Got my referral to Leeds

My Gp said yes to referral to Leeds, yeah!!

Any ideas how long it should take until I'm seen? I have a Dx of UDCTD at the mo but I think it's leading towards Lupus, I am already on Azathioprine.

But worried now that I'll go and they just dismiss me and say I'm a hypocondriac!

Fed up of fatigue, migraines, joint stiffness and not been able to see properly :(

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  • Hey gymbabe, i know that feeling! Hypo... Hypo con driac? Sick feeling. We all seem to have to work/stress a lot and seemingly do their jobs for them practicaly with every clinic. No wonder we are so fatigued😡. I take it that your referral is to a specialist? Well done you.👍 for persistance and getting the promise of reward. Don't forget to start a list of all your ailments, miss nothing out. Start it now. I have no idea how long you may have to wait, our various experiences on here tends to advocate patient patience because we don't know often what the waiting times are. Hang in there, you have a great opportunity to grill a consultant, (I'd baste him often in listening skills) so gather your thoughts and be assertive, not rude hmm, and bring any queries here for any injection of confidence and support you need to face the man who can give you answers.

    Well done babe So far. DO let us know how you get on, regardless of when it is cos your experience will be useful to others.

    Say every night I AM NOT A HYPOCONDRIAC. I have friends who me I am not.

    Best wishes babe, you know where we are

    OXOX

  • Thank you for your kind words.

    My referral is to a Rheumatolgist, have been going to my local hospital but they do not seem to be able to keep any staff, I was due to see a consultant beg March but they can't give me an appt!!?

    I forgot to mention the dry eyes, hair loss, mouth ulcers, brain fog I could go on and on.

    I have looked online and it says within 18 weeks, so fingers crossed it's not that long. The Gp says my Azathropine needs to be monitored, I have 3 monthly blood tests and guess I should continue with them til have my appt.

  • It is great that your GP has agreed to you getting a referral to a rheumy in Leeds - I've heard from friends that Leeds is very good for rheumatology. I understand your paranoia about being thought a hypochondriac but as Footygirl says this idea is to be put on the shelf alongside my own anxieties of the same type with similar symptoms.

    My 18 year old son has just read a questionnaire I had to fill in for my contributory ESA. I thought he was going to read through my answers and tell me I'm exaggerating but instead he says I'm underplaying everything as usual. Don't be like me and understate the effect your condition has on you. Write a bullet point sheet of symptoms which affect you most and give this new rheumy a copy.

    I hope you don't mind me using this as an opportunity to ask whether Azathioprine is working for you or not? I have been taking it for two weeks only - still on weekly blood tests and so far so good I think. But I am terribly tired all the time and don't know whether this is because of the drug or the cumulative effects of being off drug for ages and flaring. I have diagnosis of RA, Sjogrens, Raynauds with Hypothyroidism.

    Does your GP monitor your bloods on the Aza? If not could they do so while you are between rheumies perhaps? I know my GP surgery monitors me as part of a share care protocol with the hospital rheumatology department. It is important to keep up with the monitoring so that problems don't suddenly develop. Also they should take a full set of bloods before your appointment so that the rheumy has all this at his or her disposal to work with. Good idea to get it printed off in case it doesn't come through on the computer. I also took photos of swollen joints and skin rashes with me.

    Hope it's soon - good luck!

  • PS Babe and twitchy, when my AI Hepatitus was diagnosed by gastro consultant, he infuriated me that AFTER the consult I had to get a blood test. I insisted on pre apt blood test so all info there. Got Aza. Prescribed

    When I was diagnosed with Lupus Rheummy horrified that I only had one blood test per yeah. She immediately set up monthly blood test for the Aza. and prescribed Hydroxychloroquine 200 then down to 100mg

    That was 2001/2 and still on Aza Increased to 75mg year ago but one increase in all that time, Ill settle for that!

    So repeat wish you take long list as we advise. Hold nothing back.

    OXOX both!

  • I was on Hydroxychloroquine for about 6 mths and just as I was beginning to feel abit better I was told I couldn't have it anymore as it was interacting with othe drugs I take for nerve pain, carbamazepine and Lyrica. I was then put on the Azathioprine, can't say I feel much better for it, especially in winter, I have Raynards too. Been on it about 18 mths I think. I go to my Gp to have my blood taken, but results go to Rheumatology dept of local hospital. I have been told it's working as my blood levels are nearly back to normal. I take 150mg, 50mg 3x a day.

  • I attend the rheumatology clinic at Leeds and would just like to say they are the best. Nothing is too much and they take everything you say seriously. I was admitted to hospital by them recently after being dismissed by my GP several times and within one day they found I have cancer and got me straight on a treatment plan and referred to the correct area. In the meantime they are keeping a close eye on my lupus so I cannot praise them enough

  • Sally21 great to hear that you would recomend Leeds, sorry about your more recent health problems, but it sounds like they are on the ball.

    Keep well

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