Bit of history... four years ago I had a very bad bout of viral meningitis which resulted in my being unconscious for several days and in hospital for weeks; the virus causing it was never identified. Following the illness I didn't recover my strength and resulting investigations determined that I was hypo so I now take 100mcg Levothyroxine per day.
Fast forward to September this year when I get a really stiff neck and badly swollen parotid glands and the GP thinks I have mumps. Two weeks later I get a banging headache and exhaustion so they send me back to hospital thinking I have viral meningitis again - as it turned out I had neither but, hey, at least I talked them out of another lumbar puncture! So, two months later my left parotid and right submandibular glands are still swollen and sore so off I'm packed for tests. One of these was an ultra-sound during which the doctor said all four glands are enormous and that my thyroid is tiny; I have no visible tumour, cyst or stone and his view is that I have an autoimmune disease caused by being hypo - I have another appointment on Friday to discuss next steps and investigation.... and everything is still swollen and painful; I have pretty much lost my jawline under my left ear.
The reason I'm here is that I'm wondering if anyone has any experience of this sort of thing and also if anyone has any advice they could please offer around questions I should be asking? Last time I saw an endocrinologist she was so appallingly flippant that my lovely GP blew her lid and sent a letter of complaint so I'm a bit wary of being fobbed off again, forewarned is forearmed and all that!
Any and all advice / guidance / tips would be appreciated!
Tara
Written by
TabithaT
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Oh dear, yet another horror story re flippant Endocrinologist. Why are so many like it!
I have an atrophied (they say congenital, born with) thyroid gland, literally half. I suffer with alot of problems, enough to of had a huge effect on me daily. Back to the point , I have been suffering swollen saliva glands, with ulcers on/off too. Swelling daily, up & down under chin, saliva glands red & angry.
Also get like a pressure & horrible discomfort & dashing around throat/necl, bad tinnitus, like pressure around from under chine.
My hormone bloods show as ok, some abnormality in red & white blood cells & vita deficiency.
Currently under ENT &Maxial Facial, though they aren't actually doing anything, just keep following up.
The appointment next week is with ENT, who have been brilliant - just dreading if I have to see that endo again, she'll probably send me home with an aspirin! Funny you say about tinnitus, I've had that since the first bout of viral meningitis so maybe it's all related..?
Thanks for the kind wishes, same for you; I'll update when I get something - you never know, it might help your diagnosis!
No rashing generally but the other week both elbows (of all places) had the most itchy rash which disappeared when I took an anti-histamine. Tests for meningits were awful but I guess they had me captive in hospital and could run the whole gamut; I had hourly bloods to check counts for a week and a lumbar puncture to confirm it was around the spinal cord / brain - kind of funny that the warning they gave me for that was that it would cause a headache when I already thought my brain was trying to escape out of my ears! This was followed up by daily then weekly then monthly bloods for about nine / ten months until my immune system picked up - which has clearly taken a bit of a dive again!
Fun fun fun... hypo is quite enough thank you very much without all this fresh pallava now!
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