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Do I have Graves? Hashimotos? Both?
I have TPO at 560, TSI at 140, and anti thyroglobulin at 43. All of these are above normal levels. I feel awful. I also have painful thyroid gland with nodules, slightly enlarged. RAIU exam was low normal at 8.7% after 6 hours. I am so sick of all of this and am begging doctors for help. All seem to be hung up on the magic TSH number that has remained normal although all over the place. High to low, and then back. I have also had a very high reverse T3 during a thyrotoxic period with a high T4, but a low normal T3. My body is exhaused from all of this. I am trying to find out what to do, but every doctor I have been to has been of no help. Have "thyroiditis" is all they will say, and basically don't know what to do to treat. Neck has been very painful this week following an upper respiratory infection. Eyes red all the time and hurt like a headache behind them. Any suggestions? Ideas?
To AR. I love the way you explained all this for Mattie. It really made sense and helped me so much to because I am in exactly the same boat. Swinging TSH in normal levels but going from borderline low to borderline high. They won't treat me either yet. I have no antibodies yet either. But they're testing my TFTs and Antibodies every 4 weeks now. Stella also thought it could be Graves and Hashis mixed up like you've said, but the antibodies just havn't showed up properly yet because it's early in the disease. So to Mattie, hold on in there I know exactly how you feel, and I can't get treatment yet either for the reasons AR has explained. To AR, thanks again for all that information even though it wasn't my post!
Yes, it is going to die eventually. Getting them to ablate it before your TSH goes out of range is not going to happen.
I understand your last two sentences fully, and frankly, that should be your goal and your concern. But you are in an early stage of your disease, and the doctor is not going to remove organs without compelling reasons.
Right now if your TSH is still bouncing up and down, but within lab range, there is not anything the doctor can do.
When the thyroiditis passes you will go hypo and then you'll be put on Synthroid or Levoxyl or some T4 med. Then the challenge will be to keep you euthroid, neither hypo nor hyper.
If you have Grave's and Hashimoto's, and your antibodies go up, then you will not be able to get your hormones stablized. If the swings up and down are severe enough, THEN they will talk about nuclear destrucion.
Go to my bio page. Read my journal. Don't let them putz you around like I was. But right now there is not much to do until you show a couple TSH tests in a row that are high. Until you show a couple of tests in a row that indicate medicating is correct, you are stuck.
I understand your last two sentences fully, and frankly, that should be your goal and your concern. But you are in an early stage of your disease, and the doctor is not going to remove organs without compelling reasons.
Right now if your TSH is still bouncing up and down, but within lab range, there is not anything the doctor can do.
When the thyroiditis passes you will go hypo and then you'll be put on Synthroid or Levoxyl or some T4 med. Then the challenge will be to keep you euthroid, neither hypo nor hyper.
If you have Grave's and Hashimoto's, and your antibodies go up, then you will not be able to get your hormones stablized. If the swings up and down are severe enough, THEN they will talk about nuclear destrucion.
Go to my bio page. Read my journal. Don't let them putz you around like I was. But right now there is not much to do until you show a couple TSH tests in a row that are high. Until you show a couple of tests in a row that indicate medicating is correct, you are stuck.
Yeah I have tried the journal thing too. I wrote a long letter to my endo who I will see again in about a month. Sent labs, ultrasounds, etc and just basically said if there is nothing you can do yet I won't bother making the 3 hour drive to see you. Kind of blunt, but tired of hearing your levels are in normal range and spending 5 minutes and $200 to hear it, all the while feeling miserable. I am hoping that they will just take the darn thing out. After all, its gonna die anyway. I am just hoping to out live it at this point with some quality left in my life.
It sounds like you may have both Hashimoto's and Grave's.
Your TGab is low. the cut-off is 40, isn't it?
I would use the low TGab to dismiss your theory, but your symptoms and history point toward Hashimoto's, yet you have TSI antibodies that will come into play at some point. Your TSI antibodies say Grave's, and the TPOab could back that up, but your symptoms are not Grave's symptoms.
Right now with your TSH going up and down, there is not much they can do. If you go into a hypo phase you will get hypo meds. If you go into a hyper phase, you will get hyper meds.
You are early on in the disease and your thyroid hasn't gone to pot yet. If you have Hashimoto's Toxicosis, which is Hashi's and Grave's, eventually the irratic gland behavior will increase until they put you on "block and replace" therapy.
When the swelling and thyrotoxicosis clears, you will go hypo. What happens then is a guess. You will probably end up on Synthroid or Levoxyl to treat the hypotyroidism, but you will have to watch your blood levels closely. Every month.
If you have Hashimoto's Toxicosis, you will go through a series of extreme ups and downs that will confound the Dr.s and you will end up on no meds. Then they will try Block and Replace. Finally they will eradicate the gland.
Most Endo's will not entertain the possibility of having both. It is not supposed to happen. It is not in their files.
My experience with it is in my journal.
Your TGab is low. the cut-off is 40, isn't it?
I would use the low TGab to dismiss your theory, but your symptoms and history point toward Hashimoto's, yet you have TSI antibodies that will come into play at some point. Your TSI antibodies say Grave's, and the TPOab could back that up, but your symptoms are not Grave's symptoms.
Right now with your TSH going up and down, there is not much they can do. If you go into a hypo phase you will get hypo meds. If you go into a hyper phase, you will get hyper meds.
You are early on in the disease and your thyroid hasn't gone to pot yet. If you have Hashimoto's Toxicosis, which is Hashi's and Grave's, eventually the irratic gland behavior will increase until they put you on "block and replace" therapy.
When the swelling and thyrotoxicosis clears, you will go hypo. What happens then is a guess. You will probably end up on Synthroid or Levoxyl to treat the hypotyroidism, but you will have to watch your blood levels closely. Every month.
If you have Hashimoto's Toxicosis, you will go through a series of extreme ups and downs that will confound the Dr.s and you will end up on no meds. Then they will try Block and Replace. Finally they will eradicate the gland.
Most Endo's will not entertain the possibility of having both. It is not supposed to happen. It is not in their files.
My experience with it is in my journal.
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