well I have had my telephone consultation with the haematologist just.
my epo 7.3 and two under 450 bloods tests later he's discharged me. 395
I had my scan results and he says my spleen normal.kidney cysts are normal.a and everything else normal.
says that some people can have abnormal blood tests that can be normal for them.
He said if you took platelets 10 times a day you'd get different results. And infections are most likely my cause. Even though they have been raised for years.He said covid can do it and other infections.
so all in all I'm discharged.i said could my bloods being low maybe because of covid but he wasn't interested in doing another and said he will print bloods off and send them to me. He wasnt interested in doing any more tests for triple negative now because he says cancer genes tests are normal.
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Do you all think that with my last 2 blood tests and also normal epo I can relax. I'm a bit annoyed they haven't even offered just one more blood tests. I have had this problem since 2008 and had all tests then just to be told normal for me and then again today he said the same.
I had covid unknowingly for the first one under 450 and two weeks after testing negative again it was under 450. He said he was absolutely adamant I didn't have any of the blood cancers because all my gene tests were negative. He said he knew that another doctor had suggested a bmb but he wasn't going to do it now because of my two under 450 platelets tests. It's all over the medical sites that covid lowers counts.
I may just pay for one more blood test soon for my peace of mind.
My epo was normal so not secondary anything.
I asked about my lymphocytes suddenly going double. He said they haven't. I said they have suddenly doubled from my last 12 years bloods and stayed near on double my normal" for over 6 months until I got covid . They been over 4.1 and then dropped 0.9. . And he said lymphocytes are funny things. I have edited now because my normal lymphocytes have always been about 2 5 so not double tbh. But over 12 years have never ever been 4 or 4.1. Even with viruses.
It's just strange that for 12 years I have had high wbc and with covid lowest its ever been and my platelets too. Both done with covid infection and he's using these to discharge me.
He also asked if in the last twelve months I had made any lifestyle changes to which I said "like what" He said diet etc. I replied I had changed nothing. He just shrugged.
All my vitamins bloods tests are excellent. My cholesterol is and always has been more than excellent. I had hypertension since I was young. Runs in our fanily too. I'm a good healthy weight snd I exercise too . Just got covid and the jabs didn't suit me. And the last year has been hard with all this. And post covid first time around I honestly don't feel myself. I just feel tired and at times still breathless at times.
I went the gp because I was dizzy. Headaches and I had an infection as I thought. Not for my annual tests as my gp wrote. And I told him that. It wasn't my fault they gave me a blood test. And another two.
I just hope he sends me copies of all my bloods. So I can decide to relax or not!!!!!!
You are legally and ethically entitled to all of your lab results. There is no "hope he sends me" - there is only "he will send me."
I would suggest a couple of things
1. Know that based that in the absence of major MPN Symptoms your treatment protocol would likely be low dose aspirin and monitor only. You can also do this entirely on your own if you so choose. Just with understanding that all options come with benefits and risks.
2. Have all of your results reviewed by an independent MPN Specialist. Getting a second opinion when there are any questions is a standard practice. It is good medicine and may well relieve your concerns.
3. Consider seeing an Integrative or Functional medicine doctor. These docs look in a more holistic fashion at what is going on in your body. perhaps there is something that has been missed which is not a MPN. These docs could also help you review options to optimize your health by properly informing you about both Western and complementary health options.
To answer the first question, yes you can relax. It really does not sound like there is any immediate threat to your health. You obviously still have questions and concerns, so make a plan to find the answers you would like to have. Knowledge is power, Feeling empowered to deal with your health issues allows you to relax and enjoy life.
Do please stay in touch and let us know what you learn on your journey.
Glad your platelets are down. Definitely get the blood test results. I’m confused I thought lymphocytes had to be above 4.00 for normal. I’ve just read your reply to Hunter. I’m appalled by his response when you requested blood results. If you go on the NHS app you will get them straight away. I definitely would consider a private blood test in a few months meanwhile get a copy of all your recent ones. Keep us posted.
Thanks wyebird. Above 4 is abnormal mine were just above for 6 mobths and bang pn 4 odd until I had covid again then went complete opposite to 0.9 so below normal. Apparently they are 3.5 now. So creeping up again. Before all this latest lot I have 12 years blood tests on doctors computer and they were 2.2. So don't know ehy they suddenly went higher than past 12 years. Infection he said. Lymphocytes are funny things was his exact words. Maybe it is infection.
And my nhs hospital don't put snything on their app. I only can access bloods from my gp through patient access.
And I would have done too hut my appointment was changed and bought forward to a telephone appointment. I did have a fave to face arranged but they changed it. I had rang for my results which they wouldn't send to me or give me over the phone.
Tried that. They sent me a link to a subject access request whereby I need send photo ID Etc. Tooo much hassle. I will just wait and hope. And if in a week I get no where I will have to sar them most likely just honestly didn't think it would be such trouble.
