Roller Coaster Ride is getting WORSE

[Kiwistyle]

Thyroid issues were discovered in 2011. The last three tests done, two at one place and one at another Lab are as follows:
April 17 2013
   FT3   3.6        Normal Range   2.3-4.2
   FT4   1.14      Normal Range   0.62-1.57
   TSH   0.585   Normal Range    0.350-5.500

July 16 2013
   FT4    0.98     Normal Range    0.62-1.57
   TSH    0.307  Normal Range     0.350-5.500

November 03 2014  (Different Lab)
   TSH    0.831   Normal Range   0.450-4.500  
   FT4     0.76     Normal Range   0.82-1.77
Lmyphs   3.5      Normal Range   0.7-3.1
No T3 run in last two tests.

I have a larger than 2.3cm dominant nodule on the right side and numerous smaller nodules with the next largest on the left side. I had a FNAB done in 2011 with no cancer evident.

The Dr. of the last results is new.

Added symptoms. Heart racing periodically, heart beats over 100 on normal sitting quietly. Extreme Sweating. 20 degrees outside I am hot. Any exercise, I am profusely sweating. Night time I am cold and turn on bed heat in winter. Mood swings, too the point I sometimes wonder why I am even on this earth. Luckily I know who I am and can shake these thoughts off with effort and telling myself to stop these stupid thoughts. Weigh gain in huge amounts. 135lb normal weight to 186lbs in three years. Now reverse, loss from 186lbs to 158lbs in 4 months. Low energy for several days and sudden high energy again and clear thoughts. On low energy days I go about the day totally confused at what I am doing. Start a project, stop, go to something else and then suddenly forget what I was doing at all. Have to stop and regroup, try to clear my head and start over. Loss of memory and time is becoming permanent. Mood changes to anger with no real reason.. On good energy days I focus and accomplish much with good and clear short term memory. Happy with no mood change.

I am 62 and have a very busy Lifestyle in the Companion Animal Field, Groomer, Trainer, Used to show, my day starts at 5am and ends at 10pm of which I used to be active throughout the day. On good days that is still the case. I do all the repair work on the fencing, shovel gravel and am still extremely strong for my age.

My current Dr. answers to latest blood levels is do another FNAB and look at surgery to stop the pressure on my windpipe when I sleep. First off I DON'T want surgery, secondly the pressure is there but not enough to warrant surgery. I want to control the Roller Coaster ride. I want to know how to approach the Dr. about taking care of these symptoms because not one of them hears me when I speak. They look at the blood results and tell me that it is not the Thyroid causing these. I have no other medical issues except for DJD and Spondyolothesis of which I both control because I am so active. A little arthritis is setting in due to age. I feel like I am headed for Dementia if I don't get this under control and find a Dr. that is willing to treat symptoms. I never know when I wake up what type of day and energy this day will bring to me. Shaking inside is a new symptom for me the last month.

I need help in finding a Dr. that will listen to me.. We live in Lexington, Tennessee.  

[Kiwistyle]

This situation gets more confusing each time I get it checked. I have been waiting on the sonogram results from November 3rd. I finally wrote and asked where they were and the Dr. wrote back this message. " The ultrasound shows a Multinodular Goiter with NO dominant nodule."  He wants a FNAB though. I have no idea then why he wants to do another invasive procedure, does not make sense. Doesn't talk to me just makes statements of what he wants.

My ultrasound result done on 16 August 2013.:

Impression: A multinodular thyroid appearance is again demonstrated with the larger and more complex nodules in the right side. The dominant right nodule is amenable to fine needle aspiration should be considered given it's size. The adjacent nodule with central echogenic foci should be considered for sampling given the appearance of possible calcifications versus colloid foci.

Now this Dr. is saying there is no dominant nodule. I am so completely confused and have no idea what to do. If there is no Dominant Nodule what are they going FNAB?? I don't get this and no wonder I am so confused. Do these Nodules go away?  Are they saying this huge lump in my neck is now my entire Thyroid that is enlarged?  

Last August report describes the Nodules as this.

