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.
Showing posts with label ENT. Show all posts
Showing posts with label ENT. Show all posts
Saturday, March 9, 2013
Do Your Research!!!!
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Sunday, February 3, 2013
Rant
So it's been a month since I last posted in my blog and sorry about that. On January 7th, I started up my spring semester and this time I think I over did it with my classes as I have four classes with each having three credit hours. My classes for this semester are Cultural Anthropology, Foundation of Business, English 2, and Computer Concepts and Applications. Lately I haven't had much me time, especially since last week and this week I'm visiting family while I have a lot of homework. I should be reading right now, but figured I let people know that read this that I am still here and alive.
So... what's been going on with my health lately? Last month I went to see my Endocrinologist for the first time and also went to my ENT to see my results from my blood work. My TSH was at .026, so my ENT lowered my synthroid to 150 mcg and the chest pains have lessen, but I'm still having breathing issues and I can't take deep breaths without it hurting. My Thyroglobulin went from .4 in November to .5 in December, which isn't a huge worry since sometimes they will miss thyroid tissues that try to rebuild and also I swear I have a thyroglossal duct cyst under my chin, which might be making the numbers go up. I got a copy of my pathology report from my surgery and turns out they don't know exactly what kind of cancer I had, but narrowed it down to four rare and uncommon types with one of them being Tall-cell thyroid cancer. Tall-cell doesn't always react to Radioactive Iodine (RAI) treatment, which isn't good, of course, but because there's a chance of it my Endo wants me to have RAI (though she kept saying my numbers are good). I was told I didn't need to worry about my thyroglobulin numbers until they hit 1 or 2, so I'm not doing RAI until that happens.
Oh... and one thing that pissed me off about my Endo... She was talking about doing TSH and Free T4 tests on me and I asked her about Free T3 and Reverse T3 testing. Her answer to T3 was that cancer patients don't need T3. WTF!? I had to explain to her that 125, 175, and 150 of the synthroid were doing nothing for me and they all felt the same. She was surprised and gave me a small dosage, 5 mcg, of Cytomel, which I'm supposed to take once a day, and still wouldn't do a blood test. The problem with T3 medication is that it only lasts you for four hours a day and then after that, you are just relying on your body. I can feel the difference when my body has the T3 medication in it, especially at the two hour mark, but once it's gone I feel horrible. I know the 5 mcg is too low for me since there isn't as big of a difference between how I'm now normally am and when I have the medication. Also when I brought up T3 right away she said she wouldn't put me on Armour... so red flag there, so I'm going to be looking for a new Endo and when I talk to the front desk my first question is 'are they known for giving out Armour or do they refuse to give people that?'
I see my ENT in March, so I'll be asking him to do a Free T3 and Reverse T3 blood test and if he won't I will go to my PCP since I know she'll do it for me. Oh speaking of blood tests... I've been trying to get my mom and sister to check out their thyroids since they have a lot of signs and issues that can be related to the thyroid. Well my sister goes to see her doctor, but I guess, she saw the nurse practitioner instead... my sister asked about checking her thyroid and the NP just gave her a request for the lab to do TSH. I got angry. I think I was yelling about it outside of the building over it. TSH alone does crap to see if there is a thyroid issue and that's basic common sense for doctors even my PCP and her nurse know that. The results from TSH, Free T3, and Free T4 are compared to find out for sure what's wrong with a patient or if they need more testing done for like auto-immune diseases. Justin understood why I was so angry, but my mom and sister were like 'If something shows up on the TSH test they will probably do more testing'... I kept trying to explain to them that's not how it works since TSH is NOT checking the thyroid, but the pituitary gland and its reactions to the how much of your hormones the thyroid is producing and even this test alone can show things are okay when they aren't.
Okay.. I think that's enough for today as I really, really need to do school work.
So... what's been going on with my health lately? Last month I went to see my Endocrinologist for the first time and also went to my ENT to see my results from my blood work. My TSH was at .026, so my ENT lowered my synthroid to 150 mcg and the chest pains have lessen, but I'm still having breathing issues and I can't take deep breaths without it hurting. My Thyroglobulin went from .4 in November to .5 in December, which isn't a huge worry since sometimes they will miss thyroid tissues that try to rebuild and also I swear I have a thyroglossal duct cyst under my chin, which might be making the numbers go up. I got a copy of my pathology report from my surgery and turns out they don't know exactly what kind of cancer I had, but narrowed it down to four rare and uncommon types with one of them being Tall-cell thyroid cancer. Tall-cell doesn't always react to Radioactive Iodine (RAI) treatment, which isn't good, of course, but because there's a chance of it my Endo wants me to have RAI (though she kept saying my numbers are good). I was told I didn't need to worry about my thyroglobulin numbers until they hit 1 or 2, so I'm not doing RAI until that happens.
Oh... and one thing that pissed me off about my Endo... She was talking about doing TSH and Free T4 tests on me and I asked her about Free T3 and Reverse T3 testing. Her answer to T3 was that cancer patients don't need T3. WTF!? I had to explain to her that 125, 175, and 150 of the synthroid were doing nothing for me and they all felt the same. She was surprised and gave me a small dosage, 5 mcg, of Cytomel, which I'm supposed to take once a day, and still wouldn't do a blood test. The problem with T3 medication is that it only lasts you for four hours a day and then after that, you are just relying on your body. I can feel the difference when my body has the T3 medication in it, especially at the two hour mark, but once it's gone I feel horrible. I know the 5 mcg is too low for me since there isn't as big of a difference between how I'm now normally am and when I have the medication. Also when I brought up T3 right away she said she wouldn't put me on Armour... so red flag there, so I'm going to be looking for a new Endo and when I talk to the front desk my first question is 'are they known for giving out Armour or do they refuse to give people that?'
