A glimpse of what normal feels like

I’ve had several folks asking about how I’ve been doing since I’ve been on the meds for one week now. Honestly, not that much different, but I didn’t expect very much.  You can’t start a patient on a high dose of medication safely, so I have to “step up” with my dosages.

I’m back to weighing myself daily again, unfortunately.  Given my situation, I have to watch EVERYTHING I do and make notes to find relationships/causation for symptoms, etc. I’m even tracking how much I poo.  I know, we’re about to get real up in this piece, but if you know anything about hypothyroidism, you’ve got a slow digestive system.

On Saturday, I calculated that I’ve lost 5 pounds, which I’m sure is water weight.  Over the weekend, I went up and down so I’m sure it is just fluid.  I’m taking my old people water pills so that is helping.  My face is definitely less puffy.

The big news is that I had a brief, but albeit, powerful glimpse on Saturday morning of some normalcy.  I woke up and I was AWAKE.  Like really, really awake.  I took my pill and shortly thereafter, I was ON.  I couldn’t believe how great I felt. It was like I had been injected with superpowers, seriously. For a good two hours, I was a cleaning machine!  I got so much work done in the house during that time and didn’t have to sit down on the couch at all.

I couldn’t believe it!  Kevin was a little irritated because I was literally back to my old school self, super hyper, happy morning person.  I did three loads of laundry, cleaned both bathrooms, the dining room, and living room.  It was great.

But, it was also short lived.  I’m finding that I’m getting a good two hours of energy and then I’m back on my butt, dead tired.  The bad news is that I am going to have to work up to all day feeling good, but the good news is that I know the medicine is working for me and this really is a thyroid problem!!!

As I was tearing through the house, I thought to myself, wow.  I could go to they gym.  Or go outside and rake.  This must be what normal feels like!  It’s been so long I had forgotten.

I’m slowly working Mr. Hall towards a gluten free household.  I got some of the brown rice Triscuits over the weekend and they were actually really good!  They are gluten free and have a different texture than the regular Triscuits that are more dense.

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Hashi what?

In my post yesterday, I briefly mentioned that I was diagnosed with Hashimoto’s disease.  This is one of the causes of hypothyroidism, which I’d like to discuss today.

Hashimoto’s is not the same thing as hypothyroidism, but it’s kind of like a chicken and the egg dilemma.

Hashimoto’s is an autoimmune disease that causes your body to create antibodies that attack the proteins in the thyroid.  This gradually leads to a destruction of the thyroid, resulting in hypothyroidism.  You can have this without having symptoms of any physical problem when you examine your neck.

The autoimmune disease starts when your body has an immune system that has malfunctioned in some way.  I don’t know when my started, since I was 25 when I went to the doctor.  I suspect it may have been from a surgery in my neck area when I was 20, but it could have been when I had mono my senior year in high school.  No one really knows why it happens.

When you have Hashimoto’s, you can have periods of time where it goes dormant in the beginning, so you may bounce between hypothyroid symptoms and then you feel great.  This explains a lot of why I would have two years of great and then a year of miserable, only to be followed by a honeymoon of great again.  The problem is once it goes into the destruction phase of your thyroid, you pretty much are just miserable because your thyroid can no longer produce the the hormones the body needs to function.

That’s where I’m at now.  There is no treatment for this because it is an autoimmune disease.  You have to supplement with thyroid medication and figure out what makes you “flare”.

I’m learning all I can about this now.  I’ve added an additional tab in the blog that says Hashi Hoopla so I can link all posts that are relevant to my thyroid there.

In my search, I found a great letter that someone posted online, called “I am Hashimoto Disease”.  When I read it, things finally clicked for me.  This is DEFINITELY what I have experienced.  I’ve posted it below.

Hi.  My name is Hashimoto’s.  I’m an invisible autoimmune disease that attacks your thyroid gland causing you to become hypothyroid.

I am now velcroed to you for life.  If you have hypothyroidism, you probably have me. I am the number one cause of it in the U.S. and many other places around the world.

I’m so sneaky–I don’t always show up in your blood work.

Others around you can’t see me or hear me, but YOUR body feels me.

I can attack you anywhere and any way I please.

I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.

Remember when you and energy ran around together and had fun?

