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.
Monday, May 20, 2013
Thursday, May 2, 2013
Unbelievable!
Okay... this has been upsetting me since I saw it last night and I can't take it anymore. My boyfriend was on Reddit and started to wonder if my sister uses the same username for every site she's on. Clearly she does as he found her as she was posting pictures of her cat and he looked to see where she usually posts out of curiosity. Then one post caught his eye and he got angry and showed it to me. Then I got upset, more like hurt since she's saying lies about my family. Also it proves she's just like our oldest brother.
All she ever talks about is herself, her fantasy-life of mistreatment, and her cat. I mean it's reddit and your account, I get it you should talk about yourself, but she talks about her family in many posts. But never me. Not to seem like I'm the center of the universe or anything, but I think that if your sister gets cancer you shouldn't act like she doesn't exist. Which she basically says a few times in posts after I was diagnosed that there is "no family" nearby. I LIVE 30 MINUTES AWAY! But around the time I was diagnosed with cancer and my family came down to visit, she told me that she posted on there about helpful donations for my health. After perusing her entire post history, I can safely say that she never did. On my surgery day she was not there, why? Because she had to help with a documentary that day. It was not job related or school related. It was for her ex-boyfriend. All she thinks about is herself and ways to make her facade look better to others.
This is what one of her posts read:
"I'm the youngest of five kids. Throughout my 22 years, I've watched my parents bend over backwards for my siblings. I was made to get a job at 16 and start providing for myself, while my 20 year old sister was financially cared for. I had to buy my own car, while my parents paid half for theirs... the list goes on. I would never expect my parents to buy me things like a car, or pay for my schooling, but it certainly rubbed me the wrong way when they did it so readily for my siblings.
All she ever talks about is herself, her fantasy-life of mistreatment, and her cat. I mean it's reddit and your account, I get it you should talk about yourself, but she talks about her family in many posts. But never me. Not to seem like I'm the center of the universe or anything, but I think that if your sister gets cancer you shouldn't act like she doesn't exist. Which she basically says a few times in posts after I was diagnosed that there is "no family" nearby. I LIVE 30 MINUTES AWAY! But around the time I was diagnosed with cancer and my family came down to visit, she told me that she posted on there about helpful donations for my health. After perusing her entire post history, I can safely say that she never did. On my surgery day she was not there, why? Because she had to help with a documentary that day. It was not job related or school related. It was for her ex-boyfriend. All she thinks about is herself and ways to make her facade look better to others.
This is what one of her posts read:
"I'm the youngest of five kids. Throughout my 22 years, I've watched my parents bend over backwards for my siblings. I was made to get a job at 16 and start providing for myself, while my 20 year old sister was financially cared for. I had to buy my own car, while my parents paid half for theirs... the list goes on. I would never expect my parents to buy me things like a car, or pay for my schooling, but it certainly rubbed me the wrong way when they did it so readily for my siblings.
It's caused some disagreements between my parents and I. I had to
move out when I was 19, but my 25 and 29 year old brother still live at
home. They're also completely financially supported by my parents.
During hard financial times, I asked my parents if they could lend me
some money until my next payday, and they said no because they needed to
buy groceries for my 25 year old (unemployed) sister.
It's hard to not see the favoritism in these kind of situations. It's hard not to wonder why your parents wouldn't go to the same lengths for you, and if they care about you the same way they do for their other children. You have to have a conversation with them about this. Do it as non-confrontational as possible. Don't make accusations right away, and use I-statements. Let them know what your perception is and ask what is theirs. I wish you luck, and I'm sorry this is an issue for you."
To note, some of these ages are way wrong as the brother that's 10 years older than her moved out of the house long before she was 19. Okay, first off only three of us have cars, my two younger sisters and my oldest brother. My parents helped my oldest brother with his first car and schooling because they were financially able to and they planned to help us others out when we came to college and car, but couldn't (My parents have now moved three times since then). My oldest brother also got cutoff due to buying expensive items like designer brand shirts and he was warned many times. It didn't take too long and they cut him off. The car situation was bad as my dad cosigned for it and when my brother didn't pay for the car, it forced my dad to pay for it.
My older brother who is 8 years older than my youngest sister didn't ask for much when he was younger. He never had a car or a job due to medical issues, but gets help from the government, so my parents don't provide for him. Well other than a roof over his head and driving him to places, which doesn't happen much.
For myself, again, no car and I had to pay for my cellphone as soon as I got one. Both of my sisters got free cell phones when they were in school and they were told if someone got a job, one of the phones goes to the working person. I started working and I got no phone, it took me a little over half a year to get a cell phone and I had to pay for it right away. I was bad with my money, so I was already cut off and I had to pay for my personal items and sometimes my special foods (stuff that no one else ate in the house) as well, so I'm not complaining (back then I did, but today I find it understanding). If you are a reader of my blog, you would know I started college last year and getting no help from my parents not even for my medical bills. Well take that back, my parents paid for my Phi Theta Kappa entrance fee as a gift. My parents can't afford helping me out and I know they want to, but I know they can't as well as they have too much on their plate already. I do thank them for being there for me and still there for me. I love them so much.
