General Medicine

© Anthony Lee

Graves Disease

  1. Elaine Moore
  2. Sheperdoodle
  3. Elaine Moore
  4. wendyc20
  5. Sheperdoodle
  6. princesssoft
  7. nurseheatherone
  8. fivebreaths
  9. Elaine Moore
  10. Elaine Moore

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882.   Mar 28, 2008 3:49 PM

» Feature Writer Elaine Moore - This is all over-my-head!!

In response to This is all over-my-head!! posted by loriv134:


Hi Lori,

Most people who react to one anti-thyroid drug (ATD) do fine on the other one unless the dose is too high. You should do fine on PTU.

A low TSH means that your pituitary gland recognizes that your thyroid hormone levels are too high. The pituitary then stops secreting TSH to help your thyroid hormone levels from rising higher.
The usual reference range for FT4 is 0.8-1.8 and the usual range for FT3 is 2.3-4.2. Your levels are moderately elevated.

The usual approach is to take 150-300 mg PTU daily until FT4 falls into the reference range. At that time the PTU dose is lowered. FT3 will take longer to fall and TSH will take quite some time to rise. Over time the PTU dose is reduced as you move toward remission.

Watching your diet (avoiding excess dietary iodine, aspartame, processed foods, etc) and incorporating stress reduction techniques can help with the healing process. Also, avoid any known or suspected allergens to help both asthma and Graves' disease. Since so many people with GD have gluten sensitivity, avoiding wheat can help.

I wouldn't recommend opting for the RAI. Best, Elaine

Suite101
Feature Writer Elaine Moore
Feature Writer for Spas


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883.   Mar 28, 2008 4:30 PM

» Sheperdoodle - Tapazole & dizziness


Hi Elaine,
I have Graves Disease and multi nodule goiter. I am gluten free and am extremely sensitive to medicine. After being on a low dose of PTU (6.25 mg divided 2x day) for 2 years, I had a reaction and went off of it for 2 months, starting in Dec. That month off meds was not fun...anxiety, fast heart rate, wicked hot flashes & trembling. Aug - Dec 07 my labs in normal range. Jan. 08 I started on 1.25 mg of Tapazole & within one week, all the symptoms of hyperthyroidism were lessened. My endo requested that I try to double my dose, my labs were getting worse. This worked for a week and a half - then I became extremely dizzy and my eye problems seem to be worse. I have gone down to 1.25 divided am and pm dose - dizziness better, but symptoms worse. I am scared and feeling like surgery is the next step...I refuse RAI. Any suggestions would be greatly appreciated...

-- posted by Sheperdoodle


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884.   Mar 31, 2008 7:50 AM

» Feature Writer Elaine Moore - Tapazole & dizziness

In response to Tapazole & dizziness posted by Sheperdoodle:


Hi SheperD,
Can you ask for a copy of your last set of lab results along with the normal ranges.
It's not unusual to experience some transient hyper symptoms after cutting your dose. Yours probably weren't transient since you needed to go back on meds in Jan after stopping meds in December.
If you were getting by on a tiny dose of PTU, I suspect the dizziness could be from your dose being too high. This would also cause eye symptoms.

It could be that your TSH is falling too low and to find a dose that keeps TSH in range, the dose causes your thyroid hormone levels to fall too low. Meds should be adjusted based only on the FT4 level since the TSH level stays low until you achieve remission. A low TSH while you're on meds doesn't mean that you're still hyperthyroid.
Let me see what your labs look like and I'll be able to help you more, but it sounds like you probably only need a dose of 1.5 mg daily. Best, Elaine

Suite101
Feature Writer Elaine Moore
Feature Writer for Spas


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885.   Mar 31, 2008 9:37 AM

» wendyc20 - RAI treatment next week yet ...


I am about to have my RAI treatment next week, and yet I just realize I dont know much about the consequence of the treatment.

