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Old 03-15-2011, 04:20 PM   #1
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hypothyroid symptoms for years neg tsh,t3,t4

I have complained of hypothyroid symptoms for years and tsh always neg. Docs always want to diagnose me with anxiety, depression, and etc. Symptoms getting easily fatigued, dizziness with nausea, tight feeling in neck (like squeezing and tight muscles), food gets stuck when trying to swallow, and always feels like swelling in my neck. My sister and grandma are hypothyroid, dad and grandm have rhumatoid arthritis, I also have endometriosis, and mom diabetic. TSH always comes back in normal range. Sent to ENT because PCP think I have inner ear thing. Day before ENT appt. I found nodule on right side of thyroid. Saw ENT on Friday and scheduled me for u/s on Saturday also ordered T3 and T4. Got call today From ENT office and they said he wants to do u/s with FNA and that my labs were normal. They said there is only one nodule less than 1cm. I'm scared to have the biopsy, I hate needles, but I will have it done. Anyone been through this and what can I expect. I have 4 young children and I am scared to death that it is cancer.

 
Old 03-16-2011, 05:41 AM   #2
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Re: hypothyroid symptoms for years neg tsh,t3,t4

Please do not accept "normal" (aka in-range) as an acceptable answer for your thyroid labs.

"Normal" results does not mean they are YOUR normal.....especially if the results are below mid-range.

Most people have FreeT4 and FreeT3 levels in the upper third of the range, if not higher.

You are legally entitled to copies of your lab results - please post them here and we'll help you interpret them.

It sounds like you are hypothyroid.
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Old 03-16-2011, 08:29 AM   #3
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Re: hypothyroid symptoms for years neg tsh,t3,t4

cd37
Thank you so much for you post. Does it sound like they are going in the right direction with the nodule? I'm scared to death of the FNA. Does it hurt? I was so uncomfortable with just the ultrasound probe on my neck. I will find out my exact # for t3 and t4. My tsh(3rd generation) is 1.2.

 
Old 03-16-2011, 08:48 AM   #4
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Re: hypothyroid symptoms for years neg tsh,t3,t4

Glad I could help

Well, the guidelines for FNA is nodule 1.5cm or larger *but* it is wise to investigate a solitary nodule. Most people develop nodules on their thyroids and don't realize it until investigations "in the area" result in the discovery of them. And, please be comforted in knowing that most nodules are benign.

I had a FNA done on a 1.3cm nodule - the ENT applied a numbing agent - the actual procedure wasn't painful per se but it was uncomfortable mostly from a feeling of pressure.

If you want to be adequately treated for your hypothyroidism, you're going to need to work on your fear of needles. The patients with the most successful outcomes get regular labs (I actually go for labs every 4 weeks since I am trying to "nip things in the bud"....as in, "catch" any changes in my thyroid hormone levels and adjust my meds doses before I develop symptoms.....I do this because it takes so long for symptoms to dissipate after dose adjustments and quality of life is VERY important to me).

Please let us know how things go.
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Old 03-16-2011, 11:55 AM   #5
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Re: hypothyroid symptoms for years neg tsh,t3,t4

T3 =28, T4=8.6, TSH=1.2

 
Old 03-16-2011, 11:59 AM   #6
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Re: hypothyroid symptoms for years neg tsh,t3,t4

Unfortunately, lab values are useless unless the reference ranges are also listed (ranges vary from lab to lab and by geographical area - it's important to see "where" your results "fit" within the ranges) Any chance you can post the ranges?

Also, please check to see if those are "free" results....."plain" T4 and T3 levels are obsolete and do not provide accurate information since the results can be falsely elevated due to binding issues.
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Last edited by cd37; 03-16-2011 at 12:00 PM. Reason: typos

 
Old 03-16-2011, 12:22 PM   #7
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Re: hypothyroid symptoms for years neg tsh,t3,t4

These are plain T 3 (24-35) T4 (4.5-12.5) TSH 3rd gen 1.12 (.40-4.50). Scheduled for FNA 3-30. Is that too long? So tired of dr and staff saying my symptoms can't be related to my thyroid because the nodule is too sm to cause symptoms and all labs normal. I'M SOOO FRUSTRATED. Is this normal?