Findings:
The examination is compared to the study obtained on 12/6/12

Thyroid enlargement and mulitinodular configuration is again demonstrated. The right lobe measures approximately 5.4 x3.2 x2.5 cm in size with a dominant solid and cystic nodule within the upper pole measuring approximately 2.7 x 1.7 x2.3 cm in size. This was previously reported to measure 2.4 x 2.3 x 1.9 cm in size and has a similar size and features in the interval allowing for technical differences. A smaller adjacent nodule is present with a few echogenic components which may represent foci of calcification versus colloid measuring approximately 1.7 x 1.2 x1 cm.

The left thyroid lobe measures approximately 5.2 x 2 x 1.18 in size and contains subcentimeter nodules, grossly similar in the interval as well. The isthmus measures approximately 0.5-CM.

No one has ever explained to me what this all means except that I converted cm to inch and know that I had a 2.1" X 1.3" X 1" lump sticking out of my neck.

To me the lump appears larger because swallowing is more pressure and I feel it more when I lay down.

Now what to do next.................

[goolarra]

We can't post doctors' names and contact information on the open forum.  So, I will send you a PM with the info.  Go to your personal page and check your messages.

[Kiwistyle]

The tests were done on November 03, 2014 so three weeks ago. Nashville is 100 miles away from me. Where do I find this list???

[goolarra]

That is scary.  Headache is often a symptom of hyper.  

Your TPOab isn't elevated, but your TRab, though in range, is in a very gray area.  How long ago was that tested?  In the range for TRab (0.00-1.75), 1.75 represents where most people start having symptoms.  People who don't have Graves' have TRab of less than 0.02 typically.

Is Nashville or Knoxville close to you?  One of our members keeps a list of doctors recommended by forum members.  We don't have anyone in KY, but there are a few in TN.    

[Kiwistyle]

I also noticed on the Portal today the Dr. has prescribed Lopressor  but am afraid to take it because a couple of days ago I began to start feeling the true outside temperature and that is usually the beginning of things calming down again and this drugs description said it was for anxiety and increased heart rate of which are now no longer high. A new experience I had during this last high as I call it as I am full of energy and go 90 miles an hour, I woke up one morning with the most horrendous headache I have ever had in my life. The pressure felt like my head would burst and blood was coming out my eyes. I do have bulging disks in my neck and this could have been the cause of this pressure but certainly new to me. Scary to say the least.  

[Kiwistyle]

Yes it was tested and this is what it says.

Thyroid Peroxidase

<6    IU/mL   Range 0-34    

Thyrotropin  Receptor Ab Serum
0.66  1U/L       Range  0.00-1.75

My original Diagnosis of Hyperthyroid, I guess is no longer according to the current Dr. and, these Lab results but still I am living in hell. This Dr. attitude is that my TSH is just fine and my T4 is not low enough to be concerned about even though it has steadily been dropping for the last year. I did take him copies of my previous testing as I listed above so I am back to square one with this current Dr. saying there is no issues. None of my symptoms are caused by Thyroid according to him. My GP eliminated any other health issues being present and believes the causes are Thyroid. I have no idea how to overcome this and put me back together but three years down the road it is becoming to much to continue to take. Now the memory loss is starting to take its toll. I realize I am older but I have always done Brain (Memory) Training for this phase of my life and it no longer works for me. I am, afraid I am headed for Dementia if I don't solve these bouncing around issues.  The time frame between changes is never the same, I tried to find a pattern to se if maybe I was instigating it with something I was doing but that is not the case either. I continually look up food ideas that may help but none of those help. The largest of several Nodules is in the Upper Pole and is 2.7 x 1.7 x 2.3 cm. It has steadily increased in size over the last year although I have not seen results for the most resent one. The Dr. made the statement that the good news was that it has not grown much but it appears there is more of them formed now which is the source of the pressure on the wind pipe. The next largest is 1.7 x 1.2 x1 cm The left thyroid lobe contains several subcentimeter nodules.

My other major concern is that my mother had Thyroid Cancer around my age. This does not seem to concern anyone either. I so remember her going through similar things as I am and, I am concerned it is hereditary.  But my TSH level is fine so it appears that according to DR's that makes everything alright and I do not know how to find a Dr. that will look past that TSH level.

[goolarra]

Your T3 result is total T3, not free T3.  FT3 is considered a lot more useful test.  However, that being said, your TT3 looks good.  It's right in the middle of the range.

