I was diagnoised with thyroid cancer 3 yrs ago and was always told I'm low risk for recurrence and that yearly US of neck weren't needed.
I spent 2 yrs fighting Endo to get at least a neck US to make sure everything is ok because I was worried that my increasing neck pains and constant cough could be the start of more problems. Reluctantly they agreed to neck US it came back as clear thyroid bed no sign of cancer but my lymph nodes were calcified, had neck biopsy and it was good had another US 3 months after the 1st and thyroid bed good lymph nodes look different from the 1st US but the endo said lets do the whole body scan with Radioactive Iodine to make sure and that he thinks it looks like your lymph are fighting and infection (I have PSA).
I did low iodine diet for 2 weeks and did the 2 Thyrogren injections and swallowed the radioactive iodine pill and had whole body scan ..... Well I have cancer again in my thyroid bed up my trachea and it's spread to my lymph nodes on both sides of neck (original surgery I had no lymph node involvement or spread outside of thyroid).
I don't know what's next for me but I hope everyone never takes NO for answer when your not feeling right, if I listened to the endos and never pushed for US who know how far this cancer could go!
I can't wait to ask them do you still think I'm "low risk"?
Update: Endo that ordered my radiation test with Whole Body Scan ....No longer works in the Endocrinology Dept he now is in pediatrics (WTH) I asked this guy once we do all this testing your still going to be here (military Hospital) and he said yes..can you believe that I have recurrence and no Endo I feel like they are trying to kill me and forcing me to file a complaint with Hospital Commander.
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Batty1
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Yes sometimes we have to push when we feel something isn’t right. I am so sorry this happened and now look. Good for you advocating for yourself. Wishing you all the best.
I am so sorry to hear that your cancer has returned. I imagine it must be very bewildering and frightening. Sending you love to help gain the courage and strength to fight it.
Also what caused it? One thing to look at is wireless radiation from wifi, cordless landlines, cell phone antennas. If you are exposed especially at night then that causes cancer. REmove all wireless adevices and cable up
I couldn't agree more. At night the body "recharges" itself while we sleep. The last thing we want is to be sleeping in an ocean of electromagnetic (e/m) radiation. An environment of e/m causes a reduction of our immune system, when we are sleeping it is our immune system that plays a large part in our restorative process.
There is a really good TED lecture on this subject and I am sorry I do not have the link, i will post it if I ever find it. The researcher took people who were ill and shielded them from ambient e/m, they found that their immune systems kicked in to cure the patients to a point where some patients couldn't take it, their immune systems were working so well that they simply could stand. it, it was too painful.
It always shocks me to hear that ultrasound is not the standard of care for follow up and monitoring in the U.K., like it is in the US. My low risk recurrence was found at 6 months because I found a new US endo who saw too many red flags and ran all the tests. Wishing you a successful treatment and an excellent outcome. Will surgery be your next step?
The problem with them not wanting to give me US was because my Tg levels was undetectable and "yes" this is good indicator if no recurrence if the Tg levels isn't elevated but it seems some people have a rare issue that the Tg levels will always be undetectable even if they have thyroid cancer so they always thought I was "Low" risk because my Tg levels. Still should do US.
I’m so sorry to read this. Really good for you for keeping up the pressure on your Endocrinologist. They should hang their head in shame and definitely should be reported to PALS. I’d go official if it was me.
My sister had thyroid cancer. She was under a ENT Dr at the hospital not an Endocrinologist. The Endo told her she had no thyroid issues. She changed hospital. They did a fine needle aspiration and found cancer! These NHS Endo’s have no clue. She too hasn’t had any follow up US since her thyroid cancer diagnosis 6 years ago. She also had coughing and chest problems since it was removed. All the NHS Endo does is keep her TSH suppressed at 0.01. She’s not very well, all sorts of things. I think I’ll tell her your story it might help her to help herself and get some tests done too.
I have Hashimotos.
Thank you for your post as it alerts others to check and put pressure on
I do hope you get the treatment really quickly, only thankfully from your own tenacity.
