# In the same boat with Tally25 - unsure about surgery



## I DClaire (Jul 31, 2011)

I didn't want to hijack Tally25's thread by talking about myself but I don't know but what I'm dealing with a very similar issue - whether or not to have my thyroid surgically removed?

I'm 64, I was originally diagnosed with Hashimoto's almost three years ago. I've had ultrasound/scans/blood tests every 6 months. I've been told I have several growing nodules and more new ones show-up with each US. I've been told my nodules are "cold".

With Methimazole (generic for Tapazole) my blood test numbers are normal BUT I still have so many symptoms that impact my quality of life, #1 being palpitations. Metoprolol (generic for Toprol) keeps my blood pressure/pulse normal but only takes the edge off the palpitations.

I absolutely love my endocrinologist and my cardiologist. Palpitations and a rather sudden elevation in my normally perfect blood pressure/heartrate actually led to my diagnosis of hyperthyroidism.

I've recently seen both specialists. My endocrinologist initially said I needed a FNB but quickly said it was often not a reliable test. I asked what her thoughts would be if I had my thyroid surgically removed and she seems to be recommending that, she said she thought I would feel better, get my energy back, be happier, etc. She explained that I would need medication for the rest of my life but she thought overall I'd feel more like myself.

I absolutely have not felt normal since all this begun. It seems like I've all but lost all sense of who I am over the past 3 years - fatigue from either the Hashimoto's and/or the high blood pressure drugs keeps me totally lethargic. I'm usually in a bad mood because (I believe) the level of fatigue I feel is so overwhelming and frustrating. My blood test numbers are good but I feel horrible...and I can't help wondering if having my thyroid removed and hopefully the thyroid hormone level stabilized with a supplement will give me my life back _or not?_

I've talked once to a good surgeon who seems to join my other two specialists in saying it's up to me. I've never felt so bewildered in my entire life - I want to KNOW what I can expect from surgery and I'm worried it might produce a situation worse than what I'm already trying to deal with.

I'm sorry this is so long but I have another consideration. With each US, I have new nodules and the older ones are growing. The biggest is now 3 cm. If I delay having my thyroid removed, won't the nodules continue to grow and the surgery be more complicated the longer I delay?

I will be forever grateful for anyone who can share their personal experiences or suggestions or anything. I am so desperate to learn enough to feel like I'll make the right decision. I've had major surgery in my life but it has never been my choice to have it or not. I'm not even sure but what the stress all this is generating this summer is exacerbating a sense of total depression.


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## webster2 (May 19, 2011)

Welcome, sorry for what brings you here. If I can be of any help to you, I will try. I had a second thyroid surgery this past Thursday to remove the left half of the thyroid. The other side was removed 20 years ago.

Is there something specific you'd like to know, or should I ramble on?


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## webster2 (May 19, 2011)

I agree with your doctor that the FNA is not always accurate. I declined them twice. The doctors were comfortable with that decision for the same reasons. Also, that I had decided that surgery was the route I wanted to take. RAI scares me. The first time I had this done, I had a hot nodule. There was no real prep for it, and it was over in 2 weeks from diagnosis to surgery.

This time I was diagnosed with Graves disease and one cold nodule at 3cm in June. It was almost 6cm when removed. I am glad it is out, just waiting on the pathology. Also this time, I needed to be euthyroid to operate. I took methimazole and atenolol for about 8 weeks. The surgery went well. I was home the next day. I feel pretty good. Some of my symptoms are gone or at least I am not noticing them right now. I am a bit concerned about getting the blood levels correct but have faith in my doctors, and the help of folks here to be able to advocate for myself.

Ask a lot of questions, especially how many thyroid surgeries the surgeon does per week or year. I wish you the best.


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## I DClaire (Jul 31, 2011)

Thank you for such quick replies. I'm good with "rambling on"! I hang on every word I find that I can understand. I like the way this forum is presented - I don't know if it's me or there's some software out there that needs medical attention. :winking0001: I think I'll unpack and stay here awhile, if that's O.K.

