To remove or not too remove!!

[Travdon]

Hi everyone,

I wonder if anyone could help me with the grey area that is thyroid problems! Around a year and a half ago I noticed a swelling on my neck that later turned out to be a multinodular grade III thyroid goiter with a prominent nodule. My blood work came back within normal limits and I underwent FNA of the prominent nodule. The results came back benign on this one and I was followed up with another FNA six months later (aug this year) the results of this are as follows:

Scattered groups of thyroid follicular cells with hurthle cell metaplasia, no micro-follicle pattern is identified. Patchy slight excess of lymphoid cells in the background in keeping with a benign thyroid.

My ENT consultant has said that he is pretty confident it is benign but couldn't give 100%, he has offered removal of it as it sometimes affects my breathing at night and although not noticeable as such I know its there! I have researched these things thoroughly and am concerned about the presence of hurthle cells the most as I have read lots of conflicting stuff about them. My dilemma is do I go ahead with an op that may be unecessary or do I take the risk of leaving it and it turning out to be cancerous after all! I should also mention that I have also had bloods done for thyroid antibodies to rule out hyperthyroidism and these have all been fine too.

My consultant said If I decide not to go with the op they won't need to see me again unless I notice changes, this also worries me as clearly there is a problem that could grow or turn nasty so surely it should be monitored?? Here in the UK they work on a grading system from 1-5 five being the worst, mine is at a two and they don't recommend removal until it reaches a three although that is still an option.

If anyone could offer any advice on whether to leave or remove I would be really grateful as haven't stopped worrying since it appeared!!

Thanks,
Donna

[Barb135]

I'm happy that I may have been able to help clarify things a bit more.  

Having the thyroid removed is a big step because once it's gone, you are destined to be on replacement medication for the rest of your life, and admittedly, this can be a challenge if you don't have the right doctor, but on the other hand, risking cancer scares me to death......

Every bit of testing needs to be done before you make a decision.  Please do all the research to make sure you are making the right decision.  We can provide you with a lot of reading material, but just going over the posts here, will give you a host of information.

[Travdon]

Hi Barb,

Yes I can relate to some of the symptoms of hashimoto's tbh, also the specialist advice I have received from this site has said my results may indicate this. I cannot begin to tell you how much I appreciate you taking the time to reply and all of your fantastic advice. I am relatively new to all this and I can see that there are so many people with far greater problems on here so am truly grateful to you all for sharing your knowledge with me.

I will most certainly be putting this to my specialist and requesting further tests as suggested by you before I make my mind up.

Thanks, take care
Donna

[Travdon]

Thanks firefly thats really helpful advice, if I decide to leave it for now I will definately do that.  Really appreciate you taking the time to reply.

Many thanks
Donna

[Barb135]

Do you have symptoms of hyperthyroidism?  Your FT3, which is the hormone actually used by the individual cells, is quite high in its range, indicating that you could be hyper.

TPOab is not the only antibody test you need, to determine an autoimmune disease.  TPOab is generally, done to determine Hashimoto's Thyroiditis, but can also be present with Graves Disease.  To rule out Hashimoto's, you also need the Thyroglobulin Antibodies (TGab), since some people have only TPOab, some have only TGab, and still others have both.  The definitive test to rule out Graves Disease is Thyroid Stimulating Immunoglobulin (TSI).

While Hashimoto's is usually associated with being hypo, it can be characterized with periods of hyper, as well, so should be confirmed or ruled out, for sure.  If you  have either Hashimoto's or Graves Disease, your thyroid will eventually be destroyed by antibodies and you will end up hypo and on replacement medication, anyway.  

While we can't really advise you on what to do, I, personally, would be worried that the doctor can't give you a 100% answer and wouldn't want to take any chances on whether or not, it may be cancer, or that cancer may develop at some point. You'd have to make sure that your gp is willing to monitor often enough to catch changes immediately.

[firefly7]

Hi Travdon, I'm a worrier too!    One option for you is to just mark you calendar for a year from now and then ask your gp to reorder an ultrasound to make sure there are no changes or to refer you to even a different specialist if need be.   I'm learning we have to be Take Charge type patients with thyroid issues!

