I am looking for help from anyone in the community who may have had the misfortunate of being down the same path that I am finding myself regarding physical thyroid changes (monitored privately over a few months) suddenly considered as a mental health issue?
I had an NHS thyroid FNA this week and before the results have been returned (at least to me), with my struggles with the physical symptoms getting more onerous, the hospital has suddenly reclassed the urgent referral (with diagnosis within 28 days) to be a follow up in several months time. I wonder how often are people with FNA are expected to wait months for results?
Bafflingly my GP has equally performed a U turn regarding thyroid changes and suddenly discussing mental health as explanation for uncontrolled physical changes thyroid?! I’m surprised since I was told by the private ultrasound sonographer that this level of thyroid change requires an endocrinologist to make a judgement while checking a range of things. So far I have seen a head-neck specialist and a GP? I’m beginning to ponder if the GP did legal requirement of doing an FNA referral simply because the private reports mentioned that the changes are U3-U4 level and should be investigated by an endocrinologist. Now with that done and even though there are no results it’s time to reclass the situation? I am concerned that I am back to trying to find knowledgable private consultants that I can’t afford at all because of NHS pillar-to-post until physical emergency happens (and even then pot luck)?
I’m sorry for the rantish tone but I’m just floored, very hurt and wondering if anyone has suggestions?
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RoseFlowerDew
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I had a few rounds of ultrasound & MRI for what felt like swellings/lumps sore throat and it got to the stage that I (Independent, academic, no nonsense person) eventually took my husband with me to appointments because I got the distinct impression they all thought it was in my head, that I was hypochondriac and being a silly woman and I should stop worrying.
Luckily advice here was … keep going back, say yes to follow ups despite them saying they think nothing is wrong.
I’m still none the wiser on my lumps, they seem to rise and fall, I’m now thinking lymphatic drainage related.
In my area, ENT handle all neck scans and FNA (wasn’t offered) and with hubby sitting observing I saw a fab young specialist who stuck a camera down my throat and diagnosed silent reflux and swollen glands, on the follow up listened to me about T3 and gastric valves and stomach acid and I’d been reading and listening to podcasts told me I was 100% right and it was a hot topic in ENT conferences.
Keep the faith, keep seeing different specialists, take a chaperone if needed just to keep them from making you feel gaslit.
I also requested all scan reports from the hospital and then looked up all the big words to see for myself… you’ve got this! Use all your powers, if the wait is unacceptable let them know. Contact your MP for support . 🌱
It was a biopsy for my rapidly shrinking thyroid and increasing number of nodules, the majority with suspicious features even though as single nodules not quite yet over the 10mm. Sadly the education is so poor they haven’t considered that there’s a possibility of problems with parathyroid or thyroid c-cells which don’t have to be over 10mm to cause problems, or if a pituitary issue or thyroiditis is present (let alone any other causes). But your comment what I thought….thyroid issues aren’t understood. Even with changes documented in serial sonogram reports. However the hospital, very very sadly, has an increasing number of successful medical negligence claims made against it (another 2 this month from unnecessary loss of life) so I am thankful to be aware of that and my multiple sonograms before taking any opinions completely at face value.
What is sad is that I will have to somehow gather funds for a private second opinion….and I’m not sure where to go. A really difficult week as I was already shaken just by having the FNA let alone to have the doctors u turn before results are reported and so I am deeply physically shocked by the cruelty of the sudden reversal of the decision. However I don’t know why I am surprised after my long problems with pernicious anemia and NHS.
I really don't think you should be left without the results of the FNA for more than a few hours longer than necessary. Sort-of, GP surgery gets them and then phone you the next morning.
You can contact the hospital and ask for results to be sent to you - and put in a Subject Access Request, if necessary. (And no, you definitely should not have to do that.)
But first contact GP surgery and ask them if they have the results, and then for them to be made available to you - whether by appointment, letter or whatever other route.
Someone near recently had a biopsy and the GP who performed it said that he would phone the moment he got the results from the lab. The delay being due to lab workload alone.
"possibility of problems with parathyroid or thyroid c-cells"
As you mention C-cells, have you had a calcitonin level checked? Medullary thyroid cancer would exhibit calcitonin well above the upper range. If suspected it's important to catch it early as it is fairly aggressive. ncbi.nlm.nih.gov/pmc/articl...
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