For some reason my second half of my question got cut off.
TSH is

Hi and welcome:

Leave out the more than and less than signs and you will be able to put in your lab results without any problems. :-)

{{{hugs}}}

ok here goes again!
these are the FREE
T3 20.4 (2.2-4.0)
T4 3.3 (0.8-1.5)
TSH 0.007
uptake scan 77%
I have a slightly enlarged thyroid ( I cant tell)

I do not see the Endo until end of July and do labs then. This is about 12 weeks from now. The Dr. says insurance does not cover labs less than 3 months apart. Is that your experience?
I am worried about taking the methimazole and not doing labs to check how I am doing.

Any advice?
thank you

Yes, thirty mg of MMI is the old, outdated average starting dose. The amount of adverse reactions to that 30 mg was high , so they lowered the average starting dose to 20 mg, split into two or three doses per day.

Gold star to the pharmacist.

You doctor is wrong. It is normal to check labs at 4 to 6 weeks. Insurance always pays for it. Why would only yours be different than thousands of other new hyper patients over years and years I have been part of the Graves' community ?

Yes, you are hyper. Yes MMI is the right thing to do. You are not scarey hyper, needing such a high dose IMHO.

How about you put together this question and your labs and get Elaine's opinion .
http://www.elaine-moore.com/QA/tabid/57/forumid/6/scope/threads/Default.aspx

Your showing great promise !

You already understand that this 30 mg is a little high, and you have lab copies and ranges. Excellent ! :)

Thank you Paminremission, so kind of you answering me. I just sent a question to Elaine and am waiting for a response. I wonder what to do if she says take less. Call the Dr. and tell her I dont agree?? How do you treat this situation?

Well, let's wait and see what Elaine says. She is one of the main reasons I am where I am today. She will probably reply tomorrow, what with it being a Friday, she often makes sure posts are cleared up before the weekends. Obviously she could have obligations elsewhere tomorrow, but odds are you'll hear back tomorrow.

Bookmark her site and get accustomed to how the menu bar works,. Lots of articles, that will be helpful. I found my questions changed as I went along, and I used her old site that way. But back then she didn't have so much written, and we had to bug hr all the time.

Now they have more lab tests available, and more accurate ones. The science of Graves' continues to be updated, and doctors do get behind, what with their schedules and the variety of patients they see in a day. So the wise Graves' patient is curious and looks around the internet and can hopefully find reliable information. Your in a good place here, while we have a mix of people and a variety of opinions, the gals have done a pretty good job of sharing interesting studies and such.

It takes awhile to come back down to normal, 6 to 8 weeks is average. Some sooner and some later, so don't worry when you have been taking the medication for a few days or weeks and you wonder why it doesn't seem to be working. It is..you just can't feel it yet.

Are you started on a beta blocker yet ? That's the normal starting point. To me, the beta blocker was a gift from God. Seriously.. it calmed my crazy heart and helped my nerves. Such a relief.
If the dose is right, you'll probably feel something the same. Too high a dose and it causes extreme exhaustion and a mental fog. Not a high enough dose and it doesn't' help.
Our needs for the beta blocker change over time, as the thyroid levels come down, so that dose is reduced, till eventually we are weaned off of it.

Well, it's late and I'm rambling now. Take care and we'll see what Elaine says. Thanks for responding so promptly and writing to her.

Pam

Thank you Pam, I am on a beta blocker, Atenolol. 25mg/day. Its been 3 weeks and I dont think it is working. Heart rate still around 100. I suppose it will work better when I start on the Methimazole. I have not started it yet as I dont know how much I should take! Waiting to hear from Elaine and then I will call the Dr. and also ask for labs at 6 weeks not 12.
thank you for all your help and advice. After I get on the meds then I will do more research on what to eat, vitamins, (my vit D is low) etc. I asked the nurse and she said eat what you want, take multivitamin. I dont think that right either. sigh...

So here I am at almost midnight, and I see no reply from Elaine. Now it occurs to me we are going into Mother's Day weekend. Elaine has two grown daughters and a new grandchild. It's very likely they have had plans. Sorry, that completely slipped my mind.

So in deciding if 20 mg or 30 mg is a better fit for you, the choices are:

1. Take 30 mg , split in to 3 doses per ay, every eight hours, or close to that. Be sure you are able to get new labs when you feel you need them.

If you start with the hives and itching, that is often at about 3 to 3 1/2 weeks. This is NOT an allergy and cause to stop the MMI and proceed directly to RAI. This is caused by the high dose. Lowering the dose can be expected to give relief in a few days.

If your liver enzymes rise, this is because the body can not properly metabolize anything when we are too hyper or too hypo.
Many of us have high liver enzymes at diagnosis due to having been hyper. Be sure they compare to the baseline liver enzyme reading. If the high dose causes a rise in liver enzymes, a lower dose and time is the fix. A small rise is to be expected. If results go over tn times the reference range, then the drugs must be stopped, and either the other ATD taken, or other treatment chosen.

