Aa
graves/hashimoto? confused
I was diagnosed hypo thyroid with hashimoto's about 7 years ago and have done fine on synthroid 50 mg since that time. About August of this year I noticed the sudden growth of my thyroid, huge and noticeable goiter where only the month before I had nothing, so I made an emergency appointment to my doctor. She tested my tsh (only, no other thyroid tests) and got a reading of .02 and discontinued my synthroid. I went in for a repeat TSH four weeks later and it was still .02. I went four weeks later and it is .02. My doctors says she suspects Graves AND Hashimotos. How is this even possible? She called today and recommended repeat testing in 6 weeks.
I am uncomfortable with this plan. First off, the huge goiter appeared nearly overnight, and that doesn't sound good. Second, nothing is changing, so what exactly is she waiting to find out? She hasn't answered these questions, just ignores me. Can the goiter shrink? If not, what are my options to get rid of it? I don't like it or want to keep it. Is there a possibility it is more serious? Is doing the TSH only acceptable? I mean, if it not changing, it seems like maybe more information is something to think about, but she doesn't think I need anything by TSH test. Should I just keep on going for another 6 weeks (which is really more like 8 because of the holidays) and not treat this very low number?
I am uncomfortable with this plan. First off, the huge goiter appeared nearly overnight, and that doesn't sound good. Second, nothing is changing, so what exactly is she waiting to find out? She hasn't answered these questions, just ignores me. Can the goiter shrink? If not, what are my options to get rid of it? I don't like it or want to keep it. Is there a possibility it is more serious? Is doing the TSH only acceptable? I mean, if it not changing, it seems like maybe more information is something to think about, but she doesn't think I need anything by TSH test. Should I just keep on going for another 6 weeks (which is really more like 8 because of the holidays) and not treat this very low number?
Yes, you can have both Hashimotos and Graves. This is sometimes referred to as Hashitoxicosis. I've has this condition myself but thankfully only lasted 2 months. My pretibal myxedema (due to the Graves antibodies) took another year to disappear though. Another sign I had of Graves was the Joffroy's sign - "absence of forehead wrinkling when the gaze is suddenly directed upward." That was one of my party tricks. :)
http://www.medhelp.org/posts/Thyroid-Disorders/Diagnosed-with-Hashimotos-AND-Graves-disease/show/944756
http://www.medhelp.org/posts/Thyroid-Disorders/Diagnosed-with-Hashimotos-AND-Graves-disease/show/944756
My goiter appeared over night as well. I had graves/hyper/toxic goiter.
However, I was in full blown thyroid storm by the time I went to Endo.
I ended up getting RAI, then another thyroid storm and by then I was 88 lbs..and HR at 140 sitting down. They quickly did the thyroidectomy.
However, I was in full blown thyroid storm by the time I went to Endo.
I ended up getting RAI, then another thyroid storm and by then I was 88 lbs..and HR at 140 sitting down. They quickly did the thyroidectomy.
how long did you wait from goiter to thyroid storm? I am going on nearly three months at this point. my doctor seems very laid back.
I'd just like to add that TSH is NEVER sufficient by itself to manage thyroid disease. A bare minimum of testing is FT3, FT4 and TSH EVERY time labbs are drawn.
Has your doctor tested for the antibodies that are markers for Graves' and Hashi's? Graves' is characterized by elevated TSI (thyroid stimulating immunoglobulin) and Hashi's by elevated TPOab (thyroid peroxidase antibody) and/or TGab (thyroglobulin antibody). Your doctor shouldn't have to "suspect"; these simple antibody tests (blood tests) will confirm or eliminate those diagnoses.
It does sound like a contradiction in terms that you can have both Graves' and Hashi's, but although rare, it is possible. You can have the antibodies for both Graves' and Hashi's. You are treated depending on which condition dominates at the time.
