Feeling stressed

[September61]

Had bloodwork done on Monday. Results show platelet level at 609. Everything else was within range. Saw my GP on Wednesday for repeat blood work. Platelet count jumped to 690 and WBC increased slightly. He is referring me to a hemotologist. Everything I read points to cancer and is giving me extreme anxiety! What else could explain these numbers?

[rebeccaxxx]

Any kind of systemic infection, some kind of arthritis maybe? Low iron always needs to be ruled out as well, that’s all I am an remember being tested for. Two days is t really far enough apart for a repeat. Have you been referred to a haematologist? Are you in the uk? If it is an MPN you can live a normal life span with minimal treatment. Better to catch it now before you have a stroke is how I try to view it. Have you any symptoms?

[September61 in reply to rebeccaxxx]

Thanks for your reply rebeccaxxx. The only complaint I have is hip pain that I’ve had for years and was told it was bursitis. I deal with insomnia, and have been extremely stressed just dealing with life and taking care of aging parents and everything else life throws at you unexpectedly! Now on top of everything else, I fear what the prognosis will be. I don’t want to blow this off to stress but I have absolutely no other physical symptoms that concern me I have an appointment with a haematologist next week. This forum calms me down, grateful for my new friends!

[rebeccaxxx in reply to September61]

Good luck for your appointment, hopefully you will get a reassuring explanation. It’s good that you are asymptomatic I think, as it makes it less likely that it is something really serious, and of course, you are feeling well otherwise.

[September61 in reply to rebeccaxxx]

Thank you so much😔. I really appreciate your kind words and support.

[PrinceA]

Hello September61.. welcome to this forum. I know exactly what you feel. I've been going through this since September when my blood counts showed elevation in platelets and RBCs. I know that iron deficiency would cause elevation in platelets as rebeccaxxx mentioned, also the WBC could be simply an infection but I think the hematologist will look at the bigger picture, like how much it is elevated , what type of WBC showing elevation, I know each one of the types have different kind of meaning. There alot of more experienced people on this forum hopefully they can provide better explanation. Good luck.

[September61 in reply to PrinceA]

Hello PrinceA

Sorry to hear that you are going through this as well and thanks for your reply. My iron levels were good and WBC only slightly out of range. I will try not to google overdose and stay calm. Easier said than done

Were you diagnosed?

[PrinceA in reply to September61]

Hello September61, I'm positive for Jak2 mutation, so I have MPN but dont know yet what type of MPN. I'm seeing MPN specialist and most likely will request BMB for accurate diagnosis.

[hunter5582]

Welcome to the forum. Glad you found your way here. We have all been in your shoes, hearing you may have a form of blood cancer, but not sure what is going on. For some reason you are experiencing thrombocytosis. Not the work begins to determine whether this is primary (essential) or secondary thrombocytosis. The first step will be to do some additional blood work to look for conditions that could cause secondary thrombocytosis as well as to determine whether you have a driver mutation for a MPN (JAK2, CALR, MPL). JAK2 is the most common. Many docs will start just by checking for this. You should have an answer within a few weeks of getting the diagnostics done.

I was diagnosed with ET about 30 years ago. It progressed to PV about 7 years ago. I have had a rich life and at age 65 continue to do so. It is a truism that if you have ET, you are more likely to die with it than from it. There can certainly be issues and challenges, but they can often be managed. Treatment options have improved and there are very promising options in development. In the absence of falling into a high-risk group, chances are that your treatment would be aspirin and monitor if the diagnosis is ET.

Do be aware that your platelet levels are not that high. Some with ET have platelet levels over 1 million . I cycled between 500 - 700 for most of the 30 years. Recently I have cycled between 700 - 900. I have never had a single incident of thrombosis. There is no linear relationship between your platelet level and risk of thrombosis. It is more complex than that. We are each different in how our MPNs present. Do know that if you do in fact have a MPN, you will have plenty of time to learn about all this.

