DIFFERENT LABS DIFFERENT RESULTS!

is this possible? From having stable platlets around the 700,000 mark for about 5 years. In just under 3months jump to 924,000!! I was shocked to say the least. I did use a different laboratory this time and have been highly stressed about my partner who had been very unwell for the passed few weeks. He is now on the mend! They only resean i had this test is the Haematolgist wanted a Tryplase test. She thought my psoriasis was a rash caused by mast cells. I have had psoriasis for may years. Just waiting for resuts of this test. I know now I made a mistake having my bloods when I was so stressed!!! Thanks for your help Lyn NZ. Ps I have ET. CALR.

[stillkicking]

Hi Lindiloo,

Sorry to read that you have been going through a stressful time with your partner being unwell, but pleased to read that he is now on the mend.

Regarding the jump in platelets, my platelets were never stable like yours, but certainly were able to climb at the rate that yours did in their 3 month "jump".

I have monthly blood tests (sometimes more frequent), and I don't think my state of mind has had much influence on the results... There have been times when I have felt awful and the tests have not reflected this, and there have been other times when everything felt reasonably good.. and the numbers went up in unwelcome ways!

What is good is that your haematologist is keeping an eye on things and did do tests because of the psoriasis, even though this has been something you have had for years.

Very Kind thoughts to you all the way from the South of the South Island!

[Hidden in reply to stillkicking]

Thank you for your reply, nice someone from NZ. I know my platelets were this high 4years ago, again very stressed over other love ones!!! I am so sensitive!,and tend to be a worrier. I am now going to get on with positive thoughts, get back to work, and wait for my next bloods in December. I have a new young GP, appears to be really onto MPN. Actually the Haematolgist i am not impressed with so are looking to change.

[stillkicking in reply to Hidden]

Hi Lindiloo,

I wonder if it would be worth asking your GP if you could arrange for a monthly Full Blood Count so there could be a more finely tuned record of your blood's ups and downs? Quarterly tests do seem rather far apart to me, especially if things have spiked upward recently. In some respects it could be less stressful for you having the more regular monitoring then being surprised by a big jump.

It is nice for me to be in touch with someone from NZ too! I do feel a bit isolated down here sometimes (and today we feel very close to Antarctica as there is a strong rather chilly wind blowing... I almost expect to see penguins walking around outside in the garden!).

Mmmm.. I also seem to have a better relationship with my GP than with my Haematologist which is unfortunate....

All the Best

[fee13]

Hi from NZ also. I had done a little research on what affects platelet counts. Simple things like even getting up in the morning & opening curtains, increase over the course of the day, after exercise, stress & infection, how the test was handled, all raise platelets. Everyone would respond differently. As stillkicking says it's a bonus having the other tests done, it would be good to know. Just relax & see how the retest goes, I know, easier said than done

[Hidden in reply to fee13]

Yes Fee I am determined to relax with mindfulness and meditation. I find deep breathing works wonders. I used this last time I got highly stressed and it worked very well. My platelet count dropped from 960 to 601!! Can't remember how long it actually took. So I am working on it!

[katiewalsh]

Hi. Easy to understand why you panicked but as mentioned earlier, many things can affect your lab results. Most importantly is that these were done by a different lab. Also, how well hydrated you are will affect the numbers of platelets. It’s like reducing a sauce in a pan. As liquid cooks off the sauce becomes more dense. I encourage yu to ask your doctor if they can be checked again soon & get them done at your usual lab. Good for you to have asked about this. Take care! Katie

[Hidden in reply to katiewalsh]

Indeed Katie, I had not drank much on this particular day. I am still very annoyed with myself for having my bloods taken on this particular day. Not thinking!!! To worried about my partner. I will definitely go back to the other local lab next time. I want to carm this anxiety down before my next test. Thank you for your reply. Lyn

[katiewalsh in reply to Hidden]

Apparently from what Hunter writes, anxiety can affect some people’s labs. Personally I’ve never heard or experienced this. Just try & be calm for the sake of your health. Maybe some relaxation exercises, listening to relaxing music, walks in nature, whatever will work for you. Take care.

[Hidden in reply to katiewalsh]

Yes i certainly believe in all you say, and are doing all you have mentioned. I am quite confident I will come right and so will my platelets.

