Aa
Hashimotos', Graves', other ... which do you have?
While at the doctor with my daughter today, the nurse practitioner told me that she has had three people come thru the office recently that were diagnosed with Graves'. It made me wonder how common thyroid disorders were.
Please check the option that fits your own situation and if you will, please give a little detail.
How long ago were you first diagnosed?
What were your first test results that confirmed your situation? Did they go higher or lower as you were treated or own their own (without treatment)?
What treatment option did you choose, why and are you happy with it?
Did you ever go in remission? For how long?
What lifestyle changes have you had to make to adjust to your situation?
Did you adjust your diet in any way? If so, how and why?
What other things can you share that would be beneficial to a newly diagnosed person with either of these situations?
Please check the option that fits your own situation and if you will, please give a little detail.
How long ago were you first diagnosed?
What were your first test results that confirmed your situation? Did they go higher or lower as you were treated or own their own (without treatment)?
What treatment option did you choose, why and are you happy with it?
Did you ever go in remission? For how long?
What lifestyle changes have you had to make to adjust to your situation?
Did you adjust your diet in any way? If so, how and why?
What other things can you share that would be beneficial to a newly diagnosed person with either of these situations?
Wow! For some reason, I would have thought more would have posted about Graves. Maybe its just my thinking. Ifs off these days anyway ;).
How long ago were you first diagnosed? Last week
What were your first test results that confirmed your situation?
Antibodies test = 279 with below 129 as negative, and over 139 as posititve. I'm positive for Graves'.
Did they go higher or lower as you were treated or own their own (without treatment)? Have not had them tested again.
What treatment option did you choose, why and are you happy with it? Currently I am being treated with Methamizole. My numbers were slowly coming down on their own so I hope the meds will work and I will eventually go into remission (if that is possible). I will do a more permanent option if that is needed down the road. I just want to give it more time first.
Did you ever go in remission? For how long? N/A
What lifestyle changes have you had to make to adjust to your situation? No real changes yet, only education. Discussing everything about it with my husband.
Did you adjust your diet in any way? If so, how and why? No but I am sure I need to.
What other things can you share that would be beneficial to a newly diagnosed person with either of these situations? N/A
How long ago were you first diagnosed? Last week
What were your first test results that confirmed your situation?
Antibodies test = 279 with below 129 as negative, and over 139 as posititve. I'm positive for Graves'.
Did they go higher or lower as you were treated or own their own (without treatment)? Have not had them tested again.
What treatment option did you choose, why and are you happy with it? Currently I am being treated with Methamizole. My numbers were slowly coming down on their own so I hope the meds will work and I will eventually go into remission (if that is possible). I will do a more permanent option if that is needed down the road. I just want to give it more time first.
Did you ever go in remission? For how long? N/A
What lifestyle changes have you had to make to adjust to your situation? No real changes yet, only education. Discussing everything about it with my husband.
Did you adjust your diet in any way? If so, how and why? No but I am sure I need to.
What other things can you share that would be beneficial to a newly diagnosed person with either of these situations? N/A
I was dx'd with hypothyroidism last September 08... My TSH was the problem really but I had all the symptoms... I was started on 50mcg eltroxin and tested 6 weeks later... Apparently everything was fine!
I ended up changing docs as his receptionist (wife) never spoke ploitly to me..And thats an understatement!
New doc tested thyroid again, TSH shot up to 16.05 from 2.41! Meds doubbled to 100. Antibodies were tested 2 weeks ago abd confirm I have hashimoto;s. Thyroglobulin were high! So Im still going through the motions really! My TSH is at 4.33 at the mo and new doc thinks its fine.... It a constant fight to get people to listen to me and stil there not!
Whan to get it removed as I have a really bad sore throat and anxiety that is a KILLER!
DOn't know if he will agree!
I ended up changing docs as his receptionist (wife) never spoke ploitly to me..And thats an understatement!
New doc tested thyroid again, TSH shot up to 16.05 from 2.41! Meds doubbled to 100. Antibodies were tested 2 weeks ago abd confirm I have hashimoto;s. Thyroglobulin were high! So Im still going through the motions really! My TSH is at 4.33 at the mo and new doc thinks its fine.... It a constant fight to get people to listen to me and stil there not!
Whan to get it removed as I have a really bad sore throat and anxiety that is a KILLER!
DOn't know if he will agree!
COMMUNITY LEADER
I have Hashimoto's and like Red, I think I'll pretty much write a book....
