Low Calcium Follow Up

In my last post, I described the aftermath of (what I believe to be) food poisoning. Here is the update.

Measuring how tired you are is difficult because it could be attributed to three things: you are tired, you think you are tired, or you medication is off. How can you tell for sure?

Imagine being at the store st someone asks "Are you feeling OK? You look sick!" Even if you were feeling fine before, just that comment will insert doubt, if a second person says the same thing? You will find yourself coming down with illness symptoms. There is some psychological occurring. The same can happen when being tired. If you tell yourself you are tired, or others remind you that you haven't had much sleep? You'll find yourself yawning by 10am.

Another aspect to being tired is having your medication be off. Too many people surviving on thyroid medicine are all too familiar with this.  Months and sometimes years can go by and you'll never snap out of it until the medicine is magically adjusted to an optimum level.

Finally, you might just be really tired. As we age, or levels of energy change. Or perhaps sleep is more restless. Or perhaps there is less of it.

Which ever the case, it can be difficult to self diagnose being tired.

After being sick from food poisoning, I was tired all day long. I could not get enough sleep and often took naps in the afternoon. 14 hours, 10 hours - it didn't matter how much sleep I got.

This lasted for six days, and then passed. It has been almost two weeks since I became sick and I feel great! I am back to seven hours sleep and tons of energy all day long.

But it is concerning. A relatively minor illness could pull be down so far, and it could last for so long. I have never experienced anything like that before. And I am glad it is behind me!

Scary Situation: low calcium

I had a scary situation happen to me today while shopping.

I had a meatball sub last night for dinner. Unfortunately it didn't agree with me and I suffered all night. I wasn't sure if it was going to come up or our out... And it finally came out through massive  Diarrhea. 

6am arrived and I took my Thyroid medicine as I always do, and went back to sleep.

 14 hours after going to bed, and 18 hours after eating the suspect meatballs, I woke up. Tired and low energy, but I had survived the meatballs.

I had no desire to eat anything until 24 hours after the meatball sub. I started feeling weak and light headed, so I ate just a normal meal, nothing special.

25 hours after the meatball sub, I went to the store to get a few things with my wife. While at the store, I started feeling tired. The light headedness, which had dissipated while eating, returned. My lips felt numb and my heart felt like it was racing.

My wife was talking to me at the store and I wasn't paying attention because the overhead store lights seemed to be... moving.

"Are you OK?" She asked.

"No," I answered.

Was I dehydrated? Was I low in calcium? Was I still sick?

We sat at a bench in the store while she retrieved her emergency roll of Rolaids and I took two. She then left me to purchase a bottle of water, which I drank.

My wife checked out of the store and drove us home. On the way home I had two more Rolaids.

Perhaps an hour after the incident I felt OK. Still tired, but OK. I am not sure what caused it - dehydration, calcium, or illness - because all three can have those same symptoms.

That was scary - I have never had that kind of an episode before. I am a big tough guy, I usually power through anything. For me to take a knee meant there was defiantly something wrong.

Changing levothyroxine

I am almost two months post-op and my doctor is increasing my levothyroxine dose. My last bloodwork numbers were:

TSH. 3.01   (.27-4.20)

T4 Free. 1.41.  (.9-1.7)

The doctor wants to keep the TSH closer to the lower half of the normal range (between 0.5 and 2).

As a results I will be increasing from 150mcg to 175mcg. I am not sure I am thrilled with this change because I feel really good. I have some times were I feel down in the dumps, but that is t often and it usually doesn't last long. My energy levels are high and I don't feel tired. Also, I have learned that TSH means less that Free T4 - in other words, if my T4 is good, that is what is important. I understand that if TSH is too high it could promote thyroid and/or tumor regrowth, but it isn't high - it is in range.

My next blood work will be in two months. In the meanwhile, stay tuned and I will let you know whether or not this change was good for me.

Second Postop Appointment with surgeon

Yesterday was my second post op appointment with the surgeon. 

Everything is good. He said my scar isn't silver because it goes some sun exposure, but he doesn't think that will be a problem. He did recommend massaging it more.

He doesn't believe I will need RAI, but said he would defer that decision to the endocrine Doctor.

