Thyroid involvement

Thank you. Do you have any symptoms? I have lost so much weight I look like a skeleton! I wondered if they would measure my TSH but that wasn't mentioned. Do they keep an eye on yours or is it all just left to its own devices?

No, mine was discovered by accident while scanning something else.  I let them needle it once but they didn't get a good enough sample.  If you've lost a lot of weight, that's very different from me.  My levels have never been bad.  Just beware of ENTs who like to needle these things without any guiding assistance while one sits in an exam chair after being told not to move.  If I let someone near it again with that needle, I'll be lying down and it will be a radiologist with tons of experience.

But yours needs to be followed & figured out.

Maggie, I'm shocked that they're not measuring your TSH. That's basic if there's any possibility of thyroid disease - and indeed for everyone in routine blood tests.

Have you asked for some kind of referral, to get this looked at properly?

Thank you both for your replies. I only learned of it on Friday and I was in shock as I was scanned because of a hard, enlarged neck lymph node. I was told the nodule could be malignant but they couldn't be sure so wanted to wait six months!!!!! As I have the enlarged lymph node as well I think I am going to ask for a second opinion.

I really think you should Maggie

Hello Lilly. This is an update. I asked for a copy of the ultrasound scan report and found to my horror that the rheumatologist had misinterpreted the findings writing that the node on my thyroid was of benign pathology when in fact it was suspicious!!! The benign part was the lymph node. I wrote to her with a copy to my GP pointing out this error in view of my massive weight loss and other symptoms. I have had apparently medical emergency symptoms which I have dealt with alone but I was given an urgent appointment last night and saw a lovely GP who has arranged an urgent cancer appointment for me regarding the thyroid nodule, took lots of bloods and was incredulous that none of this had been done. So all is now in hand. My appointment is on 13th October so fingers crossed nothing else gets messed up. I know the NHS is under pressure, I was a radiographer, but there is no excuse for not reading a report properly.

Maggie, I'm horrified! On the other hand, I'm sure you know, with your medical background, that you're actually better off having a malignant node in your thyroid than in a lymph gland if you have to have one somewhere. (I've got a bit of a medical background too - former nu rse, though I specialised in neuro and it was way back when.)

Do stay in touch, won't you, and let us all know what happens at your appointment next week.

All the best,

Lily

Thank you Lilly, will do. Apparently I could have carcinoma syndrome to boot, just delightful. Keep smiling, at least I can now that I took the stitches out two weeks after the lip biopsy as they showed no sign of dissolving, naughty me!!!

Yeah - I did that after a dental extraction a few years back, for the same reason! I scrubbed eyebrow tweezers and nail scissors, sterilised them in a gas flame and laid them out on clean kitchen paper. No harm came to me, and the awful pain caused by the stitches cutting into my gum went away immediately. The darned things never seem to dissolve. I pity women who get these stitches in the perineum after episiotomy. They're not exactly easy to get at there, are they?

Carcinoma syndrome? The one where you keep getting basal cell carcinomas? That's bad luck, as I understand it's very rare. Still, at least BCCs are easily dealt with and rarely turn nasty. But you don't really need that on top of everything else!

Unfortunately carcinoma syndrome is little cancers in the endocrine glands which eventually get to and overwhelm the liver and cause my latest symptom which is fainting with loss of bowel control!! Delightful or what. Ii is caused by the tumours pumping out bradykinin which opens up blood vessels and acts as a major muscle relaxant. Not enough blood reaches the brain, hence the fainting, and the relaxed muscles produce the other symptoms. It takes a good long time for it to be diagnosed because the liver gets rid of the bradykinin from the other tumours but becomes overwhelmed once it is involved. Sorry this is so off piste and not sjogrens related at all but it is nice to discuss it with another medical professional so I hope you don't mind. I only learned about it on Tuesday evening so I am a bit blown away but so glad to have some sensible possible answers. I will know more after 13th.

Oh, I see. I always thought what you're describing was called carcinoid syndrome, and I agree it's much more serious.

I'm so sorry to hear that you have it. I hope you can start getting some sensible answers on Friday.

All the best,

Lily