Thyroid nodule Thy3a U3 not taken seriously

Hi Emmmz,

I'm so sorry you've had to go through all this, only to be told watch and wait! And for years too! That's mentally very hard to accept. I too wasn't taken seriously by my GP when I questioned a lump when swallowing feeling. Took 8 years of repeated trips to GP with health declining (being told it was menopause!!) before a lump appeared in my neck and they eventually took action. (My TSH was “normal” as that isn't affected by my variant). Medullary thyroid cancer that had by then spread over the years to lymphs!

You mentioned you went privately before, (even though you had no action from them), with this new information could you go privately again? I know some members on here have mentioned having a diagnostic hemi-thyroidectomy, so hopefully they'll be along soon to advise. Whether they've had to push for that or were given it as standard treatment, I don't know. Perhaps if you put that into the search on this site it may come up with their names? I just felt for you when I read your post and wanted to reply. X

thank you so much for your reply and I am so sorry to hear about your diagnosis, how are you doing now? I have Experienced such awful medical gaslighting for years that has resulted in me nearly dying, I am now steroid dependent for life because doctors didn't believe me and my adrenal glands failed, so I guess I am always on edge and not very trusting. Did they ever biopsy yours in the 8 years? and can I ask how big it was? I also struggle with swallowing occasionally but mainly the low voice and a strange ache on that side which has got worse after the biopsy. Is there a way they can tell if it is Medullary or papillary etc? Did you have a grading eg: Thy1,2,3,4,5? I can't explain it but I just have a bad gut feeling about this... but also very aware that I don't want to rush into surgery as that has it's own complications! Thank you so much for replying x 

I'm so sorry a lack of being believed has led you to such health complications. It's just dreadful. I was told my lump feeling when swallowing was stress!!! So to answer your questions...

It was only after the lump appearing on my neck after the 8 years (reacting lymph nodes) that I was referred by GP to ENT. (Even then GP said it was probably a cyst!!!) So only then did I have scan, FNA, then biopsy.

They told me the variant after the biopsy.

After surgery, my tumour was 2.4cm. But do bear in mind, mine had been left for what could even have been much longer than the 8 years and that's why I ended up like this.

As mine wasn't intercepted beforehand nothing was graded until after surgery but I'm sure there are members which have had Thy gradings, so hopefully they'll reply soon. Maybe it'd be worth searching for that too on the forum?

Several other important things to note...

It's good you are being very proactive and have caught things early as you say the nodules are small, 4mm and 8mm.

You are now “in the system” beyond your GP and can challenge your treatment path if you want.

In general if yours does turn out to be papillary, the two most common types (papillary and follicular) if caught early are highly treatable.

You're right, best not to rush into surgery. Any surgery carries complications, especially if you have health implications to start with. You need to gather as much information from reliable resources like Macmillan, other thyroid charities or scientific papers (not google) so you can make as informed decisions as possible.

The medullary variant I have is incredibly rare. Less than 3% of all thyroid cancers worldwide! And it was picked up after the biopsy.

Any more questions, just ask and I'll try and help, although I'm not medically trained, just like so many of us trying to get through treatment and make sense of what's happened and hopefully that experience can help others going through similar. x

Hey Emzzz,

Sorry for your difficulties it's so frustrating ain't it!

I had two fna's after ultrasound found a 1.8mm nodule, first was a Thy3a, referred to MDT, who wanted me to see surgeon and while waiting for that another fna which showed a thy3f, both suspicious but couldn't say if it was cancerous. Ended up having a full thyroidectomy as I had graves disease and that may have been my future anyway, they biopsied the thyroid and was Follicular Variant of Papillary cancer! That's why they couldn't diagnose it from the FNA's as follicular have similar cells so it's harder to diagnose at times.

I can imagine how frustrated you are being passed information that scares you to them telling you to sit about and do nothing! 

I’m very sorry to hear everything, I have a few views and suggestions but  can I ask if you have ever had carpal tunnel? If it’s personal and you prefer not to say no worries 

Best Jan 

Hi Jan,

No never!

