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How concerned should I be?

57 F Thyroid medicine over 20 yrs.  10/20TSH 9.7/T4Free1.46/ T3Free2.1, swallowing & throat discomfort. 1st us numerous non-cancer nodules both lobes R3.6x1.2x1.2 L2.7x1.0x1.3. 150mcg Levothyroxine from 125mcg.  12/20TSH2.63/T4Free1.68/T3Free2.5.  6 mths 2nd us diff radiologist/location numerous nodules non-cancerous R3.9x1.5x1.2L3.3x1.3x1.1.  Ref to 1st Endocrinologist.
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649848 tn?1534633700
They've already said that your nodules are benign (not cancer), so there's really not a lot to worry about.   I can't see any reason they'd have to remove your thyroid since the nodules are benign and you're not hyper.

The whole thyroid issue - how the thyroid works, etc can be a bit overwhelming when you're first learning about it, but since you've been on medication for 20 yrs, staying on it will be no big deal.  You just have to get the right dosage.  

So - I'll explain just a little bit about Hashimoto's and Graves Disease.  Both are autoimmune conditions that not curable and eventually destroy the thyroid.  As I noted, Graves Disease is always associated with hyperthyroidism (too much thyroid hormones) and Hashimoto's is most often associated with hypothyroidism (not enough hormones), though Hashimoto's can sometimes be associated with hyper in early stages.  Hashimoto's is the most common cause of hypothyroidism in the developed world, though there can be other causes.  

Since you've been on thyroid medication for so long, I'm surprised your doctor has never tested for Hashimoto's, as it's very simple blood tests.  The thing is that some doctors just "assume" Hashimoto's and don't bother to test for it.   Anyway the tests you need are Thyroid Peroxidase Antibodies (TPOab) and Thyroglobulin Antibodies (TgAb).  You need them both because they're both indicators for Hashimoto's and without them, you could be misdiagnosed.  

Hypothyroidism caused by Hashimoto's isn't treated any different from any other type of hypothyroidism - replacement hormones are prescribed to keep up with the destruction of the thyroid gland.  Hashimoto's causes certain characteristics of the thyroid gland, which IMO, is what they're seeing with your ultrasounds.   It's possible for Hashimoto's to "flare" once in a while, causing medications to appear not to work and/or causing hormone levels to be off.  It can also cause goiter (swollen thyroid) and enlarged nodules.

Adequate replacement medication can often be conducive to shrinking the goiter and/or nodules.  Hopefully, the endo will be willing to provide an adequate dosage.

Please don't hesitate to ask any questions you might have.  I'd rather answer questions than have you feel worries/overwhelmed.
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Barb135,  I can't thank you enough.  I look forward to working with the thyroid specialist.  Again, thank you for your time, patience and detailed answers.  Stay well!
I think it's important to understand that not all endocrinologists are "thyroid specialists", even though the thyroid is part of the endocrine system.  A lot of endos specialize in diabetes and other things and do not give adequate treatment for thyroid patients.  Personally, I've had 3 endos and 2 of them did nothing but make/keep me ill.   One was pretty good, but he left the area.

A lot of endos (and other doctors) go only by TSH and as long as TSH is in range, they're happy... The last endo I had was thrilled that my TSH was 4.56 and refused to acknowledge the fact that my FT4 was only 0.5 (0.8-1.8) and my FT3 was 2.0 (2.3-4.2), would make me feel badly.  He kept me under medicated for over a year until I asked my pcp to take over management of my thyroid.  If your endo goes only by TSH, run, don't walk away and find another.
I agree. My wife had a "good" Endo for a while and then he retired. His replacement crashed my wife and we "fired" her and went to my wife's PCP at the time.  

To my it appears you are over medicated on T4 and as Barb135 stated you need to add in a dose of T3 medication.  Typically they will s tart you our with 5 to 10 mcg.  I would suggest that when you get to 10 mcg of above, that you start to split your dose of T3 in half, taking the first half in the morning along with your T4 medication, and the 2nd half in the early afternoon.

