apologies, I have posted this under another thread but just felt I had to reach out for advice:
I’ve been suffering from an iron deficiency anemia since 2021. Since then my platelets have almost normalised (ET). I haven’t seen a consultant since the start of Covid. It’s always been phone appointments. I was referred to have a second bone marrow done and attended a clinic yesterday — a junior doctor proclaimed I didn’t have an MPN, when I asked “so I don’t have ET” he then said oh you do. He was insistent that I go for scopes (no gastro issues ever) to find out why I’m anaemic. I’ve also been told to stop my aspirin (I have previously been on Interferon and hydroxycarbamide). According to him it’s because my platelet levels are “normal” (485) and I should be ok (I did say concerns for a clot). I’m now getting an Iron IV (which I am pleased about) - but really worried that I’m suddenly off something that I’ve been on for a very long time. I’ve actually reached out to Mark Drummond for a private consultation.
Does this sound fishy to anyone? I’m not a medical expert and certainly not a google warrior with these things. Just really concerned about not being on my aspirin anymore.
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The private consultation sounds sensible even if just giving you answers for peace of mind (presumably the junior doctor was a haematologist though?). I can understand why you’d be uncomfortable coming off all meds without a clear explanation of why you no longer need them.
I have PV rather than ET but my understanding is that aspirin affects how platelets behave (whether they stick together) rather than the number of them and that thrombosis links to other counts as well as platelets.
I presume he was haematology but didn’t seem to be very knowledgeable. 😬 I assumed the same thing with the counts it wasn’t the number. Thanks so much for the reply!
That does not sound quite right to me. If you have ET then by definition you have a MPN. If you are JAK2 positive than having your PLT slightly high at 485 does no mean that you could not experience thrombosis. It is more complicated than that. There is no linear relationship between the number of platelets and risk of thrombosis. It is more about how the platelets behave than how many of them there are in regard to thrombosis risk.
Note that ET can also put you at higher risk for hemorrhage. Here, there is a linear l;relationship to PLT levels and risk of hemorrhage. The higher the PLTs, the higher the risk of bleeding/bruising. I used to experience this when my PLTs got up around 800 (and was on aspirin). It is not an issue for me not that my PLT<400.
The iron deficiency does need to be properly assessed. Do note that iron deficiency and anemia are not the same thing. Iron deficiency = too little iron. Anemia = deficiency in RBC/HGB. In the context of having ET or any MPN this does need to be explored and treated properly. It is an important part of your overall MPN profile. I am wondering if the doctor discussed doing an occult fecal blood test. This non-invasive test is a widely used first step when GI bleed is suspected.
Regarding the aspirin, that is a judgment call. If the doctor suspects an occult GI bleed you may in fact need to discontinue the aspirin. GI bleeding is an intrinsic risk with aspirin. The risk of excessive bleeding is higher at age > 60. This used to happen to me when my PLT were near 800 and I was taking aspirin. I had significant excessive bleeding/bruising. My MPN Specialist took me off the aspirin, saying "You really do not want to get a brain bleed." Two weeks later, I was diagnosed with a brain tumor that had bled internally. Oops! I went off the asiring for about a year but resumed when I started to experience erythromelalgia. The aspirin solved the problem immediately. I started by taking 1/2 of a 81mg chewable aspirin but later upped the dose back to 81mg. Note that this decision was made in consultation with a MPN Specialist who knew ny case well. This decision was about weighing the risks and benefits of the choice in my specific case. This was not blindly following a protocol.
Your plan to reach out to Dr. Drummond is a sound step to take. You need MPN expert consultation that you can trust in order to make good decisions.
Please let us know what you learn and decide to do next.
Wow, thanks for the informative response. Some really good points in this.
I’m not sure about about the iron/anemia thing, all I know is I’m due to receive an Iron IV instead of tablets (which don’t seem to be working).
I wasn’t offered a fecal blood test, I’m not sure why? I don’t have any GI issues and eat well because of my ET (all fresh). You would think he would have done this before stopping my aspirin.
The concern is he doesn’t know me well and didn’t give solid reasons for anything. He was saying things like “I don’t want to scare you” then saying “bowel cancer” - but none of that came with we suspect this because of this etc etc
I was thinking of contacting haematology on Monday and asking the secretary if I could put my concerns in an email (and ask for the guy I used to see before Covid, he’s now in charge). I just don’t know if that’s cheeky and I should trust the process.
It sounds like you have went through the wars (brain tumour), that’s some story.
Contacting hematology is not at all cheeky. It is using good judgement to advocate for yourself. This is not a situation where I would go with the flow. You need a better explanation before you decide anything. I am not sure why he would say that the aspirin would affect your platelet levels. It does not do that unless the aspirin is causing bleeding leading to reactive thrombocytosis. I would be asking some very specific questions of a doc who has MPN expertise.
Thank you. I will go back on Monday with some specific points and ask for some reassurance. In the meantime I am really looking forward to my appointment with Mr Drummond.
There are many things here that sound ‘fishy’. Could almost be a carp pool.
