ET symptoms?

[ET30]

Hi all,

I’m ET JAK2+ with stable platlet counts between 500/600 and on daily aspirin only. I work full time and have been off now for a week mainly due to fatigue, feeling light headed/dizzy at times and pretty much no energy at all.

I’m struggling to get any answers as to what this may be (full bloods test came back normal other than expected platelets and I’m currently awaiting results from a thyroid test)

Wondering if this could just be symptoms of ET? I rang my clinical nurse when it first started and they referred me for same day full bloods to rule out anemia but other than that they didn’t seem concerned it was connected. Also, I was under the impression as my platelet count is relatively low compared to others that it would be unlikely for me to experience any symptoms yet?

Any thoughts or advice welcomed!

Thanks x

[fee13]

It has been a common symptom among MPN patients that even when bloods come back normal they still suffer from fatigue and light headedness. A lot of people say the fatigue is relieved by light regular exercise (I haven't been able to safely achieve this yet lol) and the essential thing is drinking lots of water. A minimum of 2 litres per day but many fare better on 3, this may help with light headedness. My platelets have never been above 600 but my symptoms have been extensive and consistent.

[JackLina]

I would agree with Fee13 below inasmuch as the lightheadedness and overbearing fatigue are concerned. My platelet levels are in your range, I am ET JAK2 and taking clopidogrel rather than aspirin, which I didn't tolerate. I tried hydroxycarbamide but couldn't tolerate that either so at present, I'm just taking clopidogrel.

I was advised by another on this site to try Doctors Best chelated Magnesium to help bring back my energy and although it has not completely remedied the feeling, I am a lot better. I could tell the difference straight away and now take it every day.

All the best

[Wyebird]

I’m afraid I can’t help you. Only a haematologist can. Even then you want one who will test you for MPNs.

Good luck

[stillkicking]

Sorry that you are struggling with fatigue and light headedness. From what I have experienced myself, and from what I have read on the forum, MPN symptoms certainly can occur when platelet counts are relatively low. (mine were mid 600s when my own strange set of symptoms were troubling enough for me to first see my GP).

Unfortunately the medical people can have very fixed ideas about what they think the symptoms of an MPN are and aren't, and it can be a challenge finding a hematologist who understands, or has any empathy. This is, after all, a fairly rare disorder!

Whilst it is quite possible that it is the MPN that is causing this, I would definitely consult a good GP and try to rule in or out various things that could be causing the symptoms. There is always the risk of labeling everything "MPN" and missing something.

Out of interest, have you been prescribed daily low dose aspirin as yet? I did find an almost instant improvement of many of the symptoms that I had when I started taking it (which did confirm for me that my problems really were related to my "sticky" platelets!)

Best Wishes,

Peter

[ET30 in reply to stillkicking]

Thanks Peter. Yes, I’m on daily aspirin at the moment. Some days I feel absolutely fine, but the last ten days have been such a struggle. I’m back with my gp this afternoon so hoping to have some further update.

[stillkicking in reply to ET30]

All the best for your GP visit. P

[ksos]

Hi:

I have counts similar to yours, am on hydroxy and aspirin and have days where I feel like I've hit a wall I'm so fatigued. I agree it's smart to see your doctor and make sure it isn't something else, but if nothing else shows up, it's likely the ET. I'm going to give the magnesium a try -- I've seen that on this site before but then forgot to follow through and try it. Good luck with your appt.

Kim

[mhos61]

Hi ET30,

Hope you’re GP appointment went well and hopefully gave you some answers.

I agree with others about no correlation between platelet count and symptoms. My platelet count was only 500 at diagnosis - but this was enough to cause fatigue and episodes of scintillating scotoma. I put these events all down to age. Fortunately for me, my ET diagnosis was picked up on a random blood test.

It’s not just about the quantity of platelets we’re producing but also the inferior quality of those platelets. If your symptoms persist and thyroid etc is ruled out it might be time to discuss with your haematologist some cytoreductive therapy. You don’t say how old you are, as this is something to take into consideration too of course.

Mary x

[ET30 in reply to mhos61]

Thanks Mary. This post has really opened my eyes to the fact other people definitely do have symptoms with similar counts which I had been under the impression since diagnosis wasn’t the case. Also, I’m 31.

All other bloods came back as normal and the doctor thinks it is anxiety/stress causing it. I have had some work/life challenges recently so it could be the case, although you’re right, letting my haematologist now about these recent symptoms is a good idea.

Thanks again all and best wishes x

[mhos61]

You’re very young, so holding off cytoreductive therapy would be preferable.

However, if these symptoms persist and are debilitating enough to affect your quality of life, then it’s something worth discussing with your haematologist. Proving it’s related to the ET is challenging though. It could well be related to the anxiety you’re experiencing. It’s amazing how anxiety can manifest in physical symptoms. I’ve experienced this too in the past.

I wish you well

Mary x