I took energy from you, and gave you exhaustion. Try to have fun now.

I can take good sleep from you and in its place, give you brain fog and lack of concentration.

I can make you want to sleep 24/7, and I can also cause insomnia.

I can make you tremble internally or make you feel cold or hot when everyone else feels normal.

I can also give you swollen hands and feet, swollen face and eyelids, swollen everything.

I can make you feel very anxious with panic attacks or very depressed.  I can also cause other mental health problems. You know crazy mood swings? That’s me. Crying for no reason? Angry for no reason? That’s probably me too.

I can make your hair fall out, become dry and brittle, cause acne, cause dry skin, the sky is the limit with me.

I can make you gain weight and no matter what you eat or how much you exercise, I can keep that weight on you. I can also make you lose weight. I don’t discriminate.

Some of my other autoimmune disease friends often join me, giving you even more to deal with.

If you have something planned, or are looking forward to a great day, I can take that away from you. You didn’t ask for me. I chose you for various reasons:

That virus or viruses you had that you never really recovered from, or that car accident, or maybe it was the years of abuse and trauma (I thrive on stress.) You may have a family history of me. Whatever the cause, I’m here to stay.

I hear you’re going to see a doctor to try and get rid of me. That makes me laugh.  Just try. You will have to go to many, many doctors until you find one who can help you effectively.

You will be put on the wrong medication for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.

There are so many other ways I can make you sick and miserable, the list is endless – that high cholesterol, gall bladder issue, blood pressure issue, blood sugar issue, heart issue among others? That’s probably me.

Can’t get pregnant, or have had a miscarriage?

That’s probably me too.

Shortness of breath or “air hunger?” Yep, probably me.

Liver enzymes elevated? Yep, probably me.

Teeth and gum problems? TMJ?

Hives? Yep, probably me.

I told you the list was endless. 

You may be given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away.

You’ll be told to think positively, you’ll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you’ve seen, just how debilitating I am and how ill and exhausted you really feel.  In all probability you will get a referral from these ‘understanding’  (clueless) doctors, to see a psychiatrist.

Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I can be.

Some of them will say things like “Oh, you are just having a bad day” or “Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago.

They’ll  also say things like,  “if you just get up and move, get outside and do things, you’ll feel better.” They won’t understand that I take away the ‘gas’ that powers your body and mind to ENABLE you to do those things.

Some will start talking behind your back, they’ll call you a hypochondriac, while you slowly feel that you are losing your dignity trying to make them understand, especially if you are in the middle of a conversation with a “normal” person, and can’t remember what you were going to say next. You’ll be told things like, “Oh, my grandmother had that, and she’s fine on her medication” when you desperately want to explain that I don’t impose myself upon everyone in the exact same way, and just because that grandmother is fine on the medication SHE’S taking, doesn’t mean it will work for you.

They will not understand that having this disease impacts your body from the top of your head to the tip of your toes, and that every cell and every body system and organ requires the proper amount and the right kind of of thyroid hormone medication for YOU.

Not what works for someone else.

The only place you will get the kind of support and understanding in dealing with me is with other people that have me. They are really the only ones who can truly understand.

I am Hashimoto’s Disease.

Success! A doctor who listens!

I’ve been very remiss in getting this post up, especially since it’s been four days since I saw my new doctor in Richmond.

As most of you know, I had a GREAT appointment!

The practice is located in a very nice area of Midlothian, which is near Richmond.  I was happy that it wasn’t more than a 3 hour drive to get there and it was much easier to drive earlier in the morning.

When I got there, I checked in and was surprised to find out that the doctor prefers to have his patients wait in the waiting room, rather than being ushered into the examination room.  He was so kind and introduced himself while he took me back.

First of all, this guy is awesome.  He’s old and kind, with soft fingers and a grandfatherly demeanor.

He sat down and looked at me and said, I’ve seen your lab work you sent but I can say right now just LOOKING at you that you have a thyroid problem.

I was floored!

I asked why and he said he could see the puffiness around my eyes, my swollen face and hands, my eyebrow hair falling out on the edges and my wispy hairline.  He said it was classic hypothyroid.

We spent some time talking about my test results and the 2003 EVMS results, which I had brought with me.

