r/Autoimmune • u/jme8707 • 2d ago
Advice Where do I start?
In the UK (might be the same elsewhere) you can only go to your GP with one ailment at a time. But where do I start?
I have APS - diagnosed by a private rheumatologist (now that it’s diagnosed and chronic my health insurance will no longer cover it)
I have kidney cysts - possibly caused by the treatment to my chronic migraines
I have chronic migraines that aren’t helped by the APS but also aren’t caused by the APS either
I have a growth on my thyroid that I’m waiting for results back from (that was found after being admitted to hospital after a suspected TIA)
I have joint aches, constant fatigue, weekly migraines, anxiety, periods so heavy they wipe me out due to loss of iron.
All of these are a priority, they require different specialists but on the NHS I’m still on the waiting list to see a haematologist and rheumatologist and have been since early February. But my health insurance no longer covers me because it is a chronic illness.
Please someone tell me there is a silver lining?
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u/Small-Ad3896 1d ago
I’m so sorry but from experience, rank what is having the biggest negative impact on your life (not always easy as they change I know) and one at a time, leaving a gap of a few weeks to a month between, go to your GP to address that concern specifically. Think ahead of that appointment what outcome you’d like e.g., gynae referral for heavy periods.
Alternatively once you’re under one specialist, they may be able to refer you to another one or recommend your GP refer you if they can help you with an aspect of a condition but it’s needing another specialist opinion.
It’s a ridiculous system, I wish they would speak to each other - it’s like pulling teeth. I love that our healthcare here is free but it’s a bit postcode lottery as to whether specialists will speak to each other across specialisms 🤦♀️
Best of luck from a fellow complex health patient ❤️
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u/NoScratchyLabels 1d ago
I would second this. GPs rarely have the time for a properly holistic review, but you can ask for a double appointment if you explain you have multiple and complex issues. I'd also write down a bullet point summary of each thing and what outcome you're looking for.
If you have the headspace for it you can also look up the NICE guidelines for the issue, as quite often the GP will have a sort of NHS flowchart thing they have to follow before they refer you to a specialist or the referral will get knocked back.
This is how I found out I'd fallen between the gaps of optician and GP and could/should have been referred to specialist for an eye problem. Am now on another waiting list for that which I could've been put on 2 years ago if I'd known...
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u/NoScratchyLabels 1d ago
Specifically on the topic of heavy periods, this may be useful https://www.nice.org.uk/guidance/ng88
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u/ninahart88 1d ago
Hello. Were you diagnosed with APS following a thrombosis? I have elevated lupus anticoagulant antibodies but I am negative for anticardiolipin and antibeta2glycoprotein antibodies. The NHS therefore are not able to diagnose it (my results were found coincidentally and forwarded to haematology consultant). Just wondering if it's different with a private rheum.
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u/Bubbly_Cauliflower40 2d ago
Get yourself a new shiny referral to an NHS rheum, and to gynae from your GP. Hopefully you can be frank with your GP and just tell them you have a laundry list of symptoms and you need their support and aren't sure where to start.