I am a relatively fit and healthy 57 year old, no health complications so when I was diagnosed with ET last year I was put on aspirin and ferrous sulphate for a watch and wait treatment. I am happy with this however from my platelets being 600 when I was originally referred to a Haematologist they have gone up to over 800 and the headaches and migraines I have always had are significantly worse. My GP tackled this with a low does blood pressure medication which was good for about two months but the last month I have had silent migraines again, extreme fatigue and just feeling really not well. I have always had low iron, the ferrous sulphate supplements doesn’t seem to be making any difference so my GP is sceptical of me needing them.
I do have a stressful job, but I have really tried to manage that, even though I rest and do all the things for self care; good sleep hygiene, low caffeine and very occasional alcohol, eating healthy, exercising daily and mindful hobbies I am still having days of brain fog, dizziness, eye disturbance, ticking facial muscles, pain in my wrists and ankles.
My question is, is this normal for this level of platelets? It seems I am ok and well for a while then I just hit a wall and need to rest/ sleep . I am pretty sure I have finished with the menopause with the hot flushes and brain fog a while back and the stress at work is no where near as bad as it has been in previous years, but this , to me in my inexperience of this condition seems out of proportion of the platelet count.
I have a GP appointment this week because I have been off last week and I have just slept but still felt off and I have a Haematology check up appointment in two weeks so any advice would be gratefully received. I know everyone is different but I cannot stress how invaluable the information is for me on this forum.
Many thanks
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Yarnhabit
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I suffered from headaches for years before I was finally diagnosed. When I was put on low dose aspirin it was like magic - I finally had relief from the headaches! Like you, it was fairly short lived and they started coming back.
My MPN specialist refers to them as “break thru” headaches and recommended I take a 2nd aspirin (12 or so hours apart) and see if it helped. So far, so good. I also read an interesting study recently that compared patients taking 1 vs 2 vs 3 aspirin per day and 2 seemed to be the sweet spot.
Maybe check with your Dr to see if it’s ok to try a 2nd aspirin?
I also totally feel you when it comes to hitting a wall. No solution for that so far, sadly.
Thank you so much for replying and for the advice - I will ask about that. Also found some other advice from historical posts after writing mine that I had previously missed.
It's possible to have two blood disorders simultaneously; e.g. ET and a low iron disorder. And possible you might have early or pre-fibrotic myelofibrosis rather than just simple ET.
Hopefully your hematologist will prescribe a bone marrow biopsy to help further refine your diagnosis. An immune system boosting med, Pegasys interferon, is available that can likely lower your platelet count to normal. Interferon also usually slows or stop further disease progression to post ET myelofibrosis.
As your platelet count comes down your symptoms of silent migraines, extreme fatigue and feeling unwell may improve too. Hydroxyurea is another med that can likely lower your platelet count to normal, but it also often causes tiredness and fatigue and does not slow or stop further disease progression to post ET myelofibrosis.
Thank you for this, I was diagnosed without a biopsy but was told I could have one at a later date if I wanted, I was thinking of asking just to have the baseline . I have had an MRI and my eyes looked at so think it is all linked to the ET.
You give the impression that disease progression to myelofibrosis is inevitable but I’d understood that this isn’t necessarily the case. Where can I find out more about this?
I am really sorry I can’t help you with this, it was another voice who mentioned myelofibrosis. Like you my understanding was there is only a small chance of progression happening.
I had headaches & ocular disturbances in my eyes occasionally . I was sent to hospital eye clinic for checks . A year wasted before bloods actually taken & ET Jak 2 eventually diagnosed. Put on Hydroxy but no improvement so contacted MPN & now on low dose Peg Interferon monthly that has bought platelets & other bloods back to almost controlled levels & headaches went. Get advice even if a phone call from MPN .
Hi Yarnhabit! I was diagnosed with ET CALR+ about 2 years ago. This definitive diagnosis was made after blood tests and a bone marrow biopsy. I was advised to take 1 aspirin daily. I was also prescribed 90mcg Pegasys interferon fortnightly. (I jab myself). This regime lowered my platelet count (that was 1600 at the start of diagnosis and treatment. ) It now hovers around 450. A recent clinical letter of 3 months ago stated that there were currently no symptoms suggesting progression to myleofibrosis. I’m fortunate in that I seldom suffer from headaches. I do get fatigued but a walk with the dog and a swig of red wine helps to alleviate that. I don’t know if you live in the UK but it’s important to see a Haematologist who has experience of MPN. GPs are clueless.
Hi Yarnhabit, so sorry to hear that you are experiencing this. Your haematologist may be able to advise something to help so do discuss it with him/her at your next appointment. Kind regards, Maz
I relate so much to your post! I was diagnosed with ET JAK2 last year, my platelets were at 800k. I had suffered from extreme fatigue, headaches and what not for the past three years (I couldn’t even exercise any more, my job was depleting me of all energy… in a nutshell, I had no quality of life).
I started last April with a Hematologist who gave me aspirin and had the « wait and see » approach as I’m 56. That didn’t help, my fatigue was still extreme. I asked if it could be peri menopause, but the Hematologist didn’t know and couldn’t help me.
