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.
Showing posts with label test. Show all posts
Showing posts with label test. Show all posts
Monday, May 20, 2013
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.
Monday, December 17, 2012
Continuing with Life
So I just finished my semester of college and quite proud of myself since I didn't allow my cancer to take my schooling away from me. It may have delayed me in turning in my school work on time, but my teachers were understanding thankfully. I got an A in English (a miracle for me), an A in Environmental Ethics, and a C in College Algebra (which I plan to retake in the future to get my GPA up). I already signed up for Spring semester classes even though I don't know if I still have cancer and need radioactive iodine treatment... I'm not going to allow this cancer to prevent me from doing everything that I want and need to do. Though right now it's preventing me to work more hours to due the current issues I'm still having.
I did get my blood work results in the mail, but it seems my iron and B12 are fine though my B12 is a little low in the normal range, so my doctor said it wouldn't hurt to take some B12 vitamins. Though my MCH, and Carbon Dioxide (total) are both low and I'm not sure what this means, but I'm going to show the results to my ENT and Endocrinologist and see what they say. I know the carbon dioxide might explain the joint pains and the weakness I have been having though it might be a sign of liver or kidney issues. I hope not, but it's a possibility.
I had to call off of work three times already this month and hope to not have to again anytime soon, but it's hard to go to work when you're unable to put weight on your legs without falling down. I have to talk to my doctors about this when I see them next month as that's the soonest I can see them. I'm hoping to ask my Endocrinologist to put me on Armour as I don't like how Synthroid makes me feel and its side effects.
Though other than dealing with the cancer and its affects on my life, I'm looking forward of the two weeks I have off from work to go see my family and friends in Texas. I will be able to celebrate a late Christmas with them and my fiance, so I'm really happy about that. My manager was nice enough to approve it for me and Justin brought our plane tickets to see my family. I'm also excited about winter break as Justin and I will be working on our comic stuff again once he's done with school this Thursday.
There isn't much else to say that's new in my life other than this though I would like to add that I hope this blog is helping someone else out there. The main reason for this blog is for me to vent and write out my experiences, but I still hope this is helping or at least spreading the word of thyroid illnesses and diseases... and the need to take care of this gland.
I did get my blood work results in the mail, but it seems my iron and B12 are fine though my B12 is a little low in the normal range, so my doctor said it wouldn't hurt to take some B12 vitamins. Though my MCH, and Carbon Dioxide (total) are both low and I'm not sure what this means, but I'm going to show the results to my ENT and Endocrinologist and see what they say. I know the carbon dioxide might explain the joint pains and the weakness I have been having though it might be a sign of liver or kidney issues. I hope not, but it's a possibility.
I had to call off of work three times already this month and hope to not have to again anytime soon, but it's hard to go to work when you're unable to put weight on your legs without falling down. I have to talk to my doctors about this when I see them next month as that's the soonest I can see them. I'm hoping to ask my Endocrinologist to put me on Armour as I don't like how Synthroid makes me feel and its side effects.
Though other than dealing with the cancer and its affects on my life, I'm looking forward of the two weeks I have off from work to go see my family and friends in Texas. I will be able to celebrate a late Christmas with them and my fiance, so I'm really happy about that. My manager was nice enough to approve it for me and Justin brought our plane tickets to see my family. I'm also excited about winter break as Justin and I will be working on our comic stuff again once he's done with school this Thursday.
There isn't much else to say that's new in my life other than this though I would like to add that I hope this blog is helping someone else out there. The main reason for this blog is for me to vent and write out my experiences, but I still hope this is helping or at least spreading the word of thyroid illnesses and diseases... and the need to take care of this gland.
Sunday, December 9, 2012
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
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
Saturday, November 24, 2012
Huey Lewis
After my first appointment with my ENT I went to have the barium swallow test on the sixth of September to see if there were any issues with my esophagus. I had to stand with a white, upright table with a white screen in front of me while drinking this thick milkshake that tasted chalky. It was not a fun experience at all. I had to even drink a more water down "milkshake" while laying down on my stomach. The last thing I had to do for the test was to swallow a barium pill, but for those that don't know me, I can't swallow pills. I've never been able to and I wish I could because liquid medicines taste horrible. Luckily the ones testing me didn't think I need to do the pill test since they couldn't see anything wrong.
By this point I should have gotten my test results, but no calls. I called the office, but was told that lab results will be backed up due to Labor Day weekend and also there was a conference in Washington D.C. Then the following week it was a game of phone tag with the office as they were trying to get a hold of me. I finally got them on the phone during one of my breaks at work and was told they would give me my results on Monday after my endoscopy test. I originally had an appointment with my ENT that day anyways.
A week and a half after my barium swallow test, I had to do the endoscopy to check further into my esophagus for muscle issues or any tissue problems within it. This was interesting and I'm not sure if it's in a good way or a bad way. Just thinking about it makes my one nostril hurt and the back of my throat taste like metal again. Pretty much I had to eat and drink different things with different textures and sizes to see the reaction of my muscles while there's a tube with a camera on the end of it that went through my nose and pushed down my throat. The one performing this was happy that Justin was there to help feed me. Some of the foods I was not pleased to see on the table: applesauce and fruit. Of course, my usual swallow issues never kicked in, but she said my muscles looked really good for my age and I didn't have acid reflux (my mother and my brother has this).
