Hi all, I hope it’s okay to use this forum for advice and I guess reassurance.
I am a 22 year old female and I would say I feel overall healthy though I have started to experience a few prominent symptoms over the last two years (summer 2023). I have been increasingly more tired and the lack of energy is persistent despite amounts of sleep, resulting in only really walking and stretching in terms of movement. I am having frequent and more prolonged infections, often just common colds or throat infections. I’ve been having intermittent discomfort with bloating in my lower abdomen (below the belly button) and occasional pain in my right upper quadrant (on the bra strap area towards my arm) and also intermittent pain on my left shoulder.
These symptoms alone don’t really concern me but my blood test results are continuing to be more abnormal.
My white blood cell count has always been on the low side (for the last 8 years) though in the last two years it is slowly decreasing from 3.6 to now 3.1. My neutrophils count is also decreasing from 2.2 two years ago to 1.7 now. Additionally my platelets are consistently low (ish) decreasing from 135 to 119. My blood film morphology also found both Red cells anisocytosis and platelet anisocytosis.
My GP, who is really caring, has ran so many various tests after sharing the abnormalities. I have been referred to hematologist, despite the test results not yet being worryingly low, but am not being seen for a few months, which I am taking as a good sign.
I am trying to stay away from google etc as I don’t want to start to overthink though I have come to this forum to see if anyone else has had these experiences and if they have any advice to share. I am just a little worried as I used to be a dancer with so much energy and now I feel I live on the sofa at 22.
My apologies for the long message, that is probably too much information! Any advice or thoughts will be greatly appreciated!
Hi @georgia a great big welcome to our forum, whether you need us we don’t know.
The symptoms you describe could be something or nothing.
All your GP can do is tests to rule conditions in or out and they seem to have done so and are continuing to do so now by referring you to a haematologist.
Unfortunately it does take time to get appointments, I recently saw a cardiologist who said that he had not got an appointment free for 18 mths.
I know the waiting and not knowing is so difficult.
I find fresh air and appropriate can sometimes help me, especially as I am a nosey person.
I am also one for diverting my mind and music, walking and Pilates help me.
I hope others will be able to share their experiences for you.
Also be very kind and really look after yourself and please do keep posting
Erica,
Thank you so much for taking the time to write such a kind reply. It’s so validating to know others struggle with waiting and not knowing.
I am so grateful for my GP as I wouldn’t have really requested any of these tests etc as I don’t feel ‘sick enough’ to have any real concerns, just tired really. Though I think her interest in investigating is what is perhaps making me feel a little worried as I know how stretched the NHS is and I have the view that they wouldn’t look into things if it wasn’t needed but as you said it is just as likely that they just want to rule things out.
Thank you for your suggestions on supporting wellbeing, it was a helpful reminder that I can only do/ control so much, and less so if I don’t look after my mental wellbeing. Think I will go and try and take my mind off things for a bit now!
Thank you so much!
Yes. @georgia really enjoy and spoil yourself and do lovely things to divert your mind.
Also perhaps, and I know this is not easy, try and take one day at a time. xx
So since my last post i’ve seen a haematologist several times who thought my symptoms were caused by low vitamin b12 and said that it seemed just fine. A few weeks later my b12 results came back and they were perfectly in range. At our next meeting she said that sometimes people just have lower levels and that i ‘generally feel fine, right?’ which wasn’t particularly reassuring. She said we should just wait and see how the next couple of blood tests are and then to reconvene at the end of summer. Since then I have had two chest infection, resulting in antibiotics, and have unintentionally lost more weight so I am now just around 18.5 bmi. Yesterday I felt several hard inflammations in my under arm lymph nodes. This was completely new to me and has made me feel slightly on edge.
I plan to visit my gp as soon as possible but I was just wondering if anyone had any advice of how to best navigate this? I want to listen to her advice as she is the expert but I don’t feel particularly reassured. This is resulting in me avoiding thinking about it all and then I suddenly feel overwhelmed by the idea that I could have something and that I have just been sitting and not acting when I could be!
Hi @georgia Perhaps the haematologist gave you the right plan at the time, with the information they had at the time, however if that situation has changed seeing your GP is a good plan of yours and they will discuss your case with you.
Please do let us know how you get on with your GP and do tell them what you have told us.
We are sorry to hear that you are going through a worrying time.
I was just reading through your thread, it seems that you may be experiencing new or worsening symptoms lately.
As Erica kindly mentioned, we would advise reiterating these to your GP as soon as you can. It may be that you need to be seen by haematology again for further investigations such as scans or additional blood tests.
You may find our 'Blood cancer symptoms and signs’ page helpful to read - it contains information on what to look out for, as well as prompts for questions you might like to ask your doctor.
If you would like to talk through any of this with a member of our support services nurses on 0808 2080 888.