Fantastic Voyage, Part 3

There’s an expression I’ve heard a few times: Take everything you thought you knew, and throw it right out the window. Well have you ever felt that way?

If you answered yes, you most certainly are not alone. This is how I’ve been feeling over the last few months while dealing with this roller coaster ride called Hashimoto/Hypothyroidism.

As recently as July, I was on top of the world and feeling amazing, which I spoke about in a previous blog.  Well as soon as that went to post, the tides began to change… slowly. I need to stress that it was slowly because that really is how this whole thing seems to work, at least for me.

I was getting ready to go back to work for the school year, and we were going in with some major staff changes and issues. I also was working on several personal projects I wanted to launch. Needless to say, I was running myself into the ground and my stress levels were through the roof, and I just began to feel tired. Nothing crazy as it was months ago where I just wanted to be in bed, but enough to make me notice and slow down a bit.

Around that time, I was about to finish my last refill of Synthroid, and needed to see my Endocrinologist to check my levels and get a new prescription. I contacted her office to schedule an appointment, only to find out that she was on maternity leave, and had nobody covering her caseload. Her service said that they would call in refills to my pharmacy, and I would be covered until she returned in January. I picked up the medication, and saw that they changed my Synthroid to the generic brand called Levothyroxine. I didn’t think much of it at the time, but as soon as I started to take the medication, I realized… BIG MISTAKE… HUGE!!!!!!

I started to break out in terrible hives, and my hair was falling out. My boyfriend, whom I had just started to date during this period, had also noticed that as time went on, my speech was off, and I sounded like I was lost for words and stuttering. My energy level was going down significantly, and I was having issues concentrating, especially at work. I also noticed that although I didn’t gain tons of weight, I looked slightly bloated. Being that I had begun to understand my body since first being diagnosed in February, I knew something was not right. Let me be clear about something: I can handle itching and other side effects, but when something effects my livelihood, or I don’t feel like myself anymore, you best bet I’m going to be concerned.

One morning, I woke up with the side of my face swollen. I called out of work and made an appointment with my Primary Care Physician. I expressed all my concerns to her, and she informed me that the hives were probably an allergic reaction to the binding of Levothyroxine, which happens to some people. We did blood work, and my levels were off slightly. The doctor put me back on my Synthroid, with the hopes that all the other stuff would fall back into place once the medication was corrected.

Over the next six weeks, the hives went away, but the other symptoms had not. I had severe stomach cramps that would keep me up at night. My speech was getting worse, and I also noticed that I was singing the wrong words to songs that I had always known. I also started to trip over myself at times, and to the untrained eye, I guess I could have appeared drunk. Since I don’t drink and I was tired of waiting for my Endocrinologist to return, I immediately sought out a new one. Enter Dr. Eytan of Park Avenue Endocrinology & Nutrition.

Dr. Eytan sat and listened to me, and we looked over some previous lab results from my Primary Care Physician. She said something to me that I just felt was such a profound statement: that even though my levels come back within range, it does not mean they are in optimum range FOR ME. Think about it for a second… if “ideal” Thyroid range is between .2 and 4.5, and you are at 4.4, how ideal could you really be if .1 would make you off? And are you as ideal as somebody with a level of 2.5? And wouldn’t you think that stuff like age and sex would come into play here?

She provided several theories as to what was going on, including vitamin deficiencies and nutritional concerns, as well as different options should anything come up in my blood work. We did testing, including a complete Thyroid Panel, a Celiac Test to see if I was allergic to Gluten and a Metabolic Test. The tests showed that my Thyroid levels were out of whack. She decided to change my Synthorid to Levoxyl, which is another brand name Thyroid medication, which would give me less side effects, and told me to alternate my dosage between 25 and 50 mcg every other day. She also noticed my B12 was extremely low, and could be contributing to my “drunkenness,” and recommended taking a supplement. I also had to start taking my cholesterol medication more often.  She sent me on my way, and I have a follow-up appointment in January. I will also be meeting with a nutritionist when I return.

Today marks two weeks since seeing Dr. Eytan, and things have improved. I’m still a little itchy at times, and my hair still falls out, but both are known side effects of starting a new Thyroid medication, and will improve in time. I sometimes get a bit tongue-tied, but I find it happens more when I am excited or rushing. I am slowly coming back into myself and have energy again. The fact that I’m able to concentrate on writing this blog speaks on how far I’ve come since all this went down. I’m not 100% just yet, but I’m getting there.

