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 blood. Show all posts
Showing posts with label blood. 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.
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.
Sunday, January 6, 2013
Eventful?
This past week and this weekend has had it's up and downs... understandably, I believe. This coming Monday (tomorrow) is the day I find out if I still have cancer and then the following Wednesday is the day I learn if I need to have Radioactive Iodine treatment (RAI). To find this out, I had to do a blood test in November, which is what we will base all of my future blood work to and a blood test in December. The two will be compared and see if my numbers are decreasing or increasing. Decreasing is good in this case as my body shouldn't be seeing any thyroid cells and my TSH was high (hypothyroid), so that needs to lower, too.
The other reason for my Monday appointment was to adjust my medication (if needed) and the last time he also based this on how I felt. Well Wednesday morning one of his nurses called to tell me they were lowering it, okay... I don't feel better and I feel the same as I did on the 125 (was on 175... now on 150)... so why is this happening? The hospital my ENT works at allows patients to get online accounts to see their results in their account... he hasn't approved anything to be placed on there, not even my TSH results. Of course, I'm sitting here wondering 'Do I still have cancer?' 'Has it spread?' and then I tell myself everything will be fine... it's probably nothing. I try to not over think it... but at times I can't, which is driving me insane!
Other than that, later today I'm doing an webcam interview with some students that are doing a report on cancer. They posted their request on reddit and I replied saying I was up for it. I did it because it's a cancer that many people don't know about, which is bad since it seems like more and more people are getting it recently. So this will be interesting for me to do since I don't normally like talking on the phone with people I don't know (I used to not mind... but yeah) and be put on the spot.
Then tomorrow I am starting my spring semester of college and taking four classes this time. I can't wait! I'm so excited (odd, I know)! I'm taking my English 2, an anthropology class, a computer class, and foundation of business, so it should be easy-ish this semester. My goal is deal's list again!
The other reason for my Monday appointment was to adjust my medication (if needed) and the last time he also based this on how I felt. Well Wednesday morning one of his nurses called to tell me they were lowering it, okay... I don't feel better and I feel the same as I did on the 125 (was on 175... now on 150)... so why is this happening? The hospital my ENT works at allows patients to get online accounts to see their results in their account... he hasn't approved anything to be placed on there, not even my TSH results. Of course, I'm sitting here wondering 'Do I still have cancer?' 'Has it spread?' and then I tell myself everything will be fine... it's probably nothing. I try to not over think it... but at times I can't, which is driving me insane!
Other than that, later today I'm doing an webcam interview with some students that are doing a report on cancer. They posted their request on reddit and I replied saying I was up for it. I did it because it's a cancer that many people don't know about, which is bad since it seems like more and more people are getting it recently. So this will be interesting for me to do since I don't normally like talking on the phone with people I don't know (I used to not mind... but yeah) and be put on the spot.
Then tomorrow I am starting my spring semester of college and taking four classes this time. I can't wait! I'm so excited (odd, I know)! I'm taking my English 2, an anthropology class, a computer class, and foundation of business, so it should be easy-ish this semester. My goal is deal's list again!
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.
Monday, December 3, 2012
Surgery Day
The morning of my surgery we were supposed to leave at 6:00am, but left 15 minutes late. We still should have gotten to the hospital in time, but there was an accident on the highway. We eventually got to the hospital and then got lost in the building and had to ask for directions to where I needed to go. I finally got to the area I needed to fill out paperwork and that's when my parents got there. After that I went to, if I remember correctly, One Day Surgery area, and got my waiting room and my gown.
Most of the day is now hazy because of the drugs, stress, and nervousness. I remember them taking my blood and giving me stuff through an IV. Justin held my hand throughout all of that. The next thing I remember is being pushed down a hallway to my surgery for a minute and then falling back to sleep and then waking up for a few minutes when they pushed my bed into the surgical room.
My surgery was three hours long and after it I woke up from what felt like someone tugging on the nose oxygen tube around my ears. Since my throat was so dry I asked for something to drink, but the only thing I could have at the time was ice cubes. I was so out of it that my boyfriend feed me the ice cubes with a spoon and from what my family told me I was being demanding on the sizes of the cubes. I vaguely remember people telling me to go back to sleep if I'm so tired, but I kept saying I wanted to stay up and talk to everyone. I guess, I'm very stubborn when I still have the effects of anesthesia.
They told my parents and boyfriend to go to my overnight room and they'll bring me upstairs. It seemed they forgot about me since it took them hours to get someone to take me to my room. Eventually they got me to my room and I was met with my parents and Justin. His parents were in the waiting room as only so many people can stay in the room. It was weird sitting up in a bed for me, especially with this HUGE wrapping around my neck and a tube with a plastic bag attached to it coming out from underneath the wrapping that was collecting blood and stuff from inside in my neck. I had to sleepover night with this thing, which was weird.
I talked to everyone and then they left around 9:00pm as visiting hours were over. Most of the night was fine for me as my roommate was nice and quiet. It was funny since the nurses kept coming in for her since they needed to move her, so they were getting all prepared for it... the roommate was all concern about them waking me up. The one nurse said she was sorry for waking me up and I told her it was okay. At some point they moved her to her new room on a different floor and I was alone for like an hour or two. I took this time to call my mom and Justin and figure out what time everyone was coming.
