Newbie with Goitre question

February 1, 2006

Get your antibody level in your blood checked.

All I can say aussi jane, is that all the way to surgery, my lobes the

size of tangerines, and they usually are the size of tip of thumb to

first knuckle, part of one was starting to die and had turned to mush,

3 docs told me they were close to dying, There was a small part in each

one, churnin out thyroid hormone as fast as they could. Adn, all the

way up to surgery, my thyroid blood levels came back normal. Bllod

levels do not come close to telling the whole picture. Get the babies

imaged. Ultrasound, then a Thyroid Uptake Scan - this shows what part

of the thyroid isn't functioning and what parts are hyper. I think it

shows if there is one big mass, or multiple nodules. Biopsy's can even

be non conclusive. I had big areas of cancer on one nodule, 6 sticks

on eahc lobe, and none of it got for sure cancer. it did get stuff

that was abnormal.

If there's anything I learned from this experience - get lumps imaged.

Get taught how to examine your neck from your docs.

When hypo, voice cords thicken and we get a lower, hoarser voice.

You have copies of all procedures done on you, the results and all

tests done on you, blood included.

>

> Hi, I have had a Goitre all my life - untreated. Blood tests are

> always normal although I haven't had many. One blood test with a

> different Dr and lab last year showed something but no treatmant was

> given. Now - have extra swelling & pain when I swallow & eat that

> doesn't feel like a simple throat infection. Also a husky voice at

> times. I am slightly tired all the time and lacking energy. I am

> wondering what to do if I see the Dr and the blood tests come back

> normal again. Are there more tests I should be having ? Thanks.

>

February 1, 2006

Print out this page and bring it along

http://www.thyroid.org.au/Information/NormalTSH.html

Ask what your labs are actually showing, request the results with the lab's ranges... If he'll give them to you (I'm assuming you're not in the US, here it's the law that they be given to you upon request). Then post the results here... we can see what is being tested and what the numbers look like... I suspect that the numbers are borderline and he's just decided 'close enough is good enough' and doesn't care that you're dealing with symptoms.

Topper ()

Dayton, MN, USA

On Wed, 01 Feb 2006 10:28:53 -0000 "aussi_jane" writes:

Hi, I have had a Goitre all my life - untreated. Blood tests arealways normal although I haven't had many. One blood test with adifferent Dr and lab last year showed something but no treatmant wasgiven. Now - have extra swelling & pain when I swallow & eat thatdoesn't feel like a simple throat infection. Also a husky voice attimes. I am slightly tired all the time and lacking energy. I amwondering what to do if I see the Dr and the blood tests come backnormal again. Are there more tests I should be having ? Thanks.

February 1, 2006

Hi aussi_jane,

I would be asking for these tests: Free T4, Free T3, and the antibody

tests to start with. If the doc is open to it I would be asking for an

Adrenal test as well.

Gossimer

>

> Hi, Here are my results . TSH = 1.4. Lab normal is (0.5 - 3.7).

>

> Don't have my results from previous lab where the Dr said 'abnormal'

>

> I was told 30 years ago that I was 'borderline'. I am now 46. I

> suspect that age is worsening the borderline Thyroid?

>

> Are there any other Scans that I should have ? Or blood tests ?

>

February 1, 2006

Hi aussi_jane,

I would be asking for these tests: Free T4, Free T3, and the antibody

tests to start with. If the doc is open to it I would be asking for an

Adrenal test as well.

Gossimer

>

> Hi, Here are my results . TSH = 1.4. Lab normal is (0.5 - 3.7).

>

> Don't have my results from previous lab where the Dr said 'abnormal'

>

> I was told 30 years ago that I was 'borderline'. I am now 46. I

> suspect that age is worsening the borderline Thyroid?

>

> Are there any other Scans that I should have ? Or blood tests ?

>

February 2, 2006

Hi, I am finally on the trail to collecting my blood test results from

a year ago. The one that the Lung Dr said was 'low'. My GP has not

been testing for Thyroid - even though I have a Goitre. Is that normal

? However, another Endocrine Dr also just tested TSH. Is that normal

or should I look for another Endocrine Dr ! I went to see this Dr for

Hypoglycemia symptoms & have been diagnosed as Reactive Hypoglycemic.

Does that link to Thyroid. ( it must otherwise he wouldn't have done

TSH ?) .

