This is part 2 in our series of articles from guest writers on what awareness means to them in honour of Thyroid Awareness Month. If anyone would like to contribute their own article on this topic, I would be happy to publish it.
At the age of 44 I was diagnosed with follicular thyroid cancer. It was October of 2006 and my son was just five years old. I am now cancer free but no longer have my thyroid so I depend on a pill to replace it. So far it has been an ordeal, more so than I or my family realized it would be. It took me a long time to understand that my levels fluctuate and when they do I need to get bloodwork done to determine if my dosage needs to be changed. The process is long; the medicine takes a while to adjust. I have learned to be patient, I have no choice really.
Thyroid disease is often misdiagnosed and misunderstood. It is difficult for many to understand how thyroid disease and cancer can wreak havoc on your mind and body. I’ve made a few mistakes along the way and am finally beginning to understand everything about thyroid disease – the quality of my life depends on it. My family and friends deserve better than this from me, my swinging hyper to hypo is not fair to them so I will do all I can to stay on top of my disease. Yes, even though I am cancer free I still have thyroid disease because of it. I will have it for the rest of my life. My type of thyroid cancer has a higher rate of recurrence. I can live with all of this as long as I feel I have a grip on my mind, body and soul and I do. But I can’t say I always have.
Here and there I post things about thyroid disease. I feel it is important to raise awareness and hopefully help someone who may not know that they have this wretched disease or for those that do to realize that there are ways to live a better life and get the proper care and treatment they deserve. I want more than anything to turn my negative into a positive for others. It is important to me. I want to make a difference. I don’t want others to suffer unnecessarily and live in denial like I did. I’m willing to put myself out there and share my mistakes if you are willing to ask the questions.
So first things first, do you check your neck? Do you ask your doctor to run bloodwork to determine your TSH level? Do you understand what your thyroid does and what it will do (or not) if it is not functioning properly? Do you mistakenly think this is just about women? Do you know your body and react if something is not right? Are you an advocate for yourself?
I am by far not an expert about thyroid disease and I am sharing my experiences but am not a doctor. I do know enough now to react to what my body is doing. I know that breathing problems, heart palps, anxiety, hand tremors, body aches, weight loss and being exhausted mean I am hyperthyroid and need my Synthroid reduced. I know what being hypothyroid is too. It’s different for everyone to some degree but there are lots of symptoms that mirror other illnesses and that is where much of the problem in diagnosis lies. Your thyroid, or lack thereof, deserves attention. You just may not know it.
There are lots of supportive and informative websites on chronic illness and thyroid disease. If you take a peek, you will find links to all kinds of wonderful information that may pertain to you or someone you know. I have met some fabulous online friends who are open and honest in a very real way. Reading about others’ experiences made me finally choose to be more proactive about my own health and I believe this has directly impacted the quality of my life.
This is a new beginning for me. It’s a process for sure. If I can make a difference and touch someone’s life in a positive way, it will have been worth it. Bear with me, awesome friends, be patient and put up with my health posts, LOL. And if you could, please share some of my posts on your Facebook wall, you never know, you could make a big difference to a person suffering. Thanks for listening and putting up with me. I love my online friends 🙂
Enjoyed reading your article, Donna! Becoming sick and then not improving (like they said we would) sure does make it a necessity to become knowledgeable in order to return to living again.
Hey Lori,
Thanks for your comment. It really rings true!
Love,
Sarah
Thanks Lori and Sarah!
If not for the brutal honesty of other patients sharing their stories I would not be in control of my disease. It prompted me to get a new intern who believes that if your thyroid is screwed up it is going to affect your mind, body and soul. My endo met a new person this year and it felt great to walk out of her office with 5 scripts for bloodwork whenever I feel the need. That would not have happened if I was not armed with knowledge about my disease and firm about what I needed from here. I lost too much time chasing my health.
FYI: I think it is important to share how our bodies change. My dose of synthroid started at 112 mcg four years ago and increased to 125 to 137 to 150 and now after eight months of bloodwork every six weeks I am back to 112 where I started. I think peri-menopause was what really almost took me down and the endo has confirmed I am probably right. How nice of her to confirm what could have been addressed from the very beginning right?
I hope anyone who reads this can learn from my mistakes. I have made plenty.
I think it is all down to others being honest. It encourages us to be honest ourselves. I have written about some pretty embarrassing and personal topics for precisely this reason. Meanwhile, I don’t see most of them as embarrassing because I am just writing about my experiences and I know that it helps others.
I’m so glad that your new intern realises that the thyroid can indeed affect the whole body – both physically and mentally. Luckily for me, my GP is also very thorough, he does all the tests needed and he is also open to trying new things.
Congratulations on being able to lower your dose of Synthroid! I am pretty sure you are not alone in having perimenopause cause even more problems for your thyroid. I am hoping that by the time I go through that my thyroid will have been balanced for long enough so that it will be a less bumpy ride than it is for many people.
I think we’ve all made mistakes – put up with the wrong doctor for too long, not listened to our gut instinct. It’s human nature and we learn from them and move on, but that’s why sharing our experiences helps others too so that they can learn from them in turn.
