Scared of a Lupus Diagnosis

I currently have autoimmune hypothyroidism, autoimmune urticaria, pcos and my blood tests have regularly come back as being 'within the average range'. However, I find that I'm losing hair by the bucket loads and am struggling to keep positive and don't have the energy to take on daily tasks in life. My fatigue is such that if I was to go to the gym (rare nowadays) or participate in physical activity, I am shattered for a few days afterwards and need to cancel all plans to recuperate. I went to the Dr yesterday and saw her face fall as she realised it was me again. However, she went through my medical history and wants me to be referred to Rheumatology as she thinks I may have lupus which they've struggled to identify. The trigger factor for he going down this path was that I always have cold hands and feet and one Dr years ago said I may have Renauds Syndrome. I've also got a stiff neck and shoulders which causes me migraines and am receiving physio for this- the Dr thought this might fit a patient with Lupus profile.

My question is: have others experienced a nightmare in getting diagnosed? I'd love a family of my own one day but I'm petrified considering my complex medical history and if I do have Lupus, I'm scared of further complications to me or the baby- how have others coped with pregnancy, health complications and beyond? Am I being anxious when there's really not much to worry about? I had a friend who died aged 25 because her Lupus was impacted on her life severely- I think I have that in the back of my mind which is not helping.

I'd appreciate any input from others in how they're living their lives- the challenges and any positives of a lupus diagnosis.

7 Replies

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  • Hi Musspuss... it sounds very much from your symptoms as though you are still suffering from hypothyroidism. Do you know the results from your last thyroid tests?

    If you are under medicated or not converting well enough to T3 you will have these symptoms. Have a look at Thyroid UK if you have not done that already. Good luck.

  • Hi there, had bloods last week and my TSH is 1.20 (range: 0.3-4.2) and FT4 is 11.8 (range: 9.0-23.0). Had my T3 level checked in May 2016 and it was 4.6. In May, my iron levels were 11.

    The recent bloods have just shown me being deficient in Vitamin D.

    My Dr has been very patient with me but I must admit that recently I have felt like I've been a bit of a nuisance. Having checked the symptoms of Lupus- I feel like I fulfil the criteria but then I also felt I was suffering from adrenal fatigue before I got tested for that! I swear I'm not a hypochondriac- I'm just fed up of feeling pants all the time.

  • Of course you're not a hypochondriac -very few people really are! But many here have hypothyroidism (the autoimmune type is most common). Many here have struggled for years undiagnosed and many also think that they must be doctor bothering, including me!

    Remember it's their job and the only reason your doctor might look crestfallen is because so many of their patients have chronic illness and it must sometimes make them feel like failures when they can't help us easily with something that has a beginning middle and end - such as an ear infection, bronchitis or even cancer.

    I have no answers for you about what's wrong I'm afraid. But I can tell you that my journey to get a diagnosis has lasted many years, a lifetime even. I am diagnosed now with a disease called primary Sjogrens Syndrome - which is a connective tissue disease that shares much with Lupus.

    Many with Sjogrens and Lupus have Hashimoto's Hypothyrodism but not many with Hashis have Lupus or Sjogrens. I too have cold hands and feet but not sure this qualifies as Raynauds in my case as the finger colour changes are minor compared to most. On the other hand Hashis can cause cold extremities so maybe you are still undermemedicated? I feel much better when my TSH is under 1.00 and when my FT4 and FT3 are higher within range than they mostly are.

    My son's girlfriend's mum has PCOS and has two healthy young adult children and a good, responsible full time job.

    Getting vitamin D deficiency sorted out helped me a lot and also I take B12 supplements and have recently started a supplement called Taurine which has certainly sorted out my IBS-C. I think a lot of what lies ahead for us is in our hands and have found that positivity and assuming people will believe me has really helped me to fight for the right diagnosis and helped me to come to terms with living with several autoimmune conditions.

    Each of us are different, not only in the severity of our diseases, but how we deal with what life throws at us. My advice would be to not let paranoia about how your well paid GP feels about you get the better of you and not to think of your glass as half empty where having children in future is concerned. It will be easier when you have a diagnosis for what is going on and treatment. Best of luck.

  • I've had hashimotos for over 30 years. I also have raynauds but this shows as white fingers and they aren't necessarily cold. Things came to a head this year when a major health issue came to diagnosis of APS (tendency to form blood clots) and then lupus. But it took me two rheumatologists and a haematologist to get to that answer plus some major health issues.

    I think your GP is more frustrated at not being able to HELP you rather than being frustrated AT you. My GP is the same - he says I am one of his most challenging patients but he is 'enjoying' seeing where it goes. I do find I feel better when my hashimotos is at the higher end of normal and not the lower end. But now also on anticoagulants for APS and Plaquenil for SLE.

  • Hello,

    I am sorry to hear that you are feeling unwell and that you are having to wait for a clear diagnosis. It is good to hear though that you are being referred to a rheumatologist who will be able to run various tests to find out whether you have the condition.

    We have a blog articles on fatigue and exercise which you might find useful. lupusuk.org.uk/managing-fat... and exercise lupusuk.org.uk/lupus-and-ex...

    It is also worth saying that although there is at present no cure for lupus, careful monitoring of the disease and a treatment programme with medication adjusted as appropriate enables the condition to be controlled, most patients being able to live a normal life span. Whilst some people are severely afflicted by lupus, many others can live virtually normal lives.

  • Hi... I'm sorry to hear of all the anxiety and fear you are feeling.

    About 1 year ago I was in your place, anxious, feeling sick and scared, unsure of what to do and what the future had in store. Half my brain was in denial for a good trimester but my other half forced me to use as little energy I had to seek a diagnosis. And it's the best thing I could have done.

    Honestly, today I would be more scared of being still undiagnosed and without proper medication and care.

    Be your best friend, take good care of you, deep down you know you deserve a better life and treatment, having a lupus diagnosis doesn't mean your future is over. We are here to support you. Hugs!

  • Hi all, want to say how appreciative I am for all your kind words and reassurances. I've now got an appointment at Guys Hospital in London to go and see their Rheumatology team. I've also been referred for a cardiology assessment as I've had a few falls out of nowhere recently and they think it's tachycardia. I'm scared what the future holds for me and right now; I'm more than just a little overwhelmed about my health and all the blood tests I'm having and specialists I'm seeing- no one has a definitive answer and that's what's scary- when professionals/experts look at you blankly and don't know what else to say/do next. Would love to feel healthy again :/

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