Normal TSH, lump in throat

[dh2700]

I went to my GP Jan. 17 for what I thought was a swollen lymph node.  My neck hurts and I feel something pressing on my thoat and esophagus.  Treated with a round of antibiotics. They didn't help.  On follow up GP scheduled a CT of neck. CT showed areas of 'deminished density in both the right and left hepatic lobes measuring less than 5mm in diameter'.  Then I had an ultrasound: right lobe 5.9x1.5x1.8 cm and left 5.4x1x1.8 cm.  A few tiny cysts in each lobe measuring 2 - 5 mm on left and up to 6x8 at the midright lobe.  No solid nodule demonstrated.  Essentially negative exam.  So the GP handed me off to the ENT.  The ENT said he didn't think my thyroid was the problem did some other blood work, a barium esophogram (which was negative) and told me I was fine.  When I feel like I'm struggling for air I don't think I'm fine.  I listed below my blood work results for what I've had done.  All doctors say that all my thyroid bloodwork is normal.
TSH 1.20 acceptable range(.34-4.82); Calcium 8.3 (8.5-10.1); Free T4 0.8 (0.6-2.0), Thyroid Antibody Panel Microsomal AB <10 IU/mL(Less than 35); Thyroid Antithyroglobulin AI <20 IU/mL(less than 20)
Can anyone give me any advice on what kind of doc to see next?

[venora]

Get an endocrinologist that specializes in thyroids.then go from there.If you are haveing trouble breathing and swallowing I would consider getting the things taken out.
I ended up having a sub sternal goiter taken ouut and they found cancer at the pathology.
Good luck and let us know how it goes.
Love Venora

[KBo13]

After they removed my Thyroid and dosed me with Iodine 131 they said my blood work came back showing no trace of thyroid cells.  They said I was pretty much cancer free.  A year after the TT they removed a 3cm tumor that turned out to be Thyroid Cancer along with 32 lymph nodes two of which were pre-cancerous.  The lump had been present with they removed my Thyroid but they said at the time it was a cyst.  The moral of this story is never trust blood work, go with your instincts and see another Doctor and make them listen and attend to your concerns.

[Justicemom]

You need to get into an endocrinologist as soon as possible...sometimes it takes awhile to get the appointments with them, but they know all about thyroids.  

[worried§waiting]

I am confused-- they removed your whole thyroid but saw what they thought was a cyst? where did they see it? in your throat/neck area? Where were these later multiple nodules? How/where were they attatched if no thyroid?

[utahmomma]

I know this is probably scaring the pants off of you and I'm sorry.  Many of us have been through similar things so we speak with passion from the heart.

You are going to hear from a disproportionately large number of thyroid cancer survivors here - it's kind of where we hang out - so don't think that all thyroid nodules are cancerous, okay?  Actually 85-95% (depending on which stats you read) of thyroid nodules are completely benign.

However many of us are in the minority.  Personally my family has a huge, bizarre, case of thyroid cancers.  We have the supposedly "non-hereditary" thyroid cancer (papillary carcinoma) in large numbers.  Now just so you know, I am the oldest and I was 37 when diagnosed - the youngest with cancer was 24.  There are five daughters in the family and four of us have papillary carcinoma - the other's was "precancerous" as was my (then) 16 year-old daughter's.  *ALL* of us had normal labs.

There is a very wide variety of endocrinologists out there - ranging from horrible to excellent (just ask us our horror stories)  :-)  Many, many endocrinologists do NOT specialize in thyroid conditions - they focus on diabetes.  Contact your hospital and ask your doctors to find out who is the *expert* in thyroid conditions.  Then beg or whatever it takes to get in to see him/her.  I've found it really helps if you speak directly with the doctor's nurse and explain all you have been through (mention how scared/concerned you are) and beg to be worked into the schedule.

Hang in there - no matter what you've got some great people here who have Been There, Done That and will help you get through anything.

[dh2700]

Thanks for all the comments.  There is one endo in my area and he is listed on one of the other thyroid websites. I just didn't know what to do when both GP and ENT didn't think it was anything to be concerned about.

[KBo13]

In the beginning I had two masses in my throat.  One was in my thyroid and the other was to the left of it.  From the very first the Endocrinologist said the 2nd mass was a Brackel Clif Cyst.  I went to the Doctor because I was sick, my throat hurt.  They said I had an infection and treated me with antibotics and then removed my thyroid.  They were all surprised when the mass in my thyroid turned out to be cancer, I guess because Thyroid Cancer is very rare.  I read somewhere that only 1% turns out to be cancer. Some part of me knew that the 2nd mass was a tumor as well but I listened to the "experts" and believed them when they said it wasn't a tumor.

Once they said I was cancer free they decided to remove the "cyst" because it still hurt at times.   I had a Radical Neck Disection a year ago and they removed the 2nd mass, again they were surprised that it too was Thyroid Cancer growing in the lymph node.  My point to dh2700 was to listen to her body and make a Doctor listen as well.  I had that 2nd tumor in my body a year longer that it should have been.  My last CT Scan shows two "spot" in my lung.  I am scheduled for a PET Scan to check them out.  I can't help but feel that I wouldn't be so worried if they had done the whole job from the very beginning and they might have if I had only voiced my concerns.

Best of Luck to you dh2700.

[dh2700]

Thanks for the support.  I'm calling my gp tomorrow to get a referral to the endo.  I know it will probably a while, but I'll feel better hearing what the endo has to say.