Has your doctor tested for the antibodies that are markers for Graves' and Hashi's? Graves' is characterized by elevated TSI (thyroid stimulating immunoglobulin) and Hashi's by elevated TPOab (thyroid peroxidase antibody) and/or TGab (thyroglobulin antibody). Your doctor shouldn't have to "suspect"; these simple antibody tests (blood tests) will confirm or eliminate those diagnoses.
It does sound like a contradiction in terms that you can have both Graves' and Hashi's, but although rare, it is possible. You can have the antibodies for both Graves' and Hashi's. You are treated depending on which condition dominates at the time.
I have tested positive for Hashi several years ago. My doctor did the TPOab two month ago and tested positive for Graves. This is the only time she has ever done anything different from TSH. The two followups to that TPO were TSH and that's it. Now she wants me to repeat it yet again, no other thyroid testing of any type and no discussion about the sudden appearance of the goiter.
So, in addition to TPOab, she tested TSI (thyroid stimulating immunoglobulin) as well? Do you have the results of that?
Your doctor simply is not testing adequately. TSH is, at best, a screening test for asymptomatic individuals. It cannot be used alone to determine thyroid status once you are diagnosed with thyroid disease.
I think you need a new doctor. Between not testing properly and her "wait and see" attitude, this doctor appears not a very good thyroid doctor. I agree with you that waiting 6-8 weeks to do nothing but test TSH again is unacceptable (at least without an explanation of what she expects to happen in 6-8 weeks). Due to the sudden appearance of the goiter, ultrasound (or some form of imaging) would also be in order. I'd find someone else soon. This doctor sounds like a waste of time.
Your doctor simply is not testing adequately. TSH is, at best, a screening test for asymptomatic individuals. It cannot be used alone to determine thyroid status once you are diagnosed with thyroid disease.
I think you need a new doctor. Between not testing properly and her "wait and see" attitude, this doctor appears not a very good thyroid doctor. I agree with you that waiting 6-8 weeks to do nothing but test TSH again is unacceptable (at least without an explanation of what she expects to happen in 6-8 weeks). Due to the sudden appearance of the goiter, ultrasound (or some form of imaging) would also be in order. I'd find someone else soon. This doctor sounds like a waste of time.
I am going to go back and pull my test results, but you really confirmed what I was thinking anyway. With a retest, she gave no explanation as to what to expect or what would indicate making a change, and no testing done beyond the TSH. Time to hunt for a new doc. Thanks.
These are my most recent results. When I see that my thyroid was so low over a year ago, I question why I continued treating as hypothyroid.
7/12 TSH .02 continue Synthroid 50mcg
7/13 TPOab 900 confirmation of Hashimoto
7/13 TSI 4.6 you may well have both disorders
7/13 TSH .02 retest in 4-6 week discontinue synthroid
7/13 ultrasound - thyroid unchanged
Goiter was huge and discoved in August, so I notified her, and she just said to continue with retest.
9/13 TSH .02 retest in 4-6 weeks
11/13 TSH 02 retest in 4-6 weeks
7/12 TSH .02 continue Synthroid 50mcg
7/13 TPOab 900 confirmation of Hashimoto
7/13 TSI 4.6 you may well have both disorders
7/13 TSH .02 retest in 4-6 week discontinue synthroid
7/13 ultrasound - thyroid unchanged
Goiter was huge and discoved in August, so I notified her, and she just said to continue with retest.
9/13 TSH .02 retest in 4-6 weeks
11/13 TSH 02 retest in 4-6 weeks
The 7/13 extra testing was done only because I insisted something else be tested, or it would have only been TSH.
and I am in beginning stages of TED as per my last appointment but she says there is no way of treating that. :(
Is that a TSI or a TSH? 0.3-3.0 is a typical TSH range. The range on a TSI should be something like "less-than 130%" or "less-than 1.3".
TED is not nice. I'm so happy to get rid of that guy. Light sensitivity was my worst symptom. Painful. I believe my severe stress at the time caused my TSI (TRAb) antibodies to show up. I'm in a right bit of stress right now and getting hyper flare ups every day. Not good. Calm lotus position ommmmm. :)
Selenium can also help. In 2011, a study demonstrated that selenium supplementation (200 mcg per day) can slow the progression of eye disease and improve quality of life in patients with Graves' disease with mild ocular involvement (Graves' ophthalmopathy). Dietary wise, brazil nuts have the highest selenium content. Each brazil nut contains anywhere from between 50 - 90mcg of selenium depending on the soil.
