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Thyroid question...anyone have a goiter but normal tests?


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#1 Tree House Academy

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Posted 16 August 2009 - 02:34 PM

I have had a goiter, that I know of, for the last almost 6 years. However, my thyroid tests always come back normal. I know that they usually just test my TSH (which is not enough), but I have also, in that 6 years, had the T3 and T4 tested. My TSH always runs on the lower end of the scale (0.7 on a scale of 0.3-5.25). I have never been "diagnosed" with anything other than the goiter.

Over the last 3 months, I have been having strange symptoms and when I did a search for them. thyroid came up immediately. I called my doctor and went to see him Friday. He felt my thyroid and his comments were that it was "diffusely enlarged" (meaning the whole thing and not just one side or the other), no lumps on either side were felt. When I asked him if it was "hard" his comment was "not particularly"...whatever that means. :( For my own sanity, he is sending me for an ultrasound and some bloodwork. However, I noticed that the tests he ordered are just TSH and T4. I have no idea why he isn't doing the T3. :(

Anyway, he made one other comment to me that I thought was strange. He said that it could just be the way my thyroid was made. When I looked around online (bad, I know), I couldn't find anything about a "goiter" being just the way your thyroid was made.

So...if anyone has any great advice or a story to share about a thyroid that is diffusely enlarged, with normal numbers, please do. I know this is a common problem for women so I thought maybe someone could help. :)

Edited by Tree House Academy, 16 August 2009 - 10:00 PM.


#2 joannqn

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Posted 16 August 2009 - 02:50 PM

I'm in a similar boat. I have a goiter, my TSH is normal, my T4 is normal, but my T3 is high. This was during my recent pregnancy. The endocrinologist says it is ok for my T3 to be high as long as my TSH is fine. I go back on Monday for his interpretation of the blood I gave last week...to see if there's anything different now that I'm no longer pregnant.

#3 AmeliaJade

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Posted 16 August 2009 - 02:57 PM

I'm not sure how much this will help. But there is my story.

In 2000, just after my first son was born they found nodules on my thyroid. I had gone in complaining of being dizzy. That was the first of many symptoms to come. They tested my thyroid hormone levels and said it was fine. However, the nodules multiplied and grew. I was sent for a fine needle biopsy which came back negative or inconclusive. Many ultrasounds were done. In 2004, after complaining of a myriad of symptoms that included muscle and joint pain, fatigue, among other things, I was told I had fibromyalgia. However, I've always wondered because my symptoms match up to thyroid issues.

We moved to Vegas in 2007. Since that time I've been to two ENTs and two endocrinologists. The nodules have continued to grow. I've had so many ultrasounds and fine needle biopsies that I've lost count. This year I was diagnosed with Hashimoto's disease which basically means my body is attacking my thyroid. My symptoms match up perfectly with the symptoms of hashimoto's but guess what? My doctor's still maintain my thyroid hormone levels are normal and that Hashimoto's is not causing my symptoms. When I ask about my symptoms they shrug and then change the subject.

After 9 years of dealing with all of this I go in next month to have the left side of my thyroid removed. I have two large nodules on that lobe that are pressing into my airway and causing it to curve. They have no choice but to remove that half of my thyroid. Once it is out they will look at it for signs of cancer and depending on what they find they may remove the right side as well.

The things is, I have had every test under the sun. I have been diagnosed with a disease. They are removing my thyroid and yet I cannot get a straight answer concerning my symptoms.

I've had bouts of depression due to so many years of dealing with this and getting no answers. I've seen so many doctors it is crazy and I've seen some terrible ones that have only made the situation that much worse.

I'm not alone. Seek out any support groups on thyroid issues and you'll find similar stories. It is a long, frustrating road with few answers. I don't wish this on anyone.

