Feeling Great - but still some progress to make..

Quick update: My thyroid levels are good - and I am feeling good on that front... Almost back to myself..

I have gained a little bit of weight (but not much) - and I am adjusting to not being able to eat everything I want (that was one perk of Graves disease)....

My calcium levels look good, but my doc just wants me to continue the supplements for a little while..

All-in-all positive..

I am feeling like it is almost time to get back to the whole point of this blog soon - finding something that makes me tick.... (sorry for the diversion, but I found it to be useful to get everything out in a blog :)..) - Thanks for bearing with me !

Getting better, but mother nature isn't cooperating

I am feeling a lot better over the past few days - I would almost venture to say back to myself (maybe with a tinge of anxiety hanging around), but I cannot complain..

I went to the surgeon for my 1 week check-up and I am doing really well.  The best news is that they found no parathyroid in the pathology report - meaning all four parathyroids are still in there!!!   My left vocal cord is a little weak (which can happen), but she expects it will be fine by six weeks.  In the meantime it is a good exercise of how to keep the kids in-line without using a stern or raised voice.  I also have been told my voice is "sexy" because it sounds raspy and rock-star-ish :)  The incision point is really not that bad..It is about an inch long and I really think it will heal well with minimal scarring...

In case you are curious - I will put pics up of the incision point at the bottom - day after surgery and 1.5 weeks after surgery.  The small bandage is still on there - so it looks bigger than it actually is...but I just wanted to share in case anyone is going through something similar and wants to see the whole sha-bang..

Tomorrow I have a check-up with my new endocrinologist (I met him in the ER and he is basically the best Dr. I have met for follow-up and getting me back on my feet quickly - he even calls on weekends to check on me).  I am hoping my calcium levels are good, but I assume they are because I feel good..

So health-wise I am getting better...

BUT

Mother nature on the other hand decided to throw a spanner in the works and took down a very large part of a tree in our front yards, which partially pulled out the power lines to our house (leaving electricity surging into our house, but not able to get back out), and preceded to land on our car.   Then two surge protectors started melting and burning (and it looked like a fire was starting in my daughter's room)... and the power lines were dangling across our street in the pouring rain.

I first grabbed the brightest red chair and threw it in the middle of the street so no one would drive through the power lines (still live), I hit the fire button on our alarm and called 911.

The first things I grabbed when running out of the house?  My dog, engagement and wedding ring, ring from my babies, My calcium pills and water.   My mom remembered her car keys and we sat and waited what felt like an eternity for the fire department (it was only at most 5 minutes).   They were great - looked through the house and we eventually found two surge protectors - one burnt to a crisp the other started.

I remember sitting thinking "Really, God, REALLY?!?"..but with some time and hindsight we were really lucky:

1) No one was hurt
2) We were home - probably stopped my house from catching on fire
3) The kids weren't home and caught up in a pretty stressful situation
4) Our car, house, etc received minimal damage
5) Fire Department, Electrician, Power company and cable company all came in a VERY timely matter.  We had power within 6 hours - and cable the next morning.  Note: I will have to write thank-you letters
6) We actually got to use our generator (our very practical gift to each other for last year's anniversary)
7) Less raking - I know seems petty, but, hey - you have to look on the bright side.
8) We know better now about surge protectors, etc - to keep our house safe in the future.

Ending on a good note: today (besides hearing a chainsaw to cut-up our tree out front) it feels like a normal day...I feel good, the weather has cooled down..and I feel like I am one step closer to getting back to myself... It is almost like it never happened...

Here are the images of post-op and 1.5 weeks later... I really don't feel like it is too bad... curious to see how it looks when the bandage falls off:

Day After Surgery

1.5 weeks after surgery

Surgery and Complications

As if I should have expected anything different (considering I was the 1% of people allergic to the meds for Graves), I also had complications from surgery...

