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Old 07-30-2010, 10:31 PM   #1
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Unhappy Nodules and swelling and weight gain....oh my.....

I am desperate to find some been there done that advice and thoughts on the next step. Any and all thoughts are greatly appreciated. If you even read this entire message, I also will appreciate you, lol.

So, several months ago, I started gaining weight at an extremely fast rate. To the tune of 10 lbs/month. Within 6 months I had gained over 50 lbs. I have always been smaller and relatively healthy so the weight gain was disturbing. Everyone thought I was pregnant. I went to my doctor several times begging for answers/help. She would draw labs (and told me she did a full thyroid panel) and I would get a call declaring me "just fine". Everything was "normal". This went on for several months, back and forth, no resolution. Then I developed supraclavicular swelling and became more insistent that I get answers. At this point, I started to also feel tightness/pain in the area of my thyroid. I couldn't eat b/c it was making me gag. They relented and ordered an ultrasound of the visable "mass" (swelling, depending on who you ask) above my clavical and of my thyroid. Several weeks later, the results were "normal" according to phone call. They said I had a nodule on my thyroid that appeared benign and didn't address the mass on the right side at all. My MD stated that it "must be normal" since he did not mention it in report. I pushed for more testing and she reluctantly ordered a CT. The CT was "normal" with no mass visualized (we are talking visable swelling) when I once again received a phone call.

At this point I am frustrated. I am going to pay out of pocket to see a resident (cheaper) doctor that I semi-know socially. So, I just requested my labs/radiology reports today. I am not sure what to make of my "normal" and am curious what others who have been there and done that think before I go to see the resident.

So, here goes the medical "stuff". TSH was 3.77 and free T4 was 1.06 in Feb (at the begining of my weight gain issues) and TSH was 2.76 and free t4 was 0.62, she also did a free t3 this time that was 2.8 in May (when my weight had stabilized, holding steady as long as I maintain a strict diet of 1000 cal's/day and exersize, something that is more intense then I have ever done).

My u/s done in June reports a thyriod measuring (on the R side) 5.0x1.5x1.4 cm and (on the L side) 5.0x1.3x1.4 cm. They also report two solid nodules on the right side. One 5x3x5 that "demonstrates some internal flow" and the other 0.8x1.1. My MD declares these "normal" without need for follow up.

The CT (that I pushed for originally since the u/s report never addressed the supraclavicular mass, which was purpose of the u/s to begin with) simply reports that there is no mass noted in the supraclavicular region. It reports various calcific densities of an undertermined signifigance, and states the thyroid demonstrates a "normal" appearance. Again, MD declares this all "normal" and gives a referral for physical therapy to help with the swelling/mass.

The thing I can't get past is that I am symptomatic. This seems to hold no importance. My neck appears larger, to the point htat my 12 yr old keeps asking what is wrong with it. My weight gain is significant (although it has stabilized, I also can not loose the weight I have put on despite best efforts). SOMETHING is wrong. I can feel it. I have radical fluctuations in my blood pressure, which I can "feel" as well. And all I have is a referral to PT. She refuses to do any more thyriod tests. She declares my thyroid "fine". So, I am just curious what others experiences were and if I should push for any further tests when I go to the resident? Any thoughts from any of you????

 
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Old 07-31-2010, 07:21 AM   #2
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Re: Nodules and swelling and weight gain....oh my.....

Quote:
Originally Posted by bmcm2igirls View Post
I am desperate to find some been there done that advice and thoughts on the next step. Any and all thoughts are greatly appreciated. If you even read this entire message, I also will appreciate you, lol.

So, several months ago, I started gaining weight at an extremely fast rate. To the tune of 10 lbs/month. Within 6 months I had gained over 50 lbs. I have always been smaller and relatively healthy so the weight gain was disturbing. Everyone thought I was pregnant. I went to my doctor several times begging for answers/help. She would draw labs (and told me she did a full thyroid panel) and I would get a call declaring me "just fine". Everything was "normal". This went on for several months, back and forth, no resolution. Then I developed supraclavicular swelling and became more insistent that I get answers. At this point, I started to also feel tightness/pain in the area of my thyroid. I couldn't eat b/c it was making me gag. They relented and ordered an ultrasound of the visable "mass" (swelling, depending on who you ask) above my clavical and of my thyroid. Several weeks later, the results were "normal" according to phone call. They said I had a nodule on my thyroid that appeared benign and didn't address the mass on the right side at all. My MD stated that it "must be normal" since he did not mention it in report. I pushed for more testing and she reluctantly ordered a CT. The CT was "normal" with no mass visualized (we are talking visable swelling) when I once again received a phone call.

