Friday, June 27, 2014

Where Am I Now?

   After going from doctor to doctor, I have decided to purchase my thyroid medication online and adjust the dosage myself.  I will continue to look for a doctor who understands Hashimoto's disease and who is willing to prescribe NDT.  Since I am the only one who knows how I feel, how could I possibly expect lab results to make me feel better?  And since the doctors I have seen all treat based on lab results, it's no wonder I wasn't getting any better.

   As for the supplements?  I'm working on that.  There's so many available and so much that's unknown. For a time there, I was buying supplement after supplement; trying everything I could get my hands on.  Did they work?  I'm not sure.  I was still in the process of finding the best dose of NDT for me.  I do know that coconut oil helps tremendously.  It helped with weight loss, (I was well over 200lbs, am now I'm at a very healthy 150lbs and have been this weight for about a year or so now), and I cook with it because it doesn't turn into a bad fat when heated.  The only other thing I use right now is Curcumin.  Curcumin is a natural anti-inflammatory.  Those of us with Hashi's tend to have inflammation, and Curcumin helps.  I take 2 curcumin pills in a teaspoon of coconut oil once or twice a day. The texture isn't wonderful, but it tastes ok. Sure beats cod liver oil hands down.  Other than that, I eat healthy and that will just have to do.

  I really hope to find a doctor who will work with me.  Hashimoto's isn't the easiest disease to treat. Especially because as the seasons change, my dose requirements change too.  I can't stay on the same dose all year.  In the summer I tend to require less NDT than in the winter.  Doctors don't understand this.  Or maybe they do, but don't have the time to see the same patient every 6 to 8 weeks.  

   To anyone reading this who has Hashi's, please try to work with a doctor.  I really don't recommend doing this alone.   Even though I'm dosing myself, I'm keeping my family doctor aware of what I'm doing.

Sunday, March 23, 2014

It's Not the End

     I haven't written in a very long time because I've been feeling just fine. Or fine enough to get by.  The problem is, my blood test results are both low and high.  So I thought it was time to see an endocrinologist. Well, here's how it went:

Endo:  I see your TSH is suppressed.
Me:  What are my other lab results?
Endo:  They are both very low.
Me:  That would explain my tiredness then.
Endo:  No.  It's irrelevant.  NDT doesn't show up in the blood.
Me:  What?  Are the labs here different from everywhere else?
Endo:  (completely ignoring my question)  You need to take Synthroid.
Me:  I don't do well on Synthroid.  That's the reason I was put on NDT.
Endo:  I only deal with Synthroid, but I can give you T3 to take with it.  The T3 will stop the side effects.

So that's what I did.  After I reiterated the side effects I had on Synthroid, and after the endo insisted I try it again, I gave it another try.  I ended up with all-over itching, a rash, nausea and just a total overall feeling of being sick.  I can't believe I tolerated all of those symptoms last time.  Thank you to my body for being allergic.

And now I'm back to the issue.  Suppressed TSH (0.4) with FT3 and FT4 very low in their lab ranges. (The endo wouldn't give me a copy of my labs.  Regardless of Canadian law, these doctors refuse to release my own medical information to me.)  So what is the solution to these lab results?  I have no idea.  I can only guess, based on my readings, that I have a RT3 issue.  High levels of RT3 are caused by Synthroid.

This is how I understand it works:

The patient takes Synthroid (or other T4 only drugs).  This helps for a bit, then the symptoms come back. This means a higher dose of Synthroid.   Sometimes the symptoms go away again for a bit, sometimes they don't go away at all.  But the symptoms always come back.  So the dose of T4 is raised again - until the doctor just won't raise it anymore.  Meanwhile, the patient feels horrible.  If the body doesn't convert the synthetic medication, (and sometimes even if it does), such high doses of T4 only drugs produce RT3.  

So, is this what's happening to me?  I'm not sure.  I can't get an RT3 test done.  They refuse.  So what do I do?  Well, as much as I hate to do it, I think I'm going to be on my own.  I will dose based on how I feel. I'm the only one who knows if I'm tired/exhausted and I'm the only one who knows if I'm on too much.

