New to List/Confusing Tests

[namaste]

Hi- I forgot to post on the newbie boards.

I'm a 40 year old female. A year ago, I was running 25 miles a week. Now I'm down to walking.

Symptoms: 25 lb weight loss in past year (w/o trying). I am 5'11. A year ago I was a size 8, now I can almost fit a size 2; rapid heart rate (resting heart rate in bed about 105), with some tachycardia nearly every day; depression, anxiety attacks, mood swings; debilitating PMS; With weight loss, I developed lots of pain in hips and neck; developed bursitis in both hips due to loss of muscle mass.

Weakness, esp with stairs or strenuous exercise; some short term memory issues; focus issues; sleep issues- getting to sleep, staying asleep; hair loss at top hairline, and hair overall has gotten very brittle and straight- won't even curl with an iron.

I have had, for most of my life, orthostatic hypotension. Sitting down, or bend over- then come up- feel faint, dizzy, see stars. Blacked out only once.

TESTS: TSH- .43
Regular T3 and T4 came back normal. Radioactive Iodine Uptake came back positive (high), indicating hyperthyroidism.

Family Doc said: "You have Grave's Disease," and sends me to an Endo.

Endo says: "You don't have hyperthyroidism, your TSH isn't low enough. But we'll run some more tests."

MORE TESTS: More sensitive T3, T4- all came back normal. Thyroid Stimulating Immunoglobulins (TSI): Positive at 225% (normal range says 0-139). Echo/Cardiogram- comes back fine.

Endo says: TSH is sole determining factor, despite positive Radioactive Iodine Uptake, despite TSI high.

Says I'm not even a borderline hyperthyroid case.

Says I'm at risk for hyperthyroidism, but don't have it currently. He ends with, "I don't know what's wrong with you." Refers me back to family doc.

Very frustrated at this point. Tired of poor health. I've been tested for chronic fatigue, fibro, lupus, rheum arthritis, ankylosing spondilitis, celiac sprue, addison's, and have had one cortisol test.

My BP has always been low at 100/60; cholesterol 150, LDL 66. Heart rate has always been high, in the 80's. Now, resting and reading a book in bed, 105. I do have other autoimmune: Meniere's, Raynaud's.

Mom has Hashi's.

While this endo seems smart, he is older and old school. I am reading conflicting things about normal TSH levels.

Should I get a second opinion?

[midgetmaid]

Yes, right away!

Renee

[GingerCMusick]

YES!!! Get a second opinion and even a third if you need it. I've been to 3 doctors before I found one that said, "Ok, you have a big problem, let's fix it" PUSH for answers. It's your body and your life! I got to the point with this last specialist that I am with that on the first appt, I acutally said "can you help me or not?" Put them on the spot and get copies of all test you have had...Good luck and please keep us updated!

[desrtbloom]

:hugs: Defenitely get a second opinion. It is so important to have an endo that works with you and listens. Don't give up. Sometimes it just takes awhile to get the right diagnosis.

[namaste]

Saw a second endo. She says it is Grave's disease, based on the antibody and RI uptake. But, she said, I'm not technically hyperthyroid, b/c my TSH isn't low enough.

This does not explain why I am having so many hyperthyroid symptoms.

She ran more tests... enough that I can't remember them all. Another T4, a 24 hour urine, adrenal tests, hormone tests.

She said she did not think it was necessary to run any pituitary tests at this point.

So... that's the scoop.

Thanks, everyone, for the input.

[GD Women]

It is impossible to tell what is going on without knowing your TSH and FT-4 and FT-3 levels with Labs reference range. And beings you had the antibodies already done that would includes them as well.

The reason for your symptoms may not necessarily be thyroid symptoms since both symptoms of both hyperthyroidism and hypothyroidism are non-specific.

It is important to have your thyroid leve

[GD Women]

Hi! Welcome to the Thyroid Boards.

It is impossible to tell what is going on without knowing your TSH and FT-4 and FT-3 levels with Labs reference range. And beings you had the antibodies already done that would includes them as well.

