Graves' Disease Support Group
Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative exophthalmos (protruberance of one or both eyes and associated problems) and infiltrative dermopathy (a skin condition usually of the lower extremities). This disorder is the most common cause of...
Hello everyone. I am involved in some of the other support groups, but wanted to offer any advice, hope, support for you that have active GD status. I got had two radioactive iodine treatments and finally thyroidectomy about 26 years ago. Over the years I've come across people dealing with this mess and the outcomes are often quite different. I had a very severe case as we were moving around the country at the time and it took a huge goiter to finally clue the docs in to what was going on with me! Anyway, it has been a looooonnnng journey and I wish I could say it was over.
I have a good friend who had a thyroidectomy, got her levels in order short-shrift and is doing really well. I hope this will be the case for you. My road has been bumpy. When the levels were finally normal, I continued to have symptoms of many of the autoimmune/connective tissue diseases....usually typified with ALL CAPS: RA, MS, MCTD, UCTD, and soforth. I did have a "remission" period that lasted about 9 years and I was fairly symptom-free. I had a baby during that time (that wasn't supposed to happen and had not for 19 years!!). I have chronic fatigue, fibromyalgia, dry-eye (yes, I had the Bilateral Orbital Decompression surgeries), symptoms of Reynaud's, a lupus diagnosis (nope...don't have it really, but I fit the list of qualifications, what could the doc do?!), and I could name a few more but it's boring. What matters is this: these things are a part of my life, but NOT my life. Depression does come with chronic illness, but at 51, I have to say life is certainly worth waking up to each day. Let me know if I can help you understand this wonky disease in any way...just please don't ask me about TSH levels! Ha! God Bless! Raven
I have a good friend who had a thyroidectomy, got her levels in order short-shrift and is doing really well. I hope this will be the case for you. My road has been bumpy. When the levels were finally normal, I continued to have symptoms of many of the autoimmune/connective tissue diseases....usually typified with ALL CAPS: RA, MS, MCTD, UCTD, and soforth. I did have a "remission" period that lasted about 9 years and I was fairly symptom-free. I had a baby during that time (that wasn't supposed to happen and had not for 19 years!!). I have chronic fatigue, fibromyalgia, dry-eye (yes, I had the Bilateral Orbital Decompression surgeries), symptoms of Reynaud's, a lupus diagnosis (nope...don't have it really, but I fit the list of qualifications, what could the doc do?!), and I could name a few more but it's boring. What matters is this: these things are a part of my life, but NOT my life. Depression does come with chronic illness, but at 51, I have to say life is certainly worth waking up to each day. Let me know if I can help you understand this wonky disease in any way...just please don't ask me about TSH levels! Ha! God Bless! Raven
Take care :)
T3; 24-39......mine is 27
Free Thyroxine index; 1.2-4.9...mine is 2.0
I have a Vitamin D deficiency that has been relatively consistent for many years now, even though I supplement. The levels are 30.-100. Mine was 26.4 on my last office visit. The Endocine Society practice guideline defines deficiency as a level between 21 and 29 ng/mL. Also my Iron levels run low to borderline. Please keep an eye out for this. Sorry, I meant to add the Limits to my earlier post. I hope this helps.
I hate to tell you this but, it doesn't seem as if your care is being properly managed.
The tests your doctor is running are outdated and not useful at all.
The link below explains what tests your doctor should be running and the right way to be medicated for hypothyroidism:
http://www.mercola.com/article/hypothyroid/diagnosis_comp.htm
I'm not sure if you're aware of this but, a school of thought is that chronic fatigue and fibro are actually manifestations of undiagnosed/improperly treated hypothyroidism.
http://www.thyroiduk.org.uk/tuk/related_conditions/Fibromyalgia-medical-mystery-solved.html
Reynaud's-like symptoms are typical hypothyroidism symptoms.
And, vitamin/nutrient deficiencies are also common in hypothyroidism.
If you are interested, here's a pretty comprehensive list of common hypo symptoms:
http://www.stopthethyroidmadness.com/long-and-pathetic/
You just might want to talk to your doctor about running the FreeT4 and FreeT3 tests for you......and see if your levels are the types of levels described in the article I linked for you.
