Good morning. I haven't posted before. But here goes.In 2013 I was diagnosed with hashimotos. I also had granuloma anulare and am celiac.
I got sorted on thyroxine and felt better than I had for years. However that only lasted 4 wonderful years, then I started going down hill.
I suspected lupus as I had a rash on my face. Terrible brain fog mouth and nose sores, the worse problem was that I had absolute no energy, and working with children, was exhausted.
I had to move doctors in 2017 which was when I started with the symptoms and my records were miss filed. They have never been found since.🤔
So I now have a problem getting anyone to believe I actually have an autoimmune desiese.
Over the past couple of years my symptoms have got a lot worse.. joint and muscle pain stiffness leg cramps, pins and needles endless rashes. I also wondered why I was always ill when and returning from holiday. I now know its the sun and the heat that makes me feel so ill.
I get endless water and kidney infections, and am now under a cardiologist as I have palpitations that last over an hour with pain in my arms and throat ( classic heart attack symptoms. ) I'm also very breathless when this happens, Dizzy and with extreme sweating.
Doctor still says he dosnt think that anything is conected and that he's sure it's not autoimmune. I'm just so frustrated. I've tried seeing the other doctor in my practice, who tells me its all anxiety related.
Has anyone gone private and if so how do you do this (does my doctor have to refer me?) And also what is the cost ?
Thankyou for reading I'm just feeling pretty sorry for myself at the moment, and struggling with work. Any advice will be helpful
Liz age 63
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Beth22liz22
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Have you had an Anti Nuclear Antibody (ANA) blood test done by your GP? I asked my GP to do this after ringing the hospital immunology department for advice.
They admitted that sometimes patients need to change their GP if they refuse, as patients have a right to this test.
It was only when I had this ANA test done, and it came back strong positive did I get referred.
Then I needed to be referred a second time, as the first hospital referred to did not help me.
Picking a Lupus Centre of Excellence, if you are close to one, would mean not having to go private. Covid, for me, made things worse. I'm in my 60s and have only just recently had major issues.
Sometimes the medics can think the worse symptoms, kidney disease etc, start only in younger women, but again false.
Lupus Foundation of America, has some great advice on advocacy.
Thankyou for your reply.No I haven't had the ANA test.
I Will ask for it at my next appointment. Don't like feeling like I'm telling them their job. But think I'm going to have too. I think covid made my symptoms worse too. Especially heart palpitations.
Sorry things didn't go well for you on your first referral. Seems there's little known about it. It's not good is it. If we got referred earlier guessing it would help. I hope your second referral was more successful?
Didn't realise there was lupus centers of excellence, thankyou I will have a look.
With my strong positive ANA and various lupus symptoms I was diagnosed with UCTD in the end, as new criteria more stringent and needed second positive immunological blood test result no matter how many of the previous criteria's 11 symptoms have.
Treatment is the same though, and lots on this forum have UCTD diagnosis instead, at least to start with.
I was found out to have hashimoto's last year. I also started taking levothyroxine last year. My main thyroid symptoms went away, but others started creeping in. They realised I was having two immuno conditions starting at the same time.
I was referred to so many specialities, at one point I was under 6.
I then went under rheumatology, when all the other ones told me it had to be rheumatology related. When I had my appt, he tried to tell me it was Fibro, or chronic fatigue syndrome. What I found it helped was that I already had the knowledge of those illnesses, so I plainly said it was impossible because I had symptoms that those illnesses wouldn't cause.
I had all my antibodies negatives, except ANA which was weakly positive.
I have now been referred to a specialist centre 4 months after my initial appointment.
My advice is for you to read up on the conditions they usually tell you that you have, and challenge them with the symptoms you have that don't fit. They will have no choice but to agree with you. Do a lot, a lot of research. Go for your appointment completely prepared. Read the guidelines if need be. Unfortunately, if you don't fight for your health, no one else will.
