hello, new here but user of HU due to other diagnosed AI condition in rheumatology field.
Tests just starting to eliminate conditions, gastroscopy found nothing, abdominal scan pending, omeprazole prescribed.
Existing condition Adult onset Stills Disease (1979) med free except pain relief, constant symptoms joint pain, sore throat, skin growths, dry eyes, itchy skin, tendinitis, fatigue and brain fog, possible organ involvement as chronic.
Now 61 using Everol conti HRT for several years. February this year sudden weight loss, malaise, extreme fatigue , change in bowel habits, shedding hair, dreadful indigestion, nausea, vaginal spotting, dizziness , increased joint pain, rib/flank/ back pain, abdominal stabs , tingling arms, heartburn, bloating and gaseous with constant headaches, sore eyes, doom and anxiety level up with nightmares and disturbed sleep (and flare of usual Stills symptoms.)
Blood tests caused LOCUM GP ON PHONE to say liver or ovarian cancer. Repeat tests showed different result next test result due….. common factor high cholesterol, I’m 5’1” weighing under 9 stone with a healthy diet don’t smoke and exercise when able.
Surgery does nothing online, does not offer access to anything and only offers telephone appointments unless coerced by 111 calls.
That’s all I can tell you for now but reading the posts about the difficulty getting treated once diagnosed fills me with dread.
Thank you for reading.
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Stills
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Have you ever seen any of your thyroid results? You need to ask the receptionist for a copy of historic ones.... ideally now you need to get a full thyroid panel done privately to see where your fT3/4 are, Medichecks have a discount on at the moment
Never been tested for thyroid things, undiagnosed but ill with symptoms, I’m concerned about all the posts about getting tested and treated surely this should be matter of course for an illness. It appears from what I’ve read here that Drs don’t want to test or treat thyroid issues, I don’t understand this, do diabetics get spurned like this? I can’t ask receptionist as all calls go to message and never callback snd no f2f appointments given plus not allowed to visit surgery without an appointment catch 22. I assume this is why all the posts relate to getting tested privately and fighting for a script that suits, I think I’ll just stay ill, i haven’t got the fight in me for this when I already have a chronic AI condition, thanks for your reply and I wish you good days
Best to grab yourself a private test and then present them with results which will force them to re-test if your levels show as being out.
You certainly have to be a bit proactive to get decent treatment for your thyroid... if you follow the advice on here there is generally a way to get what you need... one way or another!
Are you signed up to the NHS app which gives you access to your records?
Not signed up to NHS thing, tbh I’m overwhelmed by this, at least with Stills Disease although rare , steroids and pain relief kept it at bay back in my teens. Thanks for your advice, so just pay for test then send to GP and get script. The GP is a locum so no continuity and each new one criticises the last one, I will wait until the abdominal scan in case they find something else first.
Thank you, will do IF I ever get tested. Why is it hard to get tested, prescribed properly and treated thereafter for thyroid conditions ? Do Diabetics or MS sufferers for example get treated this way? Is a thyroid condition not something GPs deal with?
I see…. Thanks for all the info, I’m appalled and shocked that the best chance of quality treatment and care is left to patients and can’t decide whether to give up now and tolerate symptoms or get my hypo(er)thetical boxinggloves out
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
PPI was prescribed early Feb when symptoms started and blood showed high GGT (cancer flag GP said). 40mgs, I weaned off by mid June and symptoms slowly returned. Two weeks ago I had an episode of shaky dizziness nausea unable to stand type of thing so saw nurse who ordered abdomen scan, bloods ( no results yet) and back on omeprazole. When I was diagnosed with Adult onset Stills disease aged 17 in 1979 I took steroids for about 5 years without no stomach protection or calcium supplements prescribed, I guess they didn’t know about osteoporosis back then. My known condition is auto inflammatory so my odds are on Graves, I have other AI conditions, Lichen Sclerosis, Interstitial Cystitis and Dupuytrens Contracture but this is all new to me and reading about the side effects of the medication is daunting .
Interesting and good to know thank you. My Dad died recently, he was 86 and had non Hodgkinsons Lymphoma which I believe I’m at risk of due to Stills, our immune systems are far more important than I ever knew.
Thanks for your response, it’s a big grim on health care here, I’ve spoken to people attending other surgeries and it’s a similar story locally . It sounds from the general feeling on HU that a private test and endocrinologist is the way forward with the hope of continued sympathetic prescribing from GP. I don’t understand though why there is resistance to NHS treatment, would they send me home without a leg cast if i broke my leg…. Am I about to become even more dissatisfied NHS, I will ask for refund of 40 years national insurance payments! I guess everyone here started off like this.
If you respond well to Levothyroxine then it isn't so bad, remember most of the people here tend to not get along with Levo or need Liothyronine combination or on it's own which is a little trickier to get.... don't be disheartened make the first step we are all right behind you 🤗
so sorry stills , I too would get medichecks thyroid test, doc told me to take folic acid I did private test tsh t3 and t4 and their doc advised I speak to doc as tsh high yet doc told me all good.Mind you he also tells me ive got too many problems and he wouldn't know who to send me too and has done nothing for me. i know how you feel with the giving up and frustrations my journey is 5 years long and some of my story would make your eyes water, I lose the will to fight regularly and there has been no other word but neglect when ive been very ill and no help. you're a tough cookie and don't give up on you, we shouldn't have to fight for help when our health is bad and you have a chronic illness which makes it harder still but I gave up and I shouldn't have given up on me, I feel your anger I feel it too , and still do,and it is all what you say it is, I cant afford to keep doing tests privately and need another, its a crap situation but somehow we've got to keep at it.get your boxing gloves out when you can , thinking of you 🙏
Thanks Stiff19, really good to hear from you. I agree about GPs being flummoxed by our conditions but what I’ve read here about thyroid tests and medicine is daunting, looks like we’re left to sort it out and find it ourselves. HU and all the contributors are a lifeline.
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