I have a sneaking suspicion that your levels aren't adequate and, with proper meds/doses, you could very well see an end to many, if not most, of your symptoms.
And, if inadequate thyroid levels are the cause of all of your issues, those issues will dissipate once your levels are optimized.
A thyroid-savvy doctor will adjust the patient's dose until his/her levels are similar to the types of levels healthy people have (as documented in thyroid textbooks).
Healthy people have FreeT3 levels above mid-range and FreeT4 levels near the high end of the range.
Even with the "plain" T3 & T4 tests your doctor ran, you can see that your levels aren't even at mid-range.
Killer is - due to our female hormones and proteins in our bloodstream, the T3 & T4 test results are often falsely elevated.
That's why the FreeT3 and FreeT4 tests are the best tests to evaluate thyroid function......and they are the only test results that should be used for dosing purposes.
I sure hope you can get your doctor to run the right labs.....we'll show you how to interpret them and make suggestions to help you rally for the proper care......it's clear you're not getting that right now (sorry).
I just typed out the reasons why the FT4 index is no longer appropriate and quite outdated. I'm going to just copy and paste the part you need here and save myself more typing. :)
The FT4 you have listed here is a FT4 index, also called FT4 calculated, FT1 and FT7. Same test by different names. I know this because the reference range you have listed is a very common one used with this test. This test is NOT accurate, and about twenty years ago they replaced it with the FT4 we use today. Many labs no longer run it, but unfortunately some doctors have not caught up with current facts, and still order it. So some labs do still provide it.
Before the true FT4 as we know it, they tested the total T4, which you have there, and in women is often falsely elevated due to estrogens. Then they run a T3 uptake, which is not a thyroid hormone, but tests binding proteins. They then use the total T4 and the T3 uptake and calculate what they think the FT4 might be. That number is what you are seeing listed as the FT4 index ( or any of the other names I listed). The full name of the test should be on your paper copy.
Unfortunately since this is all they tested originally for you, you will never know where on the scale of FT4 you actually started. The FT4 index is not consistent. It may test higher one week and lower the next, due to the test, not the patients blood levels. It will get you in the ballpark, but it won't show you your proper seat.
I kind of figured as much that your levels may be too low for your body's needs. CD and Pam are bang-on! You must have at minimum the following tests done.
Free T4
Free T3
TSH (Doc's love this one, but it's meaningless after RAI)
You don't have to rely on an Endocrinologist either. Mine was clueless and made my life a living hell. I now am under the care of a GP that knows to base my thyroid replacement meds on my Free T4 and Free T3 keeping them both high in the range. I take both synthroid and Erfa desiccated thyroid.
Please let us know how you make out. You dont have to feel this way. You can feel better!
I NOW DEAL WITH CHRONIC NAUSEA(TO THE POINT DAILY TRYING NOT TO THROW UP)INNER SHAKING - BOWELS- ENLARGED PITUTARY GLAND (HEADACE) ON RIGHT SIDE OF TEMPLE - BONE PAIN ALL THIS NON STOP 24/7 - CAN'T EAT - CAN'T SLEEP...... I DO NOT WISH THIS ON ANYONE I WILL KEEP IT ALL TO MYSELF IVE LEARN TO TAKE ONE DAY AT A TIME & STOP & SMELL THE ROSES.......... THERE'S A REASON GOD DIDN'T WANT ME YET AS MY STORY ISN'T FINISHED DOWN HERE YET ........THERE IS A STORY WROTE ON ME & IM SURE I WILL BE THE ONE TO FINISH WRITING IT & ON MY GOOD DAYS I TRY TO BE HERE TO GIVE MY SUPPORT AS I DIDN'T HAVE MUCH WHEN I FIRST CAME DOWN WITH CANCER & IT MEANS THE WORLD TO ME TO HELP ANYONE I CAN........
((((HUGS,ANGEL)))).......
YOUR SYMPTOMS WITH NAUSEA AND INABILITY TO SLEEP (LYING DOWN) REMIND ME OF MY HUSBAND BEFORE HE WAS FINALLY DIAGNOSED WITH CHF.