Thursday, December 23, 2010

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 It's outdated and seldom ordered anymore.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:

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 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 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?