I would seek out a different doctor. A goiter is not just how your body was made. That is a ridiculous statement. It is possible to simply have multi-nodule goiter. That is common, especially in women. And could account for an enlarged thyroid with normal hormone levels. But a serious doctor would look at them through ultrasound, uptake scans or fine needle biopsies to rule out cancer. You don't just shrug and dismiss it as "I guess that is just how you were made." Can you see a doctor saying that to someone with a lump in their breast? 9 times out of 10 thyroid goiters are benign but do you want to be that 10th person and just have it ignored. I know I wouldn't. And even with a simple goiter most doctors recommend you have an ultrasound done every six months to year just to make sure there is no growth.

You don't mention what kind of symptoms you have but I will tell you that I manage mine with diet and exercise. I force myself to move because it makes me feel better. I watch my sugar intake and avoid processed foods as much as possible. This always lessens my symptoms. I do not take any kind of medication....so far.

#4 gingersmom

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Posted 16 August 2009 - 03:06 PM

I have had goiters on my thyroid for the past 28 years.

Starting at age 16 I went in twice a year to be checked, then it became once a year.

I only started on thyroid medicine 2 years ago.

My mother also was found to have goiters but is not on thyroid medicine.

#5 Heather in OK

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Posted 16 August 2009 - 03:44 PM

Long story short...

I have nodules on both sides of my thyroid and all of my labs came back with normal levels and the biopsy was benign. I decided against a thyroidectomy and started seeing a herbalist. What she had me on helped my symptoms (i.e. lack of energy) but never really touched the nodule swelling.

Then I switched to a naturopath. The homeopath she has me on is great!!!! It helps both my symptoms and the swelling. I started in March taking a dose 2x/day and now I'm down to just needing it every other day. So here in a few months I should be able to wean off of it a bit more.

#6 Tree House Academy

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Posted 16 August 2009 - 06:30 PM

I would seek out a different doctor. A goiter is not just how your body was made. That is a ridiculous statement. It is possible to simply have multi-nodule goiter. That is common, especially in women. And could account for an enlarged thyroid with normal hormone levels. But a serious doctor would look at them through ultrasound, uptake scans or fine needle biopsies to rule out cancer. You don't just shrug and dismiss it as "I guess that is just how you were made." Can you see a doctor saying that to someone with a lump in their breast? 9 times out of 10 thyroid goiters are benign but do you want to be that 10th person and just have it ignored. I know I wouldn't. And even with a simple goiter most doctors recommend you have an ultrasound done every six months to year just to make sure there is no growth.


Gosh, your story sounds very frustrating! I am so sorry.

Per the quote above, I must have mis-stated my doctor's plans. He IS having me get an ultrasound as well as some bloodwork. I don't have any nodules or lumps for them to biopsy (not that can be felt), my thyroid is just overall enlarged (goiter).

The "symptoms" I have range from times when I feel very "hyperthyroid" to times when I am very "hypOthyroid." I go back and forth from depressed, fat, moody to anxious and skinny (and moody! LOL). When I went off the Lexapro, I started getting dizzy spells. Before I even stopped the med, I was noticing fatigue as well as not feeling rested after a good night's sleep. That is actually part of the reason I stopped the Lexapro - I thought it could have something to do with the problem. Since stopping, I have had hard withdrawals and a hard re-adjustment. However, I am definitely feeling better now than I have in the last few months.

I go for the bloodwork tomorrow and they will call me to let me know when the ultrasound is scheduled. Thanks again for sharing your story and I wish you the best!

#7 AmeliaJade

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Posted 16 August 2009 - 06:37 PM

Gosh, your story sounds very frustrating! I am so sorry.

Per the quote above, I must have mis-stated my doctor's plans. He IS having me get an ultrasound as well as some bloodwork. I don't have any nodules or lumps for them to biopsy (not that can be felt), my thyroid is just overall enlarged (goiter).