After ringing I've had so many different responses about my blood tests. I told the consultant that. That's when he said they didn't like giving out results because they can be misinterpreted by someone that doesn't understand them. Words to that effect.
I judt need to see all the actual blood tests. Not a letter with them written all wrong as mine was and my medication all wrong too.
My last copy letter from haematology to my gp stated I was taking a medication I certainly have never taken for blood pressure and also it gave my recent blood test results. Wbc was wrong. It said a 3 instead of an 8. Now not a huge mistake but still a mistake that made me look like I had low wbc. I know its a typo but thats why I want copies. Just for peace of mind. The actual results cannot be mistyped hopefully.
On this one "He also asked if in the last twelve months I had made any lifestyle changes" you had a really big one, at least one Covid infection in recent times. Me and Husband had it at the very start before vaxes came out, and I can say it can be life changer to get "vaxed" by infection.
You also had/have long covid, as we do. This could quite reasonably change your body in many ways. Long covid usually improves over enough time so your bloods may also get more boring as that happens.
Maybe you are right there epguy. But they have not said it. I said I was a test study for them. In fact I feel like he's made it my own fault in one way because he just kept saying infection but not what infection he meant. If he had just sympathised and shown some empathy there I wouldn't feel as I do now because at least it's something. That could explain. Perhaps I have overdosed with covid having had it and the jabs. And nothing I can do now.
I still feel drained. Still just don't feel myself and don't know if I ever will tbh. Something happened. When you mention long covid I don't think it's recognised here in the UK. No one ever mentioned it to me. And I think to generalise long covid in to one diagnosis can be dangerous. I think maybe covid damages things and some people will never recover to the person they were before. But again they would just say it would have happened regardless. Due yo your lifestyle most likely. And nothing to do with covid or our vaccines.
As I say I'm going get some private bloods done soon as the nhs have given up on me.
It hits even those with mild cases and healthy. The vaxes have rare side effects but don't cause long covid, you need to catch it to get that, I know way too well.
There are theories on it, immune dysfunction (what maladity isn't?), leftover virus, short or long term organ damage (we had that), Microclots..
Some info here, but it's less well understood than MPN so far:
Hunter. I asked for my test results but although he said he would get them sent I really doubt they will. Also just received a copy of the letter from my 29th June appointment with the pharmacist by telephone but typed up 20th July.
Its states my platelets are completely normal and that I MAY HAVE HAD COVID AS I THOUGHT ON THAT DAY. .
I DID have covid that same day. I tested positive as soon as I got home as I went very hot and my daughter did my temperature and we tested and I was positive.
I also had antibiotics 2 days later from my gp because I had a really bad chest and I didnt want yo get into the state I was in when we first locked down. My oxygen was low and he said as it was weekend he would prescribe high dose antibiotics.
So actually I had antibiotics at the time of my second blood test that was normal. Although both were only just under 400. Even with antibiotics. But my white cell was lowest its ever been.
Apparently they have not got access to my old kidney scan so he said all that we have on records are now a completely normal kidney with a couple of minute simple cysts. Not my oversized undersized kidney full of nodules that were not cysts. And that was a nephrologist who did that .
He stated that the other doctor had suggested a bmb but he said he was discharging me now so no need. He said after two tests within normal limit he could discharge. He said infections to every question is asked. But I'm annoyed because in the beginning I had said infections and was told that definitely not infections. They did blood films and crp and esr.
I got ill at lockdown with covid. And it was one thing after another. And I'm drained. I had thought covid and vaccines maybe but they said no. Also I have never had any follow scans for my cholesteatoma. Which requires follow up. Lifelong as they grow back. They never follow up with anything. And they are not interested. They havent got money for everyone. I honestly do not bother our doctors any more. I know they eventually put things down to anxiety snd you don't get listened to. I deal with things myself mostly what others would go to their gp with.
I think they are annoyed that I joined here and gained some knowledge. He said the reason we don't give out copies of blood tests is that people cannot understand them and it's not good to see them when you aren't able to explain the findings.
I am going to go private again soon for a fbc. Just for my peace of mind. He cannot stop me. All my bloods from other 2 referrals not there anymore apparently . Or any letters etc
Honestly hunter he really wasn't interested. Makes me think they just wait until they get a good result and then quickly discharge. Like times before. And then I have no chance of another referral even if I get another 600 count. Like before. Because they now say that they found nothing abnormal so no need to refer.
My counts are not too bad. I admit that and as the pharmacist says a bmb is my only way to rule it out buy she stated I asked for sedation and they will not do it. And the haematologist says he won't do it now anyway . Just how it works here. I am going to take 75mg aspirin myself gastro resistant ones.
My problems started after getting covid. I know it did something but I don't know what. Maybe time will tell. But I guarantee they will say its my lifestyle choices etc. I ate the wrong thing or did the wrong thing.
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All driver mutations negative
This is all a bit new to me..
All about me and my Myelofibrosis
Elevated platelets and feeling poorly all the time
High Red Blood counts neg. Jak2 and all mutation tests
