Do Your Research!!!!

Today I am STRESSING to do your own research on thyroid issues, diseases, and cancer since your doctor may not think of things like you might have Hashimoto's, hyperthyroid, and such.  Also if you go to a pcp/family doctor to get thyroid testing done since it's cheaper than going to an ENT or endocrinologist... you know which tests to ask for.  Due to the changes in late 2012, doctors now think that TSH only testing is the best route to go before testing other thyroid tests.  This is WRONG!  There are MANY people that have a TSH that shows up fine, but their Free T4 and Free T3 are not fine at all.  The TSH test is more of a pituitary gland test and the thyroid patient community is trying to get doctors to view it as such.  Now I'm not saying the test isn't important, it just shouldn't be done alone.  The TSH test shows how the pituitary gland is reacting to the thyroid's hormone production... TSH will be high if the pituitary thinks the thyroid isn't producing enough and yelling at it to make more (hypothyroid), but if it's low, the pituitary gland thinks there is too much (hyperthyroid).  The problem is... this is what the pituitary thinks and what if the pituitary gland is messed up or misreading the production level?  That's why TSH alone isn't good, you need Free T4 and Free T3 tests to be able to COMPARE all of the results.

You can ASK your doctor to do more tests and tell them why you are asking for them.  If you have a great doctor they will listen to you, but if they dismiss you and you really want those tests, demand it.  Remember the doctor is hired by you, their job is to make you healthier and treat you... You are paying them for this service.  Let's put it this way... You hire someone to take care of your plants and lawn... and you notice the plants are dying and the grass doesn't look good, you wouldn't just sit there and let it continue to happen, you would go and talk to the service provider and ask what's going on or fire them because they aren't treating it properly, they aren't keeping it healthy or treating it right.  They aren't providing the service that you hired them for, so why would you allow this to happen to your body when you can prevent it by the right treatments and tests that you want?

Also to state... if you take the TSH test separately and then find out after those results that they want to do the Free T3 and Free T4.  This will make you pay for the blood drawing fee twice, so to save some money might as well do it at the same time since you don't have to pay the extra fee for blood drawing.  Also make sure that the T3 and F4 say Free... not Total.  If it doesn't say Free on the paper order, they are asking for Total.  Total results are affected by proteins in your body, which can give an incorrect result.  It could make someone have normal results when it's either truly low or high and vice versa. 

To give you an example (of myself)... in January I saw my endocrinologist for the first time and had done a TON of research including why my three different dosages of synthroid weren't working and all felt the same.  Along with why was I still having hypothyroid symptoms while I was supposedly hyperthyroid and so on.  When she was going off what tests she wanted to do she didn't list anything about T3 even though I complained about still being weak, tired, and blah blah blah.  I asked about doing the Free T3 and Reverse T3 tests and right away she said no to Armour, which was odd since I never asked about it, and said cancer patients don't need T3.  This isn't true and I know this based on my research and talking to other thyroid cancer patients, so that was my red flag.  After I restated that all three dosage of synthroid all have felt the same, she gave me a very small dosage of T3 medication, but still refused to do the blood tests... which was my other red flag.  The problem is depending how much of your T4 is converting into T3 and how much is being absorbed factors into the T3 dosage, but to find this out Free T3 and Reverse T3 are important tests that need to be done and done together.  Your Reverse T3 and Free T3 have to be compared.  Luckily my PCP is nice and listens to me because she gave me these tests among others that I wanted.  It turns out my Reverse T3 is very high, but my T3 is in the normal range.  

What does this mean for me?  My body isn't absorbing T3 at all... it may be converting, but it's not absorbing.  Now my TSH is very low (.020) and my T4 is normal as well, so based on the TSH, T4, and T3, a doctor could say I'm hyperthyroid or normal, but with the results from Reverse T3, I'm hypothyroid.  The pituitary gland is probably reading the T4 levels I have been taking (synthroid) and not understanding that the T3 isn't being absorbed, which is why my ENT thinks I'm hyperthyroid.

