Live It: My Thyroid Journey Part 5

You can read the other parts here.

Part 1.
Part 2.
Part 3.
Part 4.

Started off the week of Thanksgiving by meeting with my surgeon for my post-op visit.  He told me that the pathology results had come back and everything was benign.  Thank the Lord!  He said that the nodules turned out to be adenomas which is the exact same thing I had on my liver.  He could not think there was any relation to the two things though.  I told him I had started feeling faint and hot all the time and I was having trouble sleeping.  I wondered if my Synthroid prescription was too high.  He told me to contact my endo to see if they could move up my appointment but explained that even if they did labs on me right then, it was too soon after surgery to get good readings on my blood work.

Over the next two days things were just BAD.  I felt so weak all the time.  My heart started racing and feeling like it was flopping.  It's a very strange feeling to explain but my skin felt very light but under that feeling was a feeling of fastness.  The day before Thanksgiving, I was standing talking to some ladies at work.  I started feeling faint and my heart started feeling like it was flopping and stuttering in my chest.  I sat down to see if that would help.  Then I became very hot and started sweating.  The next minute I was freezing and shaking, and then very hot again and then felt like I was going to be sick.  These feelings kept cycling over and over - hot, cold, hot, sick.

Thankfully my primary is right next door to our office so I went and told them I thought something was going on with my heart.  Blood pressure was fine, pulse was slightly fast.  They did an EKG and it was normal.  They really had no idea what was going on.  I explained about my surgery and had been told there could be the possibility of something called a "thyroid dump".  The PA I was seeing that day had never heard of that before and consulted with the staff.  They suggested I contact my endo and explain what they had done that day and how I was feeling.  After getting back to the office and leaving voicemail for my endo, her nurse called me back. Yes, I was probably experiencing a thyroid dump which is where some of the remaining thyroid hormone stored in the fatty cells of your body start to release.  That gets mixed with the synthetic thyroid by prescription and it results in your body once again having too much thyroid hormone that it can handle.  Symptoms of hyperthyroidism return and all you can really do is wait it out.

I spent the remaining part of the holiday weekend on the couch thinking I was dying.  That is not an over-exaggeration either.  Several times I thought "here comes that heart attack" or thought I should get my behind to an ER quickly.  I was told to temporarily stop my Synthroid for a few days.

I did that and rested a lot, and just as quickly as those symptoms had come, then they were gone.

I woke up the following Monday morning feeling great and have continued to feel good ever since.

I have my next endo appointment next week and they will check my levels through more blood work.  I hope we can find the right level of Synthroid soon and I can start trying to get back to myself.

This was all shared with you as a release for myself to get it all out and as a warning to all that read this to be vigilant of your health.  Like I said earlier, you have to be your own advocate.  If you feel that something is not right with your health, start asking questions, reading, educating yourself.  I had always been the type to do whatever the doctor said, to follow blindly.  The problem with that is in any given medical practice, there are so many patients to each doctor.  Maybe things get missed.  Maybe the doctor you are seeing is not the right doctor for you.  If I had followed my instincts about the first endo I saw, I might could have moved onto another one sooner and found these nodules sooner too.  You know when your body isn't working like it should.

Once you lose your health, it is so very hard to get it back and most of the time getting it back isn't even an option.  Don't just sit there and wish things away.  Make yourself a priority and take care of yourself so you can take care of the ones that depend on you.

Live It: My Thyroid Journey Part 4

Thanks for sticking it out this long.  You can catch up on the whole story.

Part 1.
Part 2.
Part 3.

As with any surgery, you wonder what it will be like.  I had well over a month to think about life after surgery.  I've had other surgeries in the past - liver and gall bladder in 2006 and C-section in 2008.  I can tell you that 2 days after my liver surgery I was sweeping off my front porch.  Again, probably not one of the best decisions ever but I was.  The only downside I had to that surgery was that the pain medication really messed with my mind.  It put me into such depressive thoughts that I was scared to take them ever again.

But what would life without a thyroid be like?  Consulting Google again is not the best idea when dealing with medical issues but I did it anyways.  All I read were accounts of people having their thyroid removed and how their lives were worse than before.  I almost called and cancelled the surgery.

My husband talked me down off the ledge and on Monday, November 9th my thyroid was removed.  We spent one night in the hospital.  How did I feel?

It looked like I had sustained a throat punch from a prize fighter.  My throat hurt so bad on the inside. They had a hard time intubating me, possibly from the size of the left side of my thyroid.  Every movement you make, you have to use your neck so it was pain all the time.  There was a huge, huge hard lump under the incision.  I looked like I had swallowed a shoe.  So I guess you could say I felt like I had been run over by a Mack truck.

Recovery was about a week out of work.  I was weak all the time.  I know it was from about a year of no physical activity before the surgery but it was rough.

Once back at work, I tired out easily.  Everything was slow going.  Until the week of Thanksgiving, that is.  That's when things really went south.

Stayed tuned for the final installment of My Thyroid Journey.