I was sent back into the waiting room to now wait for my ENT appointment that was 30 mins after the test, but was able to get in sooner. We sat in the room that we were taken into by his nurse and waited for my doctor to come in. I was trying to remain calm as I waited and also hoped that the test actually had results instead of having to do the biopsy again. Oh how I hope I did not to have to do that again. But then my doctor came into the room with some woman, I forgot now who she was, but I knew something was up. Most of what happened in the room is now foggy to me, but I do remember him telling me I have cancer and that I will need to have surgery.
Like I said in my other post I researched a lot on the cancers of thyroid, so I knew a good amount on it. I think that's why I wasn't crying, but also I think I was also still in shock over it. 27 years old and having to deal with cancer. Luckily with thyroid cancer there is a high survival rate, but still. Cancer. It was just... wow. Even right now I still can't believe it that I have cancer at such a "young" age. I remember looking at my boyfriend and laughed a little saying, "First one. First one in the family to get."
After that my doctor took me to his secretary to schedule my appointment for October 2nd (it was later moved back a day since another patient needed a 12 hour surgery), which was only a week and a half away. I couldn't believe it... I still can't believe it.
By this point I should have gotten my test results, but no calls. I called the office, but was told that lab results will be backed up due to Labor Day weekend and also there was a conference in Washington D.C. Then the following week it was a game of phone tag with the office as they were trying to get a hold of me. I finally got them on the phone during one of my breaks at work and was told they would give me my results on Monday after my endoscopy test. I originally had an appointment with my ENT that day anyways.
A week and a half after my barium swallow test, I had to do the endoscopy to check further into my esophagus for muscle issues or any tissue problems within it. This was interesting and I'm not sure if it's in a good way or a bad way. Just thinking about it makes my one nostril hurt and the back of my throat taste like metal again. Pretty much I had to eat and drink different things with different textures and sizes to see the reaction of my muscles while there's a tube with a camera on the end of it that went through my nose and pushed down my throat. The one performing this was happy that Justin was there to help feed me. Some of the foods I was not pleased to see on the table: applesauce and fruit. Of course, my usual swallow issues never kicked in, but she said my muscles looked really good for my age and I didn't have acid reflux (my mother and my brother has this).
I was sent back into the waiting room to now wait for my ENT appointment that was 30 mins after the test, but was able to get in sooner. We sat in the room that we were taken into by his nurse and waited for my doctor to come in. I was trying to remain calm as I waited and also hoped that the test actually had results instead of having to do the biopsy again. Oh how I hope I did not to have to do that again. But then my doctor came into the room with some woman, I forgot now who she was, but I knew something was up. Most of what happened in the room is now foggy to me, but I do remember him telling me I have cancer and that I will need to have surgery.
Like I said in my other post I researched a lot on the cancers of thyroid, so I knew a good amount on it. I think that's why I wasn't crying, but also I think I was also still in shock over it. 27 years old and having to deal with cancer. Luckily with thyroid cancer there is a high survival rate, but still. Cancer. It was just... wow. Even right now I still can't believe it that I have cancer at such a "young" age. I remember looking at my boyfriend and laughed a little saying, "First one. First one in the family to get."
After that my doctor took me to his secretary to schedule my appointment for October 2nd (it was later moved back a day since another patient needed a 12 hour surgery), which was only a week and a half away. I couldn't believe it... I still can't believe it.
Thursday, November 22, 2012
The First Appointment
After getting my results from the ultrasound, my doctor told me to find myself an ENT (Ears, Nose, and Throat) doctor also known as Otolaryngology to find out what the next stop was, though I would soon find out that would take awhile. Originally my family doctor told me to go to one ENT group from the area, but I had gone to them a year prior, but was not impressed by them. So I went to search for a new one and I never knew how hard it would be to find a decent specialist in my area. I also learned it would be hard to get in fast until now.
I spent at least two full days searching online for an ENT nearby that had good reviews. I didn't want to find another doctor that didn't listen to me and told me nothing was wrong (I had this happen to me many times including a time when I had a cyst the size of a softball in my back). I called UC Hospital for an appointment with one of their ENTs, but sadly my first choice would have been a two month wait. I told the one over the phone I couldn't wait since I was having issues breathing, swallowing, four nodules, and a slightly enlarged thyroid. Luckily I was able to get an appointment with my second choice three weeks later on August 27th.
For three weeks I kept researching online what could be wrong with me... I have an aunt with Hashimoto's and we thought maybe I had that, so I kept cross referencing with her symptoms and mine as well as what I found on the internet. I don't know why, but I had a feeling to look into Thyroid Cancer and their symptoms, it just kept drawing me in. My family and my boyfriend all told me that it's probably not that and not to worry about it too much. Though eventually my mom and I agreed it wouldn't hurt to know to just prepare myself. I didn't wanna go dramatic if my doctor told me the news and I could think straight to ask him any questions I had.
The first day I went to see my doctor I was surprised how young he was, probably a few years older than me. He asked what was going on and I told him, I also had the ultrasound report with me. Of course, he asked if there were any thyroid issues in the family and I told him about my aunt. Then he asked about cancer of the gland and the answer was no, but I did warn him that anyone that cancer in my family are the first ones of that type. He did a fine-needle biopsy on the largest nodule stabbing my neck four times, the last two being the worse. He also wanted to run blood tests on me to see what my levels were like and then do a barium swallow test and an endoscopy because of my swallowing issue. I've been having the issue with the swallowing most of my life, so he thought this could be something different from the nodules and the breathing issue.
Now began the waiting game and the testing phase of this whole thing...
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