If you have a family member that has a thyroid related auto-immune disease... I would ask for those tests as well since you never know.  Also if you already have an auto-immune disease (other than the thyroid ones) and have thyroid issues (or suspecting to have a thyroid issue), you might have a thyroid related auto-immune disease as well since it has been found that people with an auto-immune disease tend to or have a high chance of having multiple types.  Hashimoto's, one of the thyroid related auto-immune diseases, is usually viewed as a hypothyroid disease, but it can make you feel normal the one minute, hyperthyroid the next, and then hypothyroid.  It's random and it can be in any order.

For tests that you can take for thyroid issues:

TSH, Free T3, and Free T4 - These are your basic tests and I would never do TSH only.

Reverse T3 - If you have been taking T4 only medication and find that it's not helping... I would ask for Reverse T3 and Free T3 and see what's going on there.  Your body might not be converting or absorbing T3.

Thyroid peroxidase antibody (TPOAb) - This is present in both Hashimoto's (usually hypothyroid) and Graves (hyperthyroid) diseases.  I would do this if you think you have a thyroid auto-immune disease or have someone in the family that has one.  I had this done personally because my aunt has Hashimoto's.  TPOAb has been linked to miscarriages, premature deliveries, and reproductive difficulties.

Thyroglobulin antibody (TgAb) - This is a Hashimoto's test to see if you have it.

Thyroid stimulating hormone receptor antibody, Thyroid Stimulating Immunoglobulin (TRAb, TSHR Ab, TSI) - These are tests for Graves disease, again to see if you have it.

There are other tests you can take to help with the thyroid care, some of them are vitamin related tests like B12 and Iron.  There seems to be a connection with B12 and thyroid issues, some thyroid patients can't absorb B12 and have to take a shot for it.  There's a list of other thyroid important tests that are listed on Stop the Thyroid Madness and on other sites as well.

The main purpose of this post is to research... don't have the mindset of your doctor knows all because they have went to school and been in the field for blah blah blah years as doctors are human too and can overlook things.  Also sometimes doctors can place their bias opinions into play when it comes to your treatment and medication stuff.  This is an issue when it comes to natural thyroid medication like Armour... remember most hospitals and doctor offices are funded and supported by large pharmaceutical companies like Abbott Laboratories (creators of Synthroid).  Not all doctors, but a lot get incorrect information about natural thyroid medication and stick to the T4-only medication like Synthroid for their patients.  If your doctor keeps adjusting your medication and it's never seems to make you feel even a little bit better... your body might not even be absorbing the medication right.  If this is going on, changing to another brand can help since (another example) Synthroid and Levothyroxine are the same type of medication (synthetic thyroid), their fillers are different which can affect if the body absorbs it correctly.  Some people have good results with Synthroid, but bad results with Levo.  Sometimes a T4-only route might not be working for you as well... so there's that too.  If you tried synthetics and they don't work well for you, you might need to try natural thyroid medication (many think this works best, but may not be for everyone).

If you think you aren't getting the right treatments or not doing all of the proper testing... fight!  Don't just sit there!  Talk to your doctor and if they don't listen... find a new doctor or get a second opinion.  You can go to your family doctor/pcp for blood work to be done if your ENT or Endocrinologist won't... it's usually easier to do this anyways.  I'm sure you don't want to feel like crap for 10, 20, or even 50 years from now... I know I don't.

To me, thyroid related research is a class assignment for me... it's a lifetime assignment that I must do to be able to make sure I get healthier and have close to a normal life again.  I believe if I have not done my research and was not persistent on getting all of my blood work done that I will forever be stuck with feeling like crap for the rest of my life.  Well, maybe not, I might have found a doctor that would test for Reverse T3 (though that is rare by what I have heard) or my TSH, Free T4, and Free T3 will eventually reflect the hypothyroid status.  I now have hope that I will get better treatment and possibly be close to being my normal self again.  Though I still have to worry if my doctors will listen to this Reverse T3 issue or if they will they just ignore it.

I will stress this right now... do your research on thyroid specialist sites as I have found sites that are medical sites that don't specialize in thyroid stuff don't giving the WHOLE story on thyroid related issues.  You might want to check out thyroid disease and cancer groups on facebook to find some good sites on this subject.