I have just done the adrenal quiz and am 88%. I have had this Goitre

for 30 years. Struggled all my life with vague tiredness, fibromyalgia

pain etc. Could the Drs have not been looking at the right tests for

all those years ? I am so puzzled.

February 2, 2006

very possible. doctors as unlikely as we want to admit or admit more of, are human and aren't (sadly) the health gods they need to be.

you should have at least 1 blood test every month or two when you are getting your dosage leveled and every few months after that to make sure they are regulated. your doc should do something about your goiter. also in the u.s. as someone stated, you have to be given a copy of your labs if you ask for them (mine just mails them out to me) so get a copy of your med. records. you'll probably have things in there from childhood. take that folder once you get it to another doctor for a second, third, fourth or fifth opinion if you need it.

look for docs that check t3, t4, free t3, free t4, antibodies, and all endocrine hormones, if they don't hang up the phone or fire them. remember, this is your life... while it might be convenient for them to tell you to 'come back every x months'... it's not convenient for you to wait if you don't know why.

find other endos if you must... make sure they specialize in thyroid/endocrine care as not all do and some sadly seem to have about as much knowledge of it as your current endo.

you can also do home tests and take the results to your doc. they may not like it, but... it might get you treated better & taken more seriously. also, write down all of the symptoms you are currently having and take them to your next dr's appt. i did that and that's when my doc finally listend to me. now every time i go i take a list of all the tests i want to be checked for and everything else.

if you haven't learned to listen to your body & it's signals now is a good time to start doing so. you are questioning your doc because you know they may be a good doc, but aren't THE doc for you.

good luck,

Newbie with Goitre question

Hi, I am finally on the trail to collecting my blood test results froma year ago. The one that the Lung Dr said was 'low'. My GP has notbeen testing for Thyroid - even though I have a Goitre. Is that normal? However, another Endocrine Dr also just tested TSH. Is that normalor should I look for another Endocrine Dr ! I went to see this Dr forHypoglycemia symptoms & have been diagnosed as Reactive Hypoglycemic.Does that link to Thyroid. ( it must otherwise he wouldn't have doneTSH ?) .I have just done the adrenal quiz and am 88%. I have had this Goitrefor 30 years. Struggled all my life with vague tiredness, fibromyalgiapain etc. Could the Drs have not been looking at the right tests forall those years ? I am so puzzled.

February 6, 2006

It takes thyroids awhile to grow to where they can be detected upon

palpation, it takes even more time for them to get to the size that

they are visible. It may not have been growing all the 30 yrs, I

haven't got anyone to tell me how long it took for mine to get to

the size it was (tangerine.) Again, it differs on how thin your

neck is, or athletic little fat, or thin but layer of fat etc.

Within the tsh range, 1.4 is on the low end, toward hyper. If I am

remembering correctly, under 1.0 there can be a danger of more

likely to get osteoporosis. I had cancer, thyroid is out, and from

reading on the thyca site, it seems we humans differ in what level

feels best for us. For cancers, it is best to be .01 to .40 Some

are crawling out of their skin at .01, some thrive. Some are

fatigued, mind problems at .40, some do better there. It helps a

lot if you have a dr who will work with you within the range to find

if you feel better at one level other than another, not just look at

the lab numbers and say it/you're ok. As I said, all my thyroid was

dead except 2 small parts churning out juice, and my blood tests

came back in the normal range. Blood tests don't tell the story of

what's going on. Hopefully you will get an Ultrasound and a Thyroid

Uptake Scan (go a bit radioactive) to find out what parts of the

thyroid are working and what parts aren't (cold) if any.

jane

>

> Thanks US Jane ! Yes my 'lump' does show when swallowing, and even

> hurts from time to time. I am sure its not a throat infection. The

> pain feels different. Just scared that the Dr may laugh at me, and

> tell me nothing is wrong. Could a 30 year old Goitre suddenly get

> worse ??

>

> I had a TSH done last year with Endo and it was 1.4 and he said it

was

> normal. ( lab range 0.5 - 3.7). It was fasting. I have read that

> levels can change ( increase) if non fasting.

>

> Another Dr looked at that result and said 'low'. I am confused but

> know now that I have a raspy voice, difficulty swallowing, and more

> swelling. Could all this happen in a year after a 30

year 'dormant' stage.

>

> Thanks ! Aussi Jane

February 6, 2006