Anyone have experience with non toxic multinodule goiter

[fergy1128]

I started with 1 nodule accidently found in 2008 and now have 4 nodules and my PCP said I now have " non toxic multinodular goiter".  I have an apt with the endocrinologist on Tuesday and would like someone with the same experience to give me suggestions on what to ask.  I already was told to ask for the antibody tests to check for Hashimotos disease.  My PCP wants me to have a biopsy because the nodules have become more solid.  I had a FNA biopsy in 2010.

[fergy1128]

Free T3 =  2.6 pg/ml  range 2.0 - 4.4
Free T4 = 0.86 ng/dl range 0.82 - 1.77

TgAB = <1.0 iu/ml    range 0.0 - 0.9
TgAb  is not yet available

Barb, does this mean that I am Hypo because the T3 and T4 are low but I do not have Hashimoto's because the TgAB is less and 1%?  Or do I have to wait for the TgAB comes in and if that is high then I will have Hashimoto's?

[fergy1128]

Well I got my blood test done but I don't know what they mean, here they are:

Thyroglobulin AB - We have received your specimen and it has been forwarded to another laboratory for testing.  Results will be forwarded to you as soon as possible.

Thyroglobulin TG -- Will Follow

Thyroxine (T4) Free Direct  0.86  range 0.82 - 1.77

Antithyroglobulin Ab
Thyroglobulin, Antibody  <1.0  range 0.0 - 0.9

*** Effective October 19, 2015 Antithyroglobulin ****  
AB will be made non-orderable.  LabCorp will offer Thyroglobulin Antibody.  For further information please contact your rep.

Thyroid Peroxidase (TPO) Ab  5  range 0 - 34

Triiodothyronine, Free, Serum  2.6  range 2.0 - 4.4

[fergy1128]

Thank you!  I honestly think everything will be fine.  :-)

[898_1]

Best wishes and blessing!!!

[fergy1128]

I haven't had the first opinion yet.  LOL!  The endocrinologist saw my results and suggested that I see a head and neck cancer surgeon.  She did not give me an opinion other than she wants me to see the surgeon.

I did receive my Afirma results and got excited when I saw that it said Gene Expression Classification Benign and MTC Neg.  Then I read the disclosure at the end that said:  Performance characteristics not defined for nodules less than 1 cm diameter.  Clinician should therefore exercise caution in using this result for treatment decisions.

I appreciate your feed back and feel better knowing that the chances of cancer with my cytology is 25% but I am still going to see the cancer surgeon to see what his opinion is on the results.  Your research sounds to be from a study, of which I did not participate and I may have additional risk factors that would put me personally at a higher risk than 25%.  But the 25% is promising.

I will get my blood test done on Monday for the antibodies and hopefully have them when I meet with the surgeon the following week.  Everyone is unique and depending on the risk factors that the surgeon gives me will determine how I proceed going forward.

[898_1]

Based on my research it sounds like follicular neoplasm (chance of cancer is 25% cases) but not like cancer. The typical cytology of cancer shows overlapping nuclei and nuclear groves. Please seek the second opinion!!

[fergy1128]

The cytologic preparations are moderately cellular and show an increased number of follicular cells in crowded or microfollicular groups.  Some of the follicular cells are enlarged and show nuclei with pale chromatin.  Relatively scant colloid and occasional macrofollicles are also seen.

Afirma GEC Result: Pending
Afirma MTC Result: Pending

[898_1]

Certain features of Hashimoto's cells are very close to cancer and can be confused with cancer. Please get the description of the findings for the suspicious nodule!

[fergy1128]

Well I got my biopsy results yesterday and 3 of the 4 nodules were benign.  The smallest one, the one that they almost didn't biopsy, is the one that has cancer.  I have been referred to a Head and Neck cancer surgeon for further evaluation.  The Afirma results are still pending.

I also have to get the antibody test done because they said if I have Hashimoto's that will be a determining factor on what course of action the surgeon will take.   If I don't have Hashimoto's they might take a wait and watch approach but if I do have Hashimoto's they might just take the thyroid out.  I will know more after I see the surgeon on Oct 5th.  At least I don't have to wait 3 weeks to get in to see him.

[fergy1128]

I had a very light bruise for a couple days on the right side only.  It just looked like a shadow.  I have 2 nodules on the right side, one is small, less than 1cm and the other is the new one that just appeared in the last three years and is 1.2 cm.  They are very close together and she had to do a lot of  digging around to get the sample from the smallest one.  I assumed that was the reason for the bruise.