Supposedly Normal

So... with the chest pains and breathing issues, I think I finally figured out what's wrong: pneumonia.  There's a likely chance that I got fluid in my lungs during my surgery and now months waiting to see if these pains and breathings will go away, it has now became an infection... so in other words, pneumonia.  I have the nausea, bowel issues, the fever, the weakness, the shaking (at times), breathing and swallowing issues, fast heart rate, and chest pains, especially when I breath in.  I was suppose to go to the hospital yesterday, but since Justin's final for school was yesterday, we had to wait until he was done... then his mom took the car to go to work herself.  I had to wait until today to go, so now I'm waiting for him to wake up... take a shower and then we can leave.

Well.. since I never got to finish this post when I originally started it... I'm just going to continue on from here.  I'm now back from the hospital (I went there around 1pm and left at 3:30pm on Thursday) and they found nothing wrong.  We did blood work and a CT scan and with those it showed I had no blood clot and no pneumonia, which I figured I had.  The only thing that did show up was that I had a very small area in the upper part of my left lung, but they said it shouldn't be what's causing my issues.  So what is?  I have to follow up with my family care doctor in four days (actually in five since in four days would be Christmas) and I have no clue what else we are going to do.  I'm at a lost.  I love how the paper they gave me when I was leaving said to get immediate care if I'm having shortness of breath and I'm already dealing with it.  I also wasn't too happy when they gave me the paper and let me go... I wasn't able to read it before I got released and the doctor didn't let me know this information either, for the next few days I'm suppose to avoid doing any physical activities that causes my chest pain to get worse.  I work at Sam's Club as a cashier!  Everything I do will cause it to be worse... I needed a real doctor's note to give to work to excuse me from being absent.

I already called off four days this month.... to note, I only can work two days a week right now, so I have been scheduled five days so far not counting this Saturday.  I can't miss anymore days, but if I go to work I'm afraid I will collapse at work from the chest pain and not being able to breath.  So I don't what to do and I feel like crying.  I went to bed around 9:30-ish and woke up at 4am with feeling hungry and having horrible chest pains, but since I was hungry I had to eat something so decided on some chips.  With opening up the bag, it brought tears to my eyes from the pain and then eating somehow made it worse and also made my stomach sick.  I haven't been able to eat much this week because I keep getting sick to my stomach and then my chest starts hurting too.

I want my life back!

Continuing with Life

So I just finished my semester of college and quite proud of myself since I didn't allow my cancer to take my schooling away from me.  It may have delayed me in turning in my school work on time, but my teachers were understanding thankfully.  I got an A in English (a miracle for me), an A in Environmental Ethics, and a C in College Algebra (which I plan to retake in the future to get my GPA up).  I already signed up for Spring semester classes even though I don't know if I still have cancer and need radioactive iodine treatment... I'm not going to allow this cancer to prevent me from doing everything that I want and need to do.  Though right now it's preventing me to work more hours to due the current issues I'm still having.

I did get my blood work results in the mail, but it seems my iron and B12 are fine though my B12 is a little low in the normal range, so my doctor said it wouldn't hurt to take some B12 vitamins.  Though my MCH, and Carbon Dioxide (total) are both low and I'm not sure what this means, but I'm going to show the results to my ENT and Endocrinologist and see what they say.  I know the carbon dioxide might explain the joint pains and the weakness I have been having though it might be a sign of liver or kidney issues.  I hope not, but it's a possibility.

I had to call off of work three times already this month and hope to not have to again anytime soon, but it's hard to go to work when you're unable to put weight on your legs without falling down.  I have to talk to my doctors about this when I see them next month as that's the soonest I can see them.  I'm hoping to ask my Endocrinologist to put me on Armour as I don't like how Synthroid makes me feel and its side effects.

Though other than dealing with the cancer and its affects on my life, I'm looking forward of the two weeks I have off from work to go see my family and friends in Texas.  I will be able to celebrate a late Christmas with them and my fiance, so I'm really happy about that.  My manager was nice enough to approve it for me and Justin brought our plane tickets to see my family.  I'm also excited about winter break as Justin and I will be working on our comic stuff again once he's done with school this Thursday.

There isn't much else to say that's new in my life other than this though I would like to add that I hope this blog is helping someone else out there.  The main reason for this blog is for me to vent and write out my experiences, but I still hope this is helping or at least spreading the word of thyroid illnesses and diseases... and the need to take care of this gland.

