Hi this is a cut and paste I wrote for someone else the other day with edits just for you I had Graves, Hashis, Thyroid Eye Disease (TED) and thyroid cancer. I had a TT in 2011 and I declined RAI.
Welcome to the rollercoaster that is Graves and the circus that is the treatment!
Sorry about the Graves, it's no picnic. First of all, what is your GP doing for you RIGHT NOW? Get copies of your blood results - specifically the TSH, FT3 and FT4 and post here if you can. If you have palps and fast pulse, you are going to the loo a lot and have fine tremors in your hands, anxiety, panic, and generally just feeling wired, you need to be on medication NOW. The very least your GP can do is put you on betablockers (these protect the heart and slow down T4 to T3 conversion) and also he should be on the phone to the endo immediately, regardless of how far away your endo appointment is and get you on some carbimazole NOW. Carbimazole (or anti thyroid drugs) slow down your thyroid, and it also tamps down antibodies. It's a powerful drug and needs careful monitoring but you need to be helped now.
Secondly you need a referral to a specialist TED eye doctor NOW ... if you smoke, you must stop immediately as this will really aggravate your eyes. You must NOT be allowed to go HYPO at any point (easy to do on ATDs, they work fast) as this will vastly worsen your eye disease. If you are in the UK then Moorfield's eye hospital under Prof Geoff Rose is the best place for you. That needs sorting out asap. Meanwhile go to the pharmacy and get some lacrilube for use at night, and some eye gel, tell the pharmacist what your condition is and they should be able to prescribe some gel tears to keep your eye from feeling too gritty. Your eye doctor needs to work in tandem with your endo to ensure you are stabilised and brought under control. RAI is not recommended if you have eye disease as it can significantly worsen the antibody activity (this means they will push you for a TT, more on this later ... a TT is a very very last resort).
As for endos, there is not a lot of love lost between most thyroid patients and their doctors, but there are some good ones out there. Main thing is that your doctor is LISTENING to you and is your partner. You want to ask about antibodies, and make sure they test the full panel, so TRAB (or TSI) - these are TSH receptor antibodies and are diagnostic for Graves, also TPO (60% of Graves patients have TPO antibodies, although they are usually found in Hashimotos disease) and TgAb (thyroglobulin antibodies) - if you have all three, you have hashis and graves which is harder to control, but important to know. You might find they are resistant to this idea as you have TED so they already know you have TSH Receptor antibodies (this is what happened to me, and I was left a long time feeling like holy hell as I had two concurrent autoimmune diseases going on, and also this is how they missed the cancer) but stick to your guns. You need to know. From here on out make sure you get copies of everything, and make sure all letters about you are 'cc the patient' - these people work for YOU and for YOUR welfare, all data pertaining to you, belongs to YOU.
They might want to do a scan, an iodine reuptake scan where they use a tiny weeny amount of radioactive iodine (don't worry about this, it's a really small amount) to scan the thyroid and see if you have nodules and what is going on in your thyroid. This is a good idea.
Also, remember that things going a bit 'too fast' in terms of your body and your thoughts, is part of your disease, it's not YOU, so important not to rush into irreversible decisions. Endos seem to be fond of removing the thyroid or Radiation and they are obsessed with 'remission' but there's no reason you can't stay on low dose anti thyroid drugs (ATDs) for years, provided you are stable and your blood results stay in normal range and your liver enzymes are normal - you might also want to look into low dose naltrexone, this might also be beneficial for your other auto immune issues.
You need to be regularly monitored, with blood tests every two weeks ideally as it's easy to overshoot with ATDs and being sent hypO is no fun at all. Graves disease should be monitored by the FT3 result, not the TSH (as you have TSH receptor antibodies, so even if signficiantly hypO your TSH can remain suppressed, any doctor treating you by your TSH when you have Graves disease, run, run, run as fast as your legs can carry you!).
You might want to ask about block and replace also, which is when they give you enough ATDs to shut the thyroid down, and then replace with levothyroxine, some Graves patients prefer this option.
Also, as your digestion has been going too fast, and your body will have been using up nutrients and co factors too fast, it would be good if they test your iron (full iron panel), vit D, folate, B12, zinc etc as active graves can cause imbalances.
You might also like Elaine Moore's website re Graves elaine-moore.com/Articles/G...
Write things down in the appointment as as your numbers fall you will find it harder to remember things. And remember, the victim is your thyroid, and the perpetrator is your immune system ... killing or removing your thyroid doesn't mean you won't have Graves, so perhaps looking into ways you can calm your immune system and reduce stress will help.
But your immediate priority is to be safe, and your GP can help with that by prescribing betablockers and ATDs as an interim until you can get to the endo. You might also want to look into L-Carnitine, this slows down T3 to T4 conversion (again you need to monitor how long you stay on it, as it does work, and you don't want to push your body into hypO). Magnesium (I like mag chloride) is good for palps as is soaking in a bath with magnesium flakes. Take it very very easy, you are very seriously ill and the blase manner in which the illness is treated is a source of great annoyance for most of us.
Keep us posted!