Busy, busy, busy... oi

A lot has been going on and I'm almost at the point of going insane... I'm trying hard to keep myself together.  On the 14th of May I went to my second endocrinologist, who didn't seem to be able to read my pathology report or knows anything about variants.  I had to tell her that they narrow my cancer down to four aggressive types, which she was like "well it says you have papillary cancer"... to which I said "Yes, the main is papillary cancer, but there are variants," which that was pretty much ignored.  She also didn't understand the blood work orders and my medication adjustments.  We had to explain the labs were done first and then the medication was adjusted based on those orders.  She claimed based on my lab reports that it seems like the 125 mcg of Levothyroxine was close to the dosage I needed.  I told her I didn't understand was my labs showed my TSH was high and I felt like crap just like I did on 175 mcg and 150 mcg.

I tried to get her to order adrenal saliva test and my full iron panel, but she refused just like the other one.  She claimed that my issues might not be thyroid related, but still refuses to see if I have an adrenal problem (also in the endocrine system).  These results could explain why my medication isn't working along with other symptoms I have been experiencing.  I also explain to her that my family seems to have a lot of endocrine problems: kidneys, stomach, and thyroid, so it's reasonable to think I am having another endocrine problem that could be messing things up.  Still got no for the tests.  The thing with ordering tests is... I can order them online (really expensive though), but I have insurance and doctors that can order them for me and I am still paying for them... so what's the big deal?

She then tried to get me back on synthetic medication, which I got angry as she wouldn't do anything I wanted and she expects me to throw my body back into that crap?!  She claims that the natural thyroid medication is bad for the heart and bones (actually natural thyroid medication is good for the bones, it has improved people's bone density).  I felt like saying to her that sometimes heart medication can be bad for the heart as well, but are people going to stop taking needed heart medication because others had issues?  No, they aren't since what works for others, doesn't always work for other people.  This is why they are a lot of companies making their own version of the medications as there are many ways to make them with different fillers and such as not everyone can absorb the same medication the same way.

She also claimed that my natural thyroid medication is too high (basing this on the results from my last Levothyroxine test that was done in MARCH), but I agree, thinking it was too big of a jump as I was basing it on the UPS numbers.  I was willing to lower my dosage, but not willing to change my medication.  She was not happy with this and ordered the normal tests.  Well I got some of my lab results today (TSH, Free T4, and Free T3)... My TSH increased (which is good since it was .020 before), but my FT4 and FT3 decreased, so I might need to increase my medication and not decrease it.  Now I am wondering if it will be easy now to order my Reverse T3, adrenal saliva test, and full iron panel... probably not.

Then on Tuesday I have to go to Ohio's Department of Human Services for a two hour interview thing about work stuff.  I'm just hoping my last work place sent them the paper that said I quit due to medical issues... I hope so, if not I might be screwed big time.  Tuesday is also the funeral of my fiance's grandmother and I couldn't reschedule the interview since there was no information on the paper about it.  On top of that, we are leaving this Friday for 2.5 weeks, so yeah... had to reschedule it.

Then starting today I am in Summer classes... yay, lol.  Luckily the full semester I only have two classes, but the second half there is a third added to it.  I should do fine this semester as it doesn't seem hard, just a lot of work in the one class.  Oh!  Spring semester I got a 4.0, which makes me be on the Dean's List a second time and making my overall GPA to be a 3.7, yay!

When I come back from my trip, I'm going to talk to one of the advisers from the school I went to transfer to talk about my Bachelor degree stuff.  I am thinking of skipping my Associates and go straight into my Bachelor's to save some time and some money.  Just have to see what I find out from the school before I make that decision.

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/

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!

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!

Awareness and Research

Currently I've been dealing with a lot: catching up in school, more health issues, waiting to go back to work, Thanksgiving, Christmas, and medication reactions.  It's hasn't been fun for the most part, but the fiance does make it nice at times.  This matters a lot to me and probably other cancer patients, to have someone there by their side through all of this.  Some people are lucky and have family, friends and/or an SO near them to help them out, but if you have a friend that has cancer (or any diseases for that matter) that seems to be dealing with it on their own, be there for them in any way, you can even at least be a shoulder to cry on.  It will help them a lot.

Anyways, I've been dealing with feeling weak in my muscles (mainly my legs), I walk slower now, I can't deal with the cold, my hip hurts, I'm having chest pains, head pains, right side of my neck is swollen, I'm having issues breathing, overly emotional at times because of medication, and anxiety.  I had an x-ray on my hip due to the pain and issues with laying down at times, but the x-ray came back that nothing was wrong.  I also did blood tests to see if I'm anemic still and if I'm having issues with B12, which could explain a lot of the pains and muscle weakness and I'm waiting on those results.  If those come back normal then something needs to be done with my medication.  I already got adjusted from 125 to 175, but the problem with Synthroid is that it's only a T4 medication and if your body can't make T4 to T3 then you need to take something else on top of Synthroid or switch to something like Armour which is a T4/T3 combo.  I'm waiting to see my Endocrinologist next month to ask for blood tests on Free T4, Free T3, and Reverse T3 instead of the TSH test. This would help adjust your medications better and this would let your doctor see if your body is having issues with T4 converting into T3. 

Some people on the Facebook pages on Thyroid diseases and cancer that I read have said it's been hard to find doctors that will look into T3 issues or prescribe Armour to their patients due to these doctors being misinformed.  One person said they had to switch to five to six different doctors until someone listened to them that Synthroid didn't work for them and wanted to try Armour.  The main problem is there isn't a lot of research going on Thyroid diseases and issues or at least it doesn't seem as some doctors are just playing guessing games with the patients' diagnoses and medication, not all doctors, but what I've heard from others it has happened.  I've heard of people that never get back to close to being their normal self after cancer and this has been going on for 10 to 30 years for some of them. 

I think the reason there isn't as much research is because there is a "cure" for thyroid cancer and some of the other diseases and illnesses like hypothyroidism and hyperthyroidism.  Though with so many people still having issues and going years to doctors in hopes to one day feel normal at least for awhile... we need to continue this research and find a better solution.  Also with more people developing thyroid cancer, we need to figure out why it's on the rise... what has changed to cause this?  It can't be always genetics since it seems more people are becoming the first one in the family to get it like myself.  There needs to be also more awareness for this cancer and also the other diseases and illnesses that can come from the gland.

I have learned throughout all of this that I have to do my own research and look to other people that have already experienced this and have been for years to see what I need to do.  I guess, some people do this anyways, but I'm used to doctors knowing what they are talking about.  The research has helped me a lot with my family doctor and she listens to me when I request medication like a muscle relaxer for my neck or blood tests to see if my anemia has gotten worse or if I have an issue with B12.

To the people that never have checked their thyroid or their children's, if you see signs of hypothyroidism or hyperthyroidism, which there is a long list since the thyroid affects a lot of systems in your body... get your blood tested for Free T4, Free T3, Reverse T3, and TSH.  It might explain some issues that you have been having and nothing seems to make it better.  Also doesn't hurt to get your thyroid checked every once in awhile since Thyroid cancer doesn't always show signs and symptoms.

Oh and also... I posted a video on youtube: My Dealing with Thyroid Cancer