TSH bad but I feel great

DebE13 · Post by **DebE13** » Wed Jan 13, 2016 6:25 am

Tex, I finally got my labs done again yesterday and I wasn't surprised that they are messed up but I am shocked at how great I feel. Some of the horrid neck tension and shoukder pains I have been complaining since my thyroidectomy are almost nill. I was told they were unrelated but I disagree. It seems to be a common complaint.

My TSH went from 1.47 on 12/28 to 8.85 uUI.mL on 1/12 ( normmal high 4.5h. My free T4 is at 0.8 ng.dL and my free T3 is at 2 pg/mL

In the past ten days I have skipped 8 of my levothyroxine pills and 4 of my liothyronine pills with no rhyme or reason. It was an awful way to go about it but the mess with finding a new endo and coordinating all of the communications with my PCP left me in a bad predicament. I feel a lot better. I can tell my meds aren't right (obviously) but at least I don't feel like I'm going to die at any minute. I'm not sure how my new endo is going to sort through this mess but I am going to message her with a little bit more detail about my skipping meds. What a bad way to start out- she is going to think I'm one of "those" patients. I haven't received the results of the EKG and Holter Heart Monitor testing but I' m not sure how useful the data will be considering.......

How can I be feeling so good when my numbers are so off?

Post by **tex** » Wed Jan 13, 2016 10:11 am

Deb wrote:How can I be feeling so good when my numbers are so off?

There's a lot that we (and medical science) don't know about hormones. Apparently LDN is to your thyroid hormone effectiveness what grapefruit juice is to most medications — it supercharges them so that they are much more effective.

The so-called "normal" ranges for test results are based on thyroid tests done on supposedly normal people. However, you are no longer normal — you stopped being normal the day your thyroid was removed. And you're even less normal while using LDN. Doctors mistakenly assume that conventional thyroid test results apply to everyone, but that's simply not true. It's just an educated guess. "Normal" results are not normal for you. Currently, there's no way of knowing what kind of test results would be normal for you

Remember that you still require regular thyroid hormone dosing (of at least thyroxine), because you have no way to produce it internally. But the LDN seems to amplify its effectiveness, so less is needed than would be needed for a so-called "normal" person in a similar situation.

Tex

DebE13 · Post by **DebE13** » Wed Jan 13, 2016 11:27 am

I guess I will have to ask about my overall plan. My x-endo was happy if my TSH was around one or slightly less. I'm also in another unique class of thyroid cancer patients. He was not as concerned about suppression since mine were microcarcinomas that were totally encapsulated. I've had no other treatments for cancer other than the removal. I feel lucky about that but cannot imagine going back to his "happy" numbers for me. The quality of life would be rated as a 3 in a 1-10 scale. This is the best I've felt since my TT in 2013. I have some very achey knees right now but other than that so many of my pains have gone, including the brain fog. It's hard to tell if it's the LDN or the skiiping of meds or a combination of the two. It will be interesting to hear her take on the situation. I'm sure she will be shaking her head at what I've done. I don't know her experience with LDN but I'm assuming since she with UW Health in Madison, WI ( much larger population than where I live and a teaching facility) they will be more in-tune and open to newer ideas. She was the one that was familiar with MC and food's impact on health. That's why I fell in love with her..... She was the first knowledgable doctor that I've had a productive conversation with- ever.

I am also cautiously awaiting Friday.... It is day 23 without taking entocort. That was my previous length of time off of it before I went into a flare. I can tell I am more sensitive to some of the questionable foods I have been eating so this has given me the push to cut them out. I know I have a way to go before I can declare success in discontinuing it but I remain cautiiusly hopeful. What an added bonus!

Post by **tex** » Wed Jan 13, 2016 1:42 pm

You're now a pioneer, trying to find a doctor who can serve as a guide as you try to chart a course through the wilderness.

Best of luck to you.

Tex

DebE13 · Post by **DebE13** » Wed Jan 13, 2016 8:18 pm

I love your positive attitude! My first thoughts on being a pioneer was "oh, crap!"

Zizzle · Post by **Zizzle** » Thu Jan 14, 2016 12:05 am

Have you considered one of the natural thyroid hormones? I ask because I know many women that were allergic to ingredients in the synthetic thyroid pills, anything from talc to acacia. One friend was covered in hives until she switched!

DebE13 · Post by **DebE13** » Sun Jan 17, 2016 6:57 am

I have been trying since 2013 to try any of the natural thyroid hormones. There just aren't any doctors in my area that are open to it. I take the levothyroxine by Mylan using the 50 mcg pills. This is the only pill that is dye free and acacia free. I have pine pollen allergies so the acacia used as a filler caught my eye. I take the liothyronine by Paddock for the same reasons. These were the manufacturers that I found that had the most MC friendly ingredients. Although, I haven't checked since I started taking them to confirm that nothing has changed. I should probably do that.

It's amazing the fillers that are used. You would think the medical community would know better.