The woman in the room next to me would not stop yelling and causing problems... walking in the hall making noise, not caring if she's waking up other patients. In the morning Justin told me that she was doing that a lot while he was visiting me. She just would not shut up and kept going on and on about what her doctor said this and that,who did not work at that hospital and was not seeing what the doctors and interns where seeing.
Anyways, in the morning some interns came in to take the huge wrapping off of my neck, it seemed the one was showing some of them how to go about it, and the one unwrapping it seemed happy that I had short hair. I purposely got my hair cut for my surgery since I didn't want my hair get stuck in stitches. They also had to take the tubing out, which oddly didn't hurt, but it felt so weird. It turned out they super glued my neck closed instead of using stitches.
Justin came to the hospital first and was able to order my breakfast since it was still hard for me to talk. My nurse came in and told us they will call for someone to get me a wheelchair, so I can leave. Shortly after that my mom came to the room, but my dad was on the phone interviewing someone for a job, which had been scheduled in advance, so he got stuck with it. My parents had gotten me a candle from Bath and Body Works that was scent specially for stress relief and then a nice, fake bamboo plant. We waited and waited for a wheelchair for about an hour to two, but no one came with one. My dad was leaving that day to go back to Texas, which meant he had to drop my mom off at my sister's and then get to the airport, so they had to leave.
Eventually the main nurse that was dealing with me walked passed my room and noticed I was still there, she seemed upset I was still there too. She said she will ask again for someone to get me a wheelchair and help me out, but a nurse behind her said she could do it since I had been waiting for so long. The nurse was nice enough to push me to the parking garage, but not in the garage... I'm not sure if this is normal or not, oh well. Justin was able to help me walk into the garage and to the car, it wasn't that hard or at least I didn't think so.
I thought maybe the hard part was over with and that now with my new medication it would get me back to normal, but now I'm noticing this is only the beginning.
Most of the day is now hazy because of the drugs, stress, and nervousness. I remember them taking my blood and giving me stuff through an IV. Justin held my hand throughout all of that. The next thing I remember is being pushed down a hallway to my surgery for a minute and then falling back to sleep and then waking up for a few minutes when they pushed my bed into the surgical room.
My surgery was three hours long and after it I woke up from what felt like someone tugging on the nose oxygen tube around my ears. Since my throat was so dry I asked for something to drink, but the only thing I could have at the time was ice cubes. I was so out of it that my boyfriend feed me the ice cubes with a spoon and from what my family told me I was being demanding on the sizes of the cubes. I vaguely remember people telling me to go back to sleep if I'm so tired, but I kept saying I wanted to stay up and talk to everyone. I guess, I'm very stubborn when I still have the effects of anesthesia.
They told my parents and boyfriend to go to my overnight room and they'll bring me upstairs. It seemed they forgot about me since it took them hours to get someone to take me to my room. Eventually they got me to my room and I was met with my parents and Justin. His parents were in the waiting room as only so many people can stay in the room. It was weird sitting up in a bed for me, especially with this HUGE wrapping around my neck and a tube with a plastic bag attached to it coming out from underneath the wrapping that was collecting blood and stuff from inside in my neck. I had to sleepover night with this thing, which was weird.
I talked to everyone and then they left around 9:00pm as visiting hours were over. Most of the night was fine for me as my roommate was nice and quiet. It was funny since the nurses kept coming in for her since they needed to move her, so they were getting all prepared for it... the roommate was all concern about them waking me up. The one nurse said she was sorry for waking me up and I told her it was okay. At some point they moved her to her new room on a different floor and I was alone for like an hour or two. I took this time to call my mom and Justin and figure out what time everyone was coming.
The woman in the room next to me would not stop yelling and causing problems... walking in the hall making noise, not caring if she's waking up other patients. In the morning Justin told me that she was doing that a lot while he was visiting me. She just would not shut up and kept going on and on about what her doctor said this and that,who did not work at that hospital and was not seeing what the doctors and interns where seeing.
Anyways, in the morning some interns came in to take the huge wrapping off of my neck, it seemed the one was showing some of them how to go about it, and the one unwrapping it seemed happy that I had short hair. I purposely got my hair cut for my surgery since I didn't want my hair get stuck in stitches. They also had to take the tubing out, which oddly didn't hurt, but it felt so weird. It turned out they super glued my neck closed instead of using stitches.
Justin came to the hospital first and was able to order my breakfast since it was still hard for me to talk. My nurse came in and told us they will call for someone to get me a wheelchair, so I can leave. Shortly after that my mom came to the room, but my dad was on the phone interviewing someone for a job, which had been scheduled in advance, so he got stuck with it. My parents had gotten me a candle from Bath and Body Works that was scent specially for stress relief and then a nice, fake bamboo plant. We waited and waited for a wheelchair for about an hour to two, but no one came with one. My dad was leaving that day to go back to Texas, which meant he had to drop my mom off at my sister's and then get to the airport, so they had to leave.
Eventually the main nurse that was dealing with me walked passed my room and noticed I was still there, she seemed upset I was still there too. She said she will ask again for someone to get me a wheelchair and help me out, but a nurse behind her said she could do it since I had been waiting for so long. The nurse was nice enough to push me to the parking garage, but not in the garage... I'm not sure if this is normal or not, oh well. Justin was able to help me walk into the garage and to the car, it wasn't that hard or at least I didn't think so.
I thought maybe the hard part was over with and that now with my new medication it would get me back to normal, but now I'm noticing this is only the beginning.
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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