Thankfully, I’ve had a while feeling ok! But this week feeling very unwell again - thyroid pain & pain swallowing with generalised “ughhhhh”. GP was being extra cautious after last year, so sent me to A&E. they did bloods & thyroid levels were exactly as they were in Sept - so that’s good. But my white blood cell count was high again - specifically lymphocytes & neutrophils. Doctor “thinks” it’s immune response - but I said I had negative antibody results (I think he was assuming I had been diagnosed with Hashimotos & had positive antibodies). Or he wanted to rule out a more “severe” virus, so tested for Covid (awaiting results, but highly unlikely as I had vaccination 3 weeks ago).
So - my GP called to check in & her response to my day in A&E was “he told you a lot, but what did he DO?” She was annoyed they hadn’t done another untrasound, so had referred my (again under 2WW pathway) to thyroid surgery team again. [last year they found nodules which were ?U3, but then radiologist said didn’t need biopsy] - I’m going to try & insist they do this this time.
Has anyone got any experience of thyroid pain like this? White blood cell counts like this? The A&E doctor could feel a “goitre” & it’s painful to touch, but am I just supposed to shrug it off?
I guess that if they re-do the ultrasound, they’ll tell me what’s going on, but won’t it just be “yeah, nodules, inflammation… bye”?
I also feel like my neck is swollen - I’ve been losing weight (planned), but I swear my double chin is BIGGER! And it feels fatter when I bend my head forward (typing on phone, etc). Omg, I sound ridiculous, I know! Lol. I just don’t know how to describe it.
I’m obviously ignoring the tiniest possibility that it is cancer.
Any ideas? I know you are where I get the answers I won’t get anywhere else!
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KayS68
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Your high WBC was probably a response to the COVID vaccination. Did the doctor not realise you had been recently vaccinated? It can take a few weeks for the lymocyctes that are produced to resettle.
With regards to the pain in your neck, thyroid antibodies can fluctuate enormously. Can you have them retested to definitively rule out Hashi? And did you previously have both TPOAb and TGAb tested?
Doctor said nothing about response to vaccine! I did tell him. Lol.
I again - didn’t know that antibodies could fluctuate. I kind of thought if mine tested negative (or not positive) that they wouldn’t change. I really don’t know much!! Lol. I had TSH receptor antibodies & thyroid peroxidase antibodies tested - both negative. So I haven’t had TGAb tested I think.
I will definitely ask my GP if she can get them retested - she’s really helpful, so
I’m sure that will be ok. I think hospital “assumed” I had Hashis all along - I asked did they test CRP and/or ESR but they hadn’t. I also have ulcerative colitis but it’s in remission. It sounded like they assumed I have a cluster of auto-immune things so it must be that.
My thyroid’s still really painful & I feel so shit. Previously thyroid surgery team said the “thyroiditis” could keep flaring, but nobody seems that bothered. Lol.
I was diagnosed with Subacute thyroiditis in early December. I had pain in my neck jaw ear and felt quite poorly. A scan showed multi nodule thyroid which I was supposed to have a biopsy, they decided not to do this when the radiographer looked again, and decided all was ok.I felt a little better fir a while and then it started again on the opposite side of my neck. I had bloods done which showed I was slightly hyperthyroid.
Four weeks later I felt ill again, no neck pain but just generally feeling crap.
I had a private blood test as I had started to feel I was a nuisance to keep requesting bloods. My results were a shock my tsh was 72.4 I’m now on treatment, but hoping my thyroid will return to normal eventually, as it often does with subacute thyroiditis
I have done a lot of research on this but information is scarce and often conflicting.
It’s very confusing as they classified mine as “acute thyroiditis” rather than “subacute” - they seemed to have lumped mine in with Hashimotos, perhaps because I then was diagnosed with under active thyroid & apparently that can be a pattern. But then again, it could be secondary hypothyroidism - but try asking your GP to consider that! Lol. I’m just sick of feeling sick & being sent from one place to another - esp under the cancer pathway. It’s ridiculous that they have to use this when I don’t think anybody thinks it could be cancer! This is the 2nd 2WW cancer pathway referral I’ve had in less than a month! The other was unrelated.
They decided the same thing when the hospital radiographer did their ultrasound, but I’m going to try to push for it, given that this keeps happening. Or push for more information on what it actually is. Mine started end of January last year & apart from being on thyroxine now, I don’t feel like they’ve got to the bottom of it.
I’m sorry you’re going through the same - it’s frustrating feeling unwell over & over but just being left to get on with it.
I was told by radiographer that they can tell by looking at the ultrasound, I’ve been discharged by hospital but worry that I should at least have the nodules reviewed at some point in the future
I was told that they can classify the nodules into whether they are definitely benign, could be suspicious, or look very much like cancer - mine were classified as U2 (benign) and U3 (suspicious) - and I was told they would be biopsies due to this. I’m going to *try* to push for biopsy - that’s what my GP thinks is reasonable to expect. I was discharged a year ago too! I think if it recurs it’s definitely worth asking for more investigation- I don’t suspect mine are cancerous, but 1) I want to know for sure, and 2) I want to know what’s going on & can it be treated!
I too have multi nodule goiter. I can feel the lumps in my throat continuously, and they are visible when I Iook in the mirror. I joke and call them "the dogs bollocks" I continuously have a burning throat and a sensation of food being lodged in my throat, which can make me gag at times. I also unfortunately have a voice like a docker some days! I have had an ultrasound and the consensus was they aren't cancerous, they don't affect you swallowing, they aren't blocking your airway we'll just monitor them. Some days I feel horrendous and have other symptoms linked to my fluctuating thyroid levels. I'm currently waiting for a second opinion off another consultant as I have to position my head and neck when sitting or going to sleep, so my nodules aren't touching my throat or vocal chords to avoid gagging. Keep asking for answers I am, nobody should feel grim or just constantly ignored this day and age.
That’s awful - and you’re 100% right, we shouldn’t have to feel this shit. Hope you get better answers when you get the second opinion - everything crossed!!
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