Lupus centres of excellence are brilliant, I go to one but its my local hospital. They are purely nhs. If your gp won't give you an NHS referral then you may not get an appointment. If you want to go private, search out which of the consultants at a centre of excellence sees patients at a private hospital or alternatively there is the London lupus centre. A gp may still need to write a referral letter but when your paying they don't care usually. Just tell them a name of who you want to see as you can choose. Don't take stressed or anxious or its all in your head. It often follows once you have one medical condition, others follow. I was 10 years being told I was almost making it up or I was stressed. I knew I wasn't and eventually got the Lupus and sjogrens diagnosis. Don't give up, keep fighting as if you have lupus you need appropriate medication.
I'm all negative blood tests except once I had a positive dsdna. Find a rhuemy that doesn't stick rigidly to blood test results but looks at symptoms too. Take pictures of symptoms and keep a diary. See lupus uk for podcasts or try bath hospital rheumatology podcasts birdbath.org.uk. lots of helpful info.
I wwntbon like this for years... yiu can ask your GP for a referral to a rheumatologist or self refer privately. I went private and within 5 weeks got a diagnosis. Good luck.
Hi I would definitely ask for a blood test, that's how i was diagnosed .it puts the puzzle pieces together. I had the ana test and the dsdna test which was highly positive. You could ask for that to give you the answers that you so need feeling like that. Let us know how you get on x
I cant believe your medical records have basically been lost! This is at your new drs? Apply to have access to your medical records with the surgery. An account will be set up for you to see your records online x
Thankyou. I know its really not good is it.I'm not very good at confrontation I'm afraid. I just keep letting things go. I'm going to have to be more assertive I guess.
I understand you. You have to pick your battles when you are ill too. But try to find strength for this.Write a letter to your GP surgery. Explain your circumstances.
Highlight they have breached GDPR( Google this for more information) .
You can also request log in details to access your medical records online.
Lupus is a difficult disease to diagnose unless you get a clearly and distinctly positive ANA result. Doctors just don't want to say it's lupus unless you get that.
I had various lupus symptoms for years, just not all at the same time or all the time, decades in fact, and no doctor ever tested me for lupus. I didn't really know what it was, other than my grandfather had lupus when he got old and in fact died from it. but he died before I got old enough to know any of my grandfather's symptoms to recognize it.
Then one day I was watching a drama medical show where they discussed various symptoms for lupus, and I realized I'd had ALL of them, just not at the same time and spread over many years.
So I went to the doctor and insisted they do an ANA test and told them I had the symptoms at various times, and my grandfather had had lupus, so I wanted to rule it out.
And the test came back with ANA antibodies as high as they could get! It was only then they took me seriously. It is very common for lupus to take 10+ years to get a diagnosis, because it is hard to get a doctor to take you seriously, and lupus is not all that common for GPs to detect. They'll think it is something else.
Another problem is that lupus is the holy grail for hypochondriacs. They *want* to have it because it's exotic and gets attention. So if you mention you think you have lupus, they can just write you off as a hypochondriac and not take you seriously.
So you're damned if you do and damned if you don't.
So fight to get that ANA test! An ANA test alone isn't enough for them to decide you have lupus, but if you have it plus multiple other symptoms that the doctor can see, you will get your diagnosis and be referred to a rheumatologist. If you can afford to go private pay, then go straight to a rheumatologist. But keep in mind that lupus tests are very expensive if you get the full set of them. Maybe have them just start with the ANA test and go from there.
Thankyou. I get what your saying. I do feel like a hypochondric myself. I understand why they think that. I have an appointment in 2 weeks time. I will go armed.
Just want to say thankyou to you all. I asked for an ANA test this time the doctor listened to me . He also did a ds- dna test. Both came back high. I wasn't imagining it after all.
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Has anyone written to their GP to ask to be referred to a different Rheumy?
Ear problem and dizziness
It May or May not Be Lupus
Might have lupus?! -_-
Need some help – terrible symptoms baffling everybody.