I will see the surgeon every six months and they'll make decisions about additional tests in the future, but for now everything looks fine!

Thyroidectomy Scar: The first 45 days

Click on the video to see the progress of my scar over the first 45 days.

Online Support Groups

I participate in as many online support groups as I can. Support groups could be Internet message boards or Facebook groups or something similar. A very popular Facebook group is the "Thyroidectomy Group".

These support groups are wonderful. They are filled with people that are either seeking help, or people that enjoy helping. You can ask any question you may have and it is likely you'll get a dozen or two responses. I highly encourage anyone going through a Thyroidectomy to seek out one of these groups.

Just a word of caution.

The groups are filled with, as I mentioned, people who are looking for help. They have a problem and they are turning to the group for advice. That means these support groups are going to be filled with people's problems... And some of the problems are very scared.

I became involved with the support groups before my Thyroidectomy surgery was scheduled. I wanted to learn about the surgery and see what problems I could be facing. The more I read, the more I became scared. I started to imagine that all these problems everyone was having would happen to me! While certainly there are risks and something could happen, most of the things I read were never going to happen.

The support groups are an odd phenom sometimes. I don't mean to belittle it or make light of anything anyone is experiencing. But I'll read things like "I have a hang nail. Does anyone else?" And then half a dozen other people will respond "I have a hang nail too... It must be because we had a Thyroidectomy!" There are some interesting correlations that get made sometimes, and they are entertaining to read, but most of the time I am left thinking "guys, come on!"

Then there are some terrible stories. I recently read that a woman has been unable to die her hair - the dies won't take hold of the hair. Her conclusion was that it was due to her Thyroidectomy. Maybe it was. Or maybe it was due to something else (a new shampoo, a vitamin, etc), who knows? When reading something like that it is very easy to be left thinking "Oh my God, I will never be able to die my hair if I get a Thyroidectomy!" Which, as far as I can tell, is not true.

Sometimes things happen to you and it has nothing to do with a Thyroidectomy!

When I read about all the people having problems, I am tempted to draw a conclusion that there must be an epidemic of problems out there! But there isn't. There are far more people who do not participate in support groups than do. There is a huge population of people who had a Thyroidectomy, are doing fine, and have moved on with their lives. That population is not represented in the support group.

Only take medical advice from a doctor. That sounds right, doesn't it? Yet in these support forums, many people dish out medical advice. If you think your Free T4 number is wrong, there will be at least 3 or 4 people to tell you what to do about it. In my experience, I have found the advice to be a mix bag or guesses and great information. But I take the great information back to my doctor to get it verified. Some of the advice is "you need a new doctor". You can weigh that advice and consider getting a second opinion. Just be very careful blindly following medical advice in the forums (or anywhere other than from your doctor).

The online support groups are awesome. The information is incredible and the numbers of people ready to help is breathtaking.  I highly encourage participating in one. Just be careful and know what you are getting yourself into!

Standing order to check calcium

The Parathyroid are four seed sized organs next to the Thyroid that regulate calcium levels in the blood stream. I lost two parathyroids during surgery and my calcium levels were wonky for weeks afterwards. I stayed in the hospital for four days as they tried to get my calcium levels to raise from a 7.8 low.

Anyone having a Thyroidectomy might encounter calcium problems. It may take a while for the parathyroids to wake up, or, if parathyroids were lost during surgery, it may take time for the surving ones to take over all the duties.

When I was sent home from the hospital, I was taking 10.5 large calcium pills per day! And the blood levels still weren't at the 8.6 minimum. Eventually, the levels did rise.

I was concerned about this because at some point the parathyroids will kick in (which can be measure with a Pth test) and then I'll have to cut myself back until my numbers were within range.

I talked about this with my regular doctor. He agreed to give me a standing order to have my calcium checked twice per week for the next sixth months!

That order has allowed me to go through the calcium changes I needed without concern for making a mistake.

I have been cutting back my calcium supplements because taking too much supplement can lead to kidney stones. I actually cut back too far - my last test showed a dropped back out of range, 8.5. I would never have know this if not for this standing order!

If you have calcium concerns after a Thyroidectomy, talk to your doctor about getting a standing order for blood work. It really helped me!