Live It: My Thyroid Journey Pt. 3

You can read Part 1 here and Part 2 here.

The two options were ablation or surgery.  My endo suggested we go to meet with the surgeon she recommended just to ask him questions and get a feel of what we could expect.  I was not really taken with the idea of doing the ablation honestly.  It seems to be a very strict protocol before the procedure and then isolation afterwards for a few days. While I was continually moody and cranky and tired and could probably use a few days to myself, that still did not sound enjoyable to me.  Surgery really did not either though.

We met with the surgeon and he recommended that he remove the entire thyroid instead of just the side that most of the nodules were on.  He said he could wait to open me up to make that determination and possibly keep the right side intact.  I would probably still be faced with having hyperthyroidism after the surgery and would have to remain on the methimazole.  He did warn me that if the pathology came back and the suspect cells were something to be worried about, I would still be faced with doing ablation to kill the remainder of the thyroid cells.

I definitely did not want to keep taking that medication.  After Hubz and I talked over everything, I decided to do the surgery.  I did not ask him to try to save the right side of my thyroid either.  These cells and this medication put me in the mindset that I just wanted it all out.

Surgery was set for November and I was completely fine until about two weeks before.

Stayed tuned for Part 4 of My Thyroid Journey.

Live It: My Thyroid Journey Pt. 2

You can read Part 1 here.

My hair stopped falling out.  The weight gain did level off.  But I still felt no better.  My primary care doctor wanted me to just have my thyroid removed totally.  If that happened, I would be placed on synthetic thyroid hormone for the rest of my life.  That’s not a really horrible thing but I know that people on it still have a hard time at first getting their levels regulated and weight gain / inability to lose weight is always an issue.  The thyroid controls so much in your body that I could not imagine not having it even if it wasn’t behaving itself.

All along though I knew my primary and this endo were not on the right track.  You know your own body.  You know when it isn’t working correctly.  The one message I want to share and hope that it gets heard is “you are your own best advocate”.  You know when your body is not working at its maximum potential.  You have to be the one to get this across and try to get heard.

I wasn’t being heard.  It was time for a new doctor.  In August, I met with a new endo and within five minutes of talking to her, she said she did not think I really had Graves.  She took me down the hall and did an ultrasound on my thyroid.  She found nodules.  Nodules can make the body act just like Graves does.  This happened within 5 minutes.  If the first endo had done an ultrasound, I could still have all my hair and not have all of this weight gain to deal with.  This is the number one thing that frustrates me the most.  One test and five minutes could have prevented 8 months of overdosing on potentially harmful medication, hair loss, weight gain, wasted days filled with stress, anxiety and fatigue.

The options for treating these nodules would be to either have radioactive iodine ablation where all thyroid cells are killed off or surgery to remove the nodules or the thyroid.  If I did the ablation I would have to stay away from my daughter for 2-4 days.  And with surgery there are all the regular issues surgery brings.

She sent me for an iodine uptake test where basically you take one radioactive iodine pill and come back the next day for imaging scans.  That test showed that I had multiple nodules on my thyroid and one of them had "suspect cells" that they would need to remove and have pathology run on them.

It was time for me to decide how I wanted to be treated.

Stay tuned for Part 3 of My Thyroid Journey.

Live It: My Thyroid Journey Pt. 1

I have been absent for a while while dealing with health issues but it's been pressing on me to write and share this with you all for a few weeks.

Last November after experiencing some scary heart palpitations, I found out I had hyperthyroidism. My primary care physician first told me I had hyperthyroid and Hashimoto’s Disease which, and I could be wrong, but don’t believe you can be hyper and have Hashi’s.  I have no medical degree but I have never seen that before.  I was sent to an endocrinologist and was then told no Hashi’s but I did have Graves Disease.  Oh yes, Graves.  What a great name for a medical condition, right?

Since my thyroid levels were so high, I was put on twice the manufacturer’s recommended dosage of methimazole, the medication given to treat hyperthyroid issues.  This is not a great medication to be on.  It can affect your liver and having already had liver surgery in the past, I was concerned about staying on this for a long period.  The goal was to try and get my body into remission so the meds could be reduced or dropped completely.  Over the next few months though, I gained back the 20 pounds I had lost before I was diagnosed and then another 20 pounds on top of that.  My hair started falling out in clumps.  It truly looked like I was going through chemo or something.  I lost half of my hair.

The medicine had thrown me into medically-induced hypothyroidism.  I felt so fatigued and moody all the time. I didn’t want to do anything or talk to anyone. Trying to make complete sentences some days was really an effort.

I went back to my endo and she was very wishy-washy about it all.  “Maybe the hair will stop falling out soon.”  “Maybe the weight gain will level off soon.”  “Maybe you should take this much dosage or you might need to take this much.”  I got no real answers and felt no better.

So I did what any medically licensed by Google and WebMD person would do.  I stopped taking the medicine.  Completely.

Read Part 2 of My Thyroid Journey tomorrow.