I really hate to have to do this on my own.  It's expensive and really not a good idea.  But that's what I'm going to do. I will pay for my own blood tests, but at least I'll get to see the results.

It's such a shame.

Wednesday, January 30, 2013

Living Life

I would like to post something new today, but I just don't have much to say.  Things are going very well for me.  Even after I suffered for so long with this disease, I'm finding it so easy to forget I have it now.  I go to work, do all the things I need to do, and just live every day.  I take my thyroid medication twice a day, and I take my adrenal support very regularly.  I no longer feel the limitations on my life that I once had.  Feeling "NORMAL" all of the time allows me to practically forget about the years of horrible pain and suffering.

So what's left?  Well, I guess the only things left for me to do are; to thank all those who helped me (Stop The Thyroid Madness group pages in Facebook, as well as friends who also suffer with some form of thyroid disease), and continue to share my experiences.  No one will experience this disease exactly the way I have, and no one will respond to treatment exactly the way I have. We are all different.  But the biggest, most memorable moment of my life was the day I realized I wasn't alone. That there are thousands and thousands of people out there suffering just like me. Wow, just thinking about that moment brings tears to my eyes. The comforting thought that someone else knew exactly what I was going through. *sigh* If I ever won the lottery, I would definitely start a "Walk for Thyroid Research".  My fondest wish come true would be people all over the world gathering for the annual "Walk for Thyroid Research".  But for now, I settle for donating to Thyroid Research every year.

Sunday, December 30, 2012

And Again!

I've been working on this specific post for a couple of days now. Mostly because it's a bit emotional, but also because I feel such disbelief that this is happening, still.

Previously I've mentioned how hard it is for family and friends to comprehend fully just what Hashimoto's Thyroiditis means to those who have it and those around them. It's hard for doctors to know everything about every single disease or condition, so it is completely understandable that family or friends will forget all about this disease during the busy days of the holidays.

So the part that I find so frustrating now, is knowing how long and hard I've worked to do the research on this disease, find out what works, then take the time to put it in this blog to share with those I know, only to be told "You shouldn't have changed your thyroid medication."  What???

Well, we can't correct everyone's ignorance, regardless of who they are.  That was a case of pure ignorance.  My family member that I quoted above is not educated enough to have an opinion in this matter.  It also doesn't change the fact that this information is openly available for people - including said family member - to read, yet it was merely tossed aside like yesterday's garbage.

We will always run into those people.  It's hurtful.  It's confusing. It makes you think "Don't you believe me?",
 "I'm your daughter/sister/brother/son, and you don't believe me?"  The truth is, some people, for whatever excuse they choose to use, are just too closed-minded.  Shame on them.  I hope they don't prevent someone from getting this information and/or getting the right treatment.  No one should have to suffer because a family member is ignorant. Every person on this earth deserves the best health care and treatment available.

So if you know someone with Hashimoto's disease, Hypothyroidism, or even if it's merely suspected. Share my blog. There's probably something that will help them.  If we don't help each other, who will?

Saturday, December 08, 2012

Do I Need Supplements?

If you've read my previous posts, you already know that I take supplements to help my thyroid medication work and to make me feel better.  I read many, many posts in the numerous thyroid groups I'm in, from people who take several different supplements.  Most don't feel better and can't really figure out why.

I think it's human nature to rush things.  We think "if I take all these, I'll be 100% by tomorrow or the next day".  Unfortunately, it doesn't work that way.  So when day 5 of taking 18 different supplements comes, and nothing is better, you have to stop and figure out why.  Which one(s) aren't doing anything? Perhaps some are blocking others from working, or perhaps there's just too much all at once and the body hasn't figured it all out yet. I've done that. I've tried too many things at one time to know what works and what doesn't.  Lucky for me, I hate taking pills, so one day I just stopped all of them except my thyroid medication.

So what I learned was, I didn't actually need them all.  I still take B5 (pantothenic acid) with meals because those with Hashimotos have digestive issues.  I take my thyroid medication split into 3 doses because my body requires it that way to function it's best. And I take adrenal support in order to sleep when I should and be awake when I should.

