Thyroid nodules - terrified, PLEASE read

[Serotoninsteph]

Hello everyone,

This is my first time posting. I've taken solace in this forum from afar for quite some time, and now it's time to take the plunge and create my own post since I am in a downward spiral.

This will be a little bit long, and I apologize for that, but I have a lot to say. I hope that some of you will make it to the end and offer some insight. Please read it all if you can stand it.

My name is Stephanie, I'm 38, a wife and mother, writer and photographer living in beautiful North Vancouver, Canada. I've struggled with OCD, depression, PTSD, anxiety and HA since I was young, about ten years of age was when these struggles began making themselves known. The HA was triggered, I believe, by my two uncles and one aunt dying of a rare and degenerative disease when I was in my pre-teen and teen years. Leading up to their deaths, I watched them become different people, unrecognizable - losing eyes, hair, the ability to speak, and more. They were some of my favourite people and I watched these vibrant, intelligent, loving family members get sick, become utterly incapacitated, and slip away.

My main phobia is and always has been cancer. I've had lots of therapy and been on pretty much any drug you can name. I was seen as a kid by an evil psychiatrist who treated me as a guinea pig, and when I questioned him and told my parents and his staff that he was an evil man, he called me delusional and had me thrown in a mental institution, where I was abused. Turns out this psychiatrist was actually molesting his male patients and he lost his license. Anyway.....

I have had bouts of severe depression and anxiety on and off throughout the years, and only recently have had the courage to re-enter therapy (took a lot of soul searching and letting go of trust issues, but I recently began seeing a therapist who specializes in HA - this is VERY new, and I need to give it time, but I am already developing trust in her), and just tonight I downloaded the CBT HA module course that is so highly recommended here. I am currently not taking medication.

The past three months have been all-out war in my head. I have never experienced such intense health anxiety, which was triggered when I found a small lump inside my cheek that occurred shortly after having viral bronchitis. I had two dentists (I sought a second opinion) tell me it was nothing, and both refused to give me a biopsy. I have had VelScope (light that screens for oral cancers and spots abnormal cells/tissue in the oral cavity) twice with normal results. I still don't trust it without a biopsy. I have also had a persistent white tongue, sore throat, cough, small lumps in neck, and metallic/salty taste in my mouth for about six weeks now.

In March I had viral bronchitis, and then it went away, and I felt fine. Then I had the cheek lump discovery and my health anxiety spun out of control, and I caught a cod that has been impossible to shake, and last week the bronchitis symptoms seemed to return. I guess they were there all along, as I haven't been well in nearly two months, but it seemed to get worse again. The worsening cough, the phlegm, etc. Cough is still there, though not as bad, throat is not as sore, and phlegm has reduced but the cough is still present as is the hoarseness and throat clearing. I have been in several ER's, no less than ten times in the past few months, not to mention countless appointments with my GP, walk-in doctors, my naturopathic doctor, and an ENT. All of them said "you're fine, just give it time," etc. I've had two clear chest X-rays, a clear chest CT, and a clear neck x-ray. My bloods have been normal aside from a slightly high CRP a month ago and an elevated lactate, both of which have since been re-tested and gone back to normal. Normal WBC last time it was tested a few weeks ago, as well as RBC and platelets, lymphs, Leuks, everything normal. Yet I keep getting sore throats, coughing up yellow phlegm on and off, etc, and the hoarseness and cough has been consistent for six weeks. Lymph nodes in neck are slightly swollen. I should add that about a month ago I quit smoking pot due to this heath scare (I was smoking every day), and that my diet was high in sugar and salt and junk food for years (I was using food to self-medicate and to escape) until I changed that at the same time and decided to eat healthy and try to take better care of my body. I fear that it's too late for that now though. Also, I do not smoke cigs, very rarely drink, and am a little overweight but not obese.

Anyway, this persistent cough and sore throat, that has lasted six weeks, as well as hoarseness, constant throat clearing, congestion and alternating blocked ears, combined with my other symptoms, has had me going in circles seeking appointment after appointment and opinion after opinion, feeling like I'm going crazy. Last week, I conducted some more research (I do that a lot, I know I shouldn't), I had an a-ha moment. Something that my GP, dentist, and ENT couldn't see and hadn't tested was my thyroid. I became convinced that it was thyroid cancer, based on my symptoms, and proceeded to demand an ultrasound. The doctor reluctantly complied, after trying to brush me off as just anxious. I insisted. The results came back today and lo and behold, I have "multiple nodules" on both sides of my thyroid.

