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.

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