[Travdon]

thanks firefly, your post is very helpful to me and I totally take on board all your comments. My consultant has said if I opt not to have the surgery then he will put me back to my gp and I won't get any more follow ups unless I am re-referred. This is whats worrying me. Obviously its good that he is so confident all is well that he will sign me off but on the other hand I am concerned I may not notice any changes myself and therefore they will get missed. I guess I am natural born worrier! but in my mind these things are usually there for a reason and I can't get my head around the fact this goiter has just appeared if all is well.  Wow sounds like you've had your fair share of thyroid issues!  Best wishes, Donna

[firefly7]

Ultimately it's about the decision you can live with.  But if it were me I'd let it ride and not do the TT.   I've got Graves and before that was hypothyroid for years untreated.   One thing I've learned is that many doctors have a hard time balancing thyroid hormones - so if your thyroid works right now, let it keep working for you as long as it can.   If you take it out, you will have a long-term relationship with medical community for the rest of your life to manage your thyroid levels for your basic well-being.   I'm discovering it's a ride you really don't want to be on.   With frequent ultrasound monitoring, any changes in your nodules can be caught early and you can always do another FNA then.  I have nodules myself and am doing frequent monitoring.  Wishing you luck!

[Travdon]

Hi Barb,

As promised my blood results are as follows:

Serum TSH level - 0.61mlU/L - lab values: (0.35-3.5)
Serum free trilothyronine level - 5.7 pmol/L - lab values (3.8-6.0)
Serum free T4 level - 16pmol/L - lab values (8.0-21.0)
Thyroid peroxidase antibody level 10.4ku/L - lab values (0.0-34.0)

As you can see they are all within normal lab levels, would welcome any info you might have regarding these.

Thanks
Donna

[Barb135]

Because it's very difficult for us to comment a lot, without seeing actual blood test results, I will look forward to seeing yours.  

I rarely trust "normal" blood tests, because many people who fall into normal ranges have a lot of symptoms and can actually benefit from treatment, even when the doctor thinks not.

It's often not so hard to figure out what's going on when we have adequate information (test results and reference ranges) .  Then your job is find a doctor that will treat appropriately, to alleviate symptoms.

[Travdon]

thanks barb, my mistake! I meant to put autoimmune diseases and not hyperthyroidism. I have had my thyroid profile bloods done also and these have come back with normal limits in respect of the lab values. I will obtain the results and post them on here asap. Yes I agree with other members it does seem hard to get answers and treatment for these issues. Thanks goodness for sites like this! I really appreciate you all taking the time to reply :-)  

[Travdon]

thanks for your comments, thats very helpful in making my decision. I hope you managed to regain your health.

Donna

[Barb135]

"I should also mention that I have also had bloods done for thyroid antibodies to rule out hyperthyroidism and these have all been fine too."  

Antibody tests don't rule out hyper or hypothyroidism.  Antibody tests rule out autoimmune diseases.  Exactly what test did you have done to "rule out hyperthyroidism"?  

Please post whatever thyroid related tests you've had done, along with results and reference ranges, which vary lab to lab and must come from your own report.

We hear from many of our UK members that's it's very difficult to get proper testing/treatment for thyroid issues, due to the strict NHS guidelines.

[dcarter31]

I have thyroid medication dose issues two.  It amazes me how fast it can change when I seem to be taking it consistantly on an empty stomach.

[dcarter31]

Honey,

Don't take the chance.  Your ENT is right, it's probably benign and the surgery can be put off unitl it's convenient for you.  I put off having surgery (same results as you multinodular goiter, but with inconclusive FNA) for two years.  My goiter was benign but they found papillary cancer in the remainer of my thyroid.  In my humble opinion, if you're young you shouldn't take the chance.

[Totie]

List all your pros & cons on a piece of paper & discuss with your close family & family doctor.

I did not have the option on the thyroidectomy. You will have hypo issues after surgery.

19yrs later & I am still dealing with thyroid dosage..I can't say it stopped me from living my life, but you will have your good & bad days. I guess no different than life..

[Travdon]

Thanks for your reply totie, I hope your health problems are resolved now and I appreciate your comments. I have a few weeks to think about it before I have to make a decision so guess I will cram some more research in!

Regards
Donna

[Totie]

That is a tough question. I once had to decide on something like that. (5yrs ago) I had a deep pelvic tumor and the location made it impossible to do a FNA on it. I met with the surgeon who told me that I could leave it or have the laparotomy. If left he could not gaurantee it was not cancerous or turn canerous down the road. I was 38.

I went a head and had the surgery, but it turned out that at the same time I had an ovarian complex cyst so I actually had my gyno go in and do her surgery, then the second surgeon came in and did his part to remove the tumor. It came back as weird tumor, but NO CANER....

I guess it is really something to think about. I had a TT almost 19yrs go.