I have a conglomeration of specific questions but they seem to all be so tied together that I'm the one who feels like I sound rambling.

#1. If I have several large nodules now that are growing (only one was even noticeable 3 summers ago) so fast that one is 3 cm. and the others are quite measurable, won't I eventually have to have surgery?  It seems to me like regardless of the fact that my blood test numbers are normal (with Metoprolol) and I still have quite noticeable symptoms, wouldn't the fact that the nodules are growing be justification for surgery?

I know I have nodules on both sides.

It seems reasonable to me that the longer I wait, the more complicated the surgery will be.

I enjoy singing, I sing with a large church choir. I'm already concerned about the degree of surgery I'm possibly looking at - I don't want to wait a year and be told I should have done something earlier for a better outcome.

#2. The first endocrinologist I saw was rude and abrupt BUT she left me with a lasting doubt that maybe my symptoms are all in my head, maybe I'm depressed. I put no value whatsoever in anything that came out of that one appointment but I also can't shake the fear that maybe, in spite of the fact that I know I'm hyperthyroid, my symptoms are imaginary.

What I've found with this situation is I do not feel well at all but the problems seem to cloud my thinking, I'm tired beyond words, if you showed me a list of 25 symptoms I'd have 95% of them...but I'm told my blood tests are normal with medication.


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## webster2 (May 19, 2011)

Welcome, I do think you should sit down and stay awhile. It is a very nice place with loads of helpful people. Some of them, not me, have lots of knowledge to share. You will find many kindred spirits here.

With the methimazole, I still had lots of symptoms, although not nearly as bad. My blood levels never changed. I think the beta blocker helped the most.

I think with your symptoms, nodules, and that your doctors feel like surgery would be a beneficial option, you are most likely a good candidate for it. In my case, it was left up to me. Since I'd had it before, it was far less scary to me than RAI.

Are your nodules causing you discomfort? It does sound like they, or the thyroid are impacting your life in that you don't feel like yourself.

I was very impressed with the 2 surgeons I interviewed that their background included "care of the professional voice" as well as thyroid and parathyroid. I don't sing or anything but took that to be a huge recommendation of their competency.

I wish you the best. Some others will chime in soon, and help you. Here's to hoping you'll find what you need to make a decision or some info to help you feel better and get back into life.


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## Andros (Aug 26, 2009)

I DClaire said:


> Thank you for such quick replies. I'm good with "rambling on"! I hang on every word I find that I can understand. I like the way this forum is presented - I don't know if it's me or there's some software out there that needs medical attention. :winking0001: I think I'll unpack and stay here awhile, if that's O.K.
> 
> I have a conglomeration of specific questions but they seem to all be so tied together that I'm the one who feels like I sound rambling.
> 
> ...


Welcome to the board. Sounds like you have a dilemma and only you can make the decision based on research and credible comments from others who have had a similar experience.

My thing, especially since there is a cold nodule (and maybe even more they did not catch) would be cancer. I would say to myself, "Why lie awake every night wondering."

But, that is me. This is about you! So we are here to help and we will support you no matter what your decision.

Thyroid cancer in patients with hyperthyroidism.
http://www.ncbi.nlm.nih.gov/pubmed/12876418

Graves' and Hashi's cancer
http://www.thyroidmanager.org/Chapter18/18-cancothr.htm

It is interesting that you are being treated for hyper? Has this always been the case?


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## I DClaire (Jul 31, 2011)

Andros,

I think the one thing that confuses me the most about all this is that I'm treated for hyperthyroidism; I really don't understand Hashimoto's Disease. There is a woman in the choir with me who says she has Hashimoto's but she takes a thyroid hormone supplement; I take what I believe is a thyroid hormone suppressant - and we both see the same endocrinologist.

