Diagnosis: Hello everyone, I just turned 18 and for... - LUPUS UK


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ethan1999 profile image
10 Replies

Hello everyone, I just turned 18 and for roughly 6 months I have had lower right abdominal pain, upon an appointment with my GP and a blood test she realised my CRP was raised at 50. Because of this she decided further investigations were needed and sent me for a complete blood count and more complex blood test. Upon receiving the results I was told that my results were rather colourful and that I have many things outside of the usual range, my ESR was up, I have globulin up, platelets up, Haemaglobin down, creatine down, ANA present, smooth muscle up, but my RBC and WBC are okay. My physical symptoms include a dull aching back pain, tiredness, occasional night sweats, lower right abdominal pain and an inflamed lymph node in my neck (ultrasound scheduled to look at this), it may be worth noting none of these pains are severe or preventing me from anything . Whilst lymphoma is a possibility, I am still yet to see a haematologist and rheumatologist (both meetings arranged). Are there any auto immune diseases that could be to blame for these blood test results ? Or has anyone had similar blood results that they could compare to mine. Of course at 18 years old I am just petrified of dying and these symptoms have caused an onset of serious anxiety.

10 Replies
ava97 profile image

same case with me.all of these symptoms were avalavble in my boddy last year and I am 19 yrs old.still sometomes lower right abdominal pain starts me😖😖😖.I feel severe pain in my stomach but what is this really dnt knw.why this happened also dnt knw.

ethan1999 profile image
ethan1999 in reply to ava97

Have you had similar blood test results ?

ava97 profile image
ava97 in reply to ethan1999

no,my blood test was ok but esr was high.

webar4780 profile image

Hi Ethan, welcome to the forum.

I am sorry to hear you are suffering with increasing anxiety. The anxiety is oftentimes, a very normal response to fear of the unknown.

I urge you to concentrate on being kind, loving, and reassuring to yourself, whilst you wait for test results. As you note, fear exacerbates anxiety, exacerbating ill health symptoms. It's a very vicious circle.

Every time you have fearful thoughts, especially concerning death/dying, remind yourself, you have no supporting facts for those thoughts.

It sounds as though you are in good hands with your GP. Oftentimes, young people get dismissed because they are young. However, your GP is definitely pulling out all the stops, for you. GP as good as that is keeper. Remember, tests are used to rule out, as well a, to rule in, a diagnosis.

Now, having said all that, yes, I have had similar blood test results. I was diagnosed hypothyroidism years ago, recently, Sjogrens syndrome, query lupus. And, yes, just like you, and many others here, I did start to worry, especially as I felt so unwell, prior to sjogrens. The worry made me worse. I knew I had to handle that, priority!

HU family here, meditation, good food, exercise, no alcohol, keep loving... all help... and keep sending bad thoughts away!

Sjogrens syndrome, carries a higher risk (in population), of lymphoma, but the risk is very low. Dwelling on risks will not help.

I am telling you, what I learned over the last 3 years. I don't like to think of you, or anyone, getting as low as I got, whilst waiting for tests. My worrying, did not change my diagnosis. Worrying, was such a waste of precious energy, at the very time, my body needed my support.

It is only since, I have taken the necessary steps to reduce stress, I now live more self-centeredness, in a caring and loving way, being myself, listening to my body, nurturing me, that many of my blood results are normalizing. Hearing a consultant tell me, definitive markers for Sjogrens, had reduced, was not surprising. I believe in my body, it constantly, tries to repair damage. We are all, wonderfully made.

Last year, I was taking hydroxychloriquine, prescribed to dampen the immune system. I no longer take them (though, I would, if told I needed them again). I have gone from 3 monthly, to 6 monthly, check ups.

Whatever happens, knowing that I am doing everything, in my power, to get well, gives me joy, confidence, and stress free days. That is enough for me now. Most of us, here on HU, learn to live, one day, at a time.

None of us know what the future brings, rest assured, you are being cared for. Let go of anxiety, whenever it rears its head. I wish you well, you have a young body, rejoice in it.

ethan1999 profile image
ethan1999 in reply to webar4780

Thank you for the reassurance, having these health issues and blood abnormalities at this stage in my life has just made things really difficult, I have a great family, lovely girlfriend and amazing friends too, and due to this my fear of losing all of that becomes increasingly worse. Luckily my aunty is a diagnostic consultant in NZ and has helped me with diet advice, and has essentially told me not to worry about dying (suggesting its not a current possibility), yet i still find myself waking in a nervous state, butterfly tummy, sweaty hands and feet, and its incredibly hard to shake this off. Hopefully next week with my lymph node scan i will come with good news, pray for me :).

webar4780 profile image

Indeed, I will! Ethan, be reassured you are in my prayers. Your aunty sounds a very wise woman.

I am happy to hear you have so many loving, and loved ones, to support you. Just remember, you haven't changed, just your thoughts have.

Read about Mindfulness. It makes you realise we can control our negative thinking. (Though, as I say, a very normal response to any of us with health issues).

I pray you bring good news.

Chanpreet_Walia profile image

Hi Ethan1999,

Welcome to the LUPUS UK HealthUnlocked Community. We offer a free information pack which you can download or request here: lupusuk.org.uk/request-info...

We recently published an article on our blog about ‘getting a diagnosis of lupus’. The blog article outlines the specific tests for lupus as well as the specific ‘diagnostic’ features that are needed to make a diagnosis: lupusuk.org.uk/getting-diag... .

I am glad to hear you have a lovely support team around you! If you would like additional support, we can provide you with LUPUS UK contacts who you can speak to over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there as a listening ear to offer advice and understanding. If you would like a local contact to speak to, you can email me at chanpreet@lupusuk.org.uk . We published a factsheet that contains services and support helplines which may be of interest to you: lupusuk.org.uk/wp-content/u....

Almost 90% of people with lupus experience fatigue making it one of the most common symptoms of lupus. We published an article on our blog about managing fatigue which contains helpful tips and information which you can read here: lupusuk.org.uk/managing-fat...

It is important to discuss your symptoms with your doctor to ensure you receive the correct advice and treatment (if required). We published an article on our blog about ‘pain management’ which you may like to read here: lupusuk.org.uk/pain-managem...

Before attending your appointment you may like to read our blog article about getting the most from medical appointments here: lupusuk.org.uk/getting-the-...

I encourage you to keep using an online sociable forum such as this one, as it gives you the opportunity to connect with other people with lupus and relieve the worries you may have by hearing other peoples’ experiences.

Good luck for your upcoming appointments, let us know how you get on.

ethan1999 profile image
ethan1999 in reply to Chanpreet_Walia

Thankyou for the support, I'll keep you updated.

ethan1999 profile image

Hi guys, after a long week I bring bad new, what was possibly thought to be an autoimmune disease has in fact turned out to be stage 2 Hodgkin Lymphoma, and I will start treatment next week, coming only 2 months after my 18th birthday.

Thankyou to those who commented on this thread with reassurance and valuable information, it has certainly helped along this journey.

Of course this will be a tough journey, however there are heaps of teen stories of this disease, explaining their remission and experience. It is a Shi**y situation, but I am determined and I will push through it.

Tamster14 profile image
Tamster14 in reply to ethan1999

Can u tell me ur symptoms plz.

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