Now, there's many other supplements that advertise they boost thyroid production.  Perhaps they do and perhaps they don't.  But how will you know what works for you?  It's all so individual. Testimonials for products have to be read with a certain amount of disbelief.  Nothing works for everyone. There's no 'one size fits all' in medications or vitamins. We all know that. So it's very important to research what they are.  Just because an herbalist/Naturopath recommended them, doesn't mean they're what you need. The problem with the time-constrained office visit is that no one is perfect. When we see our doctor, it's very possible we've forgotten to mention a symptom or a supplement we're taking. Sometimes we have had a symptom for so long that we completely forget about it.  And sometimes it may be a matter of, if we've mentioned it before but felt ignored/brushed off by our doctor, we don't mention it again. This is something that makes a doctor's job very difficult.

So the best way to choose?  Do the research, ask your doctor about them, then test them out one at a time.  Some may take weeks to see the full impact. Don't be in a rush. Rushing things may hurt you more than help you, and some products may just be a waste of money.  So hang in there, be safe, and just know that you will get better.  

Sunday, December 02, 2012

6 Months After Starting NDT

As Christmas approaches, I look back over the past 6 months since I started taking Erfa Thyroid.  I feel so much better; so much like my body has returned to normal. Let me say that again. NORMAL.  I knew I'd feel better, but to feel like a normal person?  My heart's wish come true.  Erfa Thyroid truly has exceeded all of my expectations. I still get tired some days, but it isn't every single day, and I'm sure it's normal to feel tired when you've been doing too much.  There's that word again. Normal.

With Hashimoto's disease, there's no such thing as perfect.  Medicine just isn't that advanced. Take the good and the bad and hope for the best.  I expect some sort of setback.  Every season brings different symptoms, different medication needs.  Unfortunately, unless the doctor has Hashimoto's disease, he/she won't think to make the necessary adjustments for each seasonal change.  Some people need a higher dose in the winter and some need a higher dose in the summer.  It's not even possible to get a doctor to order tests that often. So what's the solution? Adapt. Learn to cut out tasks. Maybe you don't need to vacuum every single day during those months when you'd really rather be on a higher dose of Erfa Thyroid.

This week I'm getting the house ready for Christmas and I don't worry that I'm going to run out of energy before I'm finished what I'm doing.  I don't have that constant muscle and joint pain from head to toe.  My hair stopped falling out.  I can go shopping for hours and not need a nap.  I sleep well at night now.  And I almost never get anxiety, or if I do, it passes quickly.  Because of all of this, my stress level is way down, allowing me to enjoy my days.  I think this is what normal is like.

Thursday, August 23, 2012

Up? Down? Good? Bad? Pause?

I'd like to put something cryptic here, but the fact remains that I'm in a state of waiting. I'm testing things out. Taking adaptogens every day, sticking to the same dose of my thyroid medication, and trying to get to bed at 10pm every day. The bed time is the killer so far. I'm just not sticking to it, which means my cortisol is not being produced like it should, which means I'm tired. Very tired every day. Without proper rest, things are taking longer. My adrenals can't heal if I don't get my rest, and I need my rest at the proper time of day, which is between 10pm and 7am. Napping in the afternoon isn't really the best way to catch up on sleep. Maybe I need to adopt my parents' house rules where 9pm is lights out. Of course that never worked when I lived there, so I can't imagine it would work now.

So I'm just waiting. Once I get my sleeping patterns fixed, then my adrenals will follow suit. I've read it can take 2 years or more to heal the adrenals. Seems like such a long time. But when I think about it, I've never slept at night without the help of some sort of sleeping aid. Alcohol was a big help during my high school and college years. Alcohol also helped wear down my adrenals too. Nowadays I'm just living 'clean' as some call it. Nothing except non-manufactured foods. Yes, I crave chocolate so much I dream about it. LOL. At least I know things will get better and the weather is beautiful. Since I have to wait, this is the time of year I'd choose to do it.

I've had lots of people over the years, tell me that everyone has logical places to pause in their life. Whether it's to learn a lesson, teach one, or just reflect upon ourselves. I guess this is one of those for me. A logical place to pause in my life. I have no idea what this pause in my life is for, but I think I'll do my best to find as much peace as I can.