The reason is that T4 medication is "storage" and even with medication it takes up to 6 WEEKS to become stabilized in your blood.  T3 however after taking ramps up to full peak in about 4 HOURS!  So splitting the dose helps keep the blood level of T3 up and more consistent in your body.

Remember that your body's cells ONLY use the Free T3 actively.  So your symptoms correlate best with Free T3 test, only somewhat to FreeT4 levels and hardly correlate with the pituitary hormone TSH.

Any Dr who primarily uses or ONLY uses TSH you will need to fire and find a new Dr. Unfortunately that is most doctors as that is what they teach in med school.
Sorry for the late response; thank you both for this pertinent information.  I now understand so much more and will be better prepared to meet the Endocrinologist.  Thank you again!
649848 tn?1534633700
As Jasper1966 stated, thyroid nodules are very common with hypothyroidism and/or Hashimoto's.  Approximately 95% of nodules are benign.  Do you know how large your nodules are?  If they're less than 2.0 cm, it's unlikely they would do a FNA unless the nodules indicate strong possibility of cancer.  You've already say they're "non-cancer" aka benign, so they won't do FNA.

I have a solid nodule on my thyroid that's been determined (via ultrasound) to be "moderately suspicious" for cancer but it was < 1.0 cm so they didn't do FNA.  Because thyroid cancer rarely spreads to other parts of the body, it's safe to watch my nodule for a year to see what it does.  It's been there for years, but this is the first time there's ever been a worry about cancer.  The ultrasound that determined it to be moderately suspicious was done in September 2020, so we'll do another in a few months and see if it's changed.  I have noticed that I seem to have a lot phlegm in my throat and have to keep clearing it a lot.  

Some noduleds can be shrunk with the use of thyroid hormones.  Could you please post the reference ranges for your FT4 and FT3?  Ranges vary lab to lab and have to come from your own report.  Your levels seem very low, based on what we normally see, but again, that depends on the reference ranges used by your lab...  It looks like you could definitely use an increase in thyroid medication.
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Thank you so much for the your post and information.  Unfortunately, I have not seen either of the ultrasounds on my thyroid and do not know how large any of the nodules are.  The doctors have only told me there are numerous nodules on both sides and the radiologists read them as non-cancerous.  I'm being referred to an Endocrinologist because the thyroid is larger than it was 6 months ago.  The second ultrasound was preformed at a different location by a different technician.
Here are the ranges from my lab results
Triiodothyronine (T3), Free range is  2.0-4.4 (pg/mL)
T4,Free(Direct) range is 0.82-1.77 (ng/dL)
Thank you again!
First and foremost I wish you only the best this September.  I apologize for not mentioning this earlier and thank you for any comments or suggestions you may have.

I recently received copies of my two Ultrasounds:  
1st Ultrasound 11-13-2020
Findings: Multiple images were submitted for interpretation.  The thyroid gland is diffusely heterogeneous with numerous confluent nodules throughout and increased vascularity.  The right lobe measures 3.6 x 1.2 x 1.2 cm.  The left lobe measures 2.7 x 1 x 1.3 cm.  The isthmus measures 2.5 mm across.  The largest focal nodules include a 1.1 x 0.5 x 1 cm nodule in the right lower pole and a 1.6 x 1 x 1.7 cm mixed echogenic nodule in the left midpole.  Rule out multinodular goiter.  Recommend clinical correlation or correlation with radionucleotide study.
Impression:  Heterogeneous hypervascular gland with numerous confluent nodules bilaterally and several more focal larger nodules as described above.  Rule out multinodular goiter.

