Appointment RE Thyroid

gwenn · March 2008

gwenn · March 2008

It has been a very long time since I've posted. I sure could use your input right now. I for a long time have been trying to get my thyroid problem dx. Well after 2 years of insurance problems I have finally found a doctor. The doctor had me do a hormone test that came back saying my hormones were normal. So she ordered an ultrasound. The ultrasound came back showing that I had a large tumor on my thyroid that was hypervascular and showing spots of calcification. The ultrasound report was sent to me. I looked up all the words I did not understand. Basically they are worried that I have thyroid cancer. I have already seen the endocrinologist who has made an appointment for me to have a biopsy and she has already refered me to a cancer surgeon. But my doctor (my primary) sent me the ultrasound report requesting that I see her after I've seen the endocrinologist. Why does she want to see me? Is this only so that she can explain to me that they are concerned I have cancer? I've already figured that out. What else could she want to see me about?

PuppyFive · March 2008

{{Gwen}} First I would like you to know I am very sorry!

I too have been fighting with doctors over thyroid problems!

last year i had a thyroid MRI doc. found nodules! told me not to worry!(my primary)

NOW My ONC. has had me do Cat scan, that showed problems!

ordered a US that showed I have a very large Lumpy BUMPIES

(this is exactly what the radiologist said too big for US to show them all) My MRI Guided Biopsy was scheduled for this friday!

Please Listen to You Endocrinologist! JMO

Gods Speed Sweet Sister!

I am afraid too!

Puppy

Anonymous · March 2008

I'm sorry, sweetie, that you're going through the cancer scare again. Is there a chance that it's not cancer? If it is, you probably already know how manageable the treatments can be, so hang in there, huh?

As for your primary wanting you back, I'd just assume that s/he is being proactive in wanting to be the point person in coordinating your care. To me, that's a good sign since, as you know, the medical merry-go-around can get very tangled up.

Keep us posted, Gwenn

~Marin

althea · March 2008

gwenn, I am so sorry you're having thyroid issues. I seem to have them also, but so far I don't seem to have anything enlarged. Not that I have one single medical professional who seems to be knowledgeable on thyroid. Is this the ugly stepchild of the glandular family or what?

Perhaps you already know this, but range for 'normal' TSH tests was revised in 2002. It used to be .35 to 5.5. Now it's .3 to 3.0. Most women feel their best at 1.0. Also, basic bloodwork should include a free T-4 test. My TSH was 6.4 two months ago. Three weeks ago is was down to 4.027, which I was told is in the normal range. The information I presented from the association of endocrinologists stating otherwise fell on deaf ears, as did my request for a free T4 test.

<>Then I went through a big learning curve about iodine. I took 3 weeks of supplements hoping for relief from relentless fatigue only to get more disappointment. Now I'm looking to natural healing for help.

<>I really hope you have someone knowledgeable gwenn. It appears women suffer a very long time before getting diagnosed. I've joined one group where a lady complained for years about her thyroid getting enlarged. She was ignored to the point that it grew around her carotid arteries, and then they said, sorry, it's too dangerous to remove now.

The extent of examination my thyroid has received is some TSH tests and doctors feeling my neck with their fingers. They tell me it is not enlarged. I'm curious what you experience when you touch your neck in the area of your thyroid? I can't imagine why your primary doctor wants to see you, unless it's for a lesson in endocrinology. I think my doctors studied thyroids for 10 minutes once upon a time.

acarr · March 2008

Althea,

I agree with you about medical professionals not knowing anything about the thyroid. I suffered with debilitating symptoms before (after much Internet research) finding a doctor who actually thinks out of the box and diagnoses thyroid disease by symptoms, not just blood tests. My TSH was 3.56 and my fatigue was so bad that I could barely drag myself out of bed every morning. Based on my symptoms, along with TSH, Free T4 and Free T3 testing, my doctor treated me for hypothyroidism.

A dear friend of mine had a huge goiter along with other symptoms of thyroid disease. She saw 2 different endocrinologists who told her that her symptoms were not thyroid related because her TSH was normal. One told her she should see a psychiatrist. She was about to give up on getting help until I begged her to see my doctor. She ended up having to have her thyroid removed because of cancer, and is doing fine now.

A good website and message board for thyroid disease is www.thyroid.about.com. They have a top doctor site where you can look in your state for a doctor that will treat you. That's how I found mine. I have to travel 2 hours to see him, but it's well worth the drive. My mom and my daughter see him too. -- Amy

Jellydonut · March 2008

Gwenn,

Remember, it isn't cancer until the pathology says it is.

My thyroid nodule turned out to be benign, after the radiologist reading my MRI (taken for another purpose) wrote metastatic foci 2.2 cm nodule on thyroid. Of course that sent me into quite a tizzy. Even the doctor performing the biopsy thought it was cancerous and suggested (without my asking) to me go to Dr. X because you want to be operated on by the best. Needless to say, I left the biopsy ready to burst into tears. The pathology report stated non-cancerous.

Moral of the story - try not to worry. Get the biopsy and the report, then take it from there.

I hope you're as lucky as I was. Good luck.

Jelly

texas94 · March 2008

Hi Gwenn,

I am both a thyroid cancer survivor and breast cancer survivor- all at the age of 36. The good news is, I've had great outcomes with both. I just wanted to let you know, I had one very large benign nodule and then a few smaller nodules, one of which proved to be papillary carcinoma (.8cm). I know you are scared, but hopefully this will make you feel better- usually IF someone has thyroid cancer, they remove the thyroid and you're pretty much done with it. There are a few types, but the most common type really doesn't recur too much. It's not such a beast as bc is... I hope this makes you feel better and not scared. I'll tell you some more good news- I feel SO much better after having my thyroid removed and now take Armour Thyroid. Apparently my levels were out of whack for years and now that they're on track, I feel great. My best advice for ANY thyroid issues is to find a doctor that will listen to your symptoms and not dismiss you just because your blood tests come back "normal." The best doctors realize that people feel VERY different at the different levels characterized as normal. For instance, I feel my best if my thyroid levels are on the high end of normal. There ARE doctors that will listen. I have had the best luck with my OBGYN who acts as a whole health doctor to his patients. I had terrible luck with endocrinologists and never found one that listened. I really hope your nodules turn out to be benign. Please feel free to ask me questions if you'd like.

EHK

Harley44 · March 2008

Gwenn

{HUGS}

I am sure you will get B9 results from your thyroid tests!

Althea is right about the "new" normal ranges, but MOST drs. DON'T know this.

I have hashimotos thyroid... Hypothyroidism, and I take generic thyroid hormone because my insurance won't cover brand names. I am feeling lots better, but I have my moments, feeling very tired from my thyroid issue. Only now, I never know what is causing the fatigue, since I had bc... then I was SO very fatigued after chemo, but now I seem to be feeling better....

I'll be keeping you in my prayers!
Harley

Appointment RE Thyroid

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