At this point I am frustrated. I am going to pay out of pocket to see a resident (cheaper) doctor that I semi-know socially. So, I just requested my labs/radiology reports today. I am not sure what to make of my "normal" and am curious what others who have been there and done that think before I go to see the resident.

So, here goes the medical "stuff". TSH was 3.77 and free T4 was 1.06 in Feb (at the begining of my weight gain issues) and TSH was 2.76 and free t4 was 0.62, she also did a free t3 this time that was 2.8 in May (when my weight had stabilized, holding steady as long as I maintain a strict diet of 1000 cal's/day and exersize, something that is more intense then I have ever done).

My u/s done in June reports a thyriod measuring (on the R side) 5.0x1.5x1.4 cm and (on the L side) 5.0x1.3x1.4 cm. They also report two solid nodules on the right side. One 5x3x5 that "demonstrates some internal flow" and the other 0.8x1.1. My MD declares these "normal" without need for follow up.

The CT (that I pushed for originally since the u/s report never addressed the supraclavicular mass, which was purpose of the u/s to begin with) simply reports that there is no mass noted in the supraclavicular region. It reports various calcific densities of an undertermined signifigance, and states the thyroid demonstrates a "normal" appearance. Again, MD declares this all "normal" and gives a referral for physical therapy to help with the swelling/mass.

The thing I can't get past is that I am symptomatic. This seems to hold no importance. My neck appears larger, to the point htat my 12 yr old keeps asking what is wrong with it. My weight gain is significant (although it has stabilized, I also can not loose the weight I have put on despite best efforts). SOMETHING is wrong. I can feel it. I have radical fluctuations in my blood pressure, which I can "feel" as well. And all I have is a referral to PT. She refuses to do any more thyriod tests. She declares my thyroid "fine". So, I am just curious what others experiences were and if I should push for any further tests when I go to the resident? Any thoughts from any of you????
Run don't walk to another doctor. Your thyroid is not of normal size it is slightly enlarged with nodules. a normal thyroid is supposed to be 4-4.8 x 1.0-1.8 x 0.8-1.6cm. It had taken a lot of research on my part to find these numbers but was given to me by a doctor(family friend who is a radiologist).

While most doctors will not biopsy a nodule before it is 1.0-1.5cm in size it would be prudent to keep an eye on them to see if they grow. I didn't see if you meant cm or mm on the size of the nodules. 95% of nodules are NOT cancerous so do not jump to conclusions. I personnaly have a complex nodule that was biopsied -- complex meaning there was blood flow through the nodule and it was composed of both live tissue and cyst like material. My general doctor told me to see an ENT -- they sometimes do surgery on the thyroid. I've heard of people having surgery if they are having issues breathing or swallowing and sometimes if the growth of the thyroid is noticible or cosmetic in nature.

Do you have your ranges for your labs? I know there are well informed people on this site that can tell you more about what the test numbers mean if they have ranges. Although some of what I've read on here and in books suggest that you have hypothyroidism because the TSH range should be .3-3.0 even though most labs are not using this new range. I've even seen 2.5 as the high part of the range.

Also if you are getting more blood work done then you might want to see if they will do a thyroid Antibody test. This could point to Hashimoto's, which would cause Hypothyroidism, (more likely with weight gain) or Graves which is more common with Hyperthyroidism(less likely with weight gain). There could be a chance that if you have an autoimmune problem that it could be causing the swelling in your thyroid.

But all in all don't take the fact that your doctor says you're "normal" at face value. What is "normal" especially in blood tests may not be normal for you. There is a posibility that you will have to Dr. shop to find a good doctor but maybe a new doctor will give you some answers.