Having read a lot on these forums, I applied what Hunter says every time : consult an MPN specialist. I found one here in Montreal and got an appointment last December. In January, she suggested Hydrea (at 500 mg per day) as I wasn’t eligible for Pegasys and I said yes.
In two weeks, I started feeling better. Much better. I could again do stuff I wasn’t even able to consider last year, last walking briskly for an hour.
In four weeks, my platelets had dropped to 480k and three weeks ago, the team of Specialists added 500 mg of Hydrea once a week since they’d like my platelets to be under the 450k mark.
I have very mild side effects from the Hydrea, like not feeling hungry or being constipated once a week, but nothing scary or debilitating.
In a nutshell, Hydrea gave me my life back… and some days, I have way too much energy LOL I’m really not used to not taking naps, being able to work late, not having brain fog and just feeling good all the time.
Please do keep in mind we are all different, our bodies don’t react the same way and what works for me may not work for you. But if I’ve learned one thing, it’s this : go see an MPN specialist. They’re the ones that can suggest the most appropriate course of action and can guide you efficiently through this whole weird cancer.
Best.
PS: something else Hunter said in one of the posts on this forum was that at more than 500k platelets, it's normal not to be ok. That was my second lesson: listen to your body. And in my case, as soon as I'm under 500k platelets, I feel good.
Hi, what is your haematocrit level? I was diagnosed in 2018 through migranes. Eight months of them! Whenever my HCT levels are high, my head is muggy, migrane and fatigue as well. Maybe check what your levels are? Good luck
Pardon my ignorance but what is the haematocrit level? It is not something I am familiar with, I am in the UK is it called that here or tested for? Thank you for replying
Hi, I am UK as well. Your hematocrit level (HCT) is , well, how sticky your blood is. How viscous/ thick. My dr wants mine below 0.45 and it was for the last five years, but has been 0.50 the last six months and my head aches have been horrible. I'm having venesection next week . It was explained to me that thos reduces the circulating blood volume, so reduces the viscosity. The down side is that it can make you more anaemic. I am already anaemic due to this condition, and cannot take iron tablets as they make my blood more viscous. Catch 22!
You have already received great ideas from others on the forum One of the best ideas is the recommendation to consult with a MPN Specialist. MPNs are rare disorders. Most doctors, including hematologists, have little experience with them. Optimal MPN care requires MPN expert input. Here is a list of MPN-expert doctors. mpnforum.com/tsr-the-list/
Regarding what is "normal" based on the number of platelets, there is no "normal." The only symptom that is directly related to the platelet level is the risk of hemorrhage, which increases as the platelet levels go higher. The risk of thrombosis and microvascular symptoms is more about how the blood cells behave than how many of them there are. Note that even with the thrombocytosis, PLT < 1% of your total blood volume. Having said that, note that some do find that some symptoms correlate with platelet levels. The reasons for this are complex. One factor is that another aspect of MPNs is the overproduction of inflammatory cytokines. It is the excess inflammatory cytokines that are thought to be responsible for many of the constitutional or secondary symptoms we experience.
Managing a MPN requires a multifaceted treatment approach. Some symptoms are related to the MPN and some are not. Headaches can occur with or without a MPN for different reasons. MPN related headaches are thought of as a microvascular symptom. Interventions are based on this underlying mechanism. Treatment is to alter how the platelets behave with antiplatelet medications like aspirin. Some find that they need a higher dose, taking aspirin 2x/day rather than once. Others find that they need a different medication. This would be an issue to address with a MPN Specialist for the best advice on how to manage the issue.
Fatigue is the most common MPN constitutional symptom. Your situation may be a bit more complex due to the iron deficiency. I would suggest that the iron deficiency needs to be properly diagnosed to understand both the fatigue and the MPN itself. This would be another issue to address with a MPN Specialist. Meanwhile, there are things you can to to manage the fatigue. there are good resources for this, staring with MPN Voice.
in as much as my platelets remained between 500/600 for a long time years in fact and haematologist appeared to think this low level asymptomatic , reactive , but my symptoms exactly as you described
I had never had migraines but now several years of visual disturbances loss of vision and speech , head pain dizzyness put down to labyrinthitis or viral infection joint pains and tingling sensations under the skin even parasthaesia explained as slight spinal stenosis .. labile high blood pressure poorly controlled. Bruising and hot irritated feet loss of toe nails .. sudden blue finger or toe .
Eventually put on clopidogrel by Gp with referral to stroke unit … once on clopidogrel many symptoms went head pains visual disturbance even my BP has settled to normal levels , at their highest my platelets 750 but that was after having Covid .
It doesn’t excite my haematologist who seems to feel my levels are low she did up my Hydroxycarbamide and I felt worse .
I feel I am considered low level . Mild is written on my notes but what does that mean my symptom burden is so debilitating brain fog dizzyness like a permanent hangover worse since Hydroxycarbamide is not attributed to the condition by my haematologist so very frustrating.
I have it would seem had this condition since 2015 eventually diagnosed 2022 ET jak 2 positive . I am now late sixties so I am told I am getting old ? Prior to this I cycled swam and walked miles regularly . I am told this is to be expected vascular changes in my brain ..but I don’t totally accept that as it has been fairly rapid .
but you are not …68 so keep asking questions good luck .L
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