The "symptoms" I have range from times when I feel very "hyperthyroid" to times when I am very "hypOthyroid." I go back and forth from depressed, fat, moody to anxious and skinny (and moody! LOL). When I went off the Lexapro, I started getting dizzy spells. Before I even stopped the med, I was noticing fatigue as well as not feeling rested after a good night's sleep. That is actually part of the reason I stopped the Lexapro - I thought it could have something to do with the problem. Since stopping, I have had hard withdrawals and a hard re-adjustment. However, I am definitely feeling better now than I have in the last few months.

I go for the bloodwork tomorrow and they will call me to let me know when the ultrasound is scheduled. Thanks again for sharing your story and I wish you the best!



I tend to refer to goiter and nodule as being the same thing only because that was my original diagnosis--multi-nodule goiter. I have nodules on an already enlarged thyroid. I see "goiter" and think "nodules". I need to remember that isn't always the case. Goiter and multi-nodule goiter can be quite common and many people diagnosed have completely normal hormone levels.

I wish the best for your bloodwork results and ultrasound. Hopefully you'll get some quick answers and it won't drag out for a decade!! Haha!

#8 Tree House Academy

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Posted 16 August 2009 - 08:02 PM

Could your doctor feel the nodules on your goiter or was that determined by ultrasound? My doctor told me the the ultrasound would tell him what type of tissue was in my goiter and he named 3 types - one being the multi-nodule (benign), one being a simple goiter (just enlarged), and one having cancer cells (apparently they tend to "stack up" and cause the nodules though). Some people also have small nodules that can't be felt, from what I have read.

I just wish I had gotten an ultrasound 6 years ago when the first doc noticed it. My history with docs and my thyroid is that one will feel it and say it is enlarged, run the blood tests, and tell me I am fine. Others have felt it and said it was just "normal" for me and it didn't feel like anything to worry about. Good grief! Can you say, "CONFLICTING??"

#9 Pamela H in Texas

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Posted 16 August 2009 - 08:44 PM

If you have a TSH of 7, your thyroid tests aren't normal. If you have symptoms, your thyroid test wouldn't even be considered normal at 4. If you have a thyroid disorder, anything over 1 could be problematic! I would speak to an endocrinologist.

#10 chiguirre

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Posted 16 August 2009 - 08:55 PM

I have a multinodular goiter, but I have normal thyroid levels and no symptoms. After a "just in case" biopsy and semi-annual ultrasounds, my endocrinologist just does a blood test and quick check every 6 months. If I did develop symptoms, I would insist on a more thorough investigation of the problem.

#11 Wyndie

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Posted 16 August 2009 - 08:59 PM

I highly recommend the book Iodine: Why you need it, why you can't live without it http://www.amazon.co...50474140&sr=8-1

All cells in the body contain iodine receptors with the thyroid needing the most. We get no iodine in our normal American diet and it can be replaced by any of the thiol group - which is very common in America. Sometimes goiters are caused by an iodine deficiency and not picked up by testing. This was the best book I ever read to explain thyroid problems.

#12 Tree House Academy

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Posted 16 August 2009 - 09:59 PM

If you have a TSH of 7, your thyroid tests aren't normal. If you have symptoms, your thyroid test wouldn't even be considered normal at 4. If you have a thyroid disorder, anything over 1 could be problematic! I would speak to an endocrinologist.



Oh goodness....I stated that wrong too! Mine is .75 NOT 7.5. I need to go change that right now. OOPS!

#13 Tree House Academy

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Posted 16 August 2009 - 10:01 PM

I highly recommend the book Iodine: Why you need it, why you can't live without it http://www.amazon.co...50474140&sr=8-1

All cells in the body contain iodine receptors with the thyroid needing the most. We get no iodine in our normal American diet and it can be replaced by any of the thiol group - which is very common in America. Sometimes goiters are caused by an iodine deficiency and not picked up by testing. This was the best book I ever read to explain thyroid problems.



Thank you for the recommendation. I will order it! :)

#14 Tree House Academy

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Posted 17 August 2009 - 08:36 AM

Anyone else have any advice? :)

#15 susie in tx

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Posted 17 August 2009 - 09:54 AM

I've been having hypothyroid issues for a long time, just didn't know that is what they were. Last week, my TSH was finally high enough that my doctor prescribed meds.