 
Old 07-31-2010, 09:02 AM   #3
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Re: Nodules and swelling and weight gain....oh my.....

You've already gotten good advice. I can't tell you much about the nodule issues, but your bloodwork is 'off' enough to show you to be hypothyroid, which is likely causing the nodule and goiter problems.

Please post the ranges for your FT4 and FT3 tests. The FT4 of .62 is below the lowest level on most standard ranges. Ranges do vary, but I'm positive that .62 is not "normal" at all. The FT3 would be low in range as well. The TSH in a healthy person hovers around 1.

I hope the resident doctor will recognize your issues. If by chance he doesn't, don't give up. You have obvious thyroid issues that should not be ignored any longer.

 
Old 07-31-2010, 10:10 AM   #4
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Re: Nodules and swelling and weight gain....oh my.....

Boy this sounds all to familar to my story. Here's mine. I'm 32 working mother of 2 children and about a year and a half ago i went to the dr for a regular checkup and told him that i was having terrible headaches and problems swallowing. He looked at my neck and said it may be a little big but we'll watch it. Ordered labs, everyhting nl of course and i was told that we would just watch it. Went back months later, with more symptoms and he still stated that it looked fine. I requested more labs and a ultrasound. At this point i was having problems talking and catching my breath. He ordered the us, got the results back in a week. My thyroid was 6cm on the left and 6.2 cm on the right and also contained a mass in the upper pole of the right side. Obviously i got concerned since the nl size of a thyroid is 3cm on both sides. But the dr still didn't want to do anything unless i was "symptomatic". Is he kidding me? I pushed for a referral to an ent and the ent stated that i needed a tt to get rid of my sympotoms and of course to r/o cancer. I have the sx scheduled for the 12th. I would definetly push harded and request at least a referral to an ent. It was the best decision that i ever made, pursuing the swollen neck i mean. I catch myself asking what if i never pursued it?

 
Old 08-01-2010, 01:06 AM   #5
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bmcm2igirls HB User
Re: Nodules and swelling and weight gain....oh my.....

Quote:
Originally Posted by Keefsgirl View Post
Run don't walk to another doctor. Your thyroid is not of normal size it is slightly enlarged with nodules. a normal thyroid is supposed to be 4-4.8 x 1.0-1.8 x 0.8-1.6cm. It had taken a lot of research on my part to find these numbers but was given to me by a doctor(family friend who is a radiologist).

While most doctors will not biopsy a nodule before it is 1.0-1.5cm in size it would be prudent to keep an eye on them to see if they grow. I didn't see if you meant cm or mm on the size of the nodules. 95% of nodules are NOT cancerous so do not jump to conclusions. I personnaly have a complex nodule that was biopsied -- complex meaning there was blood flow through the nodule and it was composed of both live tissue and cyst like material. My general doctor told me to see an ENT -- they sometimes do surgery on the thyroid. I've heard of people having surgery if they are having issues breathing or swallowing and sometimes if the growth of the thyroid is noticible or cosmetic in nature.

Do you have your ranges for your labs? I know there are well informed people on this site that can tell you more about what the test numbers mean if they have ranges. Although some of what I've read on here and in books suggest that you have hypothyroidism because the TSH range should be .3-3.0 even though most labs are not using this new range. I've even seen 2.5 as the high part of the range.

Also if you are getting more blood work done then you might want to see if they will do a thyroid Antibody test. This could point to Hashimoto's, which would cause Hypothyroidism, (more likely with weight gain) or Graves which is more common with Hyperthyroidism(less likely with weight gain). There could be a chance that if you have an autoimmune problem that it could be causing the swelling in your thyroid.

But all in all don't take the fact that your doctor says you're "normal" at face value. What is "normal" especially in blood tests may not be normal for you. There is a posibility that you will have to Dr. shop to find a good doctor but maybe a new doctor will give you some answers.
I forgot to leave out the (somewhat) relevant info that I am seen on a military hospital and cannot be seen off base without a referral. So, any doctor shopping is out of pocket for me. So, my thyroid is on the larger size? Is the range you provided the same for men and women? Meaning, would you expect a man to be on a larger side then a woman? Honestly, it "looks" bigger to me....and to my children who have asked if there is something wrong with my neck.