I see my ENT in March, so I'll be asking him to do a Free T3 and Reverse T3 blood test and if he won't I will go to my PCP since I know she'll do it for me. Oh speaking of blood tests... I've been trying to get my mom and sister to check out their thyroids since they have a lot of signs and issues that can be related to the thyroid. Well my sister goes to see her doctor, but I guess, she saw the nurse practitioner instead... my sister asked about checking her thyroid and the NP just gave her a request for the lab to do TSH. I got angry. I think I was yelling about it outside of the building over it. TSH alone does crap to see if there is a thyroid issue and that's basic common sense for doctors even my PCP and her nurse know that. The results from TSH, Free T3, and Free T4 are compared to find out for sure what's wrong with a patient or if they need more testing done for like auto-immune diseases. Justin understood why I was so angry, but my mom and sister were like 'If something shows up on the TSH test they will probably do more testing'... I kept trying to explain to them that's not how it works since TSH is NOT checking the thyroid, but the pituitary gland and its reactions to the how much of your hormones the thyroid is producing and even this test alone can show things are okay when they aren't.
Okay.. I think that's enough for today as I really, really need to do school work.
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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.
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, December 1, 2012
... and the News
After getting the news and scheduling my appointment, I tried to call my mom, but couldn't get a hold of her. This was understandable since she was on medicine that made her sleep most of the day. I then tried to call my dad and again I failed. It was 9:15am their time, so he was at work. Justin decided to take me to the Jack-in-the-Box that just opened in our state (and happened to be the first one in Ohio) that very day. This was a big deal to me since I used to live in Texas and been missing it for a long time. This was his way of calming me down, though I was calm, but also I was still in shock.
Sometime after ordering my food and sat down at a booth my dad returned my call. It was painful to tell my dad I had cancer. I wish there was a right way, a true right way to explain over the phone that you have cancer to your parent. I told my dad when my appointment was and he said he would look into plane tickets, hotel room, and talk to my sister about picking up my mom from the airport. I expressed to my dad how I wanted him to come up as well and thought it would be best for my mom if he came. For those that don't know me, I always put others before me, especially when I'm dealing with a major issue myself.
Most of the day is a blur to me now. I remember we went home and told Justin's parents the news with his dad's reaction of yelling "OH MY GOD!" I eventually told my mom, my siblings, and after getting to tell them I posted it on Facebook and Plurk so the rest of the family and friends can see the news.
When I was on the phone with my mom I learned that my dad was able to come, but was leaving the day after my surgery since he had to work. This was fine to me until the next day when I got an email from my ENT's secretary asking to move my appointment a week earlier. I quickly replied asking why we need to move it and explain my parents already bought their tickets to fly up from Texas. It turned out that someone had the cancer far worse than me and needed a 12 hour surgery and she asked me if we could move it back a day. I was not going to block someone from having surgery, especially someone that needed it more than me and I said I was fine with moving my surgery back a day.
My parents were coming up on Monday, my dad was leaving the Wednesday which is now my surgery date and my mom was leaving Friday. I told my parents the news and my dad went to see about changing his leave date to Thursday, but was going to cost too much. My parents are dealing with a lot of money issues from their move, so I understood, so no judging people.
The next week and a half was spent with Justin and me preparing for the surgery... getting me clothes that would be easier for me to put on afterwards, food to eat, a couch pillow with arms, and probably other things that I needed. I also spent a lot of time on the internet on support group sites reading about other people's experience and talking to them. Throughout this week I was mostly fine, but it wasn't until the week of that I started getting nervous.
Sometime after ordering my food and sat down at a booth my dad returned my call. It was painful to tell my dad I had cancer. I wish there was a right way, a true right way to explain over the phone that you have cancer to your parent. I told my dad when my appointment was and he said he would look into plane tickets, hotel room, and talk to my sister about picking up my mom from the airport. I expressed to my dad how I wanted him to come up as well and thought it would be best for my mom if he came. For those that don't know me, I always put others before me, especially when I'm dealing with a major issue myself.
Most of the day is a blur to me now. I remember we went home and told Justin's parents the news with his dad's reaction of yelling "OH MY GOD!" I eventually told my mom, my siblings, and after getting to tell them I posted it on Facebook and Plurk so the rest of the family and friends can see the news.
When I was on the phone with my mom I learned that my dad was able to come, but was leaving the day after my surgery since he had to work. This was fine to me until the next day when I got an email from my ENT's secretary asking to move my appointment a week earlier. I quickly replied asking why we need to move it and explain my parents already bought their tickets to fly up from Texas. It turned out that someone had the cancer far worse than me and needed a 12 hour surgery and she asked me if we could move it back a day. I was not going to block someone from having surgery, especially someone that needed it more than me and I said I was fine with moving my surgery back a day.
My parents were coming up on Monday, my dad was leaving the Wednesday which is now my surgery date and my mom was leaving Friday. I told my parents the news and my dad went to see about changing his leave date to Thursday, but was going to cost too much. My parents are dealing with a lot of money issues from their move, so I understood, so no judging people.
The next week and a half was spent with Justin and me preparing for the surgery... getting me clothes that would be easier for me to put on afterwards, food to eat, a couch pillow with arms, and probably other things that I needed. I also spent a lot of time on the internet on support group sites reading about other people's experience and talking to them. Throughout this week I was mostly fine, but it wasn't until the week of that I started getting nervous.
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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