General Medicine

» dana65 - Avoiding Iodine

Hi again, Elaine . . . I do not have any trouble avoiding fast or processed foods, but I've also totally avoided dairy and seafood for the past several months. (I never eat cheese, I don't even butter my toast, and I never eat egg yolks -- so I don't even use mayonnaise any more.) I would guess that's why I became very deficient in Vitamin D and was prescribed a two-month weekly mega-dose prescription of Vitamin D. So now I'm wondering if I can soften that rigid diet just a bit without triggering the antibody action again . . .or must I wait until I've been in remission for a couple of years before trying to use milk in my cereal or buttering my toast or having a little cheese on occasion? Thoughts on that?

And once again, what defines "remission?"

Many thanks.
Dana

-- posted by dana65

» Elaine Moore - Avoiding Iodine

In response to Avoiding Iodine posted by dana65:

Hi,
remission occurs when your immune system stops producing TSI antibodies at levels that cause hyperthyroidism. Because these antibodies falsely decrease TSH, you can confirm remission with either a TSI level or a TSH level. A normal TSH in someone on a very low ATD dose would confirm remission.

a recent study published in Science showed that although many people are deficient in vitamin D, vitamin D supplements do not necessarily benefit the immune system. It's recommended that vitamin D be absorbed through sunlight. I recently wrote an article on this that you can find with the autoimmune disease articles.

You want to avoid excess dietary iodine. An occasional dairy product is fine. Best, Elaine

» dana65 - Avoiding Iodine

In response to Avoiding Iodine posted by daisyelaine:

Thanks, Elaine. After I posted that, I found your articles on remission and drug therapy, so I wouldn't have needed to bother you. I'll check out the articles first the next time . . .

Dana

-- posted by dana65

» Elaine Moore - Avoiding Iodine

In response to Avoiding Iodine posted by dana65:

Hi Dana,
No problem. It's always good to hear from Graves' patients who are proactive and doing well. Best, Elaine

» nurseheatherone - Avoiding Iodine

In response to Avoiding Iodine posted by daisyelaine:

Hi Elaine! it is has been a while since I have posted last but of course I have more questions. I just found out that I am about 5 weeks pregnant and I have a question about dairy. I have been pretty much been avoiding dairy because of the iodine content but I am now thinking I should add some back into my diet for extra calcium. I am aware that I can get calcium from other food sources, I am jsut afraid to cut out an entire food group while pregnant. I am supposively still in remission, and am to get my labs rechecked in May which will be 6 months without meds. I am thinking I will have to get them checked sooner than that to see if my body is goign to go hay wire again now that I am pregnant. Also, any recomendations on a good natural Pre natal vitamin with DHA, I seem to having issue with the prescriptions ones and getting a rash on my neck, maybe from the dye?
Thanks Elaine, Heather

-- posted by nurseheatherone

» Elaine Moore - Avoiding Iodine

In response to Avoiding Iodine posted by nurseheatherone:

Hi Heather,
Congratulations on your pregnancy!! I'd definitely add dairy. Just don't over do it. And take whatever prenatal vitamins your doctor recommends as long as they don't have more than 150 mcg iodine. You want a vitamin that has adequate folic acid. I take DHA in an essential oil capseule with GLA, DHA that I get from Life Extension (www.lef.org) Ask your doctor if something like that would be ok. I agree with you that DHA is very important. Even my puppy gets it in her food. See if your doctor has any samples you can try. I used to get rashes from supplements that contained iodine.

During early pregnancy, thyroid levels normally rise. The ranges are 1.5 times higher than usual for T4 and T3 and you can expect TSH to fall as low as .01 mu/L but not less than that. During the second half of pregnancy levels fall because of the increased estrogens using up all the binding proteins. So people on replacement hormone generally need more and people on ATDs need less. You'll probably not need anything but these are normal changes you should be aware of so you don't worry about them. Take care, and again, congratulations!! Elaine

» loriv134 - This is all over-my-head!!

I was diagnosed with Graves Disease back in 2004. My PCP did a routine lab test because of my complaints of fatigue. She called with my thyroid levels being quite low. She sent me for an uptake scan with subsequent results revealing Graves Disease. I found out a week later I was 7 weeks pregnant. Obviously I didn't know this when I had the scan done and doctors were nervous about the effects to the baby. My son was born 9 months later perfectly healthy and continues to be. I was seeing my endo every month during my pregnancy and the GD seem to go into remission. I was a mother with now 3 children after my son was born and didn't take care of myself and follow-up with my endo after the birth of my son. Back in January of 2008 I needed to see my PCP again for my asthma. She was not happy that I haven't followed up with my GD. So I finally decided it was time to take care of this all. After a first visit with an endocrinologist, I knew she was not willing to take the approach I wanted to and decided to look elsewhere. I did read Graves Disease: A practical guide and started to understand my role in the treatment of GD. The endo I'm seeing now is WONDERFUL. She understands my concerns and is willing to work with me. I was put on Methimozole and had a reaction including an extremely itchy rash and cold like symptoms. The doctor did a CBC to check for WBC count and mine was very low and was taken of the medicine. We spoke again to go over options and am now trying PTUs. My levels right before starting the PTU was an undetectable TSH. FT4 was 3.8 and FT3 was 13. These numbers mean nothing to me. I feel like some of these posts are over-my-head. I need to know if I'm doing the right thing with the PTUs. Or, with my last reaction should I just opt for the RI? I'm overwhelmed by this all. Any advise would be appreciated.

-- posted by loriv134

» 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

» 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

» 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