The surgery itself went well.  I remember the surgical staff in good spirits, the anesthesia being amazing and waking up feeling groggy, but OK.  My incision is actually pretty small..maybe an inch and the healing of the incision has been great..and has very little pain

My throat hurt (from the breathing tube), and my voice is still raspy (think Stevie Nicks).. I have trouble saying EE and AY...and I can't use a stern or loud deep voice "Kaya, Come" sounds very timid...but I am hoping that is OK longterm (the Surgeon is checking my vocal cords on Monday, but says they stayed in-tact during the surgery).

My PTH (Parathyroid hormone) levels dropped (they were either stunned or damaged during the surgery) and they control the calcium to your body, so they put me on calcium supplements and Vitamin D3 (simulates the parathyroid hormone), watched my levels, and I was discharged on Tuesday afternoon.

Background:  Calcium is the most important mineral to your body - it controls your muscles - your heart is a muscle and if calcium is low, your heart stops working properly...

I was excited to be home and see the kids, but by Wednesday morning, I was feeling pretty bad, tingling, disoriented...kind of in a cloud (all signs of low calcium).  I called my doc and they said to go to the ER to get my blood checked for calcium levels.  After a longtime in the ER (and a few IVs of Calcium) I got admitted.  They had to draw my blood every 4 hours, I had a few EKGs, I had patches all over me to monitor my heart rate and blood flow.  Basically I was scared to death.  I cried alot (anxiety is brought on by low calcium levels, too - Woo hoo [insert sarcastic tone]).

I had some more calcium IVs in the hospital along with Magnesium, a lot of back and forth with Dr's and nurses and eventually went on a liquid form of calcium for optimal absorption.  The hospital stay was not fun, I had a bad roommate, a good roommate, and then a room to myself (ahhh).  I had med students checking me out because I was a good sample case (that isn't common to see) and they were all interested to see how things were going with me.  (I had a good party trick where you tap the side of my face and my lip twitched, fun).

I was in the hospital from Wednesday - Friday (and almost had to stay another night because they didn't give me a dose of calcium correctly for 12 hours because the computer said they couldn't -ughh).  Basically, there were a lot of ups and downs and finally they released me on Friday.

Friday night I had anxiety from 11:30 - 6 at home ..I think this was really just my mind scared about my heart without the "security" of the hospital.  I called my endo and she said "you have been through a lot - you had graves, surgery, your hormones are all over the place - you may just be anxious because of what you are going through..'' I agree with her..

Once I took a nap (and a xanax) I felt much better.  I had dinner (my birthday dinner), played with the kids and have a glimpse at feeling better.  Let's hope this path continues :)

What has been great, though is the support of my family and friends. My Mom is still here with me and  my Dad and Sis came to visit, plus all the Facebook posts really made me feel good.  My husband has been amazing, too.  Needless to say I am feeling the love and that definitely helps.

There is still a journey for me to getting to 100%, but I have to remember to have patience....

Tomorrow's the big day...

I feel like I am in denial that surgery is tomorrow.  I have no idea how I will feel after the surgery..but I do know I am nervous about going through with it tomorrow.  I just keep trying to forget that it is happening, so that I calm my nerves.  I still think it is the best decision for me....

I keep hearing about stories of people that have gone through this and the recovery was easier than expected.  I hope I am in the boat too..

Wish me luck and keep me in your thoughts...

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....

Back to work, mama...

I went back to work today after almost 5 months of maternity leave.  I was very lucky to have that much time, but I wasn't ready to go back.  I feel like I have lived in the Dr. offices the whole time or haven't been 100% present (feeling out of it) and didn't do as much with the kids as I would have liked.   BUT,  C'est la vie - I can't dwell on shoulda coulda woulda..

It was hard to leave today to head to work - there were some tears, but not as hard as leaving Mia the first time.  I know better this time that this choice is the best for me and I will be a better Mom to them.  

Work gives me that "good job, Debbie" feeling.  I like the people I work with, the company I work for and the job I do.  I also like the freedom it gives our family to do a lot of great things. It does come with stress - namely commuting, but overall it gives me more good than bad.

The biggest thing it gives me, though, is the ability to focus on my kids and husband and have fun with them.  When I get home from work I have more energy to play with kids and the time to focus on only them and I have new things to talk to my husband about.