So he checks it out and declares that I DO have an autoimmune disease, which is not always caught because if you aren’t in a  “flare” when you get tested, sometimes it doesn’t show up on the lab work.  I was just lucky that it popped on the 2003 labs so I had proof.

Then, he says, how long has this been going on?  I told him since 2003 and he said that the autoimmune issue should have been treated earlier because it could have prevented so much of my thyroid damage.  As a result, I am definitely hypothyroid now and need to be medicated, regardless of the labs coming back normal.

Praise the interweb gods for keeping me informed!

He then did a physical exam and we chatted about how swollen my body has been for the past few months.  He indicated that my body is so inflamed and I needed to get some extra help to get rid of the water retention, so he prescribed me an old people diuretic to take.

Then, he said that he would start me on a low dose of thyroid replacement hormone medication and see how I do for a month.  We will test in 4 weeks and then I will see him again on the first week of December.  We will go through these monthly testing and visit cycles until I am at optimum levels for ME, based on not just the labs but also how I look and feel.

I couldn’t stop boo-hooing through the whole appointment.  I couldn’t believe that he was taking me seriously and was so willing to help.

I’m going to post some more this week on some of the specifics in regards to the autoimmune issue and the specific medication that I’m taking, so be on the lookout for those posts.  Also, he has some very targeted plans for my diet and other medication that I’m taking, since I’m on an autoimmune protocol now.

I’ve been told to take a photo on the first day of my meds (today, since CVS didn’t have the meds in stock) and then again in a month.

Here is my new hero.

gent

Well, it looks like I’m on to Plan B…

So I had my appointment with my primary care physician.  It went well and not well.  I’m not sure how to process any of this.

So the good news is that my thyroid uptake is normal and the pictures all came back fine.

The bad news is that I’m still stuck in subclinical land.

My PCP basically was like, I know you have a thyroid problem.  But, she says, I’m not willing to treat you and take on that liability.

WHAT?

You told me three weeks ago you’d do it if it seemed like things are off.

Sigh.

I gave her all of the research, the journal references, the press releases, the conference presentations.  All of them saying I should be treated.  She agreed but was pretty firm that she didn’t want the lawsuit of a mistreated patient.  I appreciate her honesty, but I’m a little miffed with her right now.

Let me explain.

I got my EVMS records over the weekend!  I can’t believe they actually found them because I asked for these almost two months ago.  I had given up hope.

Sure enough, I DO have an autoimmune thyroid disease (Hashimoto’s).  Check this out- on this letter he sent to my PCP in 2003, it says that I have elevated thyroid antibodies and have acute Hashimotos.  Then, it goes on to say that while I test normal now, he would like me tested every year because I will likely become “overtly” hypothyroid.

WTF???

So I’m reading this and thinking, why didn’t anyone call me for an appointment the next year?   EVMS?  My PCP?  Someone?  Why didn’t anyone share this info with me?

So basically I’ve been going along for 10 years untreated because someone dropped the ball.

What is even more confusing is that my thyroid antibody test came back negative this time around.  My PCP can’t explain this but in my opinion if you test for any type of antibodies EVER, you have them always.  It just waxes and wanes in your system.  Or, you get false negatives.

So it’s on to Plan B.  I see the specialist in Richmond on Friday and hope for the best.

 

 

 

 

 

Another round of tests and two upcoming appointments!

All of a sudden, I’m feeling like I’m starting to get some momentum here.  (knock on wood)

Let me tell you about the past week…

I spent some time at the hospital yesterday and Monday to get my thyroid uptake testing done.  Finally, they called me to do it last week and I was pleased to get in right away.  I swallowed the radioactive pill on Monday morning and got tested throughout the day to see how my thyroid was functioning.  Then, yesterday, I went back for a final scan and they also took a series of pictures.

The picture taking was the worst part.  I had to lay on a table with a pillow under my shoulders and my head propped back in a weird position.  Chin way up so my neck was stretched up.  

Of course, I’m freezing all the time so the radiation tech was kind enough to wrap me in a wooly hospital blanket like a burrito.

Then, she put me in a tube machine that looked like something for a MRI but instead she used a flat panel to take xray like pictures.  I had to sit perfectly still, in this contorted position, for 10 minutes at a time.  She did four total films.