 
Old 03-16-2011, 12:26 PM   #8
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Re: hypothyroid symptoms for years neg tsh,t3,t4

Also the nurse said I must really be in tune with my body because the nodule isn't big enough to cause problems. I requested antibodies be tested and she said with Hashimoto you have more than 1 nodule or goiter so it couldn't be that. Wonder why we get Dx with depression so much?!

 
Old 03-16-2011, 12:34 PM   #9
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Re: hypothyroid symptoms for years neg tsh,t3,t4

People can have Hashi's without having nodules. And, those that do have nodules can suffer from a hyper-functioning nodule which will cause them to be basically hypothyroid but, as the nodule "throws off" thyroid hormone, will also cause them to have hyper symptoms.

At the end of the day, you are dealing with medical professionals that obviously do NOT understand thyroid disease.....they aren't even running the right labs!

Just looking at your "plain" T3 & T4 levels (which are falsely elevated due to binding issues), they are very much below mid-range.

Most people need their FreeT3 and FreeT4 levels well above mid-range if not towards the high end of the range.

You just might want to read "What Your Doctor May Not Tell You About Hypothyroidism" by endo Dr. Ken Blanchard.

He explains how people can be blatantly hypothyroid with "normal" (aka in-range) labs.

I suggest you start doctor-shopping.

You might want to call your pharmacist for contact info for doctors that Rx Armour and/or Cytomel....these are T3-containing thyroid hormone replacement meds that most "with-it" doctors Rx. This is not to say you need a T3 med....many fare well on synthroid/levothyroxine (T4 med)....this is just one way to improve your odds of finding a "with-it" doctor.
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Old 03-16-2011, 12:36 PM   #10
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Re: hypothyroid symptoms for years neg tsh,t3,t4

You just might want to read some of the stories posted on here by other members....your situation is, unfortunately, all-too-common......

http://www.healthboards.com/boards/showthread.php?t=106131
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Old 03-17-2011, 08:44 AM   #11
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Re: hypothyroid symptoms for years neg tsh,t3,t4

Jean,
I have Hashi's without goiter or nodules. Your medical "pros" are so wrong, there needs to be another word for wrong.

Find a doctor who knows enough to recognize the disease when he sees it.
Oh... And we get diagnosed with "depression" so much because it's the easy way out. Wham bam ... MD can make that "diagnosis" within the first 5 minutes, no labwork needed, anti-D pills earn huge profits in kickbacks. What's not for an MD to like about a depression diagnosis?

 
Old 03-17-2011, 04:22 PM   #12
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Re: hypothyroid symptoms for years neg tsh,t3,t4

@ midwest1 I know I am sooo frustrated with the whole situation

 
Old 03-17-2011, 04:43 PM   #13
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Re: hypothyroid symptoms for years neg tsh,t3,t4

Ok went and got my us report and some past labs. Anyone please give me some feedback.

us report
Finding: The right lobe of the thyroid gland measures 3.7x0.9x1.4cm. It is mildly heterogeneous in echotexture. There is a 9.0x5.0x7.0mm mixed echogenicity nodule associated with the medial inferior pole.
The left lobe measures3.0x0.6x1.3cm. No thyroid nodule is demonstrated. Thyroid isthmus measures 2.0mm in thickness
Impression: Single 9x5x7mm nodule associated with the inferior pole of the right lobe medially. Consider fine needle aspiration biopsy

Labs:
3-24-05(date) tsh 1.2(.3-4.8)
2-13-07 tsh 1.6(.3-4.8) T4free .88(.58-1.64)
9-18-08 tsh 2.0(.3-4.8)
3-4-10 tsh 1.1
8-9-10 tsh .98
2-10-11 tsh 3rd generation 1.12(.40-4.50)
3-11-11 T3 UP 28(24-35) T4 8.6(4.5-12.5)

I have FNA sched 3-30-11 will be done by radiologist

What do you think...anyone?

