[mant9]

#1018644

Hi,

I am new to the group, but am looking for some advice/support.

I was diagnosed with Graves in late December 09 (Merry x-mas) after atrial fibrillation landed me in the hospital. I am 31 yr. old male with no history of heart problems or auto-immune issues and have always been in very good health.

I was treated with RAI on 1/28/10. Labs done prior to the test indicated free t3 of 12.6, total t3 of 335, free t4 of 2.9, and tsh <0.01.

My first labs were completed on 2/11/10 (2 wks. post RAI) and resulted in free t3 of 5.8, total t3 of 183, free t4 of 2.0 and tsh <0.01. My endo and I thought that we were well on our way to having things nipped in the bud, but…….

Today I got my lab results back which were completed on 3/8/10 (5.5 wks. post RAI). Results were nearly the same as the pre-RAI results with free t3 at 11.0, total t3 of 268, free t4 of 3.8, and tsh <0.01.

Unfortunately, I am still experiencing afib and am on the typical lineup of medicines to treat it. This is a serious issue as I am now approaching 90 days in afib and have not reverted to regular rhtyhm as of yet.

My endo wants to test again in one month (would be 10 wks post RAI) and move to surgery if the results do not show marked improvement. My cardiologist recommends lining up the doctors now, testing again in two weeks, and removing the thyroid surgically by the end of the month if the labs haven’t moved.

Help….? Based upon your experiences, is it possible that ablation will have been a success based upon where my numbers are (higher than at 2 wks post ablation)?

Also, does anyone care to share their experience with respect to having afib?

Thanks so much!

[Bobbi]

#1066190

Hi, Mant9, and welcome to our board.

All of us here are patients, and your issues are serious medical ones. We don’t have the education or the experience to give you your best advice. And, it sounds like you are between the proverbial rock and hard place due to the afib issues. So take anything we say here with a healthy dose of skepticism.

Is it possible that the RAI actually "worked" and destroyed enough thyroid tissue that you would be hypothyroid at the end of things (or at least euthroid–normal levels)? We have seen reports from patients who took several months before their RAI demonstrably worked, but that is not the norm. After five or six weeks, though, there are often patients who still are hyperthyroid after RAI, if less so than they were before. We have also seen people who waited months, only to have to do RAI a second time, because they were not given enough, or enough did not get into the thyroid, the first time around. There’s no way for someone like us here to tell.

You have not mentioned antithyroid drugs like PTU and methimazole. Sometimes endocrinologists prescribe them after RAI to help the patient stay "euthroid" (normal thyroid levels) until the RAI has been shown to work. These drugs act as a chemical barrier to the production of thyroid hormone. Not all endos do this (or at least they don’t with every patient), but if the issue of taking this type of drug has not been discussed, it might not hurt to ask your endo about it. If lowering your thyroid levels to normal quickly would alleviate those afib issues, one of these drugs might be able to help. Perhaps, though, you were already on them and they proved ineffective for whatever reason?

It cannot hurt to take the time to line up a thyroid surgeon with whom you feel comfortable. If your current two doctors do not have recommendations, the thyroid cancer help group (ThyCa) has a website list of thyroid surgeons — or at least they used to — to help folks find a qualified surgeon near them. You want someone who does frequent thyroidectomies (not every surgeon does) with a low incidence of adverse side effects (damage to parathyroids or vocal chords, etc.) An experienced thyroid surgeon can give you another insight into the issues .

I do wish you the best of good luck.

[snelsen]

#1066191

Good morning. Mant9. I think you will really appreciate this discussion board. I suggest making a list of things you need to clearly know and understand, that are on Bobbi’s post, plus the questions below. I am a patient with TED and Graves, also an RN who worked in a hospital for many years. But I a just another patient, making some comments that may be helpful. But my comments below are really addressing and suggesting some questions for you to ask. You sound like you are someone who will pursue the information you need to get the right decision for you.

Here some questions to ask the cardiologist. And I am wondering if you had ever been to a cardiologist before December.
1. Ask about the difference between tachycardia (rapid pulse, which is associated with hyperthyroidism in a small number of people..) Ask if you have (chronic) afib or tachycardia
There is a difference, but it is best that you talk to your docs, and/or, you can look up the definitions of both.
2. Then ask about afib. Ask if it is a competely different cardiac problem than the fast pulse. However, it is true that the incidence of afib is a bit higher in hyperthyoidism. Ask the cardiologist if you have "chronic afib."
From your post, I think that the cardiologist wants to do an ablation?
I am suggesting that you talk to the cardiologist, maybe taking someone with you to take notes. Same with the endo.
3. Ask if the two will confer with each other about your situation. Or maybe the already have?
4. Begin now to sign all the release of information forms that are required for you to get copies of all the dictated notes from both docs.
What is your pulse rate? Is it 140-160 now? That is very fast to have all the time. Has the cardiologist ever cardioverted you for a rate this fast? Is if fast all the time or does it come and go? Might be a good time to check it throughout the day.
shirley
I

[mant9]

#1066192

Hello again,

I am in documented afib. Caridologist believes this will revert (or will possibly need to cardiovert) after I am euthyroid or hypothyroid.

Endo has bumped my dose to 90 mg of methimazole from 60.

Thanks for your advice,

CM

[Kimberly]

#1066193

Hi Mant9 – I don’t have an answer for you, but just a couple of comments…

1. I don’t know if you received hard copies of your labs, but it’s a good idea to ask for them and to get yourself familiar with the "normal" ranges. The "normal" range is fairly wide — so noting how you feel and what symptoms you have at various points will help you determine what YOUR "normal" is.

2. I don’t know when you decided to test again (2 weeks vs. 4 weeks) — but if it’s farther out, I would pay close attention to your symptoms and ask for labs to be done sooner if you sense a shift towards hypO. The only way to confirm hypO is with a blood test, but common symptoms include fatigue, slow pulse, constipation, dry skin, and cold intolerance. Some patients respond FAST to a significant change in Anti-Thyroid Drug (ATD) dosage. Also, make sure that your doctor’s office has discussed potential side effects of the meds with you. Potential liver damage and a significant reduction in white blood cell count are rare — but serious — side effects of the ATDs. Your doctor’s office can tell you what symptoms to watch out for…be sure and contact the office ASAP if you experience any of these (such as a major sore throat with fever).

Best of luck!

[Author]

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