Low thyroid symptoms but normal TSH

[ritsbits44]

Hey everyone,

I've been having what seems like ALL the low thyroid symptoms (hypo) and my doc doesn't seem to be taking it very seriously. My biggest symptoms = brain fog, fatigue, and oversleeping, depression, weird bouts of anxiety, hair loss, and dry skin..though the rest of the symptoms like to show up occasionally as well.

My TSH was within normal range according to the doctor but she never did a full thyroid panel so I don't know what all other areas of my thyroid have to say.

Here's my results for the TSH with Reflex:

TSH
0.964

Range:
0.400 - 4.00 mU/l

She rubbed my neck and felt like my thyroid was enlarged so decided to order an ultrasound. I received my ultrasound results back today which showed two cystic nodules on my left lobe as well as a mildly enlarged thyroid.

Results:

CLINICAL DATA: Enlarged thyroid on exam.

FINDINGS: The thyroid is borderline enlarged (right lobe 4.3 x 1.6 x 1.6 cm or
5.8 cc, left lobe 3.7 x 1.8 x 1.5 cm or 5.2 cc and isthmus 2.6 x 2.9 x 0.3 cm or
1.3 cc for a total thyroidal volume of 12.3 cc).

The left mid thyroid lobe is notable for 0.5 x 0.2 x 0.2 cm and 0.3 x 0.1 x 0.3 cm cystic nodules.
No other discrete solid or cystic nodule is apparent.

IMPRESSION:

Borderline enlarged thyroid (total thyroidal volume of 12.3 cc) with two small
left thyroid lobe cystic nodules.

NORMAL THYROID VOLUME

-----Men------------11-15 cc
-----Women---------8-12 cc.

CRITERIA FOR CONSIDERATION OF A NODULE FOR BIOPSY (UCSF)

-----Any two of the three characteristics listed below:

-----1. Microcalcifications, 2. Entirely solid, 3. Size greater than 2 cm.

~~~~

She basically said based off my TSH result she didn't feel it was necessary to investigate any further...but hello? For someone who is 28 years old, it's a little scary to be told you have nodules on your thyroid and not be told any plan of action for a future appointment..maybe for another ultrasound to see if there's growth? I'm just baffled at how doctor's don't do full thyroid panels and take this stuff so lightly. I understand most nodules are benign but things like this surely shouldn't be sloughed off without any plan for the future.

According to UCSF, if your nodule grows to 1cm - 2cm they would require a biopsy..one of my nodules is 0.5 and I don't know how fast these things grow....

So frustrating....it's a very helpless and anxiety-inducing feeling knowing you have two random nodules in your neck and a doctor who seemingly doesn't care.

I hope there are some nurses or doctor's in this community who can help.

Thank you.

[Sarahjogs]

Hi ritsbits44,

I'm not a nurse or a doctor but I can tell you what I think about your ultrasound and TSH level.

TSH in general is not a good measurement of thyroid function.  To tell if your thyroid is working properly, you also need free T4 and free T3 levels.  If you have Hashimoto's which is an autoimmune disorder where you develop antibodies that attack your thyroid, you may have free T3 and free T4 levels are within the normal range and a TSH level that fluctuates (I've just learned I have Hashimoto's, my TSH is "normal", and I have hypo symptoms as well as a multinodular goiter with lots of large nodules). To determine if you have Hashimoto's, you need to do a thyroid antibody test, not just test the hormones.  Doctors seem reluctant to order this test, I had to ask my PCP twice and ended up getting my ENT to order the test to because of my concerns.

Your ultrasound looks like your thyroid is a pretty normal size to me, although I was only given one dimension for my "isthmus" reading so I'm not sure if that part is large or not.  I was told that it is very normal for women to have nodules and not know about them.  My ENT told me 20% of 20 year old women have nodules, 30% of 30 year olds, 40% of 40 year olds, etc., so the fact that you have two small cystic nodules should not be too concerning.  95% of thyroid nodules are benign, and thyroid cancer is almost always very slow growing, which is why the guidelines recommend biopsy only if the nodule is over 2cm or has suspicious characteristics.  Wait and see is the best course of action at this point based on your ultrasound.

You are completely right when you think you should have a follow-up to see if the nodules are growing (or if your slightly enlarged thyroid is growing larger).  I'm not sure what the guidelines are, I think usually an ultrasound every 6 months or 12 months is recommended to determine if the nodules are growing in size.  There are some studies that suggest if no growth is noted after three years of follow-up, long term follow up for benign nodules is not recommended.

I'm not sure if the average PCP knows or understands thyroid conditions and might not know that you should have follow up ultrasounds if there are nodules present.  You could ask your doctor what time interval they would recommend follow-up ultrasounds at, and get the ball rolling so you know what your follow up care for your nodules will be like.  If they tell you they don't recommend any follow-up, I would express your concerns.  Perhaps you need a referral for an ENT or endocrinologist who routinely treats patients with nodules.

As for the hypothyroidism symptoms, it is possible your thyroid isn't functioning properly despite normal TSH.  Other people on here know a whole lot more than me about this, but I know testing for free T3 and free T4 will tell you more about overall thyroid function, and testing for thyroid antibodies will tell you if you have an autoimmune thyroid disease like Hashimoto's.  Doctors seem very reluctant to order the thyroid antibody test, especially if your hormone levels are normal.  I too had anxiety about whether or not I had a thyroid problem and pushed to get the thyroid test.  In my case it is Hashimoto's.  The symptoms you have *could* be caused by other problems, but you should try to rule out hypothyroidism/Hashimoto's by getting the right tests done.

A lot of doctors seem to go by TSH or thyroid hormone levels alone, and not listen to the patient's symptoms - yours isn't the first to do this but it is very frustrating.  If you can't get them to order the test for you, there are ways to order a test for yourself on-line (I believe they send you lab orders and you can go to a blood draw center, have them do the test, then send you the results).

I'm sorry you have to deal with this.  I would not be anxious about the ultrasound result, just make sure to get follow-up.  Trying to figure out if you have hypothyroidism and having the doctor not listen is so frustrating!  I would ask your doctor about the thyroid antibody test and about doing a full thyroid panel and mention that you are concerned you might have Hashimoto's (if you are able to call/message the doctor and avoid an appointment I would do that!).  If your doctor will still not listen to you, you could order the test for yourself.  Even if the results end up being negative, it may help to lower your anxiety about whether you have a thyroid problem or if should look for other causes for your symptoms.

Good luck and I hope you find some answers soon!