Could it be anything else?: I have suspected I have... - LUPUS UK

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Could it be anything else?

kim66 profile image
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I have suspected I have lupus for quite sometime my symptoms seem to be text book including muscle pain, fatigue, rashes, swellings, headaches, heartburn, hair loss ect ect I also noticed I have livedo reticularis, oral thrush...the list goes on! My blood tests came back as 'no further action required' except for my prolactin level is 3700 I have in the past had a pituitary tumour but last scan was clear. I am waiting for an app with an endocrinologist thankfully but was wondering has anyone else had high prolactin as I have heard there is a link between lupus and high prolactin levels?...sorry for rambling!

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kim66
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Thaddeus profile image
Thaddeus

Could be lots of other things especially when you look at the symptom individually. Doctors work on probability and elimination, until they come up with a solid diagnosis. But they don't have to live with it. I think we tend to look at the pattern. Lupus is a very individual illness, as in we each have our own version of it. This is compounded by having a duff immune system and quite often other problems which may or may not be connected.

kim66 profile image
kim66

Thanks Thaddeus!

After suspecting lupus for about 2 months, and doing endless research into symptoms and the appalling gene pool I have inherited (sorry family!) I think it kicked off almost 30 years ago after having glandular fever. So many symptoms that when lumped together was like an OMG moment. Aside from the obvious things like fatigue, muscle pain, headaches & rashes ect I had for a long time had a constant need to urinate at night and pain in my jaw to a peculiar disc shaped rash. After looking up my family history it is crammed full of autoimmune diseases on both sides, conditions I didn't even know where immune problems like vasculitis and thyroid. I discovered my grandfather died of kidney failure aged 32 which set off some alarm bells. Hopefully when I get to the hospital the doc will be more interested than my odious GP. After reading that it takes on average 4.6 years to get a diagnosis I maybe in for a long wait...and my hair will probably have vanished lol.

Thaddeus profile image
Thaddeus

Took me 15 years. And that is counting back to the crisis. Leading up to that date, my immune system crashed and had german meascles chicken pox and became allergic to all sorts. Your list is not unfamiliar to me, and I am sure to a lot of others.

kim66 profile image
kim66

15 years! Bloody hell...think I will have to save up and go private or take up knitting and start reading 'War and Peace' to pass the time!! Seriously though you just reminded me that I also had chicken pox twice, once as a child and then again when I caught it off my son...he sailed through it and I was in total agony, so painful when your an adult. I also remember becoming intolerant to eggs for a couple of years then not being able to wear jewellery that wasn't gold or silver

Probably got shingles to look forward to next...the joys of the immune system lol.

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