I was diagnosised in 2004 when I was 16, and during the past four years my thyroid condition had been on and off like on a rollar coaster ride! (I was "almost" off the Tapazole twice but each time the thyroid just ... I dunno how to call it, comes right back again?). I am going through a lot of emotions right now, because on one hand I need to deal with the midterms that's coming up, and on the other hand I need to be worrying about my RAI treatment next week and I can not talk to anyone in the university about it! My doctor suggests me not to mention to people in university about the treatment because since I live in the dorm, this might create unnecessary panic. I am only 20 right now and I am just all confuse up.

Others (like my parents) had urged me to wait a little bit longer to let Tapazole showed its impact, that in hope one day I can just be off the medicione without going through any treatment or surgery. But I do not want to wait any longer. I am young and I really want to enjoy my life to the fulliest. I do understand that after the RAI I would need to be on the synthetic thyroid medicine for the REST OF MY LIFE, but I guess anything looks better than Grave's to me now. My question is, I had been trying to do some research online, and yet they all gave me different answers! Some suggests that I might have a period up to around ten years after the RAI that I can be on NO medicine. But ten years later I would have to take synthetic thyroid until I meet my end. Is this information true? Where can I find more on this? Also, am I really too young and too inexperience to make such a big decision like RAI for myself now? My parents are really against it but they said they would repect any choice I made after my 20th birthday (which is last month).

I am really confuse now. "eyesee" Linda redirects me from her blog to here and suggests me to talk to Elaine Moore. so here I am ^^

-- posted by wendyc20


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886.   Mar 31, 2008 5:06 PM

» Sheperdoodle - Tapazole & dizziness

In response to Tapazole & dizziness posted by daisyelaine:


Thank you Elaine for the reply. My labs in Jan. were TSH 0.207 (0.350 - 5.5) & FT4 1.20 (0.61 - 1.76). March labs were TSH 0.268 (0.350 - 5.5) & FT4 1.46 (0.61 - 1.76). I do not know why the endo wanted me to up my dose - as the labs were in normal range. I still having trouble with dizziness even after going down to 1.25 mg of Tapazole split in two - taking .625 am & pm. I have found that if I go down to a smaller dose within a few days I am having the classical hyper symptoms again. In advance I thank you for your wisdom and thank you for any suggestions and or encouragement.

-- posted by Sheperdoodle


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887.   Apr 1, 2008 1:30 PM

» princesssoft - Graves' Disease and Side Effects


Hi there
I'm a 22 year old female living in the UK, I was diagnosed with thyrotoxicosis in December 2007 and there was a 4 month waiting list to see the thyroid specialist. After seeing the specialist I was diagnosed with Graves' Disease.
From December-March I was treated with Carbimazole (by my GP), my thyroid level was 58 (I think it should be 24?) to start with and I was started on 15mg of Carbimazole and 160mg Inderal LA. After 1 month my GP upped the Carbimazole doze to 20mg and within 1 week of that I had really unbearable joint pain. He halved the doze to 10mg because my thyroid level was now 24, then the next week halved it to 5mg because the joint pain was still really bad. Within 2 weeks of this my thyroid level was back up to 36 and he increased the Carbimazole to 10mg again.
In the middle of March this year, I finally saw the thyroid specialist who diagnosed me with Graves' and upped the Carbimazole to 20mg again and has said I should stay at this doze for 6 weeks.
Now I'm having really bad problems, the joint pain isn't so bad this time, but I've started getting headaches every day, I got them when I was taking 10mg but now I'm on 20mg they're almost unbearable. I really don't know if I'm best to try to stick them out, alter the Carbimazole doze myself or see my GP?
I'm also finding that I'm cold all the time, feeling a bit emotional, really really tired and I don't know if this because I'm stressed about the side effects, or if these symptoms are coming from the thyroid.
If anyone has any advice or has a story similar to mine to tell I'd be really grateful for some input - the world can seem like a lonely place when you have Graves'!
A

-- posted by princesssoft


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888.   Apr 4, 2008 6:45 AM

» nurseheatherone - Avoiding Iodine

In response to Avoiding Iodine posted by daisyelaine:
Hi Elaine,
I just got my first thyroid panel since I have been pregnant and wanted to run the numbers by you. My TSH is 1,FT4 1.12,FT3 303 this is at about 5-6 weeks from my LMP, just wanted to see if these are pretty normal.
Thanks again, Heather