The last time I saw my doctor (2 weeks ago) I felt so bad I just knew she was going to change something - change my prescription _or something. _ That's when she said my blood work was all within normal range and she could not justify increasing my Methimazole/Tapazole because it might throw me into hypothyroidism.

I asked how my numbers could be so good and my symptoms be worse than ever and I understood her to say (as she has said in the past) numbers don't tell the whole story, that just because medication made my thyroid numbers look normal did not mean my thyroid was functioning normally.

I particularly have problems with heart palpitations so my endocrinologist sent me back to my cardiologist to be sure my heart was O.K. and he said yes, that my heart is strong AND he repeated what he'd said 18 months ago that when I got my hyperthyroidism "under control", he thought my blood pressure/heart rate/palpitations would be fine. He changed my Benazepril and Atenolol to Metoprolol/Toprol and it did help with the palpitations but they're still definitely there.

When I've had surgery in the past it was never optional, nobody ever asked if I wanted to have an operation. I guess I lack the confidence in myself to make a decision, even though my gut feeling is to have the surgery.

You're right - I very much do lie awake at night wondering but not just about the possibility of cancer; all I seem to think about these days (and nights) is making the best decision so, hopefully, I don't have regrets later.


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## Tally25 (Jul 19, 2011)

I DClaire- My surgical decision came on no less then two weeks ago. I went in for a U/S I get them done every 6 months due to Hashimotos. I was diagnosed with Hashis almost 6 yrs ago. My TSH has always been in the normal range but fluctuates ALOT..

I saw my first endo doc 3 weeks ago and he said to check a FNA. I went in and they refused- said it was too deep. She referred me to a surgeon. No more then 10 minutes into out appt... He said TT... OMG... Im only 25.. I am scared to death but I am praying that most of my symptoms are from my thyroid and once I get it out I will feel better. Not only my symptoms but also knowing if it is cancer or not.

I have always doubted my decision to have surgery till after it was done. Then it was a sigh of relief because I knew I did the right thing. I know you will too.


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## McKenna (Jun 23, 2010)

Hi and welcome from me too!



> I think the one thing that confuses me the most about all this is that I'm treated for hyperthyroidism; I really don't understand Hashimoto's Disease. There is a woman in the choir with me who says she has Hashimoto's but she takes a thyroid hormone supplement; I take what I believe is a thyroid hormone suppressant - and we both see the same endocrinologist.


For some people with Hashi's, they swing from hyper to hypo several times. You may either have gone hyper, or you may actually have Graves' as well as Hashi's. It's all so muddy sometimes! I have Hashi's, but had high TSI, which is usually what you see with Graves'.

It's not an easy decision. My life came to a screeching halt when my thyroid decided to go crazy. Plus I had a large cold nodule with inconclusive FNA. My feeling was that my nodule was only going to get bigger and I may grow more, plus it was so out of control, flipping hyper to hypo, and I felt it may be better controled by having it out and thyroid meds.

It's been 9 months since my TT, and even though I'm still going through the regulating process with meds, I feel better than I have in a year. It takes a while to get meds right, then some time to "heal" the damage thyroid disease did to us. I'm patient and hopeful for the future.

I wish you the best with your decision. We're here if you need to talk it out. We understand.:winking0014:


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## I DClaire (Jul 31, 2011)

I wish I could give each of you a hug and say how much I appreciate your advice and hearing your experiences.

I have a good idea I'm going to schedule surgery mid-September. I'd do it sooner but have other family obligations to deal with until then. The surgeon told me to get back with him 2-3 weeks before I wanted to have the surgery.

My mother is 89 and extremely frail. I keep thinking I'll be terribly restricted after surgery but apparently not. I think I could help her more if I felt better myself. One symptom that is about to get the best of me is I'm so miserably heat intolerant and we've had almost 30 days of 100 degree or above temperatures with brutal humidity.