I do have ranges for my labs and according to them, I AM "fine". The TSH range is 0.34-4.82. The FT4 is .59-1.17. The FT3 is 2.2-4.4. So, I am on the outskirts of "normal" but I am thinking this just isn't normal for me. I do know (although I don't have the lab results) that my MD mentioned that my TSH was 1 something when it was drawn previously. I have to wonder if I just function better in that range.

I have requested referrals and second opinions several times over the last few months. I am repeatedly denied. My only referral is for physical therapy. I ask what the purpose is and what the benefit might be but they don't have an answer, lol.

I also am thinking I should probably ask for the antibody test. I am sure the resident will be happy to order it and I DO think, after reading more, that it is not a crazy request.

My other question is.....is the school of thought generally to "treat" a patient who still falls within the outskirts of normal if they are indeed symptomatic? Or do the results HAVE to be outside of normal in order to treat?

I really do appreciate all the thoughts you all have given me. It has been a huge help!!

 
Old 08-01-2010, 03:30 PM   #6
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Re: Nodules and swelling and weight gain....oh my.....

I would most certainly ask for the antibody test and maybe even go and see and ent eventhough you may have to pay for it. Most dr's will give you medicare rates if you have to pay for it yourself. My philosophy is a dr should treat the patient symptomatically and look outside the box and pass the normal parameters because only we know our body and when something is wrong, it's just wrong.

 
Old 10-03-2010, 02:09 PM   #7
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Re: Nodules and swelling and weight gain....oh my.....

I have battled the thyroid problem for several years. I have nodules four of them and because a CT scan came back with an idication of something wrong mine was biopysied which came back undiagnostic. For the past two years I get an ultra sound every 6 months to see if they are growing. I was finally put on medication because my levels finally showed something. I see and Endoncronologist and it has helped. One thing what is normal for the general public is not always the case for each individual.

Keep pusing it. I hope you feel better soon

 
Old 04-28-2011, 11:37 AM   #8
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Re: Nodules and swelling and weight gain....oh my.....

my thyroid test result was tsh 2.49 the doctor says this is normal , why do i have all the symptoms of under active thyroid? my mother has it and my daughter also has it . what else can it be ? where do i go from here?

 
Old 05-02-2011, 08:24 PM   #9
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Re: Nodules and swelling and weight gain....oh my.....

Quote:
Originally Posted by twat44 View Post
my thyroid test result was tsh 2.49 the doctor says this is normal , why do i have all the symptoms of under active thyroid? my mother has it and my daughter also has it . what else can it be ? where do i go from here?

 
Old 05-02-2011, 08:33 PM   #10
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Re: Nodules and swelling and weight gain....oh my.....

I understand your frustration with your doctor. I had all the symptoms but my levels were fine according to her. I read somewhere that the problem is what they guidelines say is normal maynot be for someone else. I spent a year and half struggling until finally they dropped enough to be put on medication. I started out with 25 mg and now I am up to 75mg. It seems my levels keep dropping so the medication keeps getting increased. I really wish I would have been given the medication from the start. My cardiologist was shocked that I wasn't. I was diagnosed with hysmotio's (I apologize for the spelling of that) now I am not sure what my diagnoses is. I am having alot of health issues now. They have gotten worse in the past year and half. I often wonder is it because of the thyroid? I will never know. I like you just want to feel normal again. I am tired of swelling, headaches, joint pain, and now this problem with my oxygen levels dropping as I walk. I am on suplemental oxygen and I am only 48! Never smoked in my life and I am not a drinker either. As for my nodules they keep getting checked to see if they grew enough so she can try to get another biopsy. a fear I have because in 2009 a CT scan by my primary Dr revealed that I had cold nodules. This triggered a biopsy of them. Unfortuneately, it came back undiagnostic. She said it was because they are not big enough and so she will not rebiopsy them till they get bigger. So in the mean time I often wonder is it cancer or just my thyroid going bad? I just wish they grow so I can get news that they are not cancerous. I wish thyroid issues would be handled differently. I feel your frustration.

Joanne

 
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