The reason for your symptoms may not necessarily be thyroid symptoms since both symptoms of both hyperthyroidism and hypothyroidism are non-specific.
Treatment is not a 100% cure all for symptoms. If you are lucky enough for symptoms to respond to treatment it might takes years to feel your best or there abouts. What little symptoms I have (my levels are not regulated within Labs) I find treating them separate from thyroid gets better and faster results.


It is important to have your thyroid levels checked on a regular bases because TSH might not be low enough now it might be low enough in the future.


So if it were me, and being there, I wouldn't rush into treatment unless it is absolutely necessary or life dependent. But thats me and my personal opinion.
Half of health is what you make it.

[namaste]

Hi GD Women-

If you trace this thread back to the beginning, all my labs, with ranges, are there. All the tests you mentioned have already been done. Some twice.

This was just a follow up to the thread I started weeks ago.

Thanks-

[Andros]

Saw a second endo. She says it is Grave's disease, based on the antibody and RI uptake. But, she said, I'm not technically hyperthyroid, b/c my TSH isn't low enough.

This does not explain why I am having so many hyperthyroid symptoms.

She ran more tests... enough that I can't remember them all. Another T4, a 24 hour urine, adrenal tests, hormone tests.

She said she did not think it was necessary to run any pituitary tests at this point.

So... that's the scoop.

Thanks, everyone, for the input.

What antibodies' test were run? Why has the doc not run FREE T3 and FREE T4. You can have a low TSH and NOT be hyperthyroid.

What was your rate of uptake? You had the RAIU, right?

[namaste]

Here are the symptoms/tests I've had:

Symptoms:
-25 lb weight loss in 12 months
-Rapid heart rate, tachycardia (resting heart rate in bed, 105)
-Depression
-Anxiety, panic attacks (or what feels like that) accompanied by nausea/diarrhea
-Debilitating PMS;
-mood swings
-Weakness, esp with stairs
-Sleep issues (have to use a sleep aid almost every night. Feel exhausted at bedtime, but have a hard time getting to sleep)
-Hair loss; brittle; I grayed very early. In my 20's. Now I'm totally white (save but for the clairol)
-Swallowing- food hard to get down, feels like something in the way
-Low grade fevers;
-Sweat easily, warm hands
-Muscle fatigue in legs
-Fatigue mid-afternoon
-Easy bruising

TESTS

TSH: .43 (lab range .49-4.67) Low
Thryoglobulin Antibodies: <20 (lab range <20)
Peroxidase Antibodies: <10 (lab range <35)
T3 Uptake: 35 (lab range 22-35%)
T4 Total (Thyroxine): 7.9 (lab range 4.5-12.5)
Free T4 Index (T7): 2.8 (lab range 1.4-3.8)
Thyroid Scan and Uptake: @ 6 hours- 33% (lab range 4-20) High
@24 hours- 44% (lab range 8-32) High

MORE TESTS

Thyroid Stimulating Immunoglobulin (TSI Antibodies): 227% (lab range 0-139) High
Total T3: 103 (lab range 80-200)
Free T4: .87 (lab range .60-1.65)
Echo Cardiogram: Normal

Very frustrated. On second endo. She has run more tests, but no treatment thus far. I am gearing up to go on some depression meds again, cause I feel I can't keep living this way. I believe I've had thyroid symptoms for years and years. But just had first dx of something "off" back in September.

I'm starting to wonder if I should just go outside of my area, or even to Mayo in Arizona.

I'm a single mom of three and can't keep doing this. I need me... they need me.

[Andros]

Here are the symptoms/tests I've had:

Symptoms:
-25 lb weight loss in 12 months
-Rapid heart rate, tachycardia (resting heart rate in bed, 105)
-Depression
-Anxiety, panic attacks (or what feels like that) accompanied by nausea/diarrhea
-Debilitating PMS;
-mood swings
-Weakness, esp with stairs
-Sleep issues (have to use a sleep aid almost every night. Feel exhausted at bedtime, but have a hard time getting to sleep)
-Hair loss; brittle; I grayed very early. In my 20's. Now I'm totally white (save but for the clairol)
-Swallowing- food hard to get down, feels like something in the way
-Low grade fevers;
-Sweat easily, warm hands
-Muscle fatigue in legs
-Fatigue mid-afternoon
-Easy bruising