Phew that’s good.  I only asked because I had a pituitary tumour removed plus papillary thyroid cancer with follicular variant. Other issues too but the pituitary issue caused Acromegaly which isn’t the best thing to find out.  Your issues sound so similar and as Acromegaly is rare I wanted to see if that had been checked out with bloods.   2 carpal ttunneks are a red flag to check so wanted to just mention it.  Have you had any genetics for the endocrine?  It’s a funny old branch if medicine that I never knew about until my glands started to go wrong.  I wish you all the very best with your surgery and treatment going forward.  I think my hair is falling g out in sympathy with my body so that’s been my most trivial issue that has really bothered me.  I keep telling myself that’s the least of my issues and nothing beats good health!  It’s just a reminder of what I have every time I look in the mirror.  
Keep questioning everything is something I have learned along the road and I now never accept anything without researching etc it’s exhausting ans not right for everyone but it works for me 

very best to you and yours 

That is so interesting! they believe mine is cyclical cushings from a pituitary micro-adenoma. My hair has been falling out all year, it's really getting me down, I'm using all the shampoo's and treatments but its falling out in clumps! How did you find out about your thyroid cancer? I am desperate to do genetic testing but because, thank god my parents and brother are fine they won't to it.

Hi Emmz

my journey has been very strange it started with a kidney stone (I though that was bad at the time but I’d be grateful fir just that now).  From this they checked my calcium and this diagnosed a parathyroid adenoma and that needed removing.  Whilst talking to the surgeon I mentioned my huge hands (I had to have rings cut off) larger feet, changed facial features and the fact that my mums twin had something called Acromegaly .  We were just told she had an illness and had no idea it could be genetic! They then checked my growth hormones and I won the jackpot with a confirmed diagnosis of Acromegaly!  It’s one disease caused by a pituitary tumour (Cushing being g another).  I then had transphenoidal neurosurgery to remove it. Surgeon then ordered an scan of my parathyroid glands and they saw nodules on my thyroid!  No symptoms whatsoever though so I had no idea! They took half my thyroid out and as it was papillary with follicular variant they removed the test! I still can’t believe it’s all . One minute I’m going mad exercising on my peloton thinking I’m Laura Trott and the next I’m having neuro and thyroid surgery!  
As regards genetics I was tested for a gene called MEN1 as the multiple endocrine issues I have indicated this was a possibility.  My screen came back negative which was a relief but that leaves me without an answer.  It’s mad that my mum didn’t have Acromegaly but she would be a carrier of the faulty gene yet to be discovered . As an identical twin she has the same dna as her twin who did have Acromegaly!

if I were you and knowing what I know now  I would ask if there is any way they can screen you  for MEN1 as it does  cause multiple endocrine issues.  It could explain your issues if it’s positive.  We can’t outwit our genes sadly but knowing if you do or don’t have it would be very helpful for your wider family to be aware of.  It is extremely rare I understand .

• im sorry to go on at length but I totally understand how you must be feeling and it’s a frightening experience to be going through.  I’m sorry to hear about your hair too as it’s so important to how we feel about ourselves.  I have just found an amazing product by Kerastase recommended by a new hairdresser.  It’s called anti hair fall fortifying serum.  You use it twice a day all around hairline and on scalp.  It’s the only thing that’s helped and even after a week my hair is so much easier to manage and is starting to look so much better.  It’s definitely doing something good so it might be worth a shot. I’m def lovinh  and nothing else has had this result and I’ve tried lots!  
  
  I hope you can get some answers and that things improve for you over time.  I’m trying to live one day at a time. My neighbor has cancer and she’s an inspiration for me. She says enjoy each day as once it’s gone it’s gone. I try to get out walking I’m a looney now as I love to tell everyone about the beautiful birds and changing seasons that I see. I’m trying to be thankful every time I go to sleep and then wake up to a new day 
• all the very very best with everything x

I'm so sorry you had to go through all of this! I think the not being taken seriously and not being believed is the worst part. I have my appointment with the ENT surgeon today so I have lots of questions written down and hoping I can advocate for myself well. x