The last few weeks have been a real eye-opener for me. I realized that as much as I thought I knew about my health, and no matter what I’ve researched, I’ve really only scratched the surface, and there is so much I don’t understand and question. I decided to step back a bit, and bring the Thyroid process back down to basics for myself. I think anyone who is dealing with any kind of Thyroid issue, or any Auto-Immune Disease, can agree that there are some “universal truths” when it comes to dealing with this journey, and I would like to share some with you.

These truths start at the top, and doctors need to take their patients a little more seriously, and not chalk everything up to “needing to see a shrink.” Considering that Thyroid issues lead to mental health concerns, and also that people with Hypothyroidism are more than likely misdiagnosed as bipolar or depressed, it’s time to pay attention.

I also think the whole “bedside manner” of some doctors needs to be reexamined. I get that some doctors can become desensitized by all the stuff they deal with on a daily basis, but I’m a person, and I need to be spoken to as one. Not be dismissed or labeled as hysterical. I want to know all the options available to me, not just the one that your practice has a deal with. Sometimes you may have to explain things to me as if I’m stupid and have no clue what you are saying, even if that means that you have to spend an extra five minutes with me. Here’s the way I see it: My body is a business, and I am the boss when it comes to it. If a doctor doesn’t want to listen or do their job, they can be replaced.

I think it’s safe to say that the medical field needs to catch up, and require that full Thyroid panels be administered as part of regular blood-work. For such a tiny part of the body, the Thyroid can cause so much damage. I also think as new information comes out on so many medical conditions and drug protocols, doctors, pharmacists and specialists should be required to take continuing education courses, so they can be up on what’s happening.

But we can’t just place the blame solely on the doctors, specialists and pharmacists. They are human after all, and as I said before, they are working for us. So to some degree, WE, as the patients and bosses, have to take some accountability as well. We need to open our mouths, and be more vocal about how we are feeling. Some people just “bend over and take it,” which I understand is the way we were taught. But times are changing, and we are talking about our health and well being here. I can’t think of a better reason to be an advocate than for yourself. Don’t you agree?

I also think it’s very important to educate ourselves. I have spoken with several people who believe that being put on Synthroid is pretty much like joining Weight Watchers, and the Thyroid is the only factor in weight gain. Unlike years ago, we live in a time where information is just a click away. There are so many wonderful websites and resources, with a plethora of knowledge. I recommend taking a look. I personally have joined several discussion groups on Facebook and started listening to this wonderful podcast on Thyroidnation.com. I have found them to be very informative and useful, even if I don’t necessarily agree with everything I hear or read. I am able to go back to my doctors and ask more informative questions when I am equipped with more knowledge.

There’s something that must always be remembered, and something I think some people forget. We are all individuals, and we all heal differently. There is no one correct way to handle any Auto-Immune Disease, including Thyroid issues. If there were, do you know how filthy rich the person who created it would be? There are several options out there for medications, food regimes and vitamins, and what works for some may not work for others. There are other factors that play into everyone’s healing processes. Personally, I think that it’s a matter of finding the right balance of medication (whether natural or over the counter), diet and stress relief. But that’s just my opinion. You need to find what works for you.

What it all comes down to, at least for me, is that we as a community of doctors, specialists and patients need to come together and help one another. While the outside world wants to tell us to just get some sleep, lose weight and see a shrink, we should be that shoulder for each other when the chips are down, and help to celebrate those little things. Nobody understands better what I’m going through than a fellow person dealing with Thyroid Issues or an Auto-Immune Disease. So we should be there for each other.

With that said, it has come to my attention, and I have mentioned this before, that there is very little information out there for men with Thyroid issues.  As most of the sites will tell you, Thyroid conditions, are primarily seen in females, and more prevalent in elderly people. Clearly, I don’t fit into either of those categories, and I’m pretty sure that I’m not the only man out there to be dealing with this on a daily basis. This needs to be rectified.

I would like to announce that I will be creating a Facebook Discussion Group for men with Thyroid Issues, called Hash-He-Moto. Of course, women are more than welcome to join and discuss stuff as well, but I want to give men a forum. It is my hope that we can help one another heal by bouncing ideas off of each other, and getting the word out there that nobody is alone.

At the end of the day, I’m just a regular person with no medical background on this incredible journey. I’m learning as I go along, just like we all are. And if I can help just one person along the way by being vocal about what I’m going through, then I’ve done my part.

I thank all of you for coming on this ride with me.