How long ago were you first diagnosed?
I was dx’d hypo in June ’08. Was sent to an ENT in Oct 08 with what the nurse practitioner THOUGHT was an unrelated problem, but the ENT sent me for more tests and ultimately dx’d Hashimoto’s, multinodular goiter.
What were your first test results that confirmed your situation? Did they go higher or lower as you were treated or own their own (without treatment)?
TSH of 55.51, Free T4 =0, no Free T3 was run. Later, TPOab came back at 150+ (can’t remember exact #). Following treatment, TSH went down to 0.01, Free T4 up to 1.0; meds were reduced (3 different times) based on TSH result which showed hypER, still no Free T3 run. *I* finally found a lab that would run tests w/o doctor’s order and had a TSH, Free T4 and Free T3. TSH was still low and both Free T4 and Free T3 were at the very bottom of their ranges. Next stop: Endo in Jan 2009
What treatment option did you choose, why and are you happy with it?
I got the endo to give me a script for levothyroxine + cytomel. And have been on that now since Jan. At my last endo appt, he wanted to take away the cytomel, but I talked him out of it, because my Free T3 was STILL at the bottom of the range. I just had new blood work done this past Monday, got results yesterday and Free T4 and Free T3 are still bottom of range. I go back to endo on the 30th of June and will ask for increase in BOTH levothyroxine and cytomel OR am considering switching to Armour or Nature-throid.
Did you ever go in remission? For how long? No
What lifestyle changes have you had to make to adjust to your situation?
Lifestyle changes mostly include carrying a tote bag with all the various meds/vitamins, etc that I have to get into my body throughout the day. I’m tired a lot so have to try to make sure I get enough sleep, which is often difficult at best, since a lot of nights I don’t sleep well at all. I also have pernicious anemia, dx’d in June ’07, so have added a B12 shot every 2 weeks to my regimen.
Did you adjust your diet in any way? If so, how and why?
I gained a lot of weight (30 lbs) prior to dx, so I’ve had to make an effort to try to lose it in spite of my levels not being optimal yet. I make every effort to keep my food as close to “raw” as I can – fresh fruits, veggies, etc. I also believe that I might have some insulin resistance going on, as my fasting blood sugars are often over 100, but since they were “normal” – 99 – on the day of the lab test, my pcp refused to talk to me about THAT; therefore, I’m making every effort to eat in such a way as to get rid of the excess poundage AND keep my blood sugars in line.
What other things can you share that would be beneficial to a newly diagnosed person with either of these situations?
I know it doesn’t work for everyone, but along with the calcium I have to take daily to keep my osteopenia in line, I’ve added magnesium and selenium along with it. The magnesium helps keep the muscles/joint aches/pains under control; omega 3’s also can help with that. Selenium helps keeps the antibodies from raging out of control. It does not get rid of them, in fact, mine numbers are going steadily higher, but it does help calm them….
How long ago were you first diagnosed?
I was dx’d hypo in June ’08. Was sent to an ENT in Oct 08 with what the nurse practitioner THOUGHT was an unrelated problem, but the ENT sent me for more tests and ultimately dx’d Hashimoto’s, multinodular goiter.
What were your first test results that confirmed your situation? Did they go higher or lower as you were treated or own their own (without treatment)?
TSH of 55.51, Free T4 =0, no Free T3 was run. Later, TPOab came back at 150+ (can’t remember exact #). Following treatment, TSH went down to 0.01, Free T4 up to 1.0; meds were reduced (3 different times) based on TSH result which showed hypER, still no Free T3 run. *I* finally found a lab that would run tests w/o doctor’s order and had a TSH, Free T4 and Free T3. TSH was still low and both Free T4 and Free T3 were at the very bottom of their ranges. Next stop: Endo in Jan 2009
What treatment option did you choose, why and are you happy with it?
I got the endo to give me a script for levothyroxine + cytomel. And have been on that now since Jan. At my last endo appt, he wanted to take away the cytomel, but I talked him out of it, because my Free T3 was STILL at the bottom of the range. I just had new blood work done this past Monday, got results yesterday and Free T4 and Free T3 are still bottom of range. I go back to endo on the 30th of June and will ask for increase in BOTH levothyroxine and cytomel OR am considering switching to Armour or Nature-throid.
Did you ever go in remission? For how long? No
What lifestyle changes have you had to make to adjust to your situation?