The report is very vague except to say that the nodules are tiny and scattered, hypoechoic and all are less than 7 mm (which means less than 1 cm). I've read conflicting information about this. Some sites say that multiple nodules mean less chance of cancer, whereas others say it means more. Some say that the size is reassuring whereas others say size has nothing to do with it. The lack of detail in the report scares me so much - it tells me almost nothing. One thing it does say is that "none of the nodules have a sonographically suspicious appearance", but to me that is contradictory because they are hypoechoic and solid - how can that not be suspicious? It also does not list the characteristics that imply lack of suspicion - so I have no idea WHY they say they are not suspicious, nor do I know HOW MANY there are, only that there are multiple nodules. Additionally, it states the clinical follow up would be appropriate. Side note: can you tell I'm a journalist? I NEED information. I NEED answers. And the need for research is absolutely INGRAINED in me, which makes me very good at my job, but doesn't do me any favours in the HA department.

The doctor who delivered the results to me said I needed to get a thyroid blood test done, which I have done, and then he said when we have the results he will then refer me to an endocrinologist. I know I'm not supposed to seek reassurance and I am well aware that nobody here can diagnose me, but I have honestly never been so scared in my life. This time it might actually be something bad, and I'm terrified to leave my six year old daughter, who is very attached to me, without a mother. I'm also scared that I will have to halt my CBT and focus all my attention on cancer treatment. The very thought makes me sick.

Please, has anyone ever experienced thyroid nodules - and maybe even my other symptoms - that turned out to be nothing? I feel so helpless and hopeless right now. All I want to do is sleep. The fact that what I've feared almost my whole life (cancer) might be a reality is too much for me to bear right now. I'm worried that my mouth symptoms are also cancer that has somehow spread to the thyroid or vice versa, and that these mouth symptoms (dry mouth, slightly slurred S's in my speech, white tongue, strange taste, lump in cheek and skin tag on upper frenulum) are being ignored, thus making my prognosis worse.

I know that I have no control and all I can do is wait (the TORTURE of waiting - can I get a witness?!), but this is the only place I could think of to turn in the meantime. I pray that someone gets all the way through this insane, rambling, all-over-the-place post and can reach out to me.

Thank you for listening. I'm so happy to finally be an actual part of the forum. I've wanted to post for a long time, but didn't have the guts.

[jojo2316]

Hi Stephanie
Welcome. What a time of it you have had - I’m so sorry. I have read your post carefully and I wish I had time to reply fully now, but it’s morning and my children are starting to wake up. I also have a long history with health anxiety and chasing test after test. I don’t have any experience with thyroid nodules- sorry - but I do have some lung nodules found because I paid for an “unnecessary” ct scan. They caused me to utterly freak out. And I have also had breast lumps found - and biopsied - because of “unnecessary” breast MRI’s.
My point is one you will already know: if you search hard enough you will find things, most of which never needed to be found. Wish I could say more.... shouting children! But hang in there

[Serotoninsteph]

Thank you so much for your reply! You're right about the "if you search hard enough for something, you'll find it" point. Man, ain't that the truth! Thank you for taking the time to reply. I've had unnecessary breast biopsies and ct scans, too! I'm fortunate that there is no cost for these tests in Canada- I can't imagine going through the stress of having this anxiety and feeling you need these tests and adding financial strain from the cost!

[Andrash]

Thank you so much for your reply! You're right about the "if you search hard enough for something, you'll find it" point. Man, ain't that the truth! Thank you for taking the time to reply. I've had unnecessary breast biopsies and ct scans, too! I'm fortunate that there is no cost for these tests in Canada- I can't imagine going through the stress of having this anxiety and feeling you need these tests and adding financial strain from the cost!

I read your previous post, but it is easier to quote this one as it is shorter.