I do sometimes feel some Mommy guilt - like missing some of the "firsts", or sometimes thinking that the time I miss with them can never be taken back, but in my heart of hearts, I know being a working mom is right for me.

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..

Hello again - Life has gotten even crazier than I predicted

Well, it has been a LONG time since I posted anything.  Pregnancy and life started getting hard in November, but we had a beautiful baby boy in December and he really is amazing.  He is a really good baby, happy all the time - only a peep when he is hungry, tired or wants to be cuddled.  He slept through the night at 2 weeks until 8 weeks, but then he decided he wanted more mommy time at night.   He did have some fluid in his kidneys that they picked up when I was pregnant and he was on antibiotics for 3 months and monitored every 4 weeks.  That was really not fun, after a VCUG, the doc says he looks good and to have another checkup in 6 months!

As for everything that I was trying to achieve in the blog, well it all went out the door.  My closet is a mess, I don't even have time to look at the happiness project.  I said 3 months after having the baby I would bring this part up again, but as far focusing on getting my groove back..well it is kind of put on hold...well, maybe......

Three weeks ago I went to the Dr. because I just didn't feel right - I was extremely tired, felt like my head was always in the clouds, and my memory was a mess.   I got a blood test and it shows that I have extreme hyperthyroidism.

I tried to chalk it up to pregnancy, but the endocrinologist says it can't just be post-partum (I am going to another endocrinologist for a 2nd opinion).  He basically said "You have graves disease.  Take these meds. See you in 2 weeks."  The meds I am taking are methimazole (to stop my thyroid from producing hormones) and propanol (to help with my symptoms).   I left his office feeling scared to death and went to the internet to find out what this disease is.  DO NOT GO TO THE INTERNET TO FIND OUT ABOUT DISEASES!  I knew this going into it, but I looked there anyway.  There is Graves Rage, Graves opthamology (your eyes get huge), panic attacks, thyroid storms (your body breaks down and you can die), your hair falls out, you skin peels, rapid heartbeat, depression - and many more things.  Basically I was even more scared to death.

I starting taking the meds for 2 weeks and felt great - I could play more with Mia, cuddle more with Finn, and laugh more with Oliver and family, but then I got a bad case of hives and I had to stop taking them.... and really, I felt like my world came crashing down (and the internet came back to haunt me).  I basically cried for 2 days straight... went to my OBGYN thinking I had postpartum depression and he said something that I really needed to hear "Graves disease is as common as high cholesterol, it is hard to control in the beginning, but long term it is easy to maintain".  I went from level 10 anxiety to probably a 6..

I am sure I am overreacting (anxiety is one of the symptoms), but this just really sucks.  Some of the things I found on the internet are true:  There is only one other medication I can take (PTU) to control my hyperthyroid, and there is a high chance I will be allergic to that as well.  If that is the case, I will most likely have to take radioactive iodine (RAI) to kill my thyroid OR have surgery to remove it.  If that happens, I will have to take synthetic thyroid hormones.  Either way, I will most likely be taking meds for the rest of my life and my thyroid will be damaged in one way or another (there is very little chance for remission)

I go to get a second opinion on Tuesday with a endocrinologist in NYC, so we will see what she says.  In the meantime, I am off the methimazole, back on the propanol (to reduce symptoms) and took a blood test to see how my white blood cells and liver are doing (oh - another fun thing - the meds mess with my liver and white blood cells).

I am trying to hold off until 1 year after having my baby boy to see if my body sorts itself out and I have all hopes on PTU for now.  I will keep you posted on how that goes.  Please say some prayers for me.

Well, back to the point of getting my groove back.  Maybe hyperthyroidism is one of the reasons (if not the main reason) I felt like I lost my groove.  Maybe I have had this for a longer time and going through the process of making this better will help me get back to myself.  I am really trying to see the forest through the trees and  look at this optimistically.  What I have is can totally be put under control, it will just be frustrating getting to that point - and some things may have to happen that I don't really want to (killing my thyroid).   But, I really think this whole journey will help me get my groove back.