Just a quick recap and an update on my latest appointment….
I have been under the care of an Haematologist for two years now, referred by my GP for consistently high platelet counts found during routine blood tests. Platelets usually around 565, highest being 622. I have no symptoms although I do also suffer with allergies, irritable bowel syndrome, vitiligo skin condition and an under active thyroid gland.
Colonoscopy and gastroscopy all clear, Jak2, CalR and MPL negative.
During my tests it was picked up that I was iron deficient with low ferritin results. Not anaemic though. Since being on iron tablets my platelets have come down to 484, the lowest whilst all of this has been going on…
My Haemo is no longer interested in carrying out a bone marrow biopsy unless, in her words, “your platelets ever go above 650 and remain so”. She strongly believes my case to be Reactive as she says my count is coming down over two years and not increasing which is usually the pattern with ET.
I’m happy with continuing to be monitored every 3 months but I am conscious that my platelet count is still above the magic 450 number even though my ferritin has now been rectified? So I do have a little niggle of “what if I am a triple negative case and it is being overlooked?
I suppose time will tell with more results but I am wondering if anyone else has had their iron levels rectified and if so how long did it take for their platelet counts to follow suit and go back within normal range?
I think there may also be a possibility that maybe an under active thyroid and vitiligo could possibly be playing a part as both are classed as auto-immune conditions yet I can find no literature of them being implicated with platelet counts? Maybe the inflammation from Irritable Bowel Syndrome may also be contributing?
I have found, for me, the not knowing, guess-work and uncertainty of everything to be the worst part of this journey and unfortunately it seems that it’s very common for the diagnosis of ET and other MPN’s (or the ruling out of them) to not always be obvious and clear cut…..x
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Purdy13
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The iron deficiency and IBS inflammation would certainly be expected to cause some level of reactive thrombocytosis. If you are someone who naturally runs on the high side of PLT levels, as some do, them a trigger could push you over the 450 mark.
I would note that when my iron levels became quite low for a practacted period of time due to venesections, my PLT increased by 200K. They came back down when I started on Pegasys and improved my iron levels (though diet only).
Your case is rather complex. It seems prudent to be conservative regarding additional treatment. You are correct that ET can be a diagnosis of exclusion. It will take some time and careful watching to sort this out. Unfortunately "watch and wait" is actually "watch and worry" in many cases.
In this situation, I would consider focussing on reducing/eliminating all of the potential triggers for reactive thrombocytosis. The IBS seems like a natural next target. That need to be dealt with anyway. It is a miserable condition.
Thank you hunter5582 for your wise words. The food elimination diet is well under way with regards to targeting my IBS symptoms and for the time being I’m to continue with iron tablets…. I’m also focusing on a little weight loss, excercise and reducing stress levels as maybe all of those can also play a part too. Regardless of whether I end up being a “Reactive” case or a “Triple negative case” my big goal to work towards is now reducing anxiety about the whole situation and after 2 years I feel as though I am now beginning to turn things around in that department…. Thank you again….
I too have had to deal with IBS for most of my adult life - now 76 - until, through the process of elimination, I determined I was lactose intolerant. (Not one of the gastroenterologists I went to ever brought this up - they were just quick to call for a billable procedure - endoscopy, colonoscopy, etc). I strongly suggest you work on the "food elimination" plan. Wishing you success.
Good luck to you as you navigate your health system.
Do you have an MPN Specialist to advise your treatment? They have more knowledge on the ins and outs of this crazy cancer so look to get their expertise if possible. Especially with you already experiencing thyroid issues, this will limit your treatment options.
Thank you for your advice, I haven’t yet been diagnosed with an MPN though, my Haematologist doesn’t seem to think I have one with the tests she’s done so far, but I am being monitored as platelets are higher than the norm…. Hopefully time and more tests if necessary will give a definite diagnosis…..
You and I have corresponded previously. I understand your frustration as I’m in a similar boat but did have a BMB in 2019. I was sent back on this assessment merry go round when my platelets were at 500 in June.
Why does your Dr not want to do a BMB? I know in the UK it’s different with NHS. Our system is a mess but it’s easier to get tests if you have good insurance, which I am fortunate to have. I have seen a few hematologists and I feel like all would have done a BMB on you by now. Can you see a different Dr even if not an MPN specialist?
My feeling is I do want to know if I have something so I can be monitored closely, see a specialist and do any interventions that may help, even something like taking aspirin which I’ve been told isn’t recommended for me.
I actually did just get so frustrated with the lack of conclusiveness that I reached out to one of the MPN specialists that seems pretty well known and traveled a few hours to see them. He thinks I probably don’t have an MPN at this point but ran a lot of tests, is rereading my BMB slides, etc. and I’m waiting for results.
Unfortunately my bloodwork already showed a completely unrelated elevation with my liver markers I’ve never had before at all and now I have to figure that out (just had Covid so hope it’s that…)
But I’ll report back here on the MPN assessment for you and anyone else in the future on this board because of a similar situation. I was sorry I hadn’t gone to see a specialist years ago. I had reached out to Hopkins early in and was told they wouldn’t see me w/o a diagnosis so I just assumed that would be the case with all the specialists, but it was not.
Adding that I also lost 20 lbs since June and was hoping that was the key to this whole thing (I carry all weight in the belly which is the worst health wise). I thought maybe it was doing something because in Sept my platelets were down to 380, first time below 400 in 5 years, but the other day they were 430 again so who knows. But being a healthy weight is obviously a good idea for many reasons and cardiovascular health regardless of whether you have an MPN so good luck! My WBC is always a little high also, 11 the other day. I wonder if it’s anxiety…
The specialist really didn’t think my platelets in the 400-450 range were all that much of a thing. That kind of blew me away because my internist has seemed very alarmed about them which I think has influenced my thinking. In fact, the Dr shared that their platelets are typically around 430!!!
Hi Labbymom, my Haematologist seems to think that my case could be Reactive Thrombocytosis rather than ET due to my platelets lowering since I’ve been on iron tablets (iron deficiency can cause high platelet counts). She has been monitoring me for two years and although I’m still over the 450 mark my platelets have come down in that time rather than increase. Also I am negative for Jak2, CalR, MPL. She said that she’s not concerned at present and would rather not put me through a BMB due to it being an invasive procedure that she doesn’t feel is necessary at this stage. She wants to see if my platelets continue to come down to a normal level. She said she will consider carrying out one if ever they go over 650 and remain so. I am happy to trust her judgement for now and see how this works out in time….
I must say though that I feel for you as you have already been through this procedure once with all the tests and now it looks like you are having to do it again. It’s worrying to think that everytime platelets spike the whole procedure could start again….. I do think different Specialists have different ways of thinking etc and in a way I’m glad that mine has given the 650 limit mark. She is aware that platelets can fluctuate so seems to be looking more for the overall trend of numbers rather than acting upon each individual blood test results…
There is still a possibility that I could be triple negative ET and she is also aware of that too hence her closely monitoring me, but for now I think she’s waiting to see if my platelets go back to normal with more iron treatment and hopefully rectifying other reactive causes such as my IBS….
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