Selenium can also help. In 2011, a study demonstrated that selenium supplementation (200 mcg per day) can slow the progression of eye disease and improve quality of life in patients with Graves' disease with mild ocular involvement (Graves' ophthalmopathy). Dietary wise, brazil nuts have the highest selenium content. Each brazil nut contains anywhere from between 50 - 90mcg of selenium depending on the soil.
That's a pretty strong positive TSI, then.
I agree with you...time to find a new doctor, one who tests properly and is willing to treat. Don't wait 6-8 weeks just for another TSH.
Let me explain a little about TSI antibodies. (If I'm repeating what you already know, please forgive the redundancy.) Normally, TSH from your pituitary, which is the master endocrine gland, is sent out when the pituitary senses thyroid hormone levels are too low. If levels are just right or too high, no TSH is sent out. TSH cannot go below zero.
When TSI antibodies are high (i.e. you have Graves' disease), the TSI can attach to TSH receptors in the thyroid and cause it to produce or overproduce hormone. TSI antibodies are not under the control of the pituitary, but just indiscriminately stimulate the thyroid.
Since TSI are stimulating the thyroid, the pituitary is sensing that hormone levels are too high, so TSH becomes suppressed...your pituitary is, in effect, trying to put on the breaks.
Once TSH is suppressed, it no longer gives any useful information. All we know from your TSH is that hormone levels are too high. They might just be a little too high, or they could be through the roof. So, your current doctor is basically flying blind.
Be sure your new doctor will order FT3 and FT4 along with TSH.
I agree with you...time to find a new doctor, one who tests properly and is willing to treat. Don't wait 6-8 weeks just for another TSH.
Let me explain a little about TSI antibodies. (If I'm repeating what you already know, please forgive the redundancy.) Normally, TSH from your pituitary, which is the master endocrine gland, is sent out when the pituitary senses thyroid hormone levels are too low. If levels are just right or too high, no TSH is sent out. TSH cannot go below zero.
When TSI antibodies are high (i.e. you have Graves' disease), the TSI can attach to TSH receptors in the thyroid and cause it to produce or overproduce hormone. TSI antibodies are not under the control of the pituitary, but just indiscriminately stimulate the thyroid.
Since TSI are stimulating the thyroid, the pituitary is sensing that hormone levels are too high, so TSH becomes suppressed...your pituitary is, in effect, trying to put on the breaks.
Once TSH is suppressed, it no longer gives any useful information. All we know from your TSH is that hormone levels are too high. They might just be a little too high, or they could be through the roof. So, your current doctor is basically flying blind.
Be sure your new doctor will order FT3 and FT4 along with TSH.
I honestly could not tell you. I was young and a new mom at the time. I thought I was just working to much and with an 8 month old I never bothered to see when they symptoms actually came about.
Only reason I was going to the doctor was due to headaches. The doctor at the time treated me for depression due to be a new mommy and working full time. I had been going to the doctor for like 3-4 months prior to my neck swelling. I had a very uneducated dr. at the time ...
I only found out about the thyroid by chance. My necked swelled one evening and well being 88 lbs it was noticeable to my dad. I went in after hours and it took the on call doctor 30 seconds to tell me it was my thyroid. All I had to do was stick my hands out for him and he knew right away. (My hands were trembling so bad I never even noticed...
If I had to guess, it was probably more like 6 months of being untreated, but only because I was not aware of the changes in me.
Only reason I was going to the doctor was due to headaches. The doctor at the time treated me for depression due to be a new mommy and working full time. I had been going to the doctor for like 3-4 months prior to my neck swelling. I had a very uneducated dr. at the time ...