[Hidden in reply to katiewalsh]

Katie I also wanted to mention, I agree with Hunter that stress/anxiety certainly does change your levels. I still believe originally when diagnosed with ET i was feeling the way I am now.

[hunter5582 in reply to Hidden]

Saw your note about meditation and mindfulness. There are very good reasons to pursue this for both physical health and mental health. I practice Qigong daily. There are many forms, including what most folks call Tai Chi. There is much more to it than this one form. There are seated, standing, and moving forms. It really does help. I hope you find a meditative practice that works for you. Even if it does not change your platelet levels you will definitely feel better. It makes a big difference for me.

[Hidden in reply to hunter5582]

I have just received my Tryptase results back, and yes it is elevated!! 16.1, normal 11.4, Not sure if psoriasis causes produces MAST Cells too as well as MPN? Yes i do go to Tai Chi, and really enjoy it, also I attend Aqua fit at the local Pool.

[hunter5582 in reply to Hidden]

I think it may be the other way around.

"A mast cell (also known as a mastocyte or a labrocyte) is a migrant cell of connective tissue that contains many granules rich in histamine and heparin. Specifically, it is a type of granulocyte derived from the myeloid stem cell that is a part of the immune and neuroimmune systems." Wikipedia

"Tryptase is an enzyme that is released, along with histamine and other chemicals, from mast cells when they are activated as part of a normal immune response as well as in allergic (hypersensitivity) responses." labtestonline.org

"Some evidence shows that mast cells in MPNs are functionally abnormal. For example, one study (Ishii, T et al. Blood 2009) showed that mast cells from MPN patients release significantly more histamine, leukotrienes, and IL-31 (all mediators of the allergic response) than normal mast cells." pvreporter.com

I would think that the MPN may create abnormalities in Mast cell function that is what causes the psoriasis, or at least makes it worse. Thanks for bringing this up. It is a chance to learn more myself. I experience eczema and have always thought the JAK2 mutation was involved. This points towards a mechanism I want to understand better. I am not sure this really explains what is going on, but it does make some sense. More to learn!

[hunter5582 in reply to Hidden]

Glad to hear you found Tai Chi (aka Tai Qi Quan). It is only one of the Qigong forms. Something else I would recommend is the Six Healing Sounds. It is a seated or standing meditative form. Very easy to learn and very helpful, particularly right before you go to sleep. There is a great book/DVD on this as well as plenty of info online. Your Tai Chi instructor (Sifu) may be familiar with it.

There is also this book that you may be able to find where you are.

amazon.com/gp/product/15947... .

[hunter5582]

While we all have unique presentations of MPNs, it is pretty common for stress to affect platelet levels. So can bleeding, infection, injury, and illness. The biochemistry is rather complex, but these factors can vary platelet count by as much as 100K in one day. Single reads above your own baseline level are not a concern. It is the trend over time that matters.

Note that you also have psoriasis. Might be worth talking to a MPN Specialist about the role that the JAK-STAT pathway has in the production of inflammatory cytokines. The CALR mutation interacts JAK-STAT activity and does more than increase hematopoiesis.

All the best.

[Hidden in reply to hunter5582]

Unfortunately we do not have MPN specialists in NZ, my new Haematolgist i don't have much confidence in at all. I have asked my new GP to see someone else. Interesting about your comment about my psoriasis. I guess on the scheme of things it is fairly mild. I know this because my mum had it which was classed as severe. She developed psoriatic arthritis. Yes i have been stable for many years. But as i mentioned my anxiety has raised its ugly head and I feel if I can just get this under control again maybe the counts will decrease. Here's hoping. Thank you. I all ways enjoy reading your posts. So much knowledge! Lyn x

[hunter5582 in reply to Hidden]

Glad to hear you are switching hematologists if you feel the current one is not suitable. It is your choice after all. Perhaps you can find one based out of a University hospital. Sometimes they are more up-to-date of treatment options. My current arrangement works well. I have a local hematologist who is a wonderful doctor, but not a MPN expert (by his own definition). I consult periodically with a MPN Specialist based out of the MPN Clinic at Johns Hopkins Hospital (about 2 hours away). The MPN-doc advises me and my treating doc on my MPN care. This arrangement works well.