My younger sister, who is three years older than my youngest sister, had a job and was paying for her stuff. My parents plan was to pay for driving school for us kids when we were ready and also if we got a GM car my dad would help with the down payment since he had points with his company for GM cars. So my dad helped with a down payment on a car and my sister was paying for it. Then in May my sister, who was 21 at the time, went into the hospital for a month (we think it was a major breakdown now, but not sure) and we thought she was going to die. Due to health issues and not being able to work much, my dad has helped her pay bills and her car. Right now they are working on trying to get disability for her in hopes to relieve the financial stress on her and my parents. She's the only one my parents are currently supporting right now. The money for the bills and her car were not gifts, but IOUs that my sister will have to pay back.
My youngest sister had been baby'ed a lot over her lifetime. Both she and the other sister got the cell phones, got to pierce their ears while being under 18/still living at home, got my mom to buy them CDs every week (I wanted comics/manga [Japanese comics] and my mom never brought me one... and they were cheaper too), and among other things. My sister also had a lawsuit with a car insurance company and won a large among of money, which was used to pay for college and her car... she had also saved money from work, so my parents didn't need to help her when it came to this moment in her life. On top of that by that time my parents couldn't afford to help her. She was forced to get a job because she wanted to home school and my mom warned her that was going to happen. My sister made that choice, not my parents. Anytime she asked my parents for money for food or any kind of help, it usually turns out she needed it for a tattoo that she didn't need at that moment or most likely drugs (yes I know she's doing drugs... seen it at her place and she admits it too). Of course, after awhile people will say no to the borrowing if they know it's not for a needed thing. Though my parents did borrow money from her to help them get their current house, with the history of her blowing thousands of dollars away so fast, of course, my parents are afraid to give her money back so fast (well first off they don't really have the money to give anyways).
My parents may not be perfect, no one is, but to lie so much about not getting any kind of help is unbelievable. Be happy you had a place to call home, a bed to sleep in, a roof over your head, clothes on your person, and food on your plate, you ungrateful brat.
It's hard to not see the favoritism in these kind of situations. It's hard not to wonder why your parents wouldn't go to the same lengths for you, and if they care about you the same way they do for their other children. You have to have a conversation with them about this. Do it as non-confrontational as possible. Don't make accusations right away, and use I-statements. Let them know what your perception is and ask what is theirs. I wish you luck, and I'm sorry this is an issue for you."
To note, some of these ages are way wrong as the brother that's 10 years older than her moved out of the house long before she was 19. Okay, first off only three of us have cars, my two younger sisters and my oldest brother. My parents helped my oldest brother with his first car and schooling because they were financially able to and they planned to help us others out when we came to college and car, but couldn't (My parents have now moved three times since then). My oldest brother also got cutoff due to buying expensive items like designer brand shirts and he was warned many times. It didn't take too long and they cut him off. The car situation was bad as my dad cosigned for it and when my brother didn't pay for the car, it forced my dad to pay for it.
My older brother who is 8 years older than my youngest sister didn't ask for much when he was younger. He never had a car or a job due to medical issues, but gets help from the government, so my parents don't provide for him. Well other than a roof over his head and driving him to places, which doesn't happen much.
For myself, again, no car and I had to pay for my cellphone as soon as I got one. Both of my sisters got free cell phones when they were in school and they were told if someone got a job, one of the phones goes to the working person. I started working and I got no phone, it took me a little over half a year to get a cell phone and I had to pay for it right away. I was bad with my money, so I was already cut off and I had to pay for my personal items and sometimes my special foods (stuff that no one else ate in the house) as well, so I'm not complaining (back then I did, but today I find it understanding). If you are a reader of my blog, you would know I started college last year and getting no help from my parents not even for my medical bills. Well take that back, my parents paid for my Phi Theta Kappa entrance fee as a gift. My parents can't afford helping me out and I know they want to, but I know they can't as well as they have too much on their plate already. I do thank them for being there for me and still there for me. I love them so much.
My younger sister, who is three years older than my youngest sister, had a job and was paying for her stuff. My parents plan was to pay for driving school for us kids when we were ready and also if we got a GM car my dad would help with the down payment since he had points with his company for GM cars. So my dad helped with a down payment on a car and my sister was paying for it. Then in May my sister, who was 21 at the time, went into the hospital for a month (we think it was a major breakdown now, but not sure) and we thought she was going to die. Due to health issues and not being able to work much, my dad has helped her pay bills and her car. Right now they are working on trying to get disability for her in hopes to relieve the financial stress on her and my parents. She's the only one my parents are currently supporting right now. The money for the bills and her car were not gifts, but IOUs that my sister will have to pay back.