I, thank the good Lord, have good doctors that I really am comfortable with, I'll be at a top notch hospital that is practically walking distance from my house and hopefully everything will go well. I've got to make a decision and find some peace from all the stress and worry or I'll probably end-up in a psychiatric hospital!! :ashamed0003:


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## Andros (Aug 26, 2009)

I DClaire said:


> Andros,
> 
> I think the one thing that confuses me the most about all this is that I'm treated for hyperthyroidism; I really don't understand Hashimoto's Disease. There is a woman in the choir with me who says she has Hashimoto's but she takes a thyroid hormone supplement; I take what I believe is a thyroid hormone suppressant - and we both see the same endocrinologist.
> 
> ...


To be honest w/you; I am not certain that you have Hashimoto's. I did not want to get into all that on the first post! LOL!

Driving a hard bargain here; as far as I am concerned, the only true test for Hashimoto's is FNA whereupon the pathologist looks for and indentifies Hurthle Cells indigenous to Hashimoto's.

Some docs do diagnose based on presence of Thyroid Peroxidase and Anti-microsomal Antibodies. I personally am not comfortable with that.

http://www.thyroidmanager.org/Chapter8/8-frame.htm

( The words Hashimoto's and Thyroiditis are used interchangeably)
http://www.ncbi.nlm.nih.gov/pubmed/19623156

And many who do in fact have Hashimoto's supposedly go through a hyper stage. It's an enigma to be sure. My favorite saying is that, "Hashimoto's and Graves' are sisters in the 'hood!"

I will keep you in my prayers about all this.


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## I DClaire (Jul 31, 2011)

Andros,

Why do you suppose there is so much _confusion_ (for lack of a better word) when it comes to diagnosing thyroid disorders? I've been dealing with this for 3 years, I've repeatedly seen my internist, two endocrinologists, an Ear, Nose & Throat specialist, a cardiologist and the staff at the hospital's radiology department knows me by my first name! I think I've had either 5 or 6 ultrasounds, 4-5 nuclear scans, nuclear heart tests, a barium "swallow" test, at least 10 or more extensive blood tests, an adrenal test - and - on top of all this, I cannot honestly say I know what I'm dealing with.

As God is my witness, the first endocrinologist I saw, the one who was so abrupt, flippantly said, "Well, you could have Graves or you could have Hashimotos; I don't know but what the simplest thing to do would just be to have your thyroid removed."

I've never had a FNA because the endocrinologist I've thought was so conscientiously trying to help me said the results are seldom reliable. That's the point where (2-3 weeks ago) the subject came up with her that maybe I should consider having my thyroid removed.

Who, other than the patient who gets a FNA diagnosis of malignancy can honestly trust the test? I was told what % of the time the test does not identify malignant cells but I've forgotten the statistics. I know one lady here who had a nodule the size of a walnut removed and her endocrinologist never could get a FNA sample because the nodule was hard and kept moving. The lady in choir with me said they never could get a FNA sample from her nodules because they were like "Jello".

I think all that (and I did discuss this at length with my endocrinologist) gives me reason to think I'd never be confident I didn't have any malignant cells even if I got a benign report.

Pretty much the same thing with blood tests. It's my understanding that thyroid blood tests aren't 100% reliable - that things like bath soap, shampoo, deodorant, etc., can alter the test results.

When people ask me what's wrong with my thyroid I always have to say I honestly don't know enough to even begin to explain it.


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## anxiousme (Feb 22, 2011)

Awwww welcome my friend. Don't worry you are not alone! I will be going there right with you. I so understand how you feel, surgery is a scary thing. I have canceled 2, I'm a nervous wreck. I will be trying again next Fri. the 12th. I'm petrified, :sad0049: but after 7 months of dwelling, worrying, palps, chest pains etc. you name it I have had it, I think I'm killing myself more then the surgery would. I know I have to do this, and I think your heart will tell you what to do to. Know this we are here for you, and you are not alone. :hugs: Debbi


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