Anyway, one thing is clear - your ultrasound did find these nodules, but "none of these have suspicious appearance" - meaning the finding points away from cancer and other scary stuff. Thyroid gland issues are something that should not be neglected, but also something that is extremely common and these days very easily treated.

I also understand the need to research and investigate, but, as a journalist, you surely know what an unreliable source is - and google is the most unreliable source you will find. Instead of google, try using real sources of information - your doctors. I suggest making a list of questions about your thyroid issue and asking them on your next appointment. As for the google - just quit it, like you did with pot smoking. If the urge to research is too strong, you can always block medical sites and that I also strongly recommend.

In the meantime, I suggest treating health anxiety. To treat it is a win - win situation for you. If your issues are benign (and of that I am 100% certain), you will stop worrying over nothing. If something serious occurs (now or in the future) - it will be a lot easier to battle it without anxiety than with it.

[pulisa]

I had 3 thyroid nodules detected on an MRI for something completely different in April. The nodules were much larger than yours-the largest being 3cm. I saw an endocrinologist straightaway and he told me that having multiple nodules was a good sign-the single nodule being more suspicious. I had 2 lots of ultrasound done and the radiologist said I needed 3 fine needle aspirations done of them because they didn't look like harmless cysts.. The results came back and all were benign nodules. it was thought that the largest nodule was a parathyroid adenoma but it turned out to be a thyroid nodule. I go back in October to be re-scanned.

---------- Post added at 08:34 ---------- Previous post was at 08:28 ----------

My thyroid blood test was normal. Your endocrinologist will look at the ultrasound and decide whether you need biopsies (fine needle aspirations) but my guess is he will say they are benign from the hypoechoic definition and the fact that they are so small.

Nodules can cause hyperthyroidism so it would be best to get that blood test.

If I can help further just let me know. You just need an endocrinologist to take a look at the ultrasound and advise you further.

[Fishmanpa]

Going through something similar with my wife at the moment. She suffered a devastating illness nearly two years ago but all things considered, is doing Ok. We went for our physicals a few months ago and her blood work showed TSH levels out of whack, enough so that the doctor had her re-take the tests. They were still low so she was referred to an endocrinologist as she suspected hyperthyroidism. We went Tuesday. The doctor was very thorough and detailed. When she explained the numbers I was surprised at them. They weren't as low as the GP made them sound and based on them, my wife would have had symptoms yet she's the total opposite of "hyper" since her illness

Anyway... The bottom line is it could be a mild case of Graves disease. So, a few more tests and the possibility of low dose meds to prevent issues in the future. Nothing life threatening and very easily treated

I know you're going to say "but the nodules"..., Yeah so? Millions of people have them and you're doing the HA thing by latching onto the worst case scenario. You insisted on the testing and they found some benign nodules.. The report said "none of the nodules have a sonographically suspicious appearance". That's where it should end but HA + Dr. Google is a bad combination.

IMO, worst case, based on what you've posted is a minor thyroid issue which meds will correct

Positive thoughts

[Serotoninsteph]

[QUOTE=Andrash;1801757]I read your previous post, but it is easier to quote this one as it is shorter.

Hi Andrash,

Thanks so much for your reply. It made me feel better. The thing is that I know that just because it says they don't appear suspicious doesn't mean they're not, and my understanding is that ultrasounds aren't the most reliable. It's scary because I have the other symptoms - long standing cough and sore throat, pain up the sides of throat, throat clearing, that are all TC symptoms so when combined with all these nodules it is frightening. I don't understand why the radiologist didn't offer more information. Seems lazy to just say multiple nodules without describing them more and not giving a number- like this could be five, ten, twenty for all I know! I wish they would explain what about them isn't suspicious. I've read that hypoechoic solid nodules are pretty indicative of cancer. I know I need to stop doing this. As for sources, actually these days Google can lead to reliable sources indeed, but there are lots of unreliable ones as well. I use official cancer sites and nhis which I think are a little more on the reliable side, but regardless, I need to somehow train myself to get off Google. Thank you very much for your insight and support. I really appreciate it.

---------- Post added at 07:11 ---------- Previous post was at 07:04 ----------

I

[/COLOR]My thyroid blood test was normal. Your endocrinologist will look at the ultrasound and decide whether you need biopsies (fine needle aspirations) but my guess is he will say they are benign from the hypoechoic definition and the fact that they are so small.