Serious liver problems are extremely rare. Most are in tiny children given adult doses. All case have been on more than 300 mg PTU or 30 mg MMI.

The risk of liver problems :
Quote:
Hepatotoxicity is another major side effect of antithyroid drugs. Estimates regarding the frequency of this condition are imprecise, but it probably ranges from 0.1 percent to 0.2 percent.

The other concern is the rare risk of a lowered white blood count.
Compare to the baseline reading. Same reason.

Quote:
Agranulocytosis is the most feared side effect of antithyroid-drug therapy. In the largest series, agranulocytosis (an absolute granulocyte count of less than 500 per cubic millimeter) occurred in 0.37 percent of patients receiving propylthiouracil and in 0.35 percent receiving methimazole.81 Agranulocytosis must be distinguished from the transient, mild granulocytopenia (a granulocyte count of less than 1500 per cubic millimeter) that occasionally occurs in patients with Graves' disease, in some patients of African descent, and occasionally in patients treated with antithyroid drugs. A baseline differential white-cell count should be obtained before initiation of therapy.

We Graves' patients do not have a risk free option. But many are pushed to RAI with blanket facts concerning the risks of our ATDs, not weighting these very rare , less than half a percent chances, to the unexplained , very real risks involved in RAI or surgery.

The doctors risk in prescribing ATDs is getting non-compliant patients. That's just never going to work.

Our risk is the fact that most doctors do not have experience useing ATDs successfully. You will see that same stories of over doses, hives, itching, liver enzymes, aches, pains, heart palpitations ( hypo caused) , anxiety and panic ( hypo caused), the endless list.... over and over here and all the other long running Graves' groups on-line and in real life support groups.

Doctors that routinely overdose their patients fully expect all their ATD patients to have the same complaints. Because they keep over dosing all of them. Duh. But these doctors don't think it's anything they are doing.

But.. knowing this ahead of time gives you the opportunity to do exactly what you ARE doing. Ask questions, have paper copies of your lab results, and watch your personal story evolve. No reason you need to expect all the troubles so many others show up with.

Here is the paper I used for the % of risks.
http://e-medicum.com/newsletters/medicinaInterna/verNoticia.php?noticia=42755

While it is a bit pro-RAI, I find that understandable from their position having to deal with a large number of patients with mixed educational and socioeconomic backgrounds, some of which will be non-compliant . Non-compliance can kill.

Next post.. the other dose choices,

Reviewing my last reply I see I could have explained this a bit more:

Quote:
If you start with the hives and itching, that is often at about 3 to 3 1/2 weeks. This is NOT an allergy and cause to stop the MMI and proceed directly to RAI. This is caused by the high dose. Lowering the dose can be expected to give relief in a few days.

Explanation: As Graves' patients we FEEL symptoms from three causes. Hyper, hypo and swinging hormone levels.

In the case of the 3 or 3 1/2 week common hives/itching, this is most often caused by the fact that about then, our hormone levels start a huge swing down. A few of us will have been dropped so fast they are hypo by then, but most of us are just stating to use up stored hormone, more to drop, but this is when the move starts strongly enough we feel it.

I happened to be one that did have the hives and insane itching.. the worst itch one can survive without checking into the sanitarium, I tell you. :( Worse that I could have ever imagined. Mine started later, but that's not important. It happened I only felt my body changing from hyper at 6 weeks, and at 8 weeks , almost on the dot, I finally woke up one morning and realized these pills were going to work, the sun appeared in the window that I hadn't noticed in a very long time. My body didn't hurt so bad.

Yet others say they start feeling things at a few days or a few weeks. I find the differences and similarities fascinating, and have always felt a unique bond with all of you fellow patients. Non-Graves' family and friends can try to understand, but only other Graves' patients can really understand.

Okay..back to the other dose choices.
You could start with 20 mg and still change if you decide otherwise. No harm can come from doing that.

You could divide that 20 mg into two or three doses per day. Three does is better IF you can train yourself to remember. I had trouble with my mid-afternoon dose so bought an alarm watch. Some people set an alarm on their cell phone. When the alarm goes off, take the pill right then before you get involved and forget. LOL ( voice of experience)

Both of our ATD tablets can be cut into portions. Pill cutters are sold at all pharmacies, most likely on a card hanging up with other small items. My favorite pill cutter was clear plastic. Replace at least once a year, as they loose sharpness. When cutting, push enough the pill snaps. Grinding down on it causes a lot of dust loss, and less accurate portions.

These portions will not be perfectly even. But.. if you take out one days dose cut into portions, and take all of THAT pile, your days amount will be perfect.

Labs: If you feel a huge shift and know things are really shifting, it's a good idea to get labs then, and not wait it out till an appointment. Avoids much of the roller coaster affect you hear about.
You never need a doctors appointment to get labs. But you do need a doctor to write the lab request. This is normally a phone call. When labs are drawn double check that they have correctly marked the doctors orders to mail a copy to the patient.

Diet.. best start is to learn where the high iodine is, and modify that. I eliminated seafood and seaweed. I lowered my dairy intake, and added lots of goitrogens I happen to love.