Love,
Sarah
Good for you Donna taking control. That’s what it comes down to really, speaking up for ourselves, although I know it’s not that easy for many to find a doctor who will listen and is willing to work with us. I agree it’s important to speak out and share out experiences, as we learn so much from each other, not to mention the support it provides. I believe you are right about perimenopause. I’ve been through the same thing. The symptoms it causes are very similar to hypothyroidism, in addition to it affecting thyroid hormones. I am now menopausal and it has caused quite the unpleasant rollercoaster ride. I am treated by a hormone specialist who has been following all hormones and I’m now taking bioidentical estrogen. Last check my estrogen went from 86 to 14 and before that had been up and down like a yo-yo, so hopefully next visit things will have evened out enough so that I won’t need too many more adjustments. (so far other sex hormones have stayed good) Never thought I’d be wishing for menopause, never mind wishing for it to be over. I am steadily running out of energy again so I’ll likely need my NDT adjusted once again, which I was expecting. Hopefully I’ll tolerate a small increase and it won’t push me into hyperT like it did last time. I started on DHEA-S last visit also. Sometimes it seems like it’s taking forever!
It sucks right? Being hyper, peri-menopausal and taking only 1/2 klonopin a day so I can recognize my symptoms makes a perfect recipe for disaster, lol. I do feel so much better though, a day I was not sure I would ever see again.
That’s cool that you are seeing a hormone specialist and it is helping. I have an E-ring (estrogen ring) that I insert into the “vault” for three months which only circulates in your lower area. It has helped with some of the symptoms.
Uugh, to be young and healthy, lol. xo
Hey Lori. We really do have to be our own advocates in all this. It can be frustrating and exhausting at times, but generally I find that it pays off. I really hope your specialist is able to get everything balanced really soon and that the small increase in dose does not make you hyper. Keep me posted!
Love,
Sarah
The article was great- I was wondering what was your signs and symptoms before finding out it was cancer. Did you have a FNA or RAI before taking it out? Thanks!!
Hi Terry,
I had a lump in my neck that eventually resembled having two adam’s apples. Looking back now my voice was raspy and I probably had a dry cough. When I pointed the lump out to my doctor he had my TSH checked and it came back within range so he attributed it to sinus drainage and said we would keep an eye on it. Over a year went by and when people started asking what was up with my neck I asked more be done. I had an ultrasound of my neck and then the FNA. I had one side taken out a week or so later and the other a few weeks after. Then I went through the whole low iodine diet, hypo, RAI jazz. To be honest, as much as that sucked, not understanding thyroid disease sucked more.
I hope you are okay Terri.
I hope you are OK too, Terri. Donna is definitely a good person to ask about questions like this. She is eager to spread awareness and help others. Thanks again Donna for sharing your experiences!
pleasure is all mine 🙂
Thanks, Donna. It’s great when people can share their experiences here – that’s what this site is all about:-). That’s really scary about worrying you had lost your sight! What happened there? I wish the words young and healthy always went together, but sadly it seems more and more people my age and younger are being diagnosed with thyroid disease. This was probably always the case, but perhaps doctors are just becoming more aware of it. Of course, there are still way too many ignorant ones who seem unable or unwilling to help their patients who are desperate to get the right diagnosis.
Love,
Sarah
Thank you so much. I was diagnosed with a nodule almost 5 years ago..and he has been watching it yearly. When I went last October he told me that it had grown quickly in the last year and that is when he told me about RAI which scares me! I have been trying to decide what to do ever since:( I have talked to others that have said that their nodule was benign while their thyroid was cancerous! I got two opinions and both said that could be true–and the only true way to know is to have it taken out. I have noticed that in the last 6 months I am hoarse after reading one book to the girls- then I have pain in that nodule area- sometimes pain when I swallow and my left clavicle area swells out all the time –all signs of cancer even though the drs. say it probably isn’t:( This all is so confusing to me. I have never been out of range but have been borderline hyper forever. What do you all think?
Hey Terri,
I’m not really qualified to comment when it comes to thyca (Donna definitely is though). If you want you can also post your question on our FB board and perhaps somebody else will comment too.
All of this must be seriously overwhelming for you. I’m very sorry that there are no clear-cut answers. I’m also going to mail another thyca friend and see if he can add his input.
Love,
Sarah
Thank you Sarah!
I understand…and thank you for asking someone else for me too..I just emailed the dr. in Ga that I am looking to do thsi surgery and see what he tells me to – anything to ease my mind..I am going nuts:(
Hugs!
No problem, Terri. I can understand why you are frantic. I think I would be too. I wish I could say more to help, but this really is a very complex subject and I think unless you have gone through it yourself, it is hard to comment. I’m hoping my other friend with comment back and I’ve also posted about your comment on the Facebook page. At the moment, however, we are still growing, so comments are still kind of slow.
Do let us know what your doctor in GA says.
Wishing you all the very best. Love,
Sarah
The reason my surgeon did not take both sides at the same time was because he was hoping he could save the other half and now I see the wonder in it. Some thyroid is better than none if it works properly.