TESTS

TSH: .43 (lab range .49-4.67) Low
Thryoglobulin Antibodies: <20 (lab range <20)
Peroxidase Antibodies: <10 (lab range <35)
T3 Uptake: 35 (lab range 22-35%)
T4 Total (Thyroxine): 7.9 (lab range 4.5-12.5)
Free T4 Index (T7): 2.8 (lab range 1.4-3.8)
Thyroid Scan and Uptake: @ 6 hours- 33% (lab range 4-20) High
@24 hours- 44% (lab range 8-32) High

MORE TESTS

Thyroid Stimulating Immunoglobulin (TSI Antibodies): 227% (lab range 0-139) High
Total T3: 103 (lab range 80-200)
Free T4: .87 (lab range .60-1.65)
Echo Cardiogram: Normal

Very frustrated. On second endo. She has run more tests, but no treatment thus far. I am gearing up to go on some depression meds again, cause I feel I can't keep living this way. I believe I've had thyroid symptoms for years and years. But just had first dx of something "off" back in September.

I'm starting to wonder if I should just go outside of my area, or even to Mayo in Arizona.

I'm a single mom of three and can't keep doing this. I need me... they need me.

You are very hyperthyroid and anti-d's will not help this. It is essential that you find a doctor to put you on antithyroid meds and a beta blocker with the possibility of RAI or ablation (surgical removal) in the near future.

This is ridiculous as your life is in danger.

Thyroid Storm, just in case. If this happens, go to ER fast.......
http://www.clivir.com/lessons/show/thyroid-storm-symptoms-causes-and-treatment.html

I had a thyroid storm and almost died so I know whereof I speak.

Sending prayers and caring thoughts to you. You do not need an endo, any Internist, GP, DO can help you. You must get medical intervention before it is too late. Your organs can become permanently damaged.

[namaste]

Yeah, except two endos now say I am NOT hyperthyroid.

They keep looking to the TSH (said it needs to be below .10) and my T3, T4 as "normal".

My family doc IS an osteopath. He's the one that ordered the RI uptake. He said I had Grave's and referred me on to an Endo. He did not want to treat me with any meds.

My newest endo is running another round of tests- including something (I forget now what) that may indicate my TSH is not registering what it could/should be.

She said another T4, some more andrenals, prolactin... she's even measuring the amount of dopamine and seratonin in a 24 hour urine catch test.

I am watching for thyroid storm symptoms.

I just want to feel better. It seems like it's been a long time...

[lavender]

It looks like they keep running a total T3 on you instead of Free T3, which i s more accurate.

I would ask the docs if they can put you on a beta-blocker to slow down your heart rate. I also had a thyroid storm which I feel could have been prevented with anti-thyroid meds. Your symptoms sound mighty suspicious to me.

[namaste]

No, they ran that:

Total (Free) T3: 103 (lab range 80-200)

[lavender]

Now I am confused because I thought Total T3 and Free T3 were different tests:

Triiodothyronine (T3) is a thyroid hormone that circulates in blood almost completely bound (]99.5%) to carrier proteins. The main transport protein is thyroxine-binding globulin (TBG). However, only the free (unbound) portion of triiodothyronine (free T3) is believed to be responsible for the biological action. Furthermore, the concentrations of the carrier proteins are altered in many clinical conditions, such as pregnancy.

In normal thyroid function, as the concentrations of the carrier proteins changes, the total triiodothyronine level also changes, so that the free triiodothyronine concentration remains constant. (In an abnormally functioning thyroid, this is not necessarily so). Measurements of free triiodothyronine (Free T3) concentrations, therefore, correlate more reliably with your clinical status than total triiodothyronine (T3) levels.
http://thyroid.about.com/cs/testsforthyroid/a/freet3.htm

[namaste]

When I researched it on the internet, it said "Free T3" is also known as "Total T3". Made it sound like different labs use different names.

[namaste]

http://www.labtestsonline.org/understanding/analytes/t3/test.html

[namaste]

No... you know... the more I read... the more I think you are right. I think the Free T3 is separate from total. At least I think. I go into the lab tomorrow and I will ask for an explanation then and make sure I have that one!