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LUPUS UK
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Searching for answers (is it autoimmune?)

I've been having issues for a few years now which largely involve fatigue. I've been diagnosed with hypothyroidism (with antibodies) and some vitamin deficiencies and have been receiving supplements for a couple of years now. I'm now at a point now where i'm being told my levels are fine, but I just can't seem to shake this fatigue. I've also now developed eczema in my ears which is triggering thrush and a pain in my side which just makes no sense (had a bunch of tests and nothing has come up).

Every time I look into any of my symptoms it's always autoimmune that pops up. I've always tried to ignore it cos drs have been diagnosing and treating things, but i've reached a standstill now and I still don't think I have the full picture yet. Doc has said he might diagnose fibomialgia which frankly doesn't make sense to me since I don't get severe pains, just odd aches and little pains so i'm wondering if it's about time I bring up the autoimmune question.

I just have so much stuff going on I find it very hard to believe it's all coincidence and although treatments will help to some extent i've never been able to shake the fatigue. Now i'm developing eczema and a pain which I swear is triggered by the ear infections and I just have no other direction to look in than autoimmune.

I've heard if you have one autoimmune issue you'll tend to have others and I do have the thyroid antibodies so it's not a crazy leap to make (I hope). I just really want answers so I can feel better or at least just know why I feel so naff.

I had to drop out of uni and can't work and this thyroid excuse is wearing thin now that it's apparently managed (even drs don't think I should be tired). I just need something to explain it and prove i'm not just lazy.

I'm even starting to question myself if i'm just being lazy or need to get used to things as they are now. I feel it though. It is physical not just mental.

I don't know what I expect to gain from this, but right now i'm willing to try pretty much anything so there you go. That's my situation. I guess I'm wondering if anybody can relate or offer me advice? Is it worth talking to my dr about it? How do I go about it? I'll answer any questions if people want to ask them.

I really appreciate any help or support people can offer. Thanks for your time.

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Hi,

You'll will get lots of experienced good replies. I have lupus and hashimotos but getting the lupus diagnosis was a long old job. I didn't suspect it but I knew I wasn't right even though my thyroid bloods were "ok" yet all my symptoms were blamed on the poor old no longer working little gland. I now see an endocrinologist and take both T3 and T4. Also take hydroxychlorine for the SLE and being monitored by rheumatology and cardiology and so feel a bit better and better supported.

Sadly I now have to see a neurologist because I have constant pins and needles and intermittent numbness but at least my symptoms are real and now taken seriously!

Good luck and don't give up.

L 🙃👍🏻

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Thanks for your reply.

That's basically what I'm getting right now. Everything used to be blamed on my thyroid and now I'm being told that's fine so I shouldn't still be feeling like this. Annoyingly it's more of a "You can't be feeling like this. Go away" than a "Can't be the thyroid. Let's investigate".

It took me ages to get the thyroid diagnosis too with drs not believing me so honestly right now I'm more inclined to trust my gut and keep pushing than give up cos they're telling me to. I know I sound like such a hypochondriac to most people and drs, but I know how I feel and I just want answers.

Still, I'm kinda scared to go see my GP and ask for a referral. Last appointment consisted of me in tears and him saying stuff that suggests I just want pills. :/

Glad to hear you're being taken more seriously now. Sucks that you're having even more issues though. Hope it all gets sorted. :)

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Hello and welcome, Bubblemonkey,

It often takes a long time before an AI disease is diagnosed, as I'm sure you realise. I was lucky to get a diagnosis within 6 months of first presenting to my GP, but even then, I was diagnosed with and treated for heart failure first! Have you suggested the more specific tests to your medics - especially the bloods described in the LupusUK leaflet on diagnosis?

If not, have your medics given any specific, concrete reasons why a AI diagnosis does not fit?

I suspect you will find many here who have been given a "fibromyalgia" diagnosis on dubious grounds, and it is certainly worth chasing down and eliminating the alternatives before accepting FM.

EDIT - after seeing your reply to Polina44, tears seem to be one thing that seem to set some medics off on the wrong track! I try to stay very calm, and state at the outset of the consultation what my goal is, in very concrete, specific terms e.g "My main goal today is to discuss what to do about my fatigue. I've been wondering whether this could be accounted for by a more general auto-immune condition....it would really help set my mind at ease if I could be tested for ANAntibodies maybe...." Plus a very concrete description of symptoms - instead of "I feel so tired all the time", something with numbers can help - "Last week, I was able to walk about 500 yards from the house to the shop every day. This week, I have only managed that on 3 days..." that sort of thing? i.e. not messy horrible emotions!!!!!

Keep in touch x

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Hi. Thanks for your response.

I honestly think my GP is suggesting fibo just to get me to go away. They don't do much testing themselves cos I'm lucky enough to have access to private insurance and specialists tend to (quite reasonably) only look at their area of expertise.

Although I have brought up all my issues in one appointment with my GP before. He just focused on one thing though.

I'm hoping that if I bring it up with my GP he'll be willing to refer me to a rheumatologist and that they will have a better view on my situation as a whole.

This will be the first time I really bring up AI or anything specific cos I don't like to look like i'm trying to diagnose myself and don't want to end up missing something cos I was looking the wrong way.

I think I may have been tested for one or two AI conditions, but I'm not sure. I tend to only be told things once they're found so don't know much about what has or hasn't been ruled out.

I really don't want to be given a diagnosis of fibo or chronic

fatigue if I can help it cos I feel like it'll just be used as an excuse

not to investigate any further and take another x years to make any progress.

Edit:

I tried so hard with that appointment as well! I was going to go in all calm and collected and get it sorted all professional like, but then he stared with the "would you like fried with those drugs" and making me sound like a hypo idiot. I totally lost it. I'm actually usually quite chill- had enough appointments by now to be used to them after all- but that one just really set me off.

This time i'm planning for more of a "I think it could be worth seeing a rheumatologist before diagnosing fibo. I've found one my insurance should cover so all I need is a referral from you." Hopefully that will work and my eyes will remain tear free.

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Thanks for that info. For me, one of the most useful learning points over the past year or so has been to take control of each appointment by being really clear about the one or two things I need to get out of it. The specialist appmts are too precious to fritter away and most medics seem to respond quite well if I say what I need right from the start (so long as I couch it in suitably deferential language!) Dont forget that you can ask your GP for a printout of any test results. x

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Thanks. I think I'll try that approach this time. Say I want to rule certain things out before diagnosing fibo and think a rheumatologist would be a good option. Go see them and explain that I don't feel like my current conditions explain everything fully and I'd like to rule out other AI issues since I know I already have some. I'll go armed with a list of anything that might be relevant too (might see if that can include past test results).

Ugh! I'm so nervous. I think I've been holding onto the AI possibility for so long that I don't want to be told it's bogus and it's all in my head. I'll never know if I don't try though.

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Would suggest you check out Myositis or the web site of The Myositis Association

Best wishes!

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Thanks for the suggestion. I'll take a look :)

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