Not sure what to say...still HyPO

It feels like forever since I wrote last. Things have been so busy for me. So much "on my plate" aside from this disease that I felt like I was drowning, no time to write.


Well, things are starting to slow down, including my thyroid. My Dr. says I'm still hyPO...so now my dose is 5mg-1x day, Every Other day. Hopefully things will begin to start looking brighter.

Deeper Thoughts

It's been a very long time since I've been able to think, deeply. 
My head has been clouded by this disease (literally and  figuratively) and the medication dosage fluctuations. I believe they really made it difficult for me to think and to feel simultaneously. The last year and a half has been only a fuzzy memory. Most of what I remember is sadness, feeling lost, frustration and emptiness.

The last couple weeks has been, an awakening. An awakening of feelings, thoughts, emotions and clarity. All mixed together yet separate, each in their own way. For the first time in what seems like forever, I've been able to tell my emotions apart. I feel happy again...!!! This feeling I've missed the most. This disease took away so much of me, who I am, my quirks, my humor, my overall outlook on life. During this past year I knew this, but it hasn't been until now that I realized the extent of it. As much as I dislike what I felt, or didn't feel, what I've gone through has helped me appreciate what I had, what I now have and what could be in the future.

I know this clarity might not last forever and that it's not as good as it could be, but if it sticks around for even a few more weeks, I will be content for the year (I say for now...lol). ;) I find myself looking forward to each day as a new beginning. A brighter, fresh, exciting beginning of life, my life.

Feeling Pretty Great!

It's been just over a week of reduced medication, (5mg. from 15mg.) and I feel so much better! My mind feels clearer, I feel like I have energy again,  I can actually remember things, and not just my day to day things, but even things from when I was a kid...it's been a while since I've been able to do that. =] I still clench my teeth, but sleeping is easier... =)
I know that I am not 100% and probably won't be for a long time, if ever, but I am very grateful for feeling as well as I do, now.


I'm looking forward to a full night's sleep tonight before I start my new job tomorrow. =]

I'm HyPO...?

Just got the call I've been waiting for all week. My most recent labs, and apparently they indicate that I am HypO.
I don't have the numbers yet, my Dr. is sending me a copy of the report via mail, so I'll post them once I get them.

He reduced my dose of Methimezole to 5mg once a day (from 7.5 2xday) for a few weeks to see where that puts me, he doesn't want to cut me off completely yet.  I will re-test in mid February and see from there.

I forgot to ask him while I had him on the phone, but if I'm hypo, why is my thyroid still swollen? I'm going to do some research on this and have some idea when I talk to him again after my next blood-work results, if it still is swollen at that point.

Not feeling that great...

The past few weeks have been stressful, but the way I'm feeling is starting to get to me.
I have the shooting pains almost constantly again, I'm grinding and clenching my teeth at night to the point that they hurt all day. I've been getting headaches too, right behind my eyes and they last for hours. I'm not sleeping well either lately, maybe three hours at a time...and I wake up with a very stiff neck. I think I might be coming down with a cold on top of all this... Grrr. =[
 
I am Supposed to get my lab results today... Very curious as to what my levels will be. I've been on the same dose of 7.5mg/2x day of Methimezole for three months now... My goiter seems to fluctuate in size day by day, makes me even more curious about my levels...
I'll update as soon as I hear...

=) Thank you God!

I am so very grateful today.
My Endo was so wonderful. I feel so comfortable with him, I was able to talk about how I feel and know that he listened. I am actually looking forward to going back to him and get a true game-plan in place.


I got blood drawn this afternoon and will get the results around the 24th as my Endo is on vacation next week. We will see what medication dosage needs to be then.

With feeling my throat, he said his estimate is that my Thyroid probably weighs about 43grams and for a woman of my age (25 y/o), it should normally be around 25grams - WOW!!!! Almost Twice the Size!!!  SCARY! (to me...)

As of right now, I'm scheduled to go back in six months because he hasn't seen updated labs and will change that if necessary or at the least, we will talk over the phone. =) Very cool to me that this an option...I dislike having to go into an office so often, esp. now as he's a half hour away.

I was also given a website to check out here, it is a joint effort of the American Association of Clinical Endocrinologists and American College of Endocrinology. I am looking forward to see what this site has to offer.

Yay! Dr. appointment tomorrow

I am feeling the most exited I think I've ever felt about going to a Dr. I just hope that I am not disappointed!
 The last visit I had to my previous Endo was Nov. 1, 2010... I get to see my diagnosing Dr. tomorrow for this first time in over a year.
I am planning to go in with all my accumulated knowledge and keep my feet planted about my care... If this Dr. doesn't listen, then I'll look for a new one!

Great support site...

I joined a great site for people with all sorts of concerns. DailyStrength

A new friend messaged me today after reading some of my blog posts here and this is her letter to me. I feel it should be shared because I think it makes things quite simple to understand. I wish I really understood this a year ago...

Thanks to the link to your blog.

Just a quick scan has me concerned.
You said:
I am hoping to see a different Dr. soon. I'm looking to get better results and a real game plan that I feel comfortable with.

I know it's difficult to find doctors with an interest and experience with Graves'. Best question I had for them was, "How many patients do you have on ATDs at this time" It seemed to cut to the quick and not waste my time. My family practitioner said 9 long term and my endo said 15 or 18 long term. Both of them knew how my antibodies work, to not expect a TSH, and the right tests to order.