Of course, then I had to go and do research...

http://www.stopthethyroidmadness.com is a great site. I am still reading and have decided to either ask my current doctor for more tests or get a new doctor. This thyroid issue doesn't seem to need blood tests that indicate a problem, even when there is one.

<sigh>

I also did a search for progesterone and thyroid on google and found quite a few interesting hits. This all seems to be inter-related, as many hormone issues are.

Actually, I was just going to get on here and ask a question about thyroid. Guess I'll just sub here and see what I can find out.

Edited by susie in tx, 17 August 2009 - 10:25 AM.
changed the word good to google. i will learn to type one day.


#16 Veritaserum

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Posted 17 August 2009 - 10:14 AM

Find a different doc if he won't order all the tests. I've got Hashimoto's Disease, which attacks my thyroid and makes it enlarged. I've been on Synthroid for 6 months now and it makes a huge difference!

#17 Tree House Academy

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Posted 17 August 2009 - 10:19 AM

I may have to find another doctor. :( I am going to wait and see how this round goes, and hopefully get some answers. If we come up with a dead end, I am definitely going to seek further treatment. I know that I have some of the signs and symptoms. I think Hashimotos is what I have, but I could be wrong. It is just the one that seems to swing back and forth and that is what I do. It is really tough to get thyroid stuff diagnosed though. I don't know why the doctors aren't more knowledgable about this considering it affects so many people! I was reading yesterday that 50% of women over 50 would have a thyroid issue of some sort. That is 1 in every 2 women over 50! If that is true, that is a lot of people!

#18 Katie.Louise

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Posted 17 August 2009 - 11:54 PM

I have been having hypothyroid problems for several years too. I have recently read Dr. John Lee's What your Dr. may not be telling you about menopause. I am not old enough for menopause (35), but it totally hit the nail on the head for me. I have been taking progesterone for 7 mos or so and it has helped with some symptoms. But after reading his book, I will try taking more for a couple of months and see how it goes. It is very interesting how progesterone will affect thyroid function.

It gets so old going to doctors that don't have enough experience/knowledge to help. I also am a big fan of Doug Kaufmann's books The Fungus Link. His site is: www.knowthecause.com
You can also watch the week's episodes if you don't get it locally.

Hope this helps some,
Katie

#19 Tree House Academy

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Posted 18 August 2009 - 10:14 PM

My progesterone has been out of whack for a long time now. Unfortunately, I can't take hormone pills (not bc anyway) because of a genetic predisposition to strokes. My great-grandpa had one at 29 years old and my grandmother had one in her 60's. :( I actually wonder about thyroid meds and risk of stroke. Is it similar to other hormonal replacement meds?

#20 Katie.Louise

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Posted 18 August 2009 - 11:13 PM

My dr. told me he didn't want to bump my up from 60mg to 90mg because it can cause your heart to stop and other things. I was taking Armour thyroid, which is a more natural form. I wouldn't take Synthroid (sp?) because it is synthetic, not to mention the risks associated with it. I am no longer taking it and trying to work on the progesterone issue. The 60mg was not changing anything for me, even after several months.

It seems like throid meds may not be an option for you either.
Katie

#21 Tree House Academy

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Posted 18 August 2009 - 11:25 PM

My dr. told me he didn't want to bump my up from 60mg to 90mg because it can cause your heart to stop and other things. I was taking Armour thyroid, which is a more natural form. I wouldn't take Synthroid (sp?) because it is synthetic, not to mention the risks associated with it. I am no longer taking it and trying to work on the progesterone issue. The 60mg was not changing anything for me, even after several months.

It seems like throid meds may not be an option for you either.
Katie



"Make your heart stop." Boy, that is encouraging. LOL Reading the insert that comes with 99.999% of medicines is just SCARY.


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