I’ve been feeling pressure, not particularly pain, under my ribs on the left for a while. I’ve mentioned this to haematology but no reaction from them. I can feel it most when I’m sat or laid down.
Is this relatively normal?
I had an iron infusion last as very anaemic, which hasn’t made any difference to this.
Have you had an ultrasound of your spleen?
No, I’ve only had telephone consultations since January 2020! Having the iron infusion last week was the first time I’d been to the hospital since then, and only saw the nurses who attached the cannula and infusion. I have tried phoning several times but it’s an answerphone and no one calls back.
hi do you live in Kent only i did attend Medway Hosp but now only telephone calls !!my platelets when high and my blood pressure my Gp not happy with me having just phone calls all time since out of lock down
I am lucky my Gp did my scan on spleen and kidneys and liver last week
I live in Yorkshire. Spleen still a bit uncomfortable but not as bad as it was.
If you report this issue at a minimum the hematologist should palpate your abdomen to feel for enlargement. Cja1965 is correct to note that imaging may also be indicated.
As I’ve said to cja, I have only had telephone consultations since January 2020. The haematologist has changed since then, so it’s now someone I’ve never seen or spoken to as it’s of the specialist nurse who calls. Last time it was someone who was helping out - short of staff as usual. Only saw nurses for my iron infusion. The first appointment I got for the iron infusion said it would be done over the phone - a good trick if they could do it! I might try my GP - also easier said than done!
That is really unacceptable. Many of us have been back to live appointments for some time now. What you are reporting requires a face-to-face assessment. Whether it is palpation by the hematologist or imaging, it requires prompt follow-up. If your local docs are unable to provide proper care, perhaps it is time for a change.
Hope you get this sorted soon.
I am writing because I too had 'pressure' under my ribs on the left side of my body. At first I thought it might be my spleen (I have ET, diagnosed in 2011 and am now 80) but a scan showed it was at the upper end of 'normal'. However, I had been given 5 months of steroids for a chest infection. previous to the scan. When the steroids were stopped, the pressure was still there, and only disappeared after I was treated for multiple blood clots in both lungs revealed by a chest scan. These have now dispersed but on the advice of my haematologist I now take a blood-thinning tablet as well as a daily aspirin.
From what you have said. your treatment seems unsatisfactory. Sadly, assertive patients get the best treatment. Ask your GP to refer you to an MPN specialist and do not take No for an answer. Good luck and thinking of you. Sallie
You've found one of the reasons we need to meet the Dr for real, only by touching (palpating) can they estimate your spleen. A good Dr can tell a lot this way.
I also have had sensations in the spleen area so I got the palpation and scans. Mine was very normal (10.3cm). Dr says it's gas, and with all ok there I have accepted that answer.
But you will need at least the Dr visit to get your answer. Your haem should be reacting to this info. We do hear in the US that UK-NHS can be hard to navigate.
Have the same experienced
hi.
If you are getting nowhere with haematology department, ring Patient Advice Liaision Service PALS and complain.
First call could be to haematology again and if they do not ageee to a face to face tell them your next call is to PALS.
If there is no MPN Specialist in yout Bars ask eho the MOn Specialist Nurse is. They should provide you with contact numbers for emergency and non emergency advice.
I hope you get this sorted out.
Very frustrating having to fight for care
I have polycythemia vera and an enlarged spleen is part of the symptoms. It feels like your full after eating small portion and hard to jog sometimes. My ultra showed mine. Dr should be checking for it along with ultra to check for volume.
Enlarged spleen is how my pv was detected. I had often been to er's complaining of lower chest pain. They immediately started trying to find heart problems. Finally my heart guy diagnosed pv and started me on plebs and hu. Two months later my hemo guy said that my spleen was still enlarged but was likely much larger in the past. Anyway, since treatment started there has been no more lower left side chest pain and my numbers are pretty good. Your pain/discomfort may go away with treatment as well.
hi, are you in uk? I’ve had this a couple of times and have been to my gp and asked for an ultrasound. I’ve had it very quickly both times. It should be straightforward to get but sometimes we need to be pushy. Good luck x
Hi, I was diagnosed with ET last May, I have been having this pressure feeling you are talking about for a long time, maybe a year before being diagnosed and still get it now, I have told the doctor and haematologist but no one does anything, back in tve beginning I seen a haematologist and she felt my spleen and said it was fine, same as you I only get telephone calls now, it sometimes is really bad and makes me feel very unwell but usually passes in about 20 mins but it's really horrible, not good when you are working as well
Hi Lizzie,
I have an enlarged spleen (19 cm’s) and I can only really feel it when I have overeaten. If I am sat upright after dinner it’s a bit painful, and sometimes I feel vague stabbing pains under my ribs.
If you are concerned ask your dr to refer you for a scan, mine was 16 cm’s when I had bloood clots 3 years ago and has now grown to 19’cm’s. I wish I had asked for a scan 2 years ago as I suspect they would have discovered my mpn sooner.
Why does your spleen become enlarged?
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