That doesn't mean they knew exactly where within the normal range my personal set point for FT4 was...but I had doctors that I could work with, and neither of them fired patients or forced them into RAI if the patient didn't happen to hit remission by a predetermined calendar date.

I don't see the correct lab tests being taken for you.

Take this one for example:
10/25/10 Most Recent
TSH 3rd Gen.: 3.5 (Range: 0.40-4.50)
T4 Total: 4.8 (Range: 4.5-12.5)
Free T4 (T7): 1.3 - Low (Range: 1.4 - 3.8)
T3 Uptake: 28 (Range: 22-35)

TSH.. with Graves' antibodies we only have any TSH when we are either overdosed on ATDs , with thyroid hormones too low for our bodies needs, or when our antibodies lessen and we near remission. Graves' antibodies work in place of TSH.

T4 total.. totals are most often falsely elevated in women, due to our estrogen. Slightly above the range is seen often, and normal for that person.

FreeT4 ( T7) is NOT the correct FT4 test. It is a mathematical estimation of what the FT4 might be, using the total T4 and the T3 uptake. This number can be erratic. It's outdated and seldom ordered anymore. We do have accurate tests available now.

T3 uptake.. is not a test of T3 thyroid hormone, but a measurement of binding proteins.

So really.. you have no way with these tests to have any idea what your thyroid levels are.

Given the amount of time you've been on an above average dose of the MMI, I imagine the idea of what hyper and hypo feel like are all mixed up. At least it was for me. Hypo and hyper symptoms over lap a lot. Plus symptoms vary by the amount of hypo or hyper we are. If I'm just a tiny bit hypo I do feel very hyper. Only after I am very, very hypo do I start to get classic hypo symptoms.

Sadly being held on too high of a dose and being told we are "normal", while we are more and more miserable, and starting to wonder if we might have gone slightly mad, is pretty darn common.

First order of business in getting the right lab tests run.
Many times we find a family practice or general practitioner works best, if that's a possibility.

Best source of current info here:
http://www.elaine-moore.com/Home/tabid/36/Default.aspx

Hovering over that top line of subject areas will lead you around her site. Elaine is a big part of the reason for my successful outcome. All articles have good references listed at the end.

 I hope this will help someone like it's helped me.

It's been a while...it seems

Wow, so much has happened since I last wrote...
I've been on quite the roller-coaster emotionally and physically (figuratively speaking). My husband and I moved back across the country from LA to NJ. The packing, the stress!, the packing, the crappy food, the non-stop coffee drinking to stay awake, driving through hills and mountains (roller coasters) and now the non-stop (it seems) Un-packing! Phew, it has been quite a stressful past few weeks.
Right before we left LA, my thyroid was so swollen I could see the perfect outline on my neck. I could barely swallow unless it was food. I was a little worried about the size, but I didn't really feel much different than expected stress so I didn't do anything about it. By the third day into the trip, most of the swelling had gone down...and now it looks back to the normal swelling. Swallowing is still a little difficult, but it's been that way since my reduction of medication. I'm thinking the crappy food and stress were to blame for the larger than normal size... As soon as I get health insurance straightened out, I will hopefully being seeing the Dr. who diagnosed me. He was really nice and explained things well from what I remember. I am hoping that he really is as good as I think...

I am feeling a little stressed/worried/confused lately about this disease. I do feel as though I understand quite a bit about the thyroid, the effects and the way the medication is supposed to work, but what I don't understand nor can I find much information online about is, How will this disease affect me, once my thyroid is under control...?
Graves' is an Autoimmune disease...so once my thyroid is not longer affected (by remission, killing it or removal) what part of my body will GD start attacking next? Will it attack anything? I've read about TED (eye disease) and the Graves' Dermopathy. I also understand that having one autoimmune disease makes me susceptible to others, but is there anything else that is possible?

Need to vent! So frustrated!!!!

Ok, so on Nov. 1st, my Dr. reduced my dose of medication from 20mg/day (10mg/2xday) to 15mg/day (7.5mg/2x day). Since then I've been feeling hypER again. All the regular symptoms started popping up, but my mood swings and anxiety are starting to become unbearable. I hate feeling like this!

I called my Dr. on 11/18 and left a voice-mail explaining that I feel hyper and I'd like to talk to her about it and maybe get my dosage increased again until we can get a set game plan.

I received her response on my voice-mail later in the day. It was the shortest message I ever received from a Dr., "Hi Julie, You are not hyper.  Your last report does not indicate that you are hyper, if anything you are hypo. Call me on Monday."

Well now, let me get this straight Dr.!?!

At my last appointment you tell me my levels are ok, and you want to "see what reducing my medication will do.", so I take less, as prescribed, but almost instantly I start feeling hyper! 

Now you are telling me that because my labs, from when I was on a higher dose, report that I was ok, that I am suddenly hypO? Where'd that come from? And then you are going to completely rely on what a piece of paper says instead of how I, the patient, FEEL? 

I did not call her back right away as I was too aggravated. She called again and left another  message pretty much stating the same thing and suggested that I see my primary Dr. if I feel it necessary. I called and left her a message and faxed over a request for my medical records. I am hoping to see a different Dr. soon. I'm looking to get better results and a real game plan that I feel comfortable with.