Lifestyle changes mostly include carrying a tote bag with all the various meds/vitamins, etc that I have to get into my body throughout the day. I’m tired a lot so have to try to make sure I get enough sleep, which is often difficult at best, since a lot of nights I don’t sleep well at all. I also have pernicious anemia, dx’d in June ’07, so have added a B12 shot every 2 weeks to my regimen.
Did you adjust your diet in any way? If so, how and why?
I gained a lot of weight (30 lbs) prior to dx, so I’ve had to make an effort to try to lose it in spite of my levels not being optimal yet. I make every effort to keep my food as close to “raw” as I can – fresh fruits, veggies, etc. I also believe that I might have some insulin resistance going on, as my fasting blood sugars are often over 100, but since they were “normal” – 99 – on the day of the lab test, my pcp refused to talk to me about THAT; therefore, I’m making every effort to eat in such a way as to get rid of the excess poundage AND keep my blood sugars in line.
What other things can you share that would be beneficial to a newly diagnosed person with either of these situations?
I know it doesn’t work for everyone, but along with the calcium I have to take daily to keep my osteopenia in line, I’ve added magnesium and selenium along with it. The magnesium helps keep the muscles/joint aches/pains under control; omega 3’s also can help with that. Selenium helps keeps the antibodies from raging out of control. It does not get rid of them, in fact, mine numbers are going steadily higher, but it does help calm them….
Waiting for my first Endo appt, pretty sure it is Hashi's. So far diagnosed as Hypo. TSH 13.2 (way high), FT4 low normal. Was put on 50 mg of Synthroid (I use generic). I am also taking Inderol for heart palps and Buspar for anxiety. For some reason, my anxiety and heart palps are mainly at night! Can some one tell me why that is?
I now only drink water or juice. I used to LOVE sweet tea, oh no... not any more. I see tea and will almost turn and run for fear of what it does to my adrenal system. I feel a lot better on the nights that I actually sleep. I try to eat more living foods, except broccali (some how uncooked broccali is bad for people with thyroid disorder). I have been feeling better since I started taking vitamines daily. I take a good multi, vit D, calcium, magnesium, b12, b-complex, and omega 3. I was put on Synthroid a month ago, and resently lost the diarreah and nausiousness. It will sometimes come back on a bad night -temporarily. So... I guess it is either the Synthroid the vitamines or both that have helped me to manage a little better.
I now only drink water or juice. I used to LOVE sweet tea, oh no... not any more. I see tea and will almost turn and run for fear of what it does to my adrenal system. I feel a lot better on the nights that I actually sleep. I try to eat more living foods, except broccali (some how uncooked broccali is bad for people with thyroid disorder). I have been feeling better since I started taking vitamines daily. I take a good multi, vit D, calcium, magnesium, b12, b-complex, and omega 3. I was put on Synthroid a month ago, and resently lost the diarreah and nausiousness. It will sometimes come back on a bad night -temporarily. So... I guess it is either the Synthroid the vitamines or both that have helped me to manage a little better.
I have Hashimoto's . I can see I am going to seriously write the book about my long road to this day!
I will try to make it as brief as I can for you.
How long ago were you first diagnosed?
May 07 whilst in surgery. Hashimoto's thyroiditis. (How the heck they never figured that out BEFORE that beats me!)
What were your first test results that confirmed your situation?
After having the surgery still felt cruddy months later. I insisted on anti-bodies test showing high levels. Only after 2nd surgery was put on thryoxine.
Did they go higher or lower as you were treated or own their own (without treatment)?
My tests weren't done properly over the 15 years before surgery. After 1 st surgery and no replacement meds, my levels were still too high, (but within Australian ref ranges, which by the way are totally useless as a diagnostic tool!)
What treatment option did you choose, why and are you happy with it?
I didn't have a choice. Had to be replacement hormone as I have no thyroid at all now. No I am not happy with it. I need a T3 mix but here it is nigh near impossible to get it and also get doctor's to accept that line of thinking.
Did you ever go in remission? For how long?
Over the 15 years I know I went into 'normalacy' at least twice. No lab tests to prove that, only that my weight stabilised ( I had lost over 60 lbs without trying) and moods were much better,..then I went into the hypo stage of Hashimoto's. The gap the first time was about 8 months. 2nd time was about a year.
What lifestyle changes have you had to make to adjust to your situation?
