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.

Learning to Care: How We Made It Through Cancer

So... I said I was going to do this on Thursday, but I was asleep most of the day and then had an appointment.  Sorry!  I'm going to make this a Friday event thing on the blog now.  If you have a story to share just email me.

This story is from Cameron about his wife's and his story on their struggle with life and cancer.  I think it's a story that needs to be shared.

On November 21st, 2005, my wife and I started a journey that would prove to be one of the most difficult challenges we’d ever face. This is the day that my wife was diagnosed with cancer, malignant pleural mesothelioma. It was also the moment in my life when I was no longer just a husband. I became a caregiver for someone who had cancer. I wasn't necessarily prepared for this kind of a job, but I did everything that I could to be there for my wife. It came at a strange time in our lives. We were just starting to figure out how to parent a newborn, our first and only. Our daughter Lily was born just three months before my wife's diagnosis.

I started my job as a caregiver the moment that my wife found out she had cancer. I was with her in the doctor's office, and the look on her face sent me into a panic. I didn't know what we were going to do as the doctor talked about treatment options. There were three different places that we could go, one of which was a specialist named Dr. David Sugarbaker in Boston. My wife was too shocked and paralyzed by fear to consider any of these options, and I knew that I had to make a decision for my family. I turned to the doctor and said, “Get us to Boston!”  Soon after, my wife would begin treatment there, and there would be a lot of questions about how we were going to survive as a family.

The next few months were chaotic for my family. I was still working or at least, trying to work. I had so much stress from the bills, taking care of Lily while also taking care of my wife that I wasn't really sure how I got through those first few months. I wasn't at my best all the time, and despite my best efforts to stay positive I often imagined the worst case scenario, my wife passing away and leaving me a broke, widowed single father with a daughter who would never really know her mother. These were the darkest of days, and more than once I broke down crying under the pressure.  However, despite having these weak moments I never let Heather see my fears.  I knew she needed me to be strong for her.

My wife's family is extremely caring. They came through for us at a time when we needed them most. Not only did they provide financial support for us during a really hard time but they helped take care of Lily, and offered kind words of encouragement to help us get through the rough times.

If you are a caregiver in a similar situation, take these lessons from someone who has been there before.  Don’t’ be afraid or ashamed to ask for help.  Allow yourself to have bad days, these are inevitable and even necessary at times.  Use every resource available to you, and above all else never, ever give up hope for a better tomorrow.

After months of grueling mesothelioma treatment, Heather came out the other side cancer-free, and has remained so for nearly seven years.  We hope that by sharing our experiences, we can help inspire all those currently in their own cancer battles today. 

Cameron has a blog of his own that if any of you care to read more about what his and his family have been dealing with and continue to deal with, here's the link: http://www.mesothelioma.com/blog/authors/cameron/

New Thursday Idea

So... I'm doing something new to my blog , which came to me when I was contacted about posting a story about someone else's struggle as a caregiver to a cancer patient, who happened to be their wife.  Some people have blogs and/or awareness website, while others don't have the time or ability to keep up with a blog or a website, and no matter which cancer, disease, or disorder they or someone they know has, it needs awareness.  Each person has their own struggle story and have different ways to handle and grow from it.  In my way to help others, every Thursday (well if I get a story that week) I will post a blog entry on here of other people's stories about their struggles, hope, sorrow, pains, anything they want to share.  It doesn't have to be from a thyroid cancer patient either, but if you are one, you are welcome to share your story as there are no two thyroid cancer stories that are the same.

The first story will be posted tomorrow as soon as I wake up... so it might be around 5pm (eastern time) as my sleep schedule is messed up.  

Rant

So it's been a month since I last posted in my blog and sorry about that.  On January 7th, I started up my spring semester and this time I think I over did it with my classes as I have four classes with each having three credit hours.  My classes for this semester are Cultural Anthropology, Foundation of Business, English 2, and Computer Concepts and Applications.  Lately I haven't had much me time, especially since last week and this week I'm visiting family while I have a lot of homework.  I should be reading right now, but figured I let people know that read this that I am still here and alive. 

So... what's been going on with my health lately?  Last month I went to see my Endocrinologist for the first time and also went to my ENT to see my results from my blood work.  My TSH was at .026, so my ENT lowered my synthroid to 150 mcg and the chest pains have lessen, but I'm still having breathing issues and I can't take deep breaths without it hurting.  My Thyroglobulin went from .4 in November to .5 in December, which isn't a huge worry since sometimes they will miss thyroid tissues that try to rebuild and also I swear I have a thyroglossal duct cyst under my chin, which might be making the numbers go up.  I got a copy of my pathology report from my surgery and turns out they don't know exactly what kind of cancer I had, but narrowed it down to four rare and uncommon types with one of them being Tall-cell thyroid cancer.  Tall-cell doesn't always react to Radioactive Iodine (RAI) treatment, which isn't good, of course, but because there's a chance of it my Endo wants me to have RAI (though she kept saying my numbers are good).  I was told I didn't need to worry about my thyroglobulin numbers until they hit 1 or 2, so I'm not doing RAI until that happens.