Please stay in touch as your journey unfolds. This forum is a great place to get support and information from a patient perspective. Do let us know what you find out once the diagnostics are done.

[Hidden]

Hi,

As you must have read, an MPN diagnosis is one of exclusion. When I first spoke to a hematologist, I had a platelet count of 580k. She told me to have a complete blood count (CBC) two weeks later and also check my iron levels and my CRP (for infection). I was also checked for solid tumors (cancer markers). Once all these came back negative, I eventually had a bone marrow biopsy and got checked for fibrotic changes and mutations. The combination of high platelets (over 450k) in two consequent tests with a JAK2 positive result, led to my diagnosis of ET.

So yes, there are other things that can cause an increase in platelets. I am no expert but by looking in my records, I see that I had the highest readings when I was very stressed. My current hematologist says that stress is an aggravating factor but not a causative factor. In fact he agreed that I was treated for anxiety following diagnosis.

To cut a long story short, although it is normal to focus on the worst case scenario, you will have to exclude other things first and try to keep anxiety under control (easier said than done, when your mind is focused on the "C" word). You can be asymptomatic because you have a condition at a very early stage, or because your condition does not cause noticeable symptoms or (of course) if you are generally healthy and you're simply dealing with a minor issue.

If it turns out to be an MPN, you will have time to "worry" then. I lived in ignorance, with my elevated platelets, for 9 years and not knowing what it was all about was certainly better.

[September61]

Thank you all so very much for taking the time to respond. I am so grateful to have found this forum. I have a very large family and many friends but dont want to worry anyone unnecessarily. I have always been the care taker, supporter and problem fixer for everyone and knowing that now, I might have a problem is overwhelming!

I am 59, good health, and very active. Looking back at labs through the years, my platelet level has always been on the high end but within range. I don’t handle stress well and like I said in an earlier post, suffer from insomnia but am so wired during the day that I’m just a big ball of nervous energy! I am currently on no meds and rarely even take anything to help me sleep. My doc gave me a prescription for a sleep aid and I finally had a good nights rest.

My primary physician is also a personal friend and in fact lives next door. I am confident that together we will find answers.

My best to all of you❤️

[hunter5582 in reply to September61]

Insomnia is something you hear a lot about from people with MPNs. Part of it is certainly stress related, but there is some evidence that it may be more. Deregulation of the JAK-STAT pathway causes the overproduction of inflammatory cytokines. This can apparently cause insomnia amongst other things. Chronic insomnia is quite devastating to your physical and mental health. I know from personal experience over several decades.

It is always best to start dealing with insomnia with practicing good sleep hygiene. CBT for insomnia can also be very effective for some. If those interventions do not work, then there are times when a sleep aid is appropriate. Unfortunately, many sleep aids (e.g. Ambien) will knock you out, but disrupt sleep architecture and do not permit restorative sleep. Some people find Trazadone to be effective, though I did not. What I did find highly effective as a relatively new sleep medication called Belsomra (suvorexant). It works differently, reducing the amount of orexin (the stay awake chemical) in your brain. It allows natural restorative sleep. It has been a Godsend for me. I would note that I generally do not believe in long-term use of sleep aids; however, sometimes they are necessary.

It is really great that you have a good relationship with a PCP. That doc is going to be a critical part of your care team. The various specialists we see can be great, but they tend to have a narrow focus. a great PCP can help key an eye on the bigger picture and tret you in a more holistic fashion.

All the best.

[JaK2ET]

Welcome to the forum! You may be interested in my experience, which has some parallels with yours ...

By late 2018 I had been feeling well below par for some time. I assumed that this was the result of the stresses involved in helping my elderly parents in their declining years, made worse by lack of sleep and my lack of aptitude for the "caring" role. (My mother, who'd had dementia, had died in early 2017 and I had not really had time or space to deal properly with losing her. My father, who'd had a stroke back in 2008, was still alive but getting worse. We had some help from professional carers and my siblings joined us from time to time.)

