Oh - being aggressive with a doctor and how to find a good one . . . my favorite subjects! :-)
Well . . . let me tell you my horror story. I had a full-body scan (CT) which found a nodule in my thyroid. That radiologist suggested I follow up with my doctor. My doctor ordered an ultrasound. Ultrasound showed small "mixed" nodule (some liquid, some solid) - I researched the heck out of thyroid nodules (Google is your friend!!) and decided that, because the nodule was so small, because it was "mixed", and because my gut instinct told me something was wrong I asked my doctor for a good surgeon. (Yes, all my thyroid labs were normal - they quite often are with thyroid cancer). My surgeon removed the right lobe (where the nodule was) but the pathologist didn't find the cancer until I was in the recovery room (too late to take the left lobe out).
After the surgery I was referred to an endocrinologist. It just happened he was the chief of endocrinology at the large hospital I was treated at. So I figured, he's good, right? Ha! First thing he did when we met me was to scream at me for having a "perfectly healthy thyroid lobe removed." After I picked my jaw off the floor and pointed out the fact the nodule had papillary carcinoma in it, he told me I should have seen him first because I could have lived with that little bit of cancer for years.
Then he yelled at me for being overweight (5'3" and 142 isn't slim but it wasn't obese either). He LOVED to yell at me for encouraging my family to get their "healthy" thyroids removed (3 sisters with papillary carcinoma - one into the lymph nodes, other sister "pre-cancerous" and daughter "pre-cancerous"). I put up with it until my daughter's surgery then I just lost it. I told him he was a jerk (okay, a bit stronger than that), grabbed my chart, stormed to the front desk, demanded my records, and told him he and his god-complex were fired. That was the point when I decided I wasn't going to put up with BAD doctors anymore.
I called my regular doctor (in tears), explained what had happened, and asked him who he would refer his wife to if she needed an endocrinologist. I was referred to the most amazing endocrinologist and I'm still with him. He even supported me and said he would have done the same thing when I decided to get the other half of my thyroid removed - just in case (especially with my family history).
I found that's the secret - start with a doctor you know and trust and have a heart-to-heart (even if it costs you a co-pay). Explain what your concerns are and ask your doctor who he/she would recommend if it was their loved one. If you don't have a doctor you know and trust, find a support group or other patients and ask them what they like, and dislike, about their doctor(s). Ask if they have heard of any really good doctors. Keep "shopping" until you find one that will be your PARTNER in health care.
Okay - I'm tired and rambling. Get the results of your ultrasound. If you don't think they were read correctly, ask for a second opinion or for your doctor to look at the films (not just read the radiologist's report). Find out if there are nodules and if those nodules are solid, fluid-filled, "mixed" and if they are "hot" or "cold".
Do all the research you can so you know plenty of things to ask. www.endocrineweb.com and http://www.cumc.columbia.edu/dept/thyroid are good starting points.
And, hey, if you get labeled as a "difficult" patient (or, in my case, worse I'm sure) who really cares? It's your health, your life, your money - insist that your doctor(s) take it as seriously as you do!
Sorry - I just got out of a 4-hour horrible meeting. I need sleep. I hope something in here made sense!
Keep us posted - there is a lot of good advice and experience out here and most of all: love and support!
I appreciate the information and motivation you have both given me in such a short time and welcome anyone's advice. Utahmomma I saw your other post, Thank you.
I saw my famild Dr 8/14 she ordered an ultrasound, esophogus x-rays, and bloodwork. The tests were done 8/23 I think the ultrasound was to see if I had a lump, I came out fine for the other test.
A week after 8/14 I called the clinic to ask for my lab results, they called me said my thyroid levels were very high and they were going to reffer me to an endocronologist. I got the other tests done on 8/23 called them a wk later to ask for those results and my referral had not been worked on, because the receptionist said I had asked her for the refferal of another kind of Dr. which was not true. The ultrasound revealed I had a goiter, that's all I was told.
I saw him 9/28 a little nervous, answered his questions and ended up telling him I felt the right side of my neck was thicker and my right ear had been hurting for some time. He said I was probably checking it too much, didn't say anything about my ear. He couldn't find my lab work that was faxed to his office, another bloodwork was done. He called me said my levels were low and put me on medication. He said he would see me in 6 wks, but did'nt mention anything about my goiter.
He is a nice Dr he took the time to call me first thing in the morning (never seen this). But I'm hoping he takes me seriously, because I'm depending on him. I was going to call him yesterday I have to do this today. I think I have a problem with speaking out to Dr's, I'm trying to work on it.
GravesLady thank's for the web address. I'm sorry to hear you also had an accident, thank God you are still here. I was wondering if when you had your accident by any chance did it hurt to simply swallow right after? I had this happen to me I brought it to my family Dr's attention said it was normal in a situation like that. I know it lasted a while but can't remember when it went away or when I learned to live with it (or ignore it).
I don't really know what to look for or ask an Endo. but any advice or suggestions are welcomed.
Utahmomma and GravesLady I'm really glad I met you both, take good care and God bless. I will keep you posted.
You have not seen the endo yet, right? Ask him to do TSH, FT-4, F-3, and antibodies for both hashi and graves'. Get copies with the Labs reference range - saying normal is not acceptable. What's normal anyway! Normal can mean anywhere up or down the Labs ref. range and some still go by the old TSH levels of 5 or higher. What is normal for me might not be normal for you, or what is normal for the next person might not be normal for me. However most feel best at a TSH around 1.0. One shoe does not fit all!
If doctor didn't mention goiter after ultrasound I would take it as, no news is good news. :)
Ask if endo suggest FNB per your ultrasound of goiter. If FNB not necessary, ask if treated with thyroid hormone T-4 goiter will shrink or would you need surgery.
Perhaps utahmomma can give you more on the goiter situation.
After my accident I didn't have problems with swallowing, just what I mentioned before. Plus my neck didn't feel like it could hold on my head, i.e., it felt like my head wanted to fall off my neck, so I was in a soft brace and off work for a while. It wasn't all that serious, thank God. But I still suffer off and on with pain. I wouldn't be surprised if arthritis hasn't set in by now. I hope your accident wasn't too serious as well.
Be more aggressive with your doctors. I think if you learned more about you thyroid issue, the more confident you will be, and then be able to take the bull (doctors and your health matters) by the horns. ;)
It's nice meeting you as well. Take care of yourself and don't worry too much about cancer, until you have something to worry about, it's a waist of your precious mind and time. Like I mentioned before, very small percentage of goiters/nodules are cancerous. Keep hanging in there and God Bless You! Keep us posted.
You need to get your goiter evaluated by a thyroid professional.
I was in an accident which caused a whiplash 28 yrs ago and I still have problems with pain (no ear problem) down my neck, back/under shoulder blade and sometimes down my arm. I also feel and hear neck crackling, so, I do neck exercises which seem to help.
Synthroid is more stable than natural which comes from a pig and has way too much T-3 and too much for us humans, although some do well on it, if there is no heart issue(s) and you see doctor regularly to be monitored.
Here is the link to the 'Thyroid Disorder Forum' and Dr. Mark Lupo. Give it a try.
http://www.medhelp.org/forums/thyroid/wwwboard.html
Good Luck!
Please get an ultrasound of your thyroid. If you aren't currently seeing an endocrinologist, please find a good one. Your goiter shouldn't be growing at that rate and you shouldn't be getting lumps by your ears (lymph nodes?). Keep us posted.