2nd Ultrasound 6-9-2021 different imaging center
Right thyroid lobe measures 3.9 x 1.5 x 1.2 cm.  The right thyroid lobe is of heterogeneous and slightly nodular echotexture and of normal vascularity.  No discrete thyroid nodule or mass is noted.
Left thyroid lobe measures 3.3 x 1.3 x 1.1 cm.  The left thyroid lobe is of heterogeneous and slightly nodular echotexture and of normal vascularity.  No discrete thyroid nodule or mass is noted.
The isthmus measures approximately 2 mm.
Impression:  Markedly heterogeneous and bilateral nodular appearance of both thyroid lobes as noted.
Thank you very much for your well wishes.

I'm sorry I missed you comments from a few days ago.   Thank you for providing the reference ranges.   Your Free T4 is higher than it needs to be... Rule of thumb is for Free T4 to be about mid range.  Yours is at 67% of range.  Rule of thumb for Free T3 is upper half to upper third of its range.  Your FT3 is only at 4% of range.  

Free T4 is considered to be a "storage hormone" because it's not used directly by individual cells.  It must be converted to Free T3, which is actually used by nearly every cell in the body.   It would appear that you're not converting the Free T4 to Free T3 like you should be.  Typically when this happens, it's necessary to add a separate source of T3 to your daily medication.  This could come from a synthetic, such as Cytomel or it's generic counterpart, Liothyronine or from a desiccated hormone such as Armour, which contains both T4 and T3.  The problem with desiccated hormones is that the T4 and T3 can't be regulated individually.   I've been on both, desiccated and synthetic.  I do better with the synthetics because of the ability to adjust  each one individually.   Some people do much better on desiccated - we're all different.  

So that was the long way of saying you should talk to your doctor about adding a source of T3.  If s/he refuses, you might need to look for a different doctor that will treat you adequately.  

As for your ultrasounds... Heterogeneous means that not all the thyroid tissue is the same.  This, along with nodular echotexture is common with Hashimoto's or Graves Disease.  The second ultrasound doesn't indicate whether the nodules have stayed the same; it only indicates that you have a goiter (swollen thyroid) with nodules, which is called a multinodular goiter.  This often happens when we're hypothyroid and once adequately medicated, the size of, both, the goiter and the nodules, will decrease.

You said you've been on medication for ~ 20 yrs.  Do you still have your thyroid intact?  Have you ever been diagnosed with Hashimoto's or Graves Disease?   Graves Disease is always associated with hyperthyroidism, whereas Hashimoto's is most often associated with hypothyroidism, but in early stages can present with hyperthyroidism, alternating with hypo or normal.
Thank you so much for all the above information.  I do have to admit I'm a bit overwhelmed.  I do have my entire thyroid intact.  I have never been diagnosed with Hashimoto's or Graves Disease that I know of.  The soonest I could get an appointment with the Endocrinologist is 8-2-2021.  I really appreciate your time, thank you!
Hopefully I can allay some of your fears.  A thyroid disorder can be managed very effectively and without any serious side effects.   Almost all go on to live a normal life.  Twenty years ago I was in your shoes.   My endo recommended a surgical option for my hyperthyroidism.  It meant a lifetime of taking pills, getting routine blood work, dosage adjustments, etc.  Looking back  I can honestly say that you adjust to the routine and life goes on.  There are a few bumps along the way but I am grateful because something like diabetes is far worse.  Get it checked out, go for a second opinion (which I didn't do) and do your research.  If you need medical intervention, take comfort in knowing that most can lead a normal life with thyroid medication.  
Thank you Jasper1966, all the best!
Avatar universal
Thyroid nodules are very common and tend to be rather benign.  Once they are detected then the next step is the biopsy using  fine needle aspiration.  Try to stay positive and remind yourself that the overwhelming percentages are in your favor.  They can try to shrink it with medication, observe and monitor over time, etc.  It is a nuisance but not debilitating.  Best of luck to all of you.  
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Thank you for the information and your time.
231441 tn?1333892766
Hi.  I don't have an answer for you.  However, I am 51 and have also been on thyroid meds for more than 20 years and am just about to undergo investigations for multiple probably thyroid nodules.... 1st ultrasound tomorrow.... so I would like to follow your discussion here.  
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I wish you the best!
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