What life!? Find I can't be as spontaneous to go some where and stay a few days or camp out like I used to. Our meds MUST be kept refrigerated.
Did you adjust your diet in any way? If so, how and why?
Total change in diet, no longer a vegetarian, but a semi-vegie. Too much soy interferes with my medication. (Funny enough my family say they can't have soy at all as they feel totally weird after it, yet were fine before on thyroxine!) No longer am able to eat wheat (gluten intolerant not true Cealiac) A million and ten calcium tablets a day. I believe my parathyroids were damaged in surgery.
What other things can you share that would be beneficial to a newly diagnosed person with either of these situations?
Don't expect a miracle cure. It is a lifelong battle and to not expect to feel 'normal' immediately. Be realistic in your expectations. Get educated as much as you can and find a support group like this one.
Hope that doesn't bore you!
I will try to make it as brief as I can for you.
How long ago were you first diagnosed?
May 07 whilst in surgery. Hashimoto's thyroiditis. (How the heck they never figured that out BEFORE that beats me!)
What were your first test results that confirmed your situation?
After having the surgery still felt cruddy months later. I insisted on anti-bodies test showing high levels. Only after 2nd surgery was put on thryoxine.
Did they go higher or lower as you were treated or own their own (without treatment)?
My tests weren't done properly over the 15 years before surgery. After 1 st surgery and no replacement meds, my levels were still too high, (but within Australian ref ranges, which by the way are totally useless as a diagnostic tool!)
What treatment option did you choose, why and are you happy with it?
I didn't have a choice. Had to be replacement hormone as I have no thyroid at all now. No I am not happy with it. I need a T3 mix but here it is nigh near impossible to get it and also get doctor's to accept that line of thinking.
Did you ever go in remission? For how long?
Over the 15 years I know I went into 'normalacy' at least twice. No lab tests to prove that, only that my weight stabilised ( I had lost over 60 lbs without trying) and moods were much better,..then I went into the hypo stage of Hashimoto's. The gap the first time was about 8 months. 2nd time was about a year.
What lifestyle changes have you had to make to adjust to your situation?
What life!? Find I can't be as spontaneous to go some where and stay a few days or camp out like I used to. Our meds MUST be kept refrigerated.
Did you adjust your diet in any way? If so, how and why?
Total change in diet, no longer a vegetarian, but a semi-vegie. Too much soy interferes with my medication. (Funny enough my family say they can't have soy at all as they feel totally weird after it, yet were fine before on thyroxine!) No longer am able to eat wheat (gluten intolerant not true Cealiac) A million and ten calcium tablets a day. I believe my parathyroids were damaged in surgery.
What other things can you share that would be beneficial to a newly diagnosed person with either of these situations?
Don't expect a miracle cure. It is a lifelong battle and to not expect to feel 'normal' immediately. Be realistic in your expectations. Get educated as much as you can and find a support group like this one.
Hope that doesn't bore you!
I was diagnosed with Graves a little over 4 years ago. I went in for a physical because my blood pressure was higher than it should have been. While I was there, the physicians assistant noticed I was very hyper - couldn't keep my hands still (I hadn't noticed it until she pointed it out). Of course, I stupidly had been ignoring symptoms for MONTHS - probably could have died from a thyroid storm if I weren't so lucky.
Anyway, I did a year of methimazole, then chose to have a total thyroidectomy. I have had not one minute of regret about the surgery - lots of problems disappeared with my crazy thyroid. It only took about 3 months to get my dosage of synthroid on track and I have been steady on every since. I have not made any changes to my diet - have lost some weight, put it back on and lost it again, which isn't anything out of the ordinary for me.
I also have Graves Eye Disease and have had a couple of surgeries on my eyes. Again, I don't regret either one bit.
Anyway, I did a year of methimazole, then chose to have a total thyroidectomy. I have had not one minute of regret about the surgery - lots of problems disappeared with my crazy thyroid. It only took about 3 months to get my dosage of synthroid on track and I have been steady on every since. I have not made any changes to my diet - have lost some weight, put it back on and lost it again, which isn't anything out of the ordinary for me.
I also have Graves Eye Disease and have had a couple of surgeries on my eyes. Again, I don't regret either one bit.
Have an Answer?
You are reading content posted in the Thyroid Disorders Community
We tapped the CDC for information on what you need to know about radiation exposure
Endocrinologist Mark Lupo, MD, answers 10 questions about thyroid disorders and how to treat them
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