I guess it doesn't matter but I was just curious.  It was nice to not have the throat issues for a few days.

[898_1]

Was there a bruise on your neck after biopsy? Also the solid nodule could actually have some fluid component in it (cystic degeneration, complex nodule)

[fergy1128]

Maybe.  I know that the radiologist mentioned to me that 2 of the nodules were vascular, one on the right and one on the left.  I do know there was definitely a change after the biopsy.  Even my significant other said he could tell my voice wasn't as raspy but it is coming back.  I do have the "something stuck in my throat" feeling again.  And the mild sore throat has returned as well.  Nothing I can't live with but still annoying.

[898_1]

It will be a wild guess but it has something to do with blood flow into the nodule.

[fergy1128]

Called Radiologist on Friday afternoon and was told that the last nodule results have come back from the lab an hour before I called.  I asked when my doctor would have them and was told Monday or Tuesday because their reviewer has to look at it first.  So I called the endocrinologist office and told them the results were in and the Dr would have them by Tuesday and I made an apt for Wednesday at 2:00 PM, which I was surprised and happy they got me in so quickly after waiting so long for results.

So I have taken 1/2 day off work just in case I have to wait 1 1/2 hrs past my apt time to see the doctor again.  URGH!  So I won't be stressed about going back to work.

I will let you know what the results are.  I had a strange thing happen after my biopsy, the lump in my throat seemed smaller and not so bothersome.  But yesterday my voice was hoarse again and today my lump is there again the same as pre-biopsy.  Any idea what that might be?  The nodules are on both lobes but the Isthmus was said to be normal.  The thyroid is classified as goiter so maybe that is what is causing the pressure.  All 4 of my nodules are hypoechoic and solid so that rules out cysts that had fluid removed and then filled up again.  I am just curious.  I was excited when I got some relief for 10 days.  :-(

[fergy1128]

I called the radiologist today and still no results.  I asked the girl "Theresa" why it takes so long.  She said that my doctor only likes her biopsy samples to go to one specific lab and to have one specific cytologist analyze them.  I have no idea why maybe for consistency in results, maybe she doesn't trust just anyone or maybe she is related or somehow associated with this particular cytologist, I don't know.  But Theresa told me that I could call back every day if I wanted to she didn't mind and she understands my frustration.

So today I decided, no news is good news, and I have been dealing with this for 7 years what is another week right?  I also was informed that it is 7 - 10 business days it takes to come back.  Today was day 6 so I will call tomorrow and Friday and Monday.  If the results still aren't in by Monday I am going to see what other steps I can take.  This is utterly ridiculous and I am not going to let myself get stressed out by it any longer.  What is really irritating is they won't call me when they come in but they will tell me if they are in or not when I call?  Horrible patient service!  I will never use either of them again, the endocrinologist or the radiologist.

[Barb135]

Forgot to mention that - yes, Hashimoto's can be diagnosed via FNA, but it sometimes missed.

[Barb135]

Oh my, I'm sorry this has been so frustrating... it sounds like your endo is simply trying to get more office visits from you.  Your pcp seems to be much more reasonable about the whole thing than your endo, for sure.

7-14 days sounds like a long time for results of an FNA to come back; most people we've seen, get them within a couple of days.

Don't worry about venting - we all have to do that, now and then... be sure to keep me posted.

[fergy1128]

Unfortunately, I called the endocrinologist office yesterday to see if the results of my FNA biopsy were there and was told no they were not.  So I cancelled my apt for this morning.  I then called the radiology lab where it was done and they said that it takes 7 - 14 days to get the results?????

I was so annoyed.  I told them that a girl in my office had a FNA of her thyroid done a couple of weeks ago at another radiologists and she got her results in 2 days!!!!  The lady said well it depends on what they are looking for.  So I asked what they are looking for and was told "you will have to discuss that with your doctor".  WTH?  So I told her to send a copy of the results to my PCP and I would just follow up with him.  She tried to tell me that she could only release the results to the physician who ordered them but I quoted the AZ law that states that they have to give the results to whomever I say they give them to, including myself.  

So I called the endro's office and asked them to notify me when the results come in and they said they couldn't do that, I have to make an apt for the end of next week to discuss them with the doctor and the results will be there by then.  I told her I will never step foot in that office again, and I will get a copy of the test that was performed on me and paid for by my insurance.  

