spleen scan and latest bloods

[Notdiagnosed]

just another update.

I went for my abdomen scan on Sunday and he seemed positive but not got full results. He said he needed to scrutinise them more. I have nodules over one kidney which was diagnosed years ago by my nephrolodist who was head of the British hypertension society. I said to him ....oh you mean cysts and he said no""nodules. He said he was reluctant to do snyrhing because my kidney worked.he said it could "be "the cause of my spiking blood pressure. But he discharged and I never had it looked at until now.

BUT when the latest person did my scan Sunday he said they were cysts.i said i was told nodules and he said cysts.i remember my nephologist drawing me a picture of a cloud like thing and saying this is how your kidney looks. Damaged and a lot larger but now they are saying cysts.Who do I believe. Things like this are why I lack trust. Nodules are not normal but cysts can be.i was definitely 100% told nodules.

and latest bloods done 4 weeks after my covid are so have gone up slightly. And it worries me if they have gone up to this in 4 weeks then maybe another couple of months they will rise again. Do you think he will discharge as he has 2 normal tests now.

One on day I tested positive for covid and 4 weeks later but only just over 2 weeks after my first negative test for covid.

platelets 395

lymphocyte 3.2

neutrophils .6.3

wbc 10.4

in fact she said very healthy bloods. (In other words nothing wrong with you). Although lots on here think 395 Is quite high end of normal.?????????

I am due back to haematology in 4 weeks and honestly in all my 18 years of bloods I can see on my gp portal my wbc has never ever been this low or only once. I honestly think because everything went so low with my covid.

my epo is not back yet. The reason I didn't wait until nearer my appointment to go for these bloods as I had read on some hospital sites that epo can have a 21 day turnaround time.i wish I had waited a little longer now though.

[hunter5582]

That is quite frustrating. I would certainly push for clear answers to what is going on with your kidneys. There are kidney issues that can cause reactive thrombocytosis. This is something that clearly needs follow up.

Suggest double checking the reference ranges used in your lab for the leukocytes.

My lab show these reference range values.

WBC [3.98 - 10.01]

Neut [1.56 - 6.13]

Lymp [1.18 - 3.74]

Per my lab

WBC at 10.4 = mild Leukocytosis.

Neutrophils at 6.3 = mild Neutrophilia.

Lymphocytes at 3.2 = within normal limits

You are correct that some labs would show PLT=395 as High. My lab does too. However, 450 is the point of reference for thrombocytosis be definition.

Definitely would review all of these numbers with your care team for a better explanation. The issue with your kidneys definitely needs a clear diagnosis. It may be highly relevant to what is going on.

Hope you get answers soon.

[Notdiagnosed in reply to hunter5582]

Hi hunter.

Yes the kidney issue was back in 2009. I have hypertension which I have been treated for since I was young. I'm not overweight and it's been difficult to control. I went in hospital before when it was hugely raised. Moving on eventually the consultant I was under asked for a scan of my kidneys.

When I went for the results I was also being looked into for my high white count and platelets which he said was definitely nothing to do with my kidney issues as he said the counts had been like that for years before. He showed me bloods from years before.

Anyway he drew me a picture of a normal kidney and then a picture which I called a cloud. He said it had nodules all over and he stated nodules. I said to him "oh polycyclic kidneys" and he said "no they are nodules" and then said that it could be the cause of my fluctuations in my bp. He said he was reluctant to do snything as my kidney worked.

And as I had my scan on Sunday I said to the scan man that I knew I had nodules all over one kidney and he said he eould look. He asked if I knew which one and I said I didn't. He said it's your left one and they are cysts. I asked years ago if they were cysts and my consultant said they were not. I'm confused. Probably nothing related. I had epo test yesterday and that's something to do with kidneys too. My kidney blood tests are fine though.

The latest scan man said he needed to scrutinise my scan and seemed positive about things. But don't know as yet. As far as I know my spleen was ok.

Bloods from yesterday were higher than the ones I had the day I tested positive for covid but this second lot are only 2 weeks post negative covid snd I have a feeling they are creeping up again. And if I was tested again would they be higher again by another month or two. I see the consultant in 4 weeks time or so. Maybe I'll get closer to answers or maybe not.??

[hunter5582 in reply to Notdiagnosed]

I sure hope you get answers soon. I would note than any infection will tend to make CBC numbers higher, particularly the WBCs. It sounds like you are going to really push to find out what is going on with the kidneys. That is precisely what I would do too.

I am wondering if you have had your metanephrine levels checked. Can be done with blood work but the 24-hour urine metanephrine test is more definitive. May not be relevant to your situation but note that I have had mine checked twice due to NF1 and risk of pheochromocytoma.

Do please let us know how you get on.

[Notdiagnosed in reply to hunter5582]

Yes. Twice once when I had a really bad infection and spent 10 days in an infectious diseases uniit with it but that was years ago. I had to take my urine in gallon containers up to the hospital then again in 2009 when I had this scan. Catecholamines last time I think it was called. And I remember it was in case I had pheochromocytoma. First was because I was too ill to pass urine for such a long time.

My gp says they never got told I had kidney scarring or nodules. Makes me think I'm going crazy sometimes. Lack of communication or just they thought it was nothing. But obviously something because he told me.

I'm just low at the moment. About how long all this is taking and why. And trying get over what covid does. Its just me being impatient I suppose but It's getting to me now. And widh I hadn't got my bloods done do soon too. It was only 2 weeks since I had covid. I tested positive 12 days. So it wasn't out my system and I know it lowers counts and certainly lowered mine. The pharmacist woman I had telephone consultation with said mine were very different to all others. I just hope they take that into account before discharging me. My epo is not back but turnaround can be a while on that one.

Part of me thinks that I'm just helping them see what happens after covid and I'm just a test study. Not helping me though.

[Notdiagnosed]

Just rang haematology about my epo result. She said not allowed to give it to me. I said I thought we were supposed to be involved in our own care but she then said I was unreasonable. And emailed through to the haematologist I think.

I don't think it's unreasonable. I only wanted a figure and could look it up on the Internet hospital sites. And my scan results too I asked for.

Just got to wait I guess now for the end of August. It's annoying that we aren't allowed to ask even without it being unreasonable to do so.

If the results were available on the nhs app we wouldn't have to ring. I understand not everyone wants to view them but I am one that does. It should be made available to save ringing up and taking time of the secretary. And in my case being unreasonable asking about it.

So now I'll be put down as anxious and unreasonable too. This is why we cannot do these things in the UK. They can write anything down on your records that can come back to bite you later on in life. We just have to accept the treatment they give or do not give. We CANNOT ask for our rights to test results. We cannot get copies of things sent by post. In fact my letter from haematology sent to my gp had a few mistakes. Firstly they wrote my blood test results wrong (typo of a 8 to a 3). And secondly they wrote a medication on my list that I have never ever taken.

[Notdiagnosed]

Well a surprise phone call from the secretary today. I have had my appointment bought foward to next Wednesday with the consultant but instead of face to face it's a telephone consultation. I think they will be glad get rid of me tbh. And with it now being telephone I think it wont be any bad news. Just getting people off the books that don't need to be on their books so to speak.

Downside is that I don't get to see with my own eyes any of my results. I will certainly be asking him for copies of all my blood tests and scan report. That is for certain. Then nothing gets misinterpreted.