Hashimotos Symptom Fluctuations

[grgmals]

Hi,
I am a 35 yr old male who last year underwent a partial thyroid lobectomy with isthmusectomy.  The pathology was Chronic Thyroiditis.  I had 2-3 cm nodules on the left side that were removed.  I have tested positive for Anti Thyroglobulin but negative for TPO.  I was hyperthyroid at the time of surgery and that was no fun.  One of the nodules was a hot nodule.
After the surgery my levels were close to being hypo (TSH of 2.6 - Lab range .3-4.2)

It had slowly moved to a more normal range where my last test in March was TSH of 1.3 (.3-4.2 range)  Free T4 of .8  (range .6-1.2). TGAB was moderately high.


I still get random muscle and joint aches (mostly legs, hips, shoulders and somtimes hands) as well as dry eyes and dry skin. Some days I am fine and then others I feel like garbage.  My dry eyes do stem from heavy computer use and eye drops seem to help. None of the aches and pains are brutal and there is no redness or swelling. Some days all I want to do is take a nap but I push through it.

I have been tested for everything. Neuro workup (MRI's with contrast of head and spine) negative, negative for Lyme, negative ANA, negative RF. All CBC's have been normal, sed rate, peptide etc all normal.

What I have noticed is the remaining lobe of my thyroid tends to swell.  It comes and goes, some days it is very noticeable in terms of pressure symptoms, other days it isnt.

Some other things I have struggled with are insomnia (occasional) and GERD (occasional).  

I was a healthy guy until my thyroid blew up and I still consider myself to be so but these nagging symptoms are getting irritating.  I have blood work scheduled for next month.

My question is, has anyone out there had a partial lobectomy and needed replacement hormone?  I am not on any as of now nor was I put on any after surgery. My thyroid doctor then said there would be a 20% chance of needing meds.  I switched Drs to a new Endo who is very good and he said since I have Hashimotos the chances are much greater that I will eventually need replacement meds.

Also, do you notice that your Hashi symptoms can sometimes come and go? Does they do so when your thyroid swells?

Thanks for any replys.  Just looking to see if others have gone through similar things to ensure I am not crazy. :)

[grgmals]

thank you for the link.  hopefully either my test results prove it out or at least show that I am moving to the point of needing replacement meds.  I know they may not be a cure all but I am sure they will help.

[gimel]

Your said, "I did mention the low Free T4 to my new endo and he said that may mean my body is efficient at transforming T4 to T3."   That is a new one to me.  I swear sometimes I think they make these things up on the fly, just to avoid further discussion.  FT3 is the most important thyroid test why wouldn't he just test Free T3 to verify.  Until you are tested for Free T3, you really can't know your status.  

Also the doctor "said since I have Hashimotos the chances are much greater that I will eventually need replacement meds."  It isn't a matter of if you will need replacement meds, only a matter of when.  

Anyway, I wanted to make sure you saw this link.  When you read through it, compare the clinical approach to what you are hearing and going through.  

http://hormonerestoration.com/files/ThyroidPMD.pdf

I think it would be a good idea to ask your Endo if he is going to be willing to treat you clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  If he is not willing, then you are going to have to find a good thyroid doctor that will do so.

[grgmals]

also for all the people out there who get frustrated with labs..I am living proof that they dont always correlate.  I was in my GP's office with a racing heart, sweating, felt exhausted, and my thyroid was swollen so much it was visible and I had lost 15 lbs...he ran blood work and the TSH was "in range".  the only thing that got me to the next level was that I asked him to run the antibodies test which he did.  I tested positive for graves and tgab.
the endo I went to see who is a highly respected one said there was no evidence of graves but he did confirm the "chronic thyroiditis" issue.  

I am not overweight and have always been a healthy active athlete so my GP knew when I said I felt like I worked out for hours that something was prob wrong.

[grgmals]

thanks so much for your reply. The initial TSH after my surgery of 2.6 was done by my GP and they didnt test the Free's then.  My guess is they were out of range.
what sent me on the wild goose chase of tests was the first thyroid dr saying the tsh of 2.6 means my symptoms arent thyroid related. my new endo disagreed and said such a wild swing after surgery would make you feel terrible for quite some time. my hope now is that since I have had all the other testing done if I still test "in range" I can ask for a trial of replacement hormone.  its just strange because sometimes I feel OK and forget I even have an issue, and then other times my legs, hands, and shoulders ache and I am exhausted.
I did mention the low Free T4 to my new endo and he said that may mean my body is efficient at transforming T4 to T3.   I did have a TSH test done a month ago when I had the ANA and others run (again run by my GP so only TSH) and it had gone from 1.3 up to 1.7.

my hope is I hit the lottery next month with an out of range test or at least on the high end of normal so I can persuade the dr to try treatment.  my endo runs the tsh and free t4 so hopefully it hits.

its funny because you really feel like you are waiting to hit the lottery with the lab test and when it comes back in range it makes you feel like you are a whacko.

I think one good thing going for me is I am a male.  My thinking is, they won't be able to blame it on other hormonal problems that may occur women.  Males are simple...thyroid, testosterone and a few others.

the one test I am going to ask for is the celiac test. I don't think I have that. I think my thyroid blew up because of stress and smoking.  (which I used to smoke).  I also had a CT scan done with contrast for something else and thats when they found the enlarged thyroid.  After that CT is when the one lobe blew up (well a period of months after).  not sure if that is what triggered this or not.

thanks again for the reply.  

Have you noticed that HAshi's symptoms come and go and fluctuate from time to time? Is this just the nature of the problem?

[gimel]

First thing you should be aware of is that TSH is a pituitary hormone that is affected by so many variables that it is totally inadequate as a diagnostic by which to treat a thyroid patient.  At best it is an indicator to be considered along with more important indicators such as symptoms, and also the biologically active thyroid hormones, Free T3 and free T4 (not the same as Total T3 and T4).  Of these FT3 is the most important because it largely regulates metabolism and many other body functions.  Scientific studies have also shown that FT3 correlated best with hypo symptoms, while FT4 and TSH did not correlate.  

With your FT4 test result being low in the range, it may well be that your Free T3 is low in the range also.  Having FT3 and  FT4 that are low in their reference ranges is frequently associated with having hypo symptoms. , The ranges are far too broad, for reasons I won't get into at this point.  Many of our members report that symptom relief for them required that FT3 was adjusted into the upper part of its range and FT4 adjusted to around the midpoint of its range.  

A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not just test results.

If you would like to know more about clinical treatment, please see the post I made to Sophiesudane on this first page of the Forum.  I'd just give you the link to the letter I'd like you to see, but I'm having trouble with my laptop.

[grgmals]

ps.  I was tested for all the other things after my thyroid surgery because I was initially told by my old Dr that the symptoms werent from my thyroid because the TSH was 2.6.  I tend to be pushy so I said fine if its not the most obvious thing then test me for every other thing under the sun.

all negative results.  Only thing I havent done is a Celiac test which I may request.