FYI - I also had a recent unexplained platelet spike up to 903K. This was just a few days before a scheduled surgery, so it was a concern. A few days later, the count was back down to 756K. I usually hover between the low 500s to low 700s - averaging in the 600s. There does seem to be a bit of a spike in RBCs and indication of silent migraine activity that is new. We are rechecking my JAK2 mutant allele burden and running a Myeloid Panel to see if there is any evidence of disease progression. I also just had a cytokine panel sent in to the lab by my Integrative Medicine doc. While this is not standard medical practice, I want to see if there are objective markers for the systemic inflammation I experience.

All the best to you

[Hidden in reply to hunter5582]

Hunter just changing subjects here. Do you know much about the Shingles vaccine? I have been offered it but have read on a face book page for MPN that we should not have it. I actually had a mild dose of shingles last year. Thanks a mil. Lyn

[hunter5582 in reply to Hidden]

I have never heard anything about having a ET/PV having any impact on getting vaccines since our immune systems are generally intact. Someone with MF or who has had a splenectomy would have specific needs I think. Definitely can be issues if you take hydroxyurea - can't use live vaccines. Like many things, I think vaccination is an individual choice. Risk the vaccine side effects vs the risk of contracting the disease. I had the old shingles vaccine. At some point, I will get the newer Shingrex. I just had my update DPT and pneumonia and will get this year's flu soon. I do prefer to space vaccines out. No reason to push my lick re, side effects,

I did find this commentary. I am sure there are more out there,

patientpower.info/myeloprol...

[Pte82]

Lindiloo3, have you investigated the cause of your psoriasis as an inbalance in the gut? Look into incorporating fermented foods in your diet as well as probiotics after you research the the gut connection and the correct probiotics to use as many on the shelf won't help you. Always consult with your health care professional before suing any supplemen.

[Hidden in reply to Pte82]

I have also developed reflux and have been wondering if what you say about fermented foods and probiotics would help me? Trying to watch what I eat too.

[Pte82 in reply to Hidden]

Do a search on "fermented food and reflux" to research the subject. In the event you don't experience relief, consult your gastroenterologist. Here is a sample link:

howtotreatheartburn.com/lac...

[Hidden]

I have just started reading about fermented foods and the role of probiotics. Interesting to link that to my psoriasis. As mentioned it is pretty mild, comes and goes. I use a steroid cream which seams to help. And of course good old sunshine works very well.

[Mostew]

Oh I know how you feel . My dear sweet man was very ill with E. coli for 6 months .

Every day I was looking to see if he was breathing . More hard because he kept picking up for a few days then fading away again .

What with what’s going on in the world , me having MPN diagnosed a year ago etc meditation is such a blessing . That’s the one thing I never miss a day of .. ( oh and breathing ) !!!!! Not the excercise kind ( joke ) !!!

So glad your man is on mend and mine better. We can concentrate on ourselves more .... your right it’s hard being so sensitive. It was like his illness was mine !!!!

Xxx

[Hidden]

So true, very thing you say. I am sure i will improve once again, i have done it once I will do it again!! Meditation is wonderful. I have an app on my phone called CALM, it certainly helps to calm anxiety. xx

[Handysmurf]

You might also check for infections - I had walking pneumonia - earlier this year - had no idea I had pneumonia until I had a CT Scan to check for blood clots. That shot my platelets up 300 above normal - but as others have commented it's also about trend and not single snapshot sampling. Sorry to hear there are no MPN specialists in NZ. I guess population wise it is fairly small - although a very beautiful country.

[katiewalsh in reply to Handysmurf]

Hi we’re you put on steroids? I know from my doctor that when I’ve had respiratory infections it’s the steroids I take that cause the shift in platelets. Katie

[Handysmurf in reply to katiewalsh]

Katie, not to clear up the pneumonia - I was put on a course of strong antibiotics. But this year I have had five different prescriptions of steroids prior to the pneumonia diagnosis - mostly for movement issues related to trapped nerves. After April everything cleared up - I worked hard to get my health back and have been healthy since.

[katiewalsh]

Ouch, you’ve had a rough time. Do you mind my asking if by any chance have Parkinson’s it MS? Glad to know you’re better. Katie