-- posted by nurseheatherone


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889.   Apr 4, 2008 12:21 PM

» fivebreaths - re: low TSH


hi Elaine,

I haven't posted in a long while. I tried going back through the postings to find the answer to my question, as I know you've answered this before, but I couldn't find one.
I was dx'd w/ Graves a year and a half ago. I've been on a low dosage of methimazole for mostly a year now. My last labwork last week shows my T-4 and T-3 are in the normal range, but the TSH is low. My doctor tells me the low TSH is an indictor that I am still hyperthyroid, and she wants me to continue taking the methimazole(5mgs). I have already gained 25 lbs( i'm one of the freaks that gained weight w/ a hyper-thyroid), have hair which has thinned by half (thank God it was thick to begin with), etc and I'm not even hypothryroid yet.
Can you share with me, what exactly it means to show normal levels of the thyroid hormones, but to still have a low TSH, and would my dx still be Graves ? Am I out of the woods, I wonder??and also--why I should stay on the meth? is that important?
Lastly, do all Graves patients have a thyroid that is just inevitably burning itself out, and inevitably becoming hypothyroid?
thank you. I look forward ot your reply. And thank you for all your help .

-- posted by fivebreaths


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890.   Apr 5, 2008 11:46 AM

» Feature Writer Elaine Moore - RAI treatment next week yet ...

In response to RAI treatment next week yet ... posted by wendyc20:


Hi Wendy,
I had trouble accessing the discussion board and hope I'm not too late to help you with your decision. I agree with your parents that you should wait. Graves' disease is a self-limiting disorder and most everyone can achieve remission using anti-thyroid drugs (ATDs) like Tapazole. Unfortunately, not all doctors know how to use it.

Most importantly, meds can't be used for a certain timeframe, for instance a year or two, because we're all different. If we're exposed to certain environmental triggers (such as stress, high levels of dietary iodine in fast and processed food, cigarette smoke, aspartame, etc) remission takes longer. Studies also show that long-term (average 4 years) use of a low dose ATD is associated with the highest rate of permanent remission.

And while ATDs will lower your thyroid hormone levels, low levels don't mean that you're in remission. The idea is to reduce the dose of meds over time until you're using a very low dose, like 1.25 mg daily. If your TSH level is normal after 6-8 weeks on this dose or if your TSI antibody level is low, then remission is suspected. Even then, you'd wean off meds slowly so as not to stimulate your immune system.

Radioiodine is a potent toxin and the effects of RAI are long-lasting, with thyroid function continuing to decline for more than 10 years. Also, because it's a toxin radioiodine stimulates your immune system to produce more thyroid antibodies. This increases your risk of thyroid eye disease, pretibial myxedema, and other autoimmune diseases. Best to you, Elaine

Suite101
Feature Writer Elaine Moore
Feature Writer for Spas


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891.   Apr 5, 2008 11:52 AM

» Feature Writer Elaine Moore - Tapazole & dizziness

In response to Tapazole & dizziness posted by Sheperdoodle:


Hi,
I should have mentioned before that it's normal and expected to have transient hyperthyroid symptoms whenever you increase your dose of replacement hormone or decrease your ATD dose. This doesn't mean that you're hyperthyroid. When levels have been too low for your body's needs, your cells stockpile thyroid hormone to help prevent future deficiencies. This causes the temporary symptoms. They generally resolve within a week unless you truly are hyperthyroid.

For example, when I first started Armour I was on a very low dose (1/4 of what I'm on now and very hypothyroid). But for a week I had palpitations and hot flashes within an hour of my dose. These naturally resolved and over time I increased my dose. Had I not been warned that this could happen I would have thought I was hyperthyroid.

This is one of the reasons changes in ATDs and doses of replacement hormone should always be made slowly. Thyroid hormone is very potent, and even tiny changes can make big differences. Your levels look fine and a 1.46 FT4 isn't too high. It's about where you want to be. And as you know, TSH is often misleading since it's falsely decreased in Graves' disease. Best, Elaine

Suite101
Feature Writer Elaine Moore
Feature Writer for Spas


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