Oh... and one thing that pissed me off about my Endo... She was talking about doing TSH and Free T4 tests on me and I asked her about Free T3 and Reverse T3 testing.  Her answer to T3 was that cancer patients don't need T3.  WTF!?  I had to explain to her that 125, 175, and 150 of the synthroid were doing nothing for me and they all felt the same.  She was surprised and gave me a small dosage, 5 mcg, of Cytomel, which I'm supposed to take once a day, and still wouldn't do a blood test.  The problem with T3 medication is that it only lasts you for four hours a day and then after that, you are just relying on your body.  I can feel the difference when my body has the T3 medication in it, especially at the two hour mark, but once it's gone I feel horrible.  I know the 5 mcg is too low for me since there isn't as big of a difference between how I'm now normally am and when I have the medication.  Also when I brought up T3 right away she said she wouldn't put me on Armour... so red flag there, so I'm going to be looking for a new Endo and when I talk to the front desk my first question is 'are they known for giving out Armour or do they refuse to give people that?'

I see my ENT in March, so I'll be asking him to do a Free T3 and Reverse T3 blood test and if he won't I will go to my PCP since I know she'll do it for me.  Oh speaking of blood tests... I've been trying to get my mom and sister to check out their thyroids since they have a lot of signs and issues that can be related to the thyroid.  Well my sister goes to see her doctor, but I guess, she saw the nurse practitioner instead... my sister asked about checking her thyroid and the NP just gave her a request for the lab to do TSH.  I got angry.  I think I was yelling about it outside of the building over it.  TSH alone does crap to see if there is a thyroid issue and that's basic common sense for doctors even my PCP and her nurse know that.  The results from TSH, Free T3, and Free T4 are compared to find out for sure what's wrong with a patient or if they need more testing done for like auto-immune diseases.  Justin understood why I was so angry, but my mom and sister were like 'If something shows up on the TSH test they will probably do more testing'... I kept trying to explain to them that's not how it works since TSH is NOT checking the thyroid, but the pituitary gland and its reactions to the how much of your hormones the thyroid is producing and even this test alone can show things are okay when they aren't.

Okay.. I think that's enough for today as I really, really need to do school work.

Eventful?

This past week and this weekend has had it's up and downs... understandably, I believe.  This coming Monday (tomorrow) is the day I find out if I still have cancer and then the following Wednesday is the day I learn if I need to have Radioactive Iodine treatment (RAI).  To find this out, I had to do a blood test in November, which is what we will base all of my future blood work to and a blood test in December.  The two will be compared and see if my numbers are decreasing or increasing.  Decreasing is good in this case as my body shouldn't be seeing any thyroid cells and my TSH was high (hypothyroid), so that needs to lower, too.

The other reason for my Monday appointment was to adjust my medication (if needed) and the last time he also based this on how I felt.  Well Wednesday morning one of his nurses called to tell me they were lowering it, okay... I don't feel better and I feel the same as I did on the 125 (was on 175... now on 150)... so why is this happening?  The hospital my ENT works at allows patients to get online accounts to see their results in their account... he hasn't approved anything to be placed on there, not even my TSH results.  Of course, I'm sitting here wondering 'Do I still have cancer?' 'Has it spread?' and then I tell myself everything will be fine... it's probably nothing.  I try to not over think it... but at times I can't, which is driving me insane!

Other than that, later today I'm doing an webcam interview with some students that are doing a report on cancer.  They posted their request on reddit and I replied saying I was up for it.  I did it because it's a cancer that many people don't know about, which is bad since it seems like more and more people are getting it recently.  So this will be interesting for me to do since I don't normally like talking on the phone with people I don't know (I used to not mind... but yeah) and be put on the spot.

Then tomorrow I am starting my spring semester of college and taking four classes this time.  I can't wait!  I'm so excited (odd, I know)!  I'm taking my English 2, an anthropology class, a computer class, and foundation of business, so it should be easy-ish this semester.  My goal is deal's list again!

Achievement: College

I started going to college this summer after not being in school for nine years and it would be at the end of that semester that I started having breathing issues.  It would be on the first day of my second semester that I had the biopsy of the main nodule on my thyroid.  I would be my fourth week of classes to find out I have cancer and my 6th week to get the gland removed.  I would become behind in two of my three classes and have to play catch up with them.  I struggled staying awake and having the energy to do my classwork, but I never gave up even though I felt like my world was falling apart.  I was determined to not allow my cancer to take my future away from me... my dreams and my passion.  I held on tight to those with both hands as I dealt with my cancer and as I continue to deal with it and the aftermath.  I was able to pass my classes while dealing with all of that, the physical, and emotional pains.

I checked my school email account yesterday to see if I got my semester GPA, my overall GPA, and my academic standing... and I was shocked to what I found.  I got on the Dean's List and mind you, I've never been on the honor roll when I was in school, but to get this while dealing with cancer... it just... wow.  To me, this has taught me that even though you are ill, you can still achieve things, great things, and don't let someone tell you otherwise.

My next goal is to get on the Dean's List again next semester!

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!