I am a 40 yr old female. I have severe health anxiety which was triggered by low iron that I suffered with last year.
I have sought advice from a B12 specialist who has started me on regular B12 injections and took bloods. My bloods were returned with what I am told is a very low level ANA <=1.80 and that this could possibly be an autoimmune issue. I am scared to death and had no idea these tests would mean more uncertainty.
I paid privately to see a GP last week who said she does not think I have autoimmune issues but she thinks I need to hear this from a rheumatologist so has referred me and I have an appt this Friday. Luckily we have private insurance so this has been quick.
I am not sure if my brain is playing tricks on me due to my anxiety but ever since I had this email with the ANA result I have started getting symptoms in that my hips and back ache. I also had a tight chest last week which I know could have been my anxiety. I have been taking Mirtazapine to help with my anxiety and sleep and increased this last week so I am not sure if the chest could relate to this.
I am generally fit. I love walking and normally take the dog 5k a day. I also have horses and a young family so am constantly running around.
I am not sure what to expect from my appt this week. I am so worried this is Lupus or something similar. Is this better if it is that I have found out early treatment wise?
Any help or positive words would really help right now.
thank you so much xx
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Silvertabby84
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Hi silvertabby. Try not to over think it too much. A titre of 1:80 is weak positive but a percentage of the population have that result without having any AI illness so without other positive blood results like DSDNA or compliments its unlikely anything would be done on that result alone.Some rheumatologists won't even see you with that result. There is a criteria for lupus you may find useful. Fatigue is a huge symptom that affects most of us I'd say often to the degree where we struggle to get out of bed in a morning and need naps through the day. I have a dog and struggle to walk 1 mile some days. B12 defiency anaemia is auto immune so fingers crossed once you've had your loading doses things will improve. It may be worth getting your thyroid checked as that often goes hand in hand with b12 deficiency. Hope appointment goes well SML x
I do have fatigue but I could put that down to my anti anxiety tablets. When I say fatigue, I sleep well and could nap in the day but I rarely do. I walk quite a lot and don’t usually feel worse after.
I am not sure what to expect from my appt with the rheumatologist. Are they likely to take more bloods? Can I ask what your first symptoms were and how you manage please.
I'd expect them to if they suspect any other AI issues.I'd also expect urine, BP etc. It is very complex with a lot of overlap so it won't be a quick process it can be a long journey to diagnosis.There is no difinative test and bloods can flit between positive and negative so often a wait and see approach is adopted.
First symptoms is a difficult one because with hindsight I suffered with fatigue and periods issues in my teens. I became unwell in 2013 with a chest infection which led to pleurisy in both lungs which inflamed my heart. 5 yrs later I got a diagnosis after seeing a respiratory specialist who advised me to reduce the steroids and I went stiff. That led to my first rheumy appointment. Routine urine was off the scale and I was sent to the renal unit at the Royal Preston where a biopsy revealed class v lupus in my kidneys. Often damage is done before symptoms appear. I have to pace myself, limit sun exposure, wear factor 50 and sleep. I've also had to remove dairy from my diet as that was the cause of gut issues. There is a wide range of symptoms and we all present differently. I also take a shed loads of meds inc hydroxychlorquine, 2 lots of immunosuppressants and I'm steroid dependant as that's the only drug that keeps my lungs stable. It is all manageable but it takes a lot of compromises especially being immunosuppressed means limiting contact with others to avoid bugs.
Stress is a big trigger in AI illness and must be kept to a minimum x
Thank you for all of the information. It sounds as though you have been through an awful lot. I have read that it can take years to diagnose sometimes.
I am just praying for not horrendous news. I have a lovely little boy who is always the front of my mind x
Silvertabby 84 : Are you so tired that you can not vacuum or make your bed? Is your hair falling out? Do you have joints that are red swollen and hurt so much walking is unbearable? Do you have skin rashes on your face, or anywhere else on your body? Do you have mouth sores/ulcers? Or in your nose? Do you suffer from urinary infections and have kidney pain? Are you photosensitive/ breaking out in rashes and burning skin in the sun?
Lupus is a disease revealing itself in blood tests but also clinical symptoms as listed above. Your symptoms as stated sound like anxiety. However, when you see your rheumatologist it would be wise not to lean too much on your anxiety. Too often lupus patients are put off with a diagnosis of anxiety and then do not receive the treatment that they need. The good news is your blood values are low. It is noted in research that millions of people have a low ANA. Did you have a recent illness or infection? If you indeed have lupus it has been discovered early. Lupus is a tough diagnosis but it does not have to be a death sentence. Some very good treatments are available. Don’t worry. Life is good! MM
I’m being treated for Lupus/Rheumatoid. I’ve ignored my symptoms most of my life until the swelling in my hand got so bad I couldn’t feel my fingertips.