My youngest sister had been baby'ed a lot over her lifetime. Both she and the other sister got the cell phones, got to pierce their ears while being under 18/still living at home, got my mom to buy them CDs every week (I wanted comics/manga [Japanese comics] and my mom never brought me one... and they were cheaper too), and among other things. My sister also had a lawsuit with a car insurance company and won a large among of money, which was used to pay for college and her car... she had also saved money from work, so my parents didn't need to help her when it came to this moment in her life. On top of that by that time my parents couldn't afford to help her. She was forced to get a job because she wanted to home school and my mom warned her that was going to happen. My sister made that choice, not my parents. Anytime she asked my parents for money for food or any kind of help, it usually turns out she needed it for a tattoo that she didn't need at that moment or most likely drugs (yes I know she's doing drugs... seen it at her place and she admits it too). Of course, after awhile people will say no to the borrowing if they know it's not for a needed thing. Though my parents did borrow money from her to help them get their current house, with the history of her blowing thousands of dollars away so fast, of course, my parents are afraid to give her money back so fast (well first off they don't really have the money to give anyways).
My parents may not be perfect, no one is, but to lie so much about not getting any kind of help is unbelievable. Be happy you had a place to call home, a bed to sleep in, a roof over your head, clothes on your person, and food on your plate, you ungrateful brat.
Friday, April 26, 2013
Bad News/Good News
I know it's been awhile again that I posted on here since I've been busy with school and trying to figure out my job stuff. I had left my one job due to lack of hours and also lack of understanding my health issues by some of my supervisors, which caused my anxiety to get bad. I went back to a job I had one and a half years ago and loved working there, I was so excited to work there again. I guess, I never realized the job was actually harder than I thought. For those that don't know, it's a sales associate job at a department store, doesn't seem hard I know, but it is on the body. I was crying after being up on my feet for two to three hours with no break (you get a break if you work five hours) and my arms were hurting from lifting so many clothes. I started this job at the beginning of the month and it makes me so depressed that I had to leave so soon. Sadly since I had to end up job without a two weeks notice (there was no way I could handle it for another two weeks, especially with the eight hour shifts), they will not hire me based on company policy even though it's because of a health issue. I actually broke down crying when I was telling them, but it's out of HR's hand because it's the company policy.
The plan is to go jobless for awhile until my health gets better, which hopefully will once I see my new Endocrinologist and I start (hopefully again) getting better treatment. I am pretty sure that my adrenal is one of the reasons my reverse T3 is so high, so that needs to be taken care of so the medication can work for me.
The 24th of April was my 28th birthday, which was pretty depressing for me not only because I was working, but because where I am in life. I'm not married though I do have a boyfriend, I don't have kids nor one on the way, I don't have a degree as I just started college last year, I don't have a car or a place of my own, and so on... and yet I'm close to being 30 years old. On top of that I don't know if I still have cancer, I still don't have my old life back or close to and I continue to keep getting worse.
Okay... some good news, so far I am still make straight A's in school and running for Publicity Director for Phi Theta Kappa. When I filled out FAFSA I said I wanted to apply for work-study, so hopefully I can get that in hopes to be able to pay my bills. I have my school reunion on June 1st in Austin, TX that I plan to go to and at the same time visit friends and family. I'm going to try posting on here more often now that I am jobless, but also work on comic and game idea outlining and scripting, so I can get closer to actually start working on the final product.
That is all for now...
The plan is to go jobless for awhile until my health gets better, which hopefully will once I see my new Endocrinologist and I start (hopefully again) getting better treatment. I am pretty sure that my adrenal is one of the reasons my reverse T3 is so high, so that needs to be taken care of so the medication can work for me.
The 24th of April was my 28th birthday, which was pretty depressing for me not only because I was working, but because where I am in life. I'm not married though I do have a boyfriend, I don't have kids nor one on the way, I don't have a degree as I just started college last year, I don't have a car or a place of my own, and so on... and yet I'm close to being 30 years old. On top of that I don't know if I still have cancer, I still don't have my old life back or close to and I continue to keep getting worse.
Okay... some good news, so far I am still make straight A's in school and running for Publicity Director for Phi Theta Kappa. When I filled out FAFSA I said I wanted to apply for work-study, so hopefully I can get that in hopes to be able to pay my bills. I have my school reunion on June 1st in Austin, TX that I plan to go to and at the same time visit friends and family. I'm going to try posting on here more often now that I am jobless, but also work on comic and game idea outlining and scripting, so I can get closer to actually start working on the final product.
That is all for now...
Saturday, March 9, 2013
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.
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.
Friday, February 22, 2013
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/
Tuesday, February 19, 2013
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.
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.
Sunday, February 3, 2013
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.
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.
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