Hyperthryoid, Undetectable TSH, and Multiple large Nodules

[swade77]

Hello,

I have a collection of unusual symptoms and I am wondering if anyone else has the same or could offer some advice on what to do.  I have had no detectable TSH for about 3 years now (sub-clinical hyperthyroid) and only recently became overtly hyperthyroid - still no TSH.  I also have 6 nodules - 2 of which are large enough to cause concern.  

I have had many u/s and FNA on the nodules - which have come back with ok test results so far.  The symptoms I have are GAINING weight, tiredness, being hot all the time and occasionally panic type tightness in my chest.  I should also mention that I have 4 small children, the oldest just turned 6 and my youngest is 3 months old, breastfed.  So, my hormones are out of whack from that as well.  

Basically, I am a hot mess!  My doctor (endo) and my ENT both recommend a total thyroidectomy as a course of treatment.  Naturally, I am concerned about the risks of surgery, but also about being HYPOthyroid.  I do not want to gain more weight and or face more symptoms.  My symptoms right now, while undesirable, are manageable.  

Is surgery the best route?  Do I really need to do anything right now?  Should I wait until my symptoms are worse?  The main reason they want to do surgery is the large nodules - they say they need to come out.  My husband and I wonder if I should let my body rest  ....in other words, not be pregnant or breastfeeding for some time, before surgery.  I feel like my problems with TSH and the hyperthyroid levels do not match up.  I also wonder if the lack of TSH is why I have trouble losing weight despite being hyperthyroid.  I have met with a dietician and she can't understand it either.  Argh!

Any thoughts or tips?  Perhaps other ways to manage this?  Thanks!

[Barb135]

Do you have lab results that you could post, along with reference ranges?  That's really the only way we can tell what's going on, since you do have symptoms of hypothyroidism.  

[san70]

I have the same thing going on...Toxic nodules.  At first clinical only (very low TSH) but the T3 and T4 are climbing.  Endo wants to do RAI or TT.  I am not going to go that route until I have exhausted all options.   The thyroid regulates too much!  

And yes...I am tired alot, heat intolerant. unmotivated, hungry and Im not losing weight!!   Prior to the beta blocker I had palpitations and shortness of breath.  

[swade77]

I have not taken any meds.  My doctor was trying to avoid it as long as I was only sub-clinical hyperthyroid and my T3 and T4 were within normal range.  Now, with them being being out of range she suggested skipping right ahead to surgery to avoid continuing with frequent blood work, biopsies, ultra sounds, etc....(with the biopsies and u/s being for the nodules which cover both sides of my thyroid and my isthmus).  I have had 3 biopsies which came back benign, but the larger nodules continue to grow at a good clip.

I realize that total thyroidectomy is a rather common surgery....with minimal risks.  Not sure what I'm so worried about?  I guess it just seems sudden to go from not even being on meds to a TT.

[ChristineMP]

If it was a problem with your pituitary, you would have other symptoms (not related to your thyroid). The pituitary releases hormones that direct other endocrine glands so other systems would likely be affected (in addition to your thyroid) if it was a pituitary problem.

TSH is an indication of whether or not your pituitary thinks your body needs more thyroid hormones. If it thinks you do, it releases TSH (thyroid stimulating hormone) directing your thyroid to release more thyroid hormones. No TSH means your pituitary does not detect low levels of thyroid hormones...that isn't to say it doesn't detect levels that are TOO high, but it can't do anything about high levels other than not tell your thyroid to produce more.

Are you taking any medications? Have you taken medications in the past? Such as oral or inhaled corticosteroids?

Being hypothyroid is manageable with thyroid hormone replacement, once your doctor gets your meds right, which can take some trial and error. Is your doctor concerned that the nodules may be cancerous? Has he done a biopsy?

[swade77]

Yes, it is unusual that my levels show HYPERthyroid.  Which is why I have such trouble finding anyone with similar symptoms.  In fact, my T3 and T4 now show me to overtly hyperthyroid while previously only being sub-clinical based on my lack of TSH.  I have even plainly asked the doctor why I appear physically to be hypo and clinically to be hyper.  She said that symptoms of thyroid disease don't always associate with one or the other- not much help there.  

I have inquired about all of these issues being more of a pituitary issue in addition to a thyroid issue, but was told that it is very unlikely?  

[gimel]

First TSH is a pituitary hormone that is affected by so many variables that it at best it is only an indicator, to be considered along with more important indicators such as levels of the biologically active thyroid hormones Free T3 and Free T4.  FT3 is the most important because it largely regulates metabolism and many other body functions.  Studies have shown that FT3 correlated best with hypo symptoms, while FT4 and TSH correlated poorly.  So you rally need to know the levels of your FT3 and FT4, along with TSH and symptoms, in order to better assess your status.

I am curious as to why you say that you are hyperthyroid, when you have many hypothyroid symptoms.  If you are basing that on your TSH alone, then that may be erroneous.  You can have problems in the hypothalamus/pituitary areas and have low TSH, such that your body is not getting adequate thyroid hormone.