I have a low ANA (slightly higher than yours from memory). But I have swelling in my joints, angioedema (my face blows up and reacts to everything) severe eczema and psoriasis, reynaulds, tendinitis, tensonyvitis, ethromelagia, asthma, I get pneumonia often, constant infections, lots of stiffness in the morning, fatigue etc it feels like the list is endless. When I finally got told this could all be autoimmune it’s like my life of bad health made sense.
From what you’ve said I’d be surprised if it was an autoimmune disease and it could possibly be the anxiety of the result. The good thing is you’ve got insurance and I hope they put your mind at rest. If it does turn out to be an autoimmune disease you will be treated quickly and be put onto medications.
My hand turned black and they didn’t know why. They thought my limb was ischemic. It caused so much anxiety for me I didn’t get out of bed for 6 months I thought I was going to die. So I completely understand how crippling health anxiety can be. All the best, Toni
Thank you Tonkie. That sounds awful for you and I can imagine very scary. Are your meds controlling this for you now?
I don’t have any of those symptoms other than an achey back but I’ve always had that from riding and I see the chiropractor a few times a year. I have a bit of an ache in my hips but I do walk quite far with the dog and I also wondered if this could be peri symptoms.
Hopefully the specialist can give me some further information this Friday.
hey lovely . You’ve had great replies but I would Definitely book some CBT sessions either privately or you can NHS self refer on line . Your anxiety sounds crippling 😔and I hate to say it but the journey to diagnosis (if there is anything AI related to diagnose ) is often very very long and fraught with changes in diagnoses and blood results. The CBT will help I’m sure with helping you to manage better whatever the outcome xxx
Thank you so much. I am really trying with this anxiety. You are right in that it is crippling me. I have just started therapy and I really hope I see some results from it. I am desperate to find a way to manage x
Bless you it will help I promise . The best advice I can give you is distraction distraction but already sounds like you do lots of that . Be careful with the private consultants only saying that from experience . They can be useful but it can muddy the waters . Please don’t be too hard on yourself we often speak to ourselves in such a mean way we’d never ever speak to anyone else like that . The therapy helped me as I could tell him my dark thoughts (not saying you have any of those ) and not feel judged .
So cliche but taking each day as if comes can be so helpful xxxxxx
Hi Silvertabby, I was diagnosed with underactive thyroid and then a couple of years later with SLE many years ago in my thirties. I had given birth to my first daughter but not my second. So I had a 7/8 year old and then a baby whilst having those two conditions. I was also working as a Lecturer.
I say this so that you know sometimes things progress slowly and you can cope and have a relatively normal life. However, it is true that lupus inflammation can be causing problems well before you start having the troublesome symptoms!
My worst period has been the last 25 years which includes menopause and my 50/60s, I am now 72. I still cope but have more ill health than my friends.
Others have given much good advice and I would say don't panic before you know anything for sure. Then be your own best advocate, learn as much as you can and make sure you get the treatment you need. The members of this forum have sympathy, empathy, experience and knowledge and, as you have been already, will welcome you. 😊
Thank you for your kind reply . It sounds as though you have lived with this for a long time. I need to find a way to manage my anxiety and am determined to do that so that I can cope and be the best version of me for myself and my family it’s just so hard a lot of the time but I will keep trying x
Stress means the body can't deal with things so well.
It is an extra burden.
With systemic autoimmune conditions stress can cause flares.
Treatment with any medication can be harder, if stressed, as can be the body dealing with hospital treatment eg surgery.
Our bodies function best if we are relaxed. Doctors try to help us relax, well good ones do, by having a 'good bedside manner'.
Having said that, I have been a great worrier, and hospitals probably have me down as being anxious.
So I'm trying hard to control anxiety, to trust those who treat me more etc so hopefully things go as smoothly as possible with treatment or surgery of any kind.
It may have taken me nearly a lifetime but it is something I would like to beat. A challenge, but challenges can be fun too.
thank you. I know what a struggle it is. I am trying so hard with this health anxiety but it definitely gets the better of me most of the time which I feel so discouraged about.
I hope all your treatment goes well and you can find some peace and rest x
Don’t forget you are very special and if being special Includes being anxious in nature then so be it ❤️. You’re clearly doing your very best and if a wheel falls of the bus you can put it back on again with some help xxx
Hi Silvertabby and welcome! The initial rheumy appt is likely just a starting point, as most rheumys like to repeat your bloodwork and monitor you before making a diagnosis. This is because some of the blood tests, like the one you mentioned, are known for false positives, so they need a few positive tests in a row to be more certain. Even then, they take your symptoms and history into account too. No single blood test is definitive when it comes to AI disease!
Treat your upcoming appt more as an initial conversation, and a chance for you to ask questions. Write a shopping list beforehand with all your symptoms, including the new ones (the doc will take your meds into account), and with all your questions. This will help ensure you don’t forget something!
Let us know how it goes—and I know it’s hard, but please try not to worry too much! We all have AI disease on this forum, and we’re (mostly) OK! Either way, there’s support here for you 🌻🌈✨
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