Saturday, April 07, 2007

Thyroid Cancer - The Final Visit to the Endocrinologist

I discovered that I could order my own labs from a website online to determine my Free T3 & Free T4 levels along with the TSH. I ordered these so that I could have my results prior to my endocrinologist visit. I wanted to be armed with information. So on the day that I had my blood drawn for the online test I also had blood drawn for my doctor’s orders. They were from two different labs but the results were indicative of my suspicions. I was low in Free T3 and this was the main cause my fatigue. Why was I the one to find this and not my doctor I wondered? The chart below shows the numbers. I was at the bottom of the range.

These are the results of the tests I ordered:

TSH 1.515
FT3 (230-420) 230
FT4 (.8-1.8) 1.3

I decided that I would not tell my endocrinologist that I had started on Armour just 3 days earlier. My intention was to tell him how I had been feeling and see what he suggested and then if I did not get a satisfactory answer I would ask him for Armour and produce the lab test I had run.

The following is an update I sent some friends after my visit to the endocrinologist.

To say that this visit was less than enjoyable would be an understatement. Many ask why I stay with him and it is because there is no one in Grand Rapids right now that has the knowledge of Thyroid cancer that I need to monitor my numbers. I have my new DO and ND to manage my Armour but there is still the portion of the cancer and neither of them understands it to the level I need. I am seriously considering calling Dr. B's office and getting on his waiting list. I don't want to endure more office visits like this one and need some more definitive answers.

First, he breezes into the room and shakes my hand and exclaims "Well we had you on .175 mg of Synthroid and you were experiencing hyper symptoms (TSH was .024) and we reduced your dose to .150 mg but now your TSH is WAY too high so we need to bump you back up to the .175 mg dosage again." EXCUSE ME???? I felt bad on .175 mg and .150 mg isn't working so let’s just put you back where you felt bad and not think about options?? UGH!! I didn't say this but thought it. This is the point where I interjected that I wanted to know where my Free T3 numbers were so I had them run. I produced my lab slip for him. I told him that I had been studying T3 and how some people don't convert T4 to T3 well. He went on and on about how it wasn't true that they had done lab tests on dead babies and had found T3 in them. I said "WHAT???". I said “Listen again - I didn't say that I didn't make T3 at all but that I could be someone who didn't convert it WELL enough to give me what I needed.” He quickly changed his tune and said "Oh I know what we can do. I'll leave you on the .150 mg since you seem to feel well on that (never asked me how I was feeling though just assumed that since I hadn't called I was OK) and we'll add some synthetic T3 - It's called Cytomel". UGH! I swear he thinks I am an idiot and it is so patronizing! I already knew his protocol before I got to his office. So at this point I interject with "Can I try Armour?" You should have seen how fast he looked up from his paper that he was writing on. The entire time he was telling me what we were going to do he couldn't take the time to look at me prior to this. He exclaimed "ABSOLUTELY NOT". I asked "Why not?" This pushed his buttons as he physically began to shake. I got the "Because it isn't for you." So I pushed further - "Why not?" Then he gives me the canned answer ( I think they get this in Endo school) "Because it isn't stable." I said "What do you mean?"

I swear this man was about ready to strangle me for asking questions and questioning his authority but I pressed on. He said “Because it is from a Pig and you don't want to take pig hormones." I asked why not again. He then said that they have a varying dosage amount in each pill because they come from many different pigs at many different slaughter houses and there was up to a 20% variance (+/-) in the potency." I know this isn't true so I challenged him again. I asked if it was FDA approved and if they required potency stability and he said "Yes but they allow a 20% variance". He must think I am a real idiot to believe that they would allow a swing of 30 mgs either way on a 150 mg dose. Then he went off on the fact that the synthetic T4 more closely mimicked the human T4 and again reiterated that I didn't want to put a PIG into my body. Then he went on to tell me that they used to make it out of Bovine thyroid until they became concerned with Mad Cow disease. His credibility very quickly began to go down the tubes with me. I then told him that I had made connection with other thyroid cancer patients who where on it and feeling quite well. At which point he told me that I couldn't. I asked why again and he said because I still have a tumor. HUH? I do? Well my Tg level was at a 22 again. *sigh* which was up from an 8 in August. I am sure it is due to the change in my TSH numbers but I will get to that.

I asked him what would happen if I took Armour. At this point he about lost it. He told me my tumor would spread and metastasize. He added at the end of this discussion that now that he was "supplementing" with T3 the free T3 test would no longer be a valid test to run to see how I am doing. Is this true? I told him that I was having problems losing weight working out 5-6 days a week. Do you know what he said? "Are you moving?" I said "What?" He said it again. I said "Can you explain what you asked?" He said are you getting any exercise? HELLOOO!! Did I not just say that I couldn't lose weight even with working out? He said the Cytomel should "fix it".

I left his office and went out to my car and cried. It is very hard to have a Dr. tell you that you will die of cancer if you take Armour - whether you believe it or not. I need a new solution. My comfort level isn't with my new DO in managing this cancer "watc.". He is just my way to Armour. I am so frustrated and as I told others. If I had to do it again I would NEVER have my thyroid ripped out!

My Final Post ..... The Ending of a Journey

It is a very strange feeling to be writing this post.  It will be the last update that I post to this blog.  The blog itself will remain up ...