First, the fact that had not had a face to face consult since the beginning of Covid is not good practice. Particularly since your ET appears high risk, you say you’ve been on both Hydroxy and IFN (you don’t say what you’re on now) and you have symptoms. You definitely need that consult with your experienced MPN specialist.
Second, anyone who tells you, you definitely have ET but not an MPN, sets alarm bells ringing.
Third, iron deficiency is a difficult issue for MPN patients and needs to be handled by someone who really knows their stuff.
Fourth, the conversation around aspirin is worrying and certainly needs discussion with an MPN expert. A platelet count of 485 is not ‘normal’. ‘Should be ok’ off aspirin doesn’t cut it.
(Aspirin and Hydroxy / IFN do very different things. The fact you were on the latter two drugs suggest your platelets were out of control and needed management. What comes down, can also go up.)
The entire point about effective management and treatment of someone with an MPN is to stop them having a thrombotic episode that could prove fatal. Or indeed, uncontrolled bleeding.
Whether or not you are on aspirin (or some other blood thinning drug), the kind of drug interventions proposed to target the effects of the disease, the management of symptoms and the interface with other health issues all needs very careful consideration.
I too would be worried about what I’d been told, the change in regimen and the treatment proposals. I’d definitely want to talk this over with an experienced MPN specialist before going ahead with any of it
Thanks for this. I’m going to write in on Monday and put my concerns on email form. Some really valid points above. The biggest thing I will be pushing will be me now being non medicated essentially, so that does open me up as a risk when I have had exceedingly high numbers etc in the past.
I’m still going to go ahead with my private appointment as I think that’s an avenue I want to explore.
Funnily enough I got my next appointment through this morning, surprise surprise it’s a telephone appointment and not till Feb (I get my iron IV next week and no counts will be done till then)
You need to get yourself better informed and advocate for yourself! Doctors are overburdened. Most of them are not equipped with knowledge about MPNs. Try to get an appointment with an MPN specialist!
Anaemia. I have Beta Thalassaemia Anaemia, because I come from Greece and it's part of the Mediterranean anemia area. We always have anemia from the day were born. Many Asians have the alpha thalassemia. d it took 25 years to diagnose what I had and I was given iron for years which was very bad for me because I always had enough iron no one checked. If you have any relatives from the Mediterranean this could be the case. Iron infusions are good if you do them slowly. If you do them too fast you can get massive headaches because of iron burden. It's always good to have one colonoscopy why notß you can have a base value for the future. Are you having heavy periods or are you vegan or vegetarian? These are often reasons for anemia.
Thanks anag, yes I think I do need to advocate for myself, I maybe put too much trust in the experts (who are paid well). I may have distant European (Spanish blood) but it’s quite a few generations - all mainly Irish (me being the only Scot in the family).
No heavy periods, I eat well (like meat). All I know is I am getting one diffusion in one sitting so will look out for the headaches.
I have ET, and for many years iron deficiency anemia. On Aspirin 81 mg & Besremi. The Nurse Practitioners and Specialist always ask still taking aspirin? With ET some platelets are large and considered sticky. Even with your count in desired range you may have large sticky platelets circulating, this is where risk of stroke and heart attack come from with ET. This is what I have been taught . So, unless you actively bleeding, I don’t know about stopping the Aspirin. Definitely find a MPN Specialist. Best of Luck!
Yes, last time I was in hospital - the consultant asked me the same (pre Covid). Hence my fear of suddenly being taken off it with no solid reason. I deffo don’t want to have a stroke, I have two young kids (10 and 5), so I am going to go against the advice and keep taking it.
I too would be doubtful about the advice given. I was put on aspirin to prevent another stoke my platelets were below 300 at the time. This was pre Et.
the plot thickens. Received this today… (via post)
Now I was diagnosed in 2009 after a bone marrow, so it seems I’m suddenly cured. I also got a letter for my scopes in two weeks time (had my IV iron yesterday).
I have just received the report of your recent bone marrow. Unfortunately the aspirate was clotted and not suitable for assessment. The bone marrow trephine has been reported and this comprises of a small crushed piece of bone with relatively little assessable marrow. The included marrow does appear cellular up to 80% with no increase in reticulin or collagen depositions. Erythroid and myeloid elements are well represented with a full range of maturation and no excess of blast cells. Megakaryocytes are plentiful but relatively evenly distributed and no definite clusters identified and are morphologically normal.
There are no features to indicate a definite diagnosis of a myeloproliferative neoplasm.
How confusing! While it would be wonderful if you are indeed suddenly cured, (I don't understand the relevance of all of what they have said) the report doesn't sound like it is ruling MPN out but rather saying they can't definitely say you have one (on the basis of an unfortunately somewhat sub-optimal sample)? Are the scopes because they suspect it's a secondary polycythaemia reactive to blood loss somewhere else?
Yes. It does seem that. Nothing is clear, surely it would be just easier to run a biopsy again? Lots of lack of clear communication and doesn’t help I seen a doctor not a consultant last week.
Dr Drummond is 13th January.
I’m now also waiting on a phone call to clarify all this as put points to them.
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Help, I’m too anxious to listen to info re MPNs and COVID
Just been diagnosed 
MPNU/ET/Aspirin 
What happens next?
What to do ….