And, because I’m a smart cookie and I know better, I asked for a copy of the films before I headed home.  No, I don’t mind waiting for them.

So without further ado, I give you my beautimous thyroid.

Image

 

I know, it’s more exciting than you thought it would be, right?

I have no idea how to read these, but I have a sneaking suspicion that the darker spots are not normal.  But, then again, I’m not a radiologist, so I’ll have to wait for the report. That’s just what I found when I was looking online.

Next Monday, I have an appointment with my primary care doctor to go over all of the results.  If she is willing to treat me, great.  If not, then I go to plan B.

Plan B came up unexpectedly on Monday night when my phone rang and one of the doctor offices from Richmond called.  I’m going in on the 18th!  I wasn’t expecting to get in so fast but after they got my labs and whatnot, I guess they figured I was really serious.

I’m cautiously optimistic that these turn of events mean that I’m going to get some treatment soon!

Armed and dangerous…with information!

I love the internet.  Not only am I finding great resources on thyroid advocacy forums, but I am also able to view test results now from LabCorp without being a slave to my doctor. Yay, interweb.

So my test results came back from all of the bloodwork on Saturday and I’ve had a few days to sift through it all.  I know you are all dying to know what I found.

The bad news is that EVERYTHING came back in the normal range.  The good news is that I know better than to lay down and take it like before.

First of all, it doesn’t look like I have the thyroid antibodies, so that is great news.  No Hashimotos or any other autoimmune diseases appeared to be present.

I ran a ton of thyroid tests, as I mentioned before.

I immediately checked my TSH levels.  Lab Corps range is .45 – 4.5.  Mine came back at 3.75.  Yes, it’s in the normal range.  But, as I found in my sleuthing, the American Association of Clinical Endocrinologists advised the public in 2003 that physicians should be using a smaller range and looking at .3 – 3.0 as a level of normalcy.  Anyone who scores above 3.0, according to the AACE should be treated for hypothyroidism. In fact, they recommend that a patient be treated until the levels fall between 1.0 – 2.0.

When I read this, my reaction was like this:

  1. Read the article
  2. Look at my test results
  3. Scour the internet for references to this article
  4. Look at my test results, double checking that I really am above a 3.0
  5. Get mad.

I have never been given my test results from any of the 6 endocrinologists that I’ve seen in the last ten years, but I remember many of them saying, “oh, you’re 3.whatever, so that’s the normal range.  You’re fine”.

No, obviously, I’m not fine.  I’m mad.

I’m mad that this has been going on for 10 years untreated.  That I’ve been suffering for a decade.  I’ve been thinking that I have a major problem with control over my diet and exercise because nothing ever works for me. I’m mad that I’m so tired all of the time that I often close my door, lay down on the floor, and sleep at lunch- even though I slept 7-9 hours the night before.

I’m mad that I’ve been above these recommended clinical ranges and 6 doctors have dismissed me, despite my insistence that something is WRONG.  They looked at me and said, I can see you are unhappy but then didn’t bother to do anything to help me.

I AM NOT A LAB VALUE ON A TEST REPORT.  I am a human being who knows what is normal and not normal for ME.

And now, I have my labs so I can fight.  I have documentation from a national organization saying I should be treated.

So what next?  I push forward.

I emailed my PCP yesterday and let her know that I received the results (probably before she did) and gave her the link to the AACE press release.  I asked her how she wanted to proceed.

Then, I called the three doctors I’m on the waitlist for and checked my status.  I also let each of them know that I have lab work so I would need a longer appointment.

I’m waiting to hear back from my PCP.  She told me that she was willing to treat me if it came back abnormal.  I guess I need to hear what she has to say after reading the AACE recommendations.

Even if she is willing to treat, I’m still going to meet with one of the specialists, just to get another opinion and ideas on some holistic treatment methods.

The moral of the story is this:  always trust your gut.  Even if you have to go to 12 doctors to be taken seriously.  Even if it takes you 10 years.

Because it’s worth it.  Getting those test results directly gave me a great amount of validation.

I’m not a crazy machine.  I don’t have to feel like a slob because I can’t lose weight or get in shape. My husband doesn’t have to live with my exhaustion hopefully for much longer.

This is where shit gets real, people.  I’m armed and dangerous now.