It sounds to me that you really need to make a serious decision but you still need more facts. It is good you are putting the symptoms together. The more you know the easier it will be. If the discomfort is more prevalent you need to take action in my opinion. If it is changing it is for a reason.
It may not be cancer tis is true. It only makes sense to me (for precautionary measures you know?) that you would get some additional tests or have them repeated. Do you get bloodwork besides TSH, has anything changed? Even CBC can show is something is a little off that would help justify other tests. Have you had a neck ultrasound and/or FNA? Did he say he wanted to give you RAI to shrink the nodule? Five years could or could not be related to the newer symptoms.
Whatever you decide I am more than happy to recall my part of what applies to your situation. The good, the bad and the indifferent. How old are your girls?
Hello Donna,
If at all possible I always advise that people get a second (even third opinion). Having something taken out of your body is a decision that cannot be reversed – on the other hand, leaving something in your body that might be malignant, is no option either. – When it comes to cancers, usually, the sooner you get them out, the better the prognosis will be (but there is almost always time for a second opinion).
My surgeon said that an ultrasound-guided fine needle biopsy (i.e. the ultrasound guides the needles to the nodules) is the most precise method they have to find out what is going on in your thyroid and/or in the nodules.
Hope that helps a little,
Hang in there, we’re rooting for ya!
HD in Oregon
Thank you very much, HD for sharing your experiences with thyca. You put it so well – indeed, we are all rooting for you, Terri!
Love,
Sarah
Thank you all again!
Yes, I have had 2 FNA over the past 5 years and both times it has been benign- but again what worries me is that the nodule can be benign while the thyroid is malignant. I was told 6 months ago that we need to do RAI on it or take it out..I have been pushing this off “thinking” about it for that long..he said it is really taking off growing (nodule)–I did go for a second opinion and he said that he could put me on a pill to try to suppress it but it probably would not be any good and he could set me up for surgery. The third dr. that I have chosen in GA if I have it taken out said that if it is growing that quick it is not going to stop now..and it was best to take it out-but again I feel doctors so many times are eager to jump on surgery because this is not their bodies. What other tests are there besides the regular TSH tests cause I have never had anything else? Thanks!
Hey Terri,
I know what you mean about doctors being eager to jump on surgery because a friend of mine has a goitre and her doctors are all for the surgery instead of giving her meds, although there is a chance that the meds could help shrink the goitre and she wouldn’t have to have her thyroid out – I mean, isn’t it worth a try? As for the other tests for hypothyroidism, there are the TPO and TRAK for antibodies, as well as the free T3 and free T4 for the thyroid levels that are freely available to your tissues. The TSH alone is not always an accurate test as there are those who appear to have a normal TSH, but in fact don’t have normal thyroid levels. Besides which the TSH is a pituitary hormone that stimulates the thyroid to produce more or less hormone. Generally, they say that a lower TSH than the ranges is indicative of hyperthyroidism and a higher TSH is indicative of hypothyroidism, but there are many people who would never be diagnosed if their doctors just went by TSH – my fiancé and sister-in-law are two of them. Check out this link – if you scroll down, there is a section on thyroid cancer and that section also links to another article on thyroid cancer. That will tell you a bit about the diagnosis process (http://thyroid.about.com/od/gettestedanddiagnosed/a/diagnosis.htm) – what is interesting is that it says: “Between 60 and 80 percent of FNA tests show that the nodule is benign. Only about one of 20 FNA tests reveals cancer. The remainder of cases are classified as “suspicious.” Typically, suspicious nodules are surgically removed for biopsy, to rule out or diagnose cancer”. Not that I am saying you should go ahead and have it removed, but it shows that the cancer might not show up on this test. However, it seems there are also other tests they can do (check out the link in this article).
Love,
Sarah
Thank you Sarah! You guys are absolutely wonderful and I will check everything out. I have the uptake scheduled in 2 weeks- I start the diet tomorrow and I know it is going to be hard- but feel maybe I should do the uptake scan and the RAI if needed. I do, however, have an appt with an ENT next Monday cause I want to rule out anything else in my throat since I have recurrent throat infections and the hoarseness..I thought there might be something going on with my nerves to voicebox etc. and I am thinking all this is coming from thyroid–but I will def. update you guys! Thank you so much!
Hey Terri,
It is very possible for the nodule on your thyroid to be affecting your voice box and I have also heard that hoarseness can be a symptom. I’m very glad that you’re getting everything checked out. You will be in my thoughts. Do keep us updated, OK?
Good luck!
Love,
Sarah
Dear Terri,
Before you embark on RAI treatment or surgery, have a look at http://www.naturalthyroidchoices.com. The woman who runs this site is also the owner of the Yahoo Iodine Health forum. She has had thyroid cancer. She went down the RAI path and after she had had the maximum amount of radiation exposure she still wasn’t cured. She found another solution and has recently celebrated being a 10 year cancer survivor.
I have followed the same protocol as her because I have very large cysts in my breasts (my mother died of breast cancer) and I was found to have funny cells in my thyroid as well. I have had very good results with it.
Hope this helps,
Sarah MacGilchrisst
Hey Sarah,
Thank you very much for sharing your experiences. It is certainly important to be aware of all the options.
Love,
Sarah