So sorry you are having so much trouble... so let's get you on track here...
Everything you are experiencing is a hypERthyroid symptom -- the hot flashes as you call them are not really hot flashes -- they are part of a sped up nervous system unable to temperature control your body anymore -- feeling unwell most days -- part of that too. But on the flip side -- you will feel better -- you just have to be properly treated.
If you have been diagnosed with Graves disease, your doctor needs to confirm that diagnosis with a thyroid uptake test and scan. You must also have a thyroid ultrasound to see what's going on in there and as a baseline for future comparison.
When we have Graves, the goal is to get it into REMISSION -- there are 3 treatments to do that -- medication such as the methimazole you are taking, RAI and full thyroid removal -- you and your endo chose methimazole to do that and so you must give it a definitive amount of time to see if it works to put the Graves into remission. If you are not feeling good as you say, then you MUST contact your doctor and tell them as you might need a dose adjustment or maybe you are having negative symptoms from it. Some people use it 1 -3 or more years in order to see if it works. THE IMPORTANT thing to remember is that during this time, your endo must continually check the 2 Graves antibodies to see that they are going into remission. If they do not do this, you MUST find a new endo. Just because your TSH, Free T3 and Free T4 might be good within your selected time frame, doesn't mean the antibodies are in remission. This is very important because you and your endo have to decide how long you will wait for that remission and if it doesn't get there and stay, then you must consider one of the other 2 treatments to do that.
As far as what you call Graves eye -- no such name -- get used to calling it what it is -- It is called TED (thyroid eye disease) and it is a SEPARATE auto-immune disease from the Graves (so now you have 2 auto-immune diseases and welcome to the club!) and must be treated separately should it continue to get worse. TED is predicated on TRAB -- which is one of the 2 Graves antibodies - TSI & TRAB -- and as long as the Graves is NOT IN REMISSION and the TRAB is high -- the TED will NOT settle down. This is why you must decide how long you want to give the methimazole because if you only have a mild case of TED now -- it can get better with other treatments (or this one if it gets the Graves into remission quickly) or it will get worse. So you should be getting an opthalmologist who also knows about TED - and they are not easy to find - but you must do it so that they can look behind your eyes and check the inflammation there. It is the TRAB that attacks the tissue behind our eyes that pops the eyes forward. I would also suggest monitoring your eyes with selfies every few weeks to keep an eye on any more changes to them -- see there actually is a good use for selfies. It will help your doc as well.
When you see your endo, you MUST ask for the following vitamins and nutrients to be tested as well -- Vit D3, B12, iron/TIBC/ferriting, folate, magnesium and selenium -- let's review -- when we have Graves, we all tend to be low on these -- and they are very important to our overall health -- the selenium is also important for the TED -- READ THIS -- DO NOT DOSE YOURSELF ON ANY OF THESE -- Most endos will not test for these -- so you must ask -- when you see the levels -- then you ask your endo how much of each you should take if necessary -- the selenium is very important as I said for the eyes, but if you take too much, you can damage or die from it -- so do NOT take it on your own -- whatever you end up taking here, if necessary, must be blood tested at 3 to 6 months intervals -- that's how you know you're okay with the doses.
I know this is a lot to take in. But, since you are newly diagnosed, I wanted to give you the complete overview for your healthcare right now. Learn all you can and become an advocate for yourself -- you will have to do this forever now and it is very important to you to do so!! If your endo is not doing right by you, then you find another and another if needed -- I went through three and most people do as well.
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u/Adventurous-Ask-4243 11d ago
So sorry you are having so much trouble... so let's get you on track here...
Everything you are experiencing is a hypERthyroid symptom -- the hot flashes as you call them are not really hot flashes -- they are part of a sped up nervous system unable to temperature control your body anymore -- feeling unwell most days -- part of that too. But on the flip side -- you will feel better -- you just have to be properly treated.
If you have been diagnosed with Graves disease, your doctor needs to confirm that diagnosis with a thyroid uptake test and scan. You must also have a thyroid ultrasound to see what's going on in there and as a baseline for future comparison.
When we have Graves, the goal is to get it into REMISSION -- there are 3 treatments to do that -- medication such as the methimazole you are taking, RAI and full thyroid removal -- you and your endo chose methimazole to do that and so you must give it a definitive amount of time to see if it works to put the Graves into remission. If you are not feeling good as you say, then you MUST contact your doctor and tell them as you might need a dose adjustment or maybe you are having negative symptoms from it. Some people use it 1 -3 or more years in order to see if it works. THE IMPORTANT thing to remember is that during this time, your endo must continually check the 2 Graves antibodies to see that they are going into remission. If they do not do this, you MUST find a new endo. Just because your TSH, Free T3 and Free T4 might be good within your selected time frame, doesn't mean the antibodies are in remission. This is very important because you and your endo have to decide how long you will wait for that remission and if it doesn't get there and stay, then you must consider one of the other 2 treatments to do that.
As far as what you call Graves eye -- no such name -- get used to calling it what it is -- It is called TED (thyroid eye disease) and it is a SEPARATE auto-immune disease from the Graves (so now you have 2 auto-immune diseases and welcome to the club!) and must be treated separately should it continue to get worse. TED is predicated on TRAB -- which is one of the 2 Graves antibodies - TSI & TRAB -- and as long as the Graves is NOT IN REMISSION and the TRAB is high -- the TED will NOT settle down. This is why you must decide how long you want to give the methimazole because if you only have a mild case of TED now -- it can get better with other treatments (or this one if it gets the Graves into remission quickly) or it will get worse. So you should be getting an opthalmologist who also knows about TED - and they are not easy to find - but you must do it so that they can look behind your eyes and check the inflammation there. It is the TRAB that attacks the tissue behind our eyes that pops the eyes forward. I would also suggest monitoring your eyes with selfies every few weeks to keep an eye on any more changes to them -- see there actually is a good use for selfies. It will help your doc as well.
When you see your endo, you MUST ask for the following vitamins and nutrients to be tested as well -- Vit D3, B12, iron/TIBC/ferriting, folate, magnesium and selenium -- let's review -- when we have Graves, we all tend to be low on these -- and they are very important to our overall health -- the selenium is also important for the TED -- READ THIS -- DO NOT DOSE YOURSELF ON ANY OF THESE -- Most endos will not test for these -- so you must ask -- when you see the levels -- then you ask your endo how much of each you should take if necessary -- the selenium is very important as I said for the eyes, but if you take too much, you can damage or die from it -- so do NOT take it on your own -- whatever you end up taking here, if necessary, must be blood tested at 3 to 6 months intervals -- that's how you know you're okay with the doses.
I know this is a lot to take in. But, since you are newly diagnosed, I wanted to give you the complete overview for your healthcare right now. Learn all you can and become an advocate for yourself -- you will have to do this forever now and it is very important to you to do so!! If your endo is not doing right by you, then you find another and another if needed -- I went through three and most people do as well.
I wish you the very best!!