Surgery it is...

I have had an increase in symptoms lately and have come to the conclusion that I am playing with fire.

The Endocrinologist said she is not OK with me waiting until September (risk of congestive heart failure and worsening symptoms of hyperthyroid making surgery and RAI more complicated)

I really went back and forth between RAI (radioactive iodine) and Surgery..but it seems that longer-term surgery is the best bet (even though my doc thinks I am a good candidate for RAI)

The surgery is scheduled for July 9th... I will enjoy 4th of July weekend and then off I go to Mount Sinai....It is a 2-3 hour surgery and 24 hours in the hospital afterwards (to absorb calcium levels from parathyroids which can be affected during surgery)

Wish me luck...

As for what happens after - I will immediately go on Synthroid and stay on that for the rest of my life.  If I don't take it, I will be hypothyroid which has another set of issues that goes along with it.

I want to explore the homeopathic route as well - this disease is an auto-immune disease and my thyroid just happens to be the target (not the real issue), so I want to work at healing my body so it doesn't do these crazy things again... I am still staying gluten-free (because it actually makes me feel better) and seeing what homeopathic Dr's suggest to make me feel better..

I will keep you all posted...

Back to square 1

My "good news" was short lived..

The reason I had a "good" blood test was because I was taking iodine (to prepare for surgery)...  Apparently it lowers the levels temporarily, but doesn't work long-term.

I took a blood test this past Friday (two weeks after my "good" blood test) and my levels are even worse than they were in April and my liver enzymes are back up...My Endo is uncomfortable with me waiting until September..

To be honest, I do feel a little different.  More jumpy...More anxious...More "out of it"..

I am also reconsidering surgery vs. radioactive iodine.  The endo is really positive about radioactive iodine.  She said they do a study to see how your thyroid metabolizes and then they base the dose on that...  She said it is very little - not the same as totally removing your thyroid.

The plus side is there is a small chance (20%) I don't go hypothyroid and it is less intrusive...

Right now I am actually leaning towards RAI.

I feel like I am really flip-flopping on this decision..but it is a pretty serious one...

Surgery Cancelled...now what?

I went to the endocrinologist today and we talked thru all the options.  She said she is OK with giving a low dose of the methimazole (which I may or may not be allergic to - or it may have been too high a dose).  I will be taking 10mg a day, whereas before I was taking 40mg a day.    She also wants me to take a zyrtec with it..

I cancelled my surgery for Tuesday, I will start taking the medicine today, and in two weeks I go back to the doc to see how my liver is doing.  If it is bad or has gotten worse in anyway, then I go off the meds and schedule a surgery (she said I could wait until September as long as I stay on propanalol.

The next two weeks are full on health mode, hopefully some acupuncture (some say it works), and the new meds.

I feel really good about this decision.  Keep your fingers crossed that all goes well in the next two weeks..

Getting Cold Feet

I am supposed to have surgery next Tuesday, and today I got a serious case of cold feet.

Normally, I am a decisive person, but I just feel that there are too many unanswered questions.  I just worry that I am playing with fire by getting those answers.

The main questions buzzing around in my head are

• What if I can get better?  I feel fine now - no more symptoms
• What if this is all pregnancy related? and the further I get from that, the better I will be"
• Maybe I wasn't allergic to the meds, maybe it was just too high a dose (has been that way in the past)

But then, as if to torture my contemplating mind I get the flip side:

• Do I really want to be on that potent medication for a long time?
• Do I really want to have surgery for this? Radioactive iodine is just a pill...
• What if I do nothing and just stay on the beta-blocker?
• Surgery seems so easy, except for the actual surgery part :)

Anyway - all of this came rushing into my mind today.  I have been trying to ignore it for weeks and now I am at a loss for what to do.

Luckily, my endocrinologist is awesome.  She called me back immediately today and talked to me for a while, and squeezed me in for an appt tomorrow.  She will go with any one of my plans (lower dose, radioactive iodine, surgery), but she is candid with how she feels.

1. Lower Dose Methimazole:  Worried about permanent liver damage (even just taking it for 2 weeks) - 30% that I can get into remission and not take it long-term.  Long-term it can also affect my white blood cells.
2. Radioactive Iodine:  This is what she suggests, thinks it is best for my situation
3. Surgery:   More than I really need to do because (2) will solve that.

I don't know what to think of my gut now - any time I make a decision, I keep arguing with myself.  I really hope I can come to a zen place with whatever decision I make....

Decisions, Decisions..

Well, I have a decision that I have to make in the next few weeks regarding my thyroid.

I went to a doctor two weeks ago that I really liked (Dr. Elise Brett).  My dad went with me too, which was a big relief - anxiety has been getting the best of me. The doctor came from recommendation from a friend and I am glad that she gave me her name.  She is extremely knowledgable and very definitive.  Basically, she said medication is no longer an option for me - my liver was affected by the first one, and PTU (my second choice) is even harder on the liver (and many doctors are not using that medication any longer).  So, my decision is (relatively) simple, either:

1. Take radioactive iodine, be away from the kids for 3 days, and let that do the work of killing off my thyroid for the next 2-6 months.  Once all that is done, I will go on a synthetic thryoid hormone for the rest of my life...
• Pros: No surgery
• Cons: I am putting radioactivity into my body, it will take time to kill off the thyroid (another 2-6 months of symptoms), the antibodies can still attack my eyes, being away from the kids for 3 days
2. Get a thyroidectomy, with low risk to my parathyroids (4 of them - they help you absorb calcium) and vocal cords. All of which (if there is damage) are temporary.
• Pros:  graves antibodies are GONE - they won't attack my eyes, give me joint pain, etc, it is final and I will immediately go on synthetic thyroid medication, removes chance of thyroid cancer
• Cons: Surgery, risk to really important things (like my voice)

I thought a lot about this and I am really leaning towards surgery.  I don't like the idea of having anything radioactive in my body - and being away from my kids for 3 days.  I will probably sit an think about how it is slowly killing off my thyroid and just be miserable.  I like finality - and, for me, I think the best decision is a thyroidectomy.   

I went to one of the best hospitals for thyroidectomy (Mount Sinai) and saw a great surgeon.  I really think she solidified my decision - thyroidectomy it is...

Once I get the surgery I will surely be on synthetic thyroid hormones for the rest of my life.  I am worried about weight gain, but I am getting a kickstart on eating healthy now (I am trying to go gluten free and eat lean meats, poultry and veggies)

So - all in all I am feeling pretty good. I like that I have made a decision.  I look forward to all the symptoms going away (add joint pain to the long list of strange symptoms)..

Wish me luck with the surgery - and all that follows..