Nodules can cause hyperthyroidism so it would be best to get that blood test.

If I can help further just let me know. You just need an endocrinologist to take a look at the ultrasound and advise you further.

Thank you so much! I got the blood test done right away so am waiting for the results. I don't even know what the endocrinologist would be able to gather from this somewhat useless and limited US report but I guess he will be granted access to the images and further information? My doc sent me to get the blood test but he ticked off "suspected hypothyroidism"- is that the same test? Will a test for hypothyroidism also point to hyperthyroidism if it's there, or would I need a different test? One more thing- part of what you said made you think the doc would think they are benign is that they are hypoechoic. Doesn't hypoechoic mean it isn't good? I thought that had a more negative connotation associated with it. Am I wrong? Thank you again for your support. I am so thankful that this forum exists!

---------- Post added at 07:23 ---------- Previous post was at 07:11 ----------

[QUOTE=Fishmanpa;:

I know you're going to say [I]"but the nodules"...[/I], Yeah so? Millions of people have them and you're doing the HA thing by latching onto the worst case scenario. You insisted on the testing and they found some benign nodules.. The report said "none of the nodules have a sonographically suspicious appearance". That's where it should end but HA + Dr. Google is a bad combination.

IMO, worst case, based on what you've posted is a minor thyroid issue which meds will correct

Fishmanpa,

Ahhhhhh I was hoping you would reply. This might sound ridiculous, but I'm a little star struck. You're a celeb on here! You're right, Dr. Google and HA is s totally toxic cocktail. I need to stop that, I know.

Though the nodules haven't been defined as benign, and what scares me is their presence in combination with all the other TC symtpoms such as persistent sore throat and cough, hoarseness, etc. that I can't seem to shake. For six weeks I've woken up and said "this is the day I will feel normal again, it will go away today" and every night I tell myself "tomorrow will be the day I will wake up and this will finally be gone" but it never seems to end. I'm beginning to wonder if I will ever feel normal physically again. It's scary. And then with the discovery of these nodules, which is something concrete in a test result, yeah, my brain is spiraling.

I downloaded the CBT self help course you always link to, and I'm hopeful that it will help. I started module one last night. I can't thank you enough for your reply, I know you've been through a lot and I'm grateful that you share your experiences and offer support to those in need on this forum. Thank you a million times.

[pulisa]

Steph, multiple nodules means more than 1. I have a multinodular goitre (3 nodules). The sonographer gave me no reassurance whatsoever when scanning me-he told me I needed an urgent referral to either ENT or an endocrinologist. Sonographers are pretty spot on when detecting anything suspicious-the report sounds pretty reassuring to me. Mine read nothing like that.
The size of your nodules is significant. It's doubtful whether they are large enough to be biopsied anyway. There would almost certainly be reference on the ultrasound to lymph node involvement in the neck area with a malignancy.
The only way to test for thyroid cancer would be fine needle aspiration. Based on the ultrasound report an endocrinologist would make the decision whether to biopsy or to leave well alone.
A full thyroid blood test profile would indicate hypo or hyperthyroidism.
Please don't Google

[Serotoninsteph]

Steph, multiple nodules means more than 1. I have a multinodular goitre (3 nodules). The sonographer gave me no reassurance whatsoever when scanning me-he told me I needed an urgent referral to either ENT or an endocrinologist. Sonographers are pretty spot on when detecting anything suspicious-the report sounds pretty reassuring to me. Mine read nothing like that.
The size of your nodules is significant. It's doubtful whether they are large enough to be biopsied anyway. There would almost certainly be reference on the ultrasound to lymph node involvement in the neck area with a malignancy.
The only way to test for thyroid cancer would be fine needle aspiration. Based on the ultrasound report an endocrinologist would make the decision whether to biopsy or to leave well alone.
A full thyroid blood test profile would indicate hypo or hyperthyroidism.
Please don't Google

Thank you SO much!!!!!

[Leslie735]

I have nodules, just discovered back in January on ultrasound. My ENT isn't concerned at all. I had a follow up ultrasound Monday and one shrunk and the other is exactly the same. Mine are also 7 mm