Thinking of you. Be positive and keep focused on getting better.
Batty 1 I am so sad to hear this news. I hope all goes well now. I have said a prayer for your recovery. Its incomprehensible isn’t it? I have felt unwell, lymph glands all up along my jaw and neck, back of neck and lump in throat since summer. GP wouldnt even do a white cell count blood test! I have had done privately and waiting results now. I am so shocked by the plethora of mediocrity that are paid a lot of money in our NHS. I am really drastically changing my views on NHS. Keep in touch with us x
I am sorry that you've had a recurrence and the message is that we know our body better than the professionals and especially if someone has had cancer you are far more aware of changes in your body.
So sorry you are going through this with a seemingly incompetent endo. IMO, always test the thyroglobulin level at least every 6-12 months to make sure it is on a declining trend toward undetectable at < 0.1. When it increases is a concern that thyroid cells are multiplying and giving off the Tg protein.
I would be sure to obtain a thorough neck U/S performed in a radiology dept. with an experienced U/S tech. It should include grey-scale and color Doppler. They can do a lymph node mapping too. The machine is more sophisticated than the one in a doctor/endo office.
Make sure the TSH is kept suppressed so as to not stimulate rogue thyroid cells. One good way to do this is by use of T3 hormone. Mostly, T3 replacement is used by patients whose bodies cannot properly convert T4 into T3. This would be evident in a low FT3 and high FT4. It takes some finesse in obtaining good levels and finding clinicians that are knowledgeable in use of T3 (in forms of synthetic, compounded, desiccated). I would insist on testing all the levels every 6 months and performing full neck U/S every 6 months as well.
I would opt for surgery over a LND. Reasons being that too much RAI can cause harm, the cells in LNs can lose their avidity and become resistant to the RAI.
Also, test the specimen for genetic mutations such as BRAF V600 E. This is a protoncogene mutation that can cause the non-avidity and resistance to the RAI. In more difficult cases of GMs, there are some meds are now available that can help cells regain avidity.
I've always been on T3 meds with very low TSH and every Tg test has been undetectable...I was told some people have a rare issue that the Tg levels never move I didn't know this and apparently neither did these endos...I always knew something was wrong I never felt 100% which gets always blamed on psoriatic arthritis flare.
I am so sorry you have to go though that. I can completely understand as my experience with the doctors have been similar, and they always did more damage than help. Good luck and I wish you quick recovery. Take care
Strength and Sympathy for you Batty1. It's awful when Dr's don't take patients seriously . We end up paying the price . I'm very happy for you for being persistent and standing your ground . After all we are our own *Best Advocates* . Be Strong and Positive . Wishing you Great Success and Great Outcome .
It has not been an issue for me nor anyone I know that uses T4/T3. The FT3 (NOT TSH) can fluctuate through out the day b/c it is the active hormone and is most active for 4-6 hours before it dissipates. That is why people that use T3 split their doses. Some people can take the whole dose in the AM but most of us fair better by splitting it.
I take my AM 1/2 DTE when I awaken between 6-6:30 AM. I do not eat that early so it’s not a problem. I take my PM 1/2 between 3-3:30 PM. I have already eating lunch and it is still approx. 3 hours until my next meal. On DTE, i can wait 30 minutes after eating until I consume my dose. It dissolves very quickly. Just keep away from calcium tablets for 4 hours.
I really felt for you when I read your post and then on Radio 4 I heard something that made me think of you. I think your doctors may already know of this but perhaps not. Someone on the radio was talking about a new treatment for cancer of the neck - I know that's rather a 'wide' description, but I did wonder if it might be what you need. Unfortunately I was working at the time and didn't divert my attention enough to notice which programme it was in or the time, but, I think you might be able to trace it. I am pretty sure it was tablets that were perhaps immunosuppressant - but I could be mixing that up with another programme.
Anyway, I wish you the best of luck and hope you can find things you enjoy doing as your life unfolds.
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