So I decided that I am going to call the radiologist every 2 days to see if the results are in until I can get them.  My PCP only wants to see me if there is a problem.  If the results are benign he will just leave a message saying everything was fine and there is no need to make an apt unless I want to discuss the results with him.  Or he will leave a message saying the results are in and he would like me to make an apt so we can discuss them if he feels there is an issue.  The endo is insisting that I make an apt when she hasn't even gotten the results back.  

Sorry for venting but I am VERY frustrated!  During this whole debacle I did find out that they can detect Hashimoto's from a FNA biopsy so maybe that is why it is taking so long.  I should have just had my PCP order the FNA biopsy instead of going to an endocrinologist.  He is the only doctor that I have gone to that really cares about medicine and not just making money.

[Barb135]

I'm glad the biopsy went well.  As you say, it's simply a waiting game now, to see what the results are...

Hopefully, the results will be available by the time you see your endo next week.  Do let us know when you get the results.

[fergy1128]

I had my biopsy today.  First the tech did the ultrasound and told me that I have 4 nodules but the Dr might only biopsy 3 because 1 is less than 1 cm.  She went to talk to the Dr then came back in and said she is going to do all 4 because they are all solid.  I was going to insist on all 4 if she didn't so that worked out well.  hahaha

The Dr came in and said that looking at the ultrasound she believed they are benign.  Then she started the procedure and found that one of them on the right was vascular and later one on the left is also vascular.  She took multiple samples from each nodule.  It took an hour and 10 minutes for the procedure that was suppose to take 30 minutes.  I was pretty sore all day.  I did go to work afterward and just drank ice cold drinks all day and soft food like they told me and I feel better tonight.  Just a mild sore throat and neck.  

When she finished she said that the nodules being solid is a concern and with two of them being vascular that is an added concern.  Then she said we will have the results in a week, maybe longer.  I told her I have an apt with my endocrinologist next Tuesday and she said to call on Monday to make sure she has the results because she might not.  That was disappointing.

So now I just wait and see.  I have learned from mine and others experiences that they really do not know the results until the lab processes the samples.  I do feel confident that she got them a good sample of the nodules so whatever it comes back as I will sleep good at night knowing there was no mistake.

[Barb135]

You're welcome... I'm leaning toward Hashimoto's, as well because it's the # 1 cause of hypothyroidism in the developed world and there are a lot of people suffering from symptoms of undiagnosed hypothyroidism.

Doctors don't take the time to explain things adequately, but the better you understand it, the better your decisions will be, in the long run.

[fergy1128]

Thank you for the explanation.  That makes perfect sense now.  I agree with you I am leaning toward Hashimoto's.  It seems to be the more logical explanation for my symptoms over the years.  

I will let you know how the biopsy turns out.

By the way, I have learned more from you than I have from any of the doctors that my insurance has paid hundreds of dollars to.

[Barb135]

When you have Hashimoto's, as I suspect you do, your body sees your thyroid as foreign and produces antibodies to attack the thyroid gland. Those antibodies are, either, Thyroid Peroxidase Antibodies (TPOab) or Thyroglobulin Antibodies (TgAb).  As healthy thyroid tissue is destroyed, over a period of time (usually years), the thyroid produces less and less thyroid hormones on its own, until, eventually, it produces none; this is what causes us to end up hypo.  It's, typically, the autoimmune response from antibodies that causes swelling/inflammation of the thyroid, but it's low thyroid hormones that causes other, hypo symptoms, such as fatigue, weight gain/inability to lose weight, constipation, hair loss and others.

Many nodules are overgrowth of thyroid tissue.

Good luck with your biopsy on Tuesday... Let us know how it goes.

[fergy1128]

OK that makes sense.  It will be interesting to see if this endocrinologist considers me hypo since in the past when my tests were in the "normal range" they said I was fine.  I am sure my levels have been low for several years and that is why the nodules keep growing and my thyroid continues to be inflamed.   I have been symptomatic for YEARS.  It is so frustrating that doctors rely solely on test ranges and disregard the patient symptoms.

I am hopeful now that they will treat me with hormones rather than surgery.  I believe having some natural hormone must be better than none.  My biopsy is Tuesday then my apt with the endocrinologist is the following Tuesday.  I will keep you posted.