Unlike you I did have some physical symptoms (as well as bouts of crushing fatigue), particularly some distressing ones relating to legs and feet; I also had mental health problems that were worse than usual for me.

The breakthrough came when a kind lady from the local NHS Carers' Health Team took some blood from me and delivered it for testing. She rang me first thing next morning, saying that there were two findings of note: my platelets were higher than they should be (around 700, if I remember rightly), so I should make an appointment with my GP at once; and my Vitamin D level was lower than it should be, so I should buy Vit D tablets from the chemist or pharmacy. (I think I started doing some reading online and found mention of a study suggesting that insufficient Vit D could itself be associated with raised platelets.)

My platelets were tested again and remained high, so I was referred to the haematologist, whom I saw for the first time in Feb 2019. The diagnosis was a bit of a shock: I had Essential Thrombocythaemia (ET) with the Janus Kinase 2 (JaK2) mutation - neither of which I had ever heard of before. The haematologist gave me an informative book about ET (and the other myeloproliferative neoplasms or MPNs) prepared by the UK charity then called BloodWise (though I think the name has since been changed to Blood Cancer UK).

As I was then still (just) under 60, I was prescribed low-dose Aspirin (anti-coagulant and anti-inflammatory but not able to reduce the platelet count), together with other medication to reduce the risk of GI damage from the Aspirin. My blood was monitored regularly and the platelet count fluctuated but the trend over the year 2019 was upwards; by late 2019/early 2020 the platelets were around the 800 - 900 level. In Feb 2020 they spiked to over 1000 when I had a nasty infection (CoViD19 ???). Already in late Jan the haematologist had added cytoreductive chemotherapy to my treatment, in the form of Hydroxycarbamide (Hydroxyurea). Although more prepared for this by my reading, it was still quite a step to start taking a toxic chemical in order to bring the platelets down to the normal level.

Of course my diagnosis may not be relevant to you. Everything will depend on the results of your further blood tests and analysis. If you do turn out to have ET, it may be of some help for me to say that, after just over a year of the chemotherapy (which is considered "mild" compared to the treatments used for some other blood cancers), my platelets have come down to within the normal range and I am feeling significantly better. Other treatment options are available too.

Keep posting on this forum as things unfold. There is nearly always someone with relevant experience or knowledge who can offer a supporting response.

Good luck!

[September61 in reply to JaK2ET]

Thank you so much for sharing your experience and kind support. I keep telling myself to stay calm but because I don’t think that I have any underlying conditions, I fear that a blood disorder will be the diagnosis. I read that over 90% of the time, it is reactive and not primary. I’ve never heard of this disease. How common is it?

[Hidden in reply to September61]

If I may, please allow me to say something with regards to your approach.

In fact, reactive thrombocytosis (i.e. one caused by another underlying condition, is certainly more common like you say. At the same time, it can be as serious, as this underlying condition.

It can be the result of something harmless and easily curable, in which case it will go away when the underlying condition is treated. It can be a random, temporary spike, or (rarely) it can be caused by something more sinister, like HIV or certain tumors.

An MPN on the other hand is a blood cancer, nevertheless it is generally seen as a more "benign" type, with ET, perhaps the "mildest" form, allowing for a normal (or nearly normal, depending on the research) lifespan. It is a cancer though, so there's the question of symptoms which can vary from nothing to severe. There's also the likelihood of progression to something more serious. Not common but possible. So you will have to deal with the mental impact of uncertainty.

MPNs are rare disorders, with an average occurrence of 1-2 cases per 100,000 if I am not mistaken.

If you ask me, it is like being between a rock and a hard place. On one hand, you can have anything, from nothing to life threatening. On the other, something usually benign, that could turn into something life threatening.

Not that we're given the choice but even if we could choose, it would be a tough call.

All I can wish you, is that you are with the majority of people whose "imbalance" is usually temporary and highly treatable. All the best!!