been available for a long time whereas the TSI tests were only FDA-cleared 5 years ago. Since then there are many publications that have demonstrated the value of TSI over TRAb (i.e. binding tests).

Many physicians were trained before either of these anti-TSHR tests were available and became accustomed to using RAIU to diagnose. Although RAIU still has a role, today TRAb/TSI testing coupled with Ultrasound is effective in the vast majority of cases. There is no question that TSI is preferable to TRAb because it provides more information. It will take a while for physicians to adopt TSI more routinely.”

Hope it helps.

It does! Thank you, Naisly!

[misslex]

#1179786

Naisly wrote:

This is quoted from the company who does the TSI testing from an email I sent them.

Quote:

“Published Guidelines by the ATA which recommend TRAb testing in certain clinical situations. When these Guidelines use the term TRAb they mean anti-TSHR autoantibodies (TSH Receptor antibodies) and they are not distinguishing between tests that measure antibodies that bind to the TSHR (and do not distinguish between stimulating, blocking or neutral) versus TSI which specifically measure stimulating antibodies. The reason that the Guidelines are not specific is that the binding tests have been available for a long time whereas the TSI tests were only FDA-cleared 5 years ago. Since then there are many publications that have demonstrated the value of TSI over TRAb (i.e. binding tests).

Many physicians were trained before either of these anti-TSHR tests were available and became accustomed to using RAIU to diagnose. Although RAIU still has a role, today TRAb/TSI testing coupled with Ultrasound is effective in the vast majority of cases. There is no question that TSI is preferable to TRAb because it provides more information. It will take a while for physicians to adopt TSI more routinely.”

Hope it helps.

It does! Thank you, Naisly!

[misslex]

#1179787

Hi Everyone,

My appointment went pretty well. My Endo agreed that I am probably not in remission since I’ve been having trouble sleeping and heart palpitations in the week or so I’ve been off of both PTU and MMI. He agreed to put me on a low-dose of MMI (5 mg/day) combined with a daily antihistamine. Fingers crossed that it works out!

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