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...

Definitely Allergic :(

Why do allergic reactions always start for me on Friday night?  It was not a fun weekend and very hard to make "Daddy day" special for my husband (who is an awesome, super supportive, super involved dad)

I was on the meds for Graves for 1 week - and the allergic reaction started.  Luckily it isn't as bad this time, but it still is not fun.

Spoke to the doc - I will just stay on the beta blocker until September and decide then if it makes sense to get the surgery or if my body somehow miraculously heals itself..

Let's hope for the best..

Graves disease: Acupuncture & Chinese Medicine

Today, I got some acupuncture and some herbal remedies.  The Dr. I saw said that Graves disease cannot be treated without Western medicine, but Chinese Medicine & Acupuncture helps that process along.

Basically, she looked at my tongue and said two things - one it is red on the tip meaning my liver is "on fire" and there is this fissure there which is an excess in phlegm.  She suggested acupuncture twice a week and herbs to cleanse my liver.

I did the acupuncture, and although strange, I felt good.  I got kinda sleepy an felt generally relaxed.

As for the herbal remedy..they are sitting next to me and I still don't know what to think of them.

I asked my colleague who was born and raised in China - he said it is common to use combination of western & chinese medicine to cure/help all sorts of diseases.  He looked at the medicine and researched it a bit and said it looks good - no side effects.

I am still not sure what I will do.  Am I just messing with things?  Or will this help... tough to decide..

This has to be some sort of miracle...

Well, you know from my last blog posts that I went to the Dr. last week with cold feet from the surgery and called it off.

In that appointment I told that endocrinologist that I was feeling better - and here was the conversation:

Me:  Is there a reason why I feel completely normal now?  I am even gaining weight and eating healthy and haven't taken the beta blockers in days? (if you are hyperthyroid you should be losing weight even when eating like a hog and heartrate should be hight with no betablockers)
Dr:  You think you are better, don't you?
Me:  I know I sound crazy, but I do.  I know all studies say this isn't possible...
Dr:  Well, let's do a blood test

The Dr. called me today and her first words were "You must have been wishing ALOT" (my heart leapt)

My levels are MUCH better.  My T3 levels are back to normal, My T4 levels are still high but significantly less than 2 weeks ago, and my TSH is still non-existent (but that takes months to get back to normal)

Not to be too excited - I am still hyperthyroid and I will always have the Graves antibodies and be susceptible to this all coming back

BUT, I am plowing ahead with everything to give my body the best chance it has and making decisions for the long-term

• I am staying on the small dose of the meds I started on Friday (cross you fingers my body can take this med for a little while - so far, so good)
• I am eating gluten-free (I did this 2 weeks back for 4 weeks)
• I have an appointment tomorrow with an acupuncturist that is known for treating Graves (along with Western medicine - researched her, she seems good)

Today is the best day (medically) I have had in a while. 

I can only attribute all of this to my friends and family that have been crossing their fingers and praying for me, because this "medically" isn't normal (and some would say not possible)... Thank you!

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....