 
Old 03-17-2011, 06:55 PM   #14
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Re: hypothyroid symptoms for years neg tsh,t3,t4

Not sure what was going on in between 'cuz you just had TSH done (which often doesn't give a clear picture) *but* you were most definitely hypothyroid in 2007 and are hypo now (even though the right labs weren't run - T4 is often falsely elevated and your level is already low)

Good idea to get a FNA of a solitary nodule even though it's so small - just to play it safe.
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Old 03-18-2011, 09:22 AM   #15
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Re: hypothyroid symptoms for years neg tsh,t3,t4

Does my us description sound like Hashimotos? What about the description of the nodule? Are they doing FNA because the nodule looks suspicious or to see if it is Hashimotos? Anyone have any idea?

 
Old 03-18-2011, 09:42 AM   #16
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Re: hypothyroid symptoms for years neg tsh,t3,t4

FNB is almost never done solely to diagnose Hashimoto's, even though it's the only 100% way to diagnose it. However, when your nodule is biopsied, they will be able to tell you if that's what you have. It sort of doesn't matter, though. The treatment of hypoT is the same no matter what's causing it.

Sometimes an US report will remark about the texture changes that Hashi's causes. I suspect - but don't know for sure - that those changes are not always very obvious, especially in the earlier stages.

Last edited by midwest1; 03-18-2011 at 09:43 AM.

 
Old 03-18-2011, 10:00 AM   #17
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Re: hypothyroid symptoms for years neg tsh,t3,t4

Thank You
If it is Hashimoto and I have a nodule to they take it out or give med?

 
Old 03-19-2011, 07:47 AM   #18
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Re: hypothyroid symptoms for years neg tsh,t3,t4

I was told by a friend (nurse practitioner of pediatric endo) that I should really have an uptake scan as well because us doesn't always pick up all of the nodules esp if it is on the back side of the thyroid. Any thoughts would be greatly appreciated. Also thought or answers on my previous post. I'm so tired of this long drawn out process. Waiting on tests and drs are the worst. I hate waiting for everything And I'm not sure what I should be requesting from drs because we all know they don't order everything they should. Please help and give me more info.

 
Old 03-19-2011, 02:31 PM   #19
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Re: hypothyroid symptoms for years neg tsh,t3,t4

Quote:
Originally Posted by jeansp View Post
T3 =28, T4=8.6, TSH=1.2
I too had a mass and had it removed 2 years ago. I go for labs once every 3 months which is not quick enough for me, but that is how it is.

Usually they will not even FNA if the mass is very small. I have a small cyst on the other lobe they US every 6 months, but say it is not growing.

I recently had a lab done and my TSH had gone from .7 which is very good for me, up to to 1.3 which is bad for me.

If my TSH is not under 1.0 I am in trouble. It sounds like you are the same. You probably need your TSH around 1 or way less.

And the labs don't tell the true story for me. 1.3 sounds ok but for me it is hypo!

The needle biopsy is not painful. They apply pressure tho so they can insert the needle many places. It is NOTHING to fear.


You will be fine, even if you need surgery. Then you take a pill or two a day and life will improve. If they don't want to do surgery and you are hypo you will need meds undoubtably!!

I did not know how bad I felt until I had the surgery and finally felt good. Everyone around you is energetic and you are lying on the couch.

Your t gland is the reason.

Last edited by golfhat; 03-19-2011 at 02:44 PM.

 
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Old 03-25-2011, 11:18 AM   #20
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Re: hypothyroid symptoms for years neg tsh,t3,t4

Ok, ladies I'm confused. Please help. Still haven't had biopsy yet...next Wed. I was able to get the dr to check antibodies and this is what I was told. Tg Ab mine is <20 and normal is <20 anti-TPO was <10 and normal is <35. They also ordered celiac panel because years about 5-6yrs ago I had EGD and the GI doc was pretty sure I had celiac because the lining in my sm bowel was smooth with no villi. When the results came back from the biopsy it was negative...no bld work was done then just biopsy. This time they just did blood work. I'm so confused and frustrated. As soon as I feel like we are going in the right direction I get kicked back down. Any ideas?

 
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