I agree with flyingfool that it looks like you might have a toxic nodule or toxic adenoma, which I think is what he meant rather than "hot" nodule.  A toxic nodule is kind of like a mini thyroid within your thyroid. It produces thyroid hormone independent of pituitary control.  It also puts out more T3 than the thyroid ordinarily does.  

Was thyroid peroxidase antibody (TPOab or microsomal) ever tested?  Many more of us who have Hashi's are TPOab positive than TGab positive.  

[Kiwistyle]

Thank you for your reply. I most certainly appreciate any and all thoughts and advice that I am able to glean from my post so I am able to make informed thoughts and decisions. You two cents worth is worth a lot more to me. Again thanks.

[flyingfool]

My thought would be to think of the possibility of a periodic "hot nodule".  

That is a nodule that periodically "leaks" out hormone.  During these times you would be in hyper state. While when the nodule is inactive, then you fall into Hypo state.

This would explain in theory the roller coaster.

Another possibility is Hashimoto's which also can lead to roller coaster ride of Hyper to Hypo depending upon the fluctuating activity of the antibodies attack on the thyroid gland.

Or it could be a combination of both of the above.

The indication that the gland looks: "THE VERY INTENSE ACTIVITY IN THE RIGHT MID POLE SUGGESTS ADENOMA WITH DEVELOPING SUPPRESSION OF ACTIVITY IN THE REMAINDER OF THE GLAND,"

This seems to me would indicate damage to the thyroid gland due to Hashimoto's.  "suppression of activity" would indicate the thryoid is producing less hormone.  However your symptoms are mostly Hyper at least at the moment.  So again this would be consistent with a "hot nodule".

Understand I am NOT a Dr and do not claim to be.  I'm just a "regular" person reading what is posted and trying to make a judgement as to what would or could be consistent with those posted symptoms and information provided.

If indeed there is a hot nodule, then surgery could remove this.  And at least your roller coaster ride will be over but would leave you with a consistent Hypo state and thus need for finding the correct dosage to counter no longer having a thyroid gland.

So just my 2 cents that actually cost nothing.  So take my advice with the weight that you paid for it :)

[Kiwistyle]

I am taking no Thyroid meds of any kind. I have been constantly told I do not need any.

[Kiwistyle]

Actually I did find the T3 results on the November results. It is:
126 with a Normal Range of 71-180. So that appears normal. I have the Thyroglobulin Antibody on here as well. It is: <1.0      IU/mL  Normal Range   0.00-0.9.

The one I had in August 2013. The results read: Impression: A multinodular thyroid appearance is again demonstrated with the larger and more complex nodules on the right side. The dominant right nodule is amenable to fine needle aspiration should be considered given it's size. The adjacent nodule with central echogenic foci should  also be consideration for sampling given the appearance of possible calcifications versus colloid foci.

The current Dr. has not given me a copy of the results of the scan done in his office in Nov except to tell me the day I was there that nothing has changed so really no need for FNA.

It was two weeks later that he sent a message over his Portal to me that I need a FNA and we will talk about surgery if the pressure is too much on my wind pipe. I have no idea why the change of heart as the entire message was what I stated above.

On 07-25-11 I had a Nuclear Medicine Thyroid Scan.
The Results:
IMPRESSION: THE GENERAL APPEARANCE OF THE GLANDS SUGGEST A MULTINODULAR GOITER, HOWEVER, THE VERY INTENSE ACTIVITY IN THE RIGHT MID POLE SUGGESTS ADENOMA WITH DEVELOPING SUPPRESSION OF ACTIVITY IN THE REMAINDER OF THE GLAND, PATCHY AS NOTED.

IMPRESSION: HYPERTHYROID STATE.

On 09-06-11 I had a FNA with Result Benign thyroid Nodule. I hope this additional information helps and you can steer me in a good direction.

Thanks for taking the time to answer this.

[goolarra]

Are you taking thyroid meds?

Your November FT4 is way too low.  It's below range, and FT4 guideline is midrange.

Unfortunately, we don't know what your FT3 is doing.  Your symptoms seem kind of mixed, hypo and hyper, though leaning toward hyper at the moment???

I think the very first thing to do is repeat FT4 and TSH and add in FT3.

How did the nodules appear on ultrasound?

Have you had thyroid antibody tests done?