Hi All, I need some advice. I have just had blood tests for an MPN ET, in particular after having raised platelets only 522 so not that bad compared to you guys, plus raised white blood cells. The Haematologist said as the tests came back negative that the blood issues are reactive rather than essential.
I have been so tired lately, have red hot hands and feet that have a random pricking sensation, blurred vision, have a permanent gland up behind my ear. The Haem doctor said that I am just Menopausal as I am 48 which was a bit annoying as didn't really put any of the above down to that.
I told him I had psoriasis and straight away he said that would cause the blood being out of sorts.
Has anyone heard of this causing raised platelets before as I felt he was very dismissive. He said the bone marrow being a problem would be picked up by the blood tests and as they were negative then my bone marrow is fine thus not an MPN?
Has anyone heard of the psoriasis thing causing blood problems as the association for psoriasis don't have any info on it that I can find.
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vickyturff
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I'm sorry I can't answer your question on psoriasis affecting platelets.
If you have been told that your 'blood issues' are considered reactive, I would have thought it would make sense for the GP/haematologist to follow this up further to confirm what is causing this reaction.
Thank you I think I will do that as I don't feel happy. I am trying to clear the psoriasis with sunbathing which I hate as I don't tolerate heat very well but its the only effective way to get rid of it.
Thank you for your reply. The doctor said that they don't have to do a bone marrow biopsy to see it you have an MPN as the blood test for ET was negative?
Do you know if bloods can be negative but you still have an MPN?
Sorry about your diagnosis and good luck with your treatment!
That's interesting. I think I need a second opinion as you say, Thank you for your response.
Its very bewildering. It seems so strange that the doctor would say they don't need to to BMB's anymore. I think he couldn't get rid of me quick enough.
Hi, don't know if this is any help but my consultant told me the only sure way to find what's going on is a bone marrow biopsy which was done the first day I saw him. I think I'd ask for a second opinion from an MPN specialist. Good luck, Frances
I don't want to end up getting worse due to not being treated if that is needed. If I can clear the skin then get another blood test in theory it should be normal if the doctor is correct.
None of us here are really qualified to provide a 'virtual diagnosis' of your condition...
... However, I was originally dianosed w/ ET, and I had suffered terribly for many years w/ a condition that was originally called – Psoriasis, but later turned out to be another condition, more related to having an MPN:
There is not really a blood test for ET. There are numerous blood tests that can be ordered to help a doctor with the diagnosis but there is not an ET blood test.
Your doctor seems to be referring to tests for the common genetic mutations (request copies of all testing and results so you know what has and has not been checked). Not everyone with an MPN has the common mutations. Further, the presence of a mutation alone cannot confirm a diagnosis.
I have been chasing down a diagnosis for almost a year since I was informed my platelets were high. They'd already been high 10 years at least and I had never been informed in spite of many doctor appointments complaining of fatigue and other symptoms.
Anyhow, I have tested negative for the common mutations as well as negative for a whole panel of less common mutations. My regular doctor and the MPN specialist I saw both still believe I have ET because of all the testing we've done to rule out secondary causes and due to the length of time. They can't diagnose me because I don't yet meet the WHO criteria.
If your doctor believes you are secondary there should be some follow up. Either way, a second opinion never hurts!
I would request copies of all your lab work. This is not a common disease and if you do have it you will probably want to learn more to advocate for your best care.
Thank you for your reply. I see it may be an uphill battle I guess. I will ask for the lab work and see what that comes back with. The Haematologist couldn't get me out of the door quick enough, after stressing for weeks thinking the worst!
I wouldn't be so bothered and just take his word for it, but like you have symptoms that are frustrating and debilitating.
I need to do some more digging to see what I can find out.
I am no Doctor, but there are other mutations and some have triple negative for the current tested mutations but there are a lot of other mutations they are just finding out about. A Bone Biopsy is the only way to tell if you have an MPN, I'm not sure about psoriasis raising your platelets but if I were you I would find a specialist especially with the symptoms you have. I have red hands and feet, it is another issue but is usually caused by an MPN. Best if luck Mickey
My dad has psoriasis and he has never had raised platelets. Sounds to me as your GP s fobbing you off. Don't put up with it. Insist on further tests if you are not happy. Good luck
Thank you for your reply and about your dad. I think you are right. Its weird that psoriasis is not a rare condition yet I cannot find any link between it and platelets. The psoriasis organisation have no information. One would assume there would be loads of incidences as its a common condition.
Hi Vicky, this post might help you regarding BMBs to diagnose MPNs. I will see what I can find out for you about psoriasis and raised blood counts. Best wishes, Maz
Thank you for asking. That is very kind of you. The funny thing is the doctor didn't even ask to see my psoriasis to ascertain if it was severe or not as its covered by clothing.
My skin will clear now due to sun, so I will get a blood test when there is no flare up.
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