Surgery Day

The morning of my surgery we were supposed to leave at 6:00am, but left 15 minutes late.  We still should have gotten to the hospital in time, but there was an accident on the highway.  We eventually got to the hospital and then got lost in the building and had to ask for directions to where I needed to go.  I finally got to the area I needed to fill out paperwork and that's when my parents got there.  After that I went to, if I remember correctly, One Day Surgery area, and got my waiting room and my gown.

Most of the day is now hazy because of the drugs, stress, and nervousness.  I remember them taking my blood and giving me stuff through an IV.  Justin held my hand throughout all of that.  The next thing I remember is being pushed down a hallway to my surgery for a minute and then falling back to sleep and then waking up for a few minutes when they pushed my bed into the surgical room.

My surgery was three hours long and after it I woke up from what felt like someone tugging on the nose oxygen tube around my ears.  Since my throat was so dry I asked for something to drink, but the only thing I could have at the time was ice cubes.  I was so out of it that my boyfriend feed me the ice cubes with a spoon and from what my family told me I was being demanding on the sizes of the cubes.  I vaguely remember people telling me to go back to sleep if I'm so tired, but I kept saying I wanted to stay up and talk to everyone.  I guess, I'm very stubborn when I still have the effects of anesthesia.

They told my parents and boyfriend to go to my overnight room and they'll bring me upstairs.  It seemed they forgot about me since it took them hours to get someone to take me to my room.  Eventually they got me to my room and I was met with my parents and Justin.  His parents were in the waiting room as only so many people can stay in the room.  It was weird sitting up in a bed for me, especially with this HUGE wrapping around my neck and a tube with a plastic bag attached to it coming out from underneath the wrapping that was collecting blood and stuff from inside in my neck.  I had to sleepover night with this thing, which was weird.

I talked to everyone and then they left around 9:00pm as visiting hours were over.  Most of the night was fine for me as my roommate was nice and quiet.  It was  funny since the nurses kept coming in for her since they needed to move her, so they were getting all prepared for it... the roommate was all concern about them waking me up.  The one nurse said she was sorry for waking me up and I told her it was okay.  At some point they moved her to her new room on a different floor and I was alone for like an hour or two.  I took this time to call my mom and Justin and figure out what time everyone was coming. 

The woman in the room next to me would not stop yelling and causing problems... walking in the hall making noise, not caring if she's waking up other patients.  In the morning Justin told me that she was doing that a lot while he was visiting me.  She just would not shut up and kept going on and on about what her doctor said this and that,who did not work at that hospital and was not seeing what the doctors and interns where seeing.

Anyways, in the morning some interns came in to take the huge wrapping off of my neck, it seemed the one was showing some of them how to go about it, and the one unwrapping it seemed happy that I had short hair.  I purposely got my hair cut for my surgery since I didn't want my hair get stuck in stitches.  They also had to take the tubing out, which oddly didn't hurt, but it felt so weird.  It turned out they super glued my neck closed instead of using stitches.

Justin came to the hospital first and was able to order my breakfast since it was still hard for me to talk. My nurse came in and told us they will call for someone to get me a wheelchair, so I can leave.  Shortly after that my mom came to the room, but my dad was on the phone interviewing someone for a job, which had been scheduled in advance, so he got stuck with it.  My parents had gotten me a candle from Bath and Body Works that was scent specially for stress relief and then a nice, fake bamboo plant.  We waited and waited for a wheelchair for about an hour to two, but no one came with one.  My dad was leaving that day to go back to Texas, which meant he had to drop my mom off at my sister's and then get to the airport, so they had to leave.

Eventually the main nurse that was dealing with me walked passed my room and noticed I was still there, she seemed upset I was still there too.  She said she will ask again for someone to get me a wheelchair and help me out, but a nurse behind her said she could do it since I had been waiting for so long.  The nurse was nice enough to push me to the parking garage, but not in the garage... I'm not sure if this is normal or not, oh well.  Justin was able to help me walk into the garage and to the car, it wasn't that hard or at least I didn't think so.

I thought maybe the hard part was over with and that now with my new medication it would get me back to normal, but now I'm noticing this is only the beginning.