I only found out about the thyroid by chance. My necked swelled one evening and well being 88 lbs it was noticeable to my dad. I went in after hours and it took the on call doctor 30 seconds to tell me it was my thyroid. All I had to do was stick my hands out for him and he knew right away. (My hands were trembling so bad I never even noticed...
If I had to guess, it was probably more like 6 months of being untreated, but only because I was not aware of the changes in me.
I have an appointment in April with a new doctor. I have not taken any thyroid replacement since September. My former doctor asked me to stop to aid in testing. I am suffering from daily headaches. I forwarded my new doctor all of my labs and I am just waiting. :(
Also, I have been reading about b12 injections, can the endo do them? will they? is it worth asking when I meet my new doctor?
Most people who inject B-12 do it themselves at home. I imagine it would depend on the endo and whether he keeps B-12 on hand or not.
Are you deficient in B-12?
Are you deficient in B-12?
You should really have it tested before you try supplementing it. Pernicious anemia is the inability to absorb B-12 through the gut. People who have PA have to inject B-12 for that reason. If you're simply deficient, oral supplements should work just fine. If you do have it tested, keep in mind that you want to be well up into the range for B-12. Anything under 500 is a distinctly questionable result.
Update----
I got a new doctor, who is at least better at explaining things than the old dr.
no nodules, just enlarged more on the right than left
He says the results are tsh .02, free t4 ok, free t3 ok and this means
subclinical hypothyroidism. No nodules, but I do have a very enlarged thyroid, damaged and scarred by years of thyroid problems.
While it may be Graves, I am not suffering from weight loss (I wish) or hear arrhythmias, so there is no urgency, however, if left long term this could cause health problems, and I am already exhibiting TED, so he suggests radioactive iodide. He makes this sound like a very casual treatment with no down time or side effects. True?
He does not suggest medications because I'm not having a ton of really bad symptoms (you know, aside from the crippling headaches and TED) and medication can't really help me.
I don't think I like the radioactive iodide treatment, but I know I need to do something, thoughts?
I got a new doctor, who is at least better at explaining things than the old dr.
no nodules, just enlarged more on the right than left
He says the results are tsh .02, free t4 ok, free t3 ok and this means
subclinical hypothyroidism. No nodules, but I do have a very enlarged thyroid, damaged and scarred by years of thyroid problems.
While it may be Graves, I am not suffering from weight loss (I wish) or hear arrhythmias, so there is no urgency, however, if left long term this could cause health problems, and I am already exhibiting TED, so he suggests radioactive iodide. He makes this sound like a very casual treatment with no down time or side effects. True?
He does not suggest medications because I'm not having a ton of really bad symptoms (you know, aside from the crippling headaches and TED) and medication can't really help me.
I don't think I like the radioactive iodide treatment, but I know I need to do something, thoughts?
Do you have the exact results and reference ranges for your FT3 and FT4?
Subclinical hypo or hyper? I think you meant to say hyper.
I don't think you can call RAI "casual". There is some down time to the treatment as you can't be around small children, pregnant women or small pets for a while after the treatment. You basically have to be isolated until the radiation wears off.
After RAI, you will be hypothyroid, which presents its own problems. You will be hypo for life.
Medication can help you. Most people seek a solution in medication first. If your hyper can't be controlled with meds, then it's time to consider a more permanent solution, like RAI or surgery. However, meds can help you and give you time to research and learn all you can about the disease.
I'm afraid to say that I think you might need yet another opinion.
Subclinical hypo or hyper? I think you meant to say hyper.
I don't think you can call RAI "casual". There is some down time to the treatment as you can't be around small children, pregnant women or small pets for a while after the treatment. You basically have to be isolated until the radiation wears off.
After RAI, you will be hypothyroid, which presents its own problems. You will be hypo for life.
Medication can help you. Most people seek a solution in medication first. If your hyper can't be controlled with meds, then it's time to consider a more permanent solution, like RAI or surgery. However, meds can help you and give you time to research and learn all you can about the disease.
I'm afraid to say that I think you might need yet another opinion.
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