Just looking for some advice if anyone can offer any! I am a 27yo female with no diagnosed health concerns. About a year ago I visited my GP as I was having real trouble with fatigue and dizziness that was interfering with my work and life in general. Done some very basic balance tests and sent me on my way saying nothing was wrong.
The symptoms continued so I returned to the doctors after about a month or two and had FBC (I think just to get rid of me!) My results returned low Vit D and high platelets (440 when reference in lab is 420) Doctor said this couldn't be the cause of cause any of my symptoms but to return for testing again in 8 weeks. When I did go back my count was now 490, all other tests normal, no inflammatory markers either, I was given a referral to Hematologist but this was returned as they wanted my serum ferritin checked before they would accept referral, this also came back normal so definitely not anaemic. I had about 10 vials of blood taken so i'm assuming they performed other tests with no anomalies there either.
My last FBC had my platelets lowered again, now at 430 so just above the lab reference range and I understand not considered 'high' by some standards. This was in January and I've not heard anything since, I am still experiencing symptoms and I don't believe I have actually been referred to Hematologist after that first referral wasn't accepted despite confirmation that I'm not low in iron.
In terms of the symptoms, and why i think perhaps it could be ET related, I had a period of about 6 weeks maybe 18 months ago where I experienced full body itching with no rash, this I thought at the time was a reaction to a new hair dye.
The dizziness has decreased, but I'm still experiencing a lot of fatigue but also inability to sleep! I have very restless legs at night, more so in my left leg, a sort of heaviness or need to stretch that keeps me awake?
I have a strong intolerance of heat, when I'm out and about on a warm day my hands will swell up and go very red, this also has always happened intermittently to my feet and ears but never thought anything of it. I also have very cold hands and feet most of the time, but this has been since birth as far as I am aware.
I've become quite breathless/tight chested with exercise and spend most of my time just lying down doing nothing aside from working which has been awful and I have gained a lot of weight from inactivity in the past year which I don't think helps anything!
I have also been experiencing very painful joints and some joint instability, along with a lot of muscle twitching/fasciculations. I sometimes get a rash from water too in the bath/shower but not always itchy. My eyes are also super sensitive to light ( as a side note I had to stop taking the combined pill when I was around 18 as I was having terrible issues with auras and daily silent migraines causing a huge blind spot in the centre of my vision!)
Sorry for the super long post, I'm just at a loss about what to do at this point, I haven't wanted to bother the doctor during the pandemic if they seem to believe there is nothing wrong with me however I do feel something isn't right! Does anyone have any insight on if its even possible to have ET with these low numbers, and if so do my symptoms fit? Or even any alternate suggestions, I'm at a loss and just want to feel good again! I'm also slightly concerned that if this is something I do have or its suspected, maybe I should be following extra precautions around the coronavirus, although I think with my age and lack of any existing comorbidities I'm probably ok?
Thanks,
Lauren
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BigWorrier23
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Hello Lauren, well the symptoms you are describing are definitely the same as those experienced by people with ET, however, we cannot say that is what you have, you really do need to go back to your GP about this and discuss your blood counts and these symptoms and why you are getting them. I appreciate that you haven't wanted to bother your GP because of the current situation but you need to find out why you are feeling like this as it can be very debilitating. Best wishes, Maz
I don't think you are worrying unnecessarily. Secondly, I have found my GP more available than at any time since the last 20 years! So, make an appointment and express your worries to him/her. It might help to write a list of symptoms, probably not wise to give your diagnosis of what may be wrong! If he/she does not volunteer a referral to a haematologist, you can request one. Good luck! Sallie
I will ask the doctor about the status of my referral and request a follow up. Also will ask for blood test results as I have never seen them!
I think the reason I’ve not done so up until now is that I feel as though the doctor thinks I’m a pain in the neck and has clearly stated they think it’s nothing due to my age/test results. They’ve said that my symptoms couldn’t be connected to my platelets whatsoever but also aren’t doing anything else to find out what is causing them!
Just a bit confusing saying it’s nothing but also in the same breath referring me to Haematologist.
I’m 29 - female- and just got an ET diagnosis. I kept getting ocular migraines And felt like something was causing them - despite several doctors saying I was fine and it was just a migraine. They were connected and finally managed with the tx
You know your body best! It sucks to feel like a pain in the neck too but better to be that with an accurate work up and tx. Good look!
Hi. Although you don’t yet know if you have an MPN, it sounds like you do share a problem many on here have experienced: doctors who don’t listen to their patients & don’t take seriously their physical complaints/symptoms. If your doctor doesn’t improve can you get a doctor who will listen & do his/her job correctly? Some doctors, when they don’t know what’s wrong, are afraid to admit & instead brush it off as not a big issue or “all in your head.” That’s something I’ve seen lots of folks here experience. So good for you to keep persisting. Hope everything works out & definitely either get your doctor to improve or get a decent doctor. Katie
Hi hun my platelets weren't very high only 454 for years before diagnosis max range was 450. When they sent me for further tests platelets 574 I was diagnosed et. Fortunately I dont really have symptoms. I'd chase this with your gp xx
Oh dear you must be hugely worried and frustrated. I understand your concerns.
Do you recall having a blood test in the last few years? My reason for asking is so that you could compare your platelet levels. My ‘normal ‘ platelet level was below 300. Although your platelet count is not abnormally high it might be worth keeping an eye on. You have symptoms and they need to be investigated.
If you are in the Uk, you can ask your doctor to refer you to a heamo.
I asked the doctor this exact same question - I had a CBC the year before which showed nothing except my low VitD, so I naturally asked what platelet count was at that point - and was told it wasn’t listed!
My platelets were 440 in August ‘19, 490 in November ‘19 and 430 in January ‘20. So consistently a little high. I’m not sure Haematologists are taking new F2F appointments here yet and I understand with my age and numbers I’m probably not a priority which is OK just annoying not having any answers since I first visited back in July last year!
I had never heard of ET, the doctor just threw it out there casually in conversation - initially she said it was probably secondary Thrombocytosis, maybe I had a viral infection that caused my symptoms, then 2nd time when it had gone up to 490 she said she would refer to Haemo as she thought it could possibly be ET, but she didn’t think it was sinister or anything to worry about and couldn’t be causing my symptoms?
Obviously I googled it and freaked out! I’m calm about it now would just rather know one way or another x
Hi. You are right to be worried. I suffered these symptoms and more for so many years and even now, my GP practice has no idea about ET or the symptoms of it. It took me to have another TIA and take myself to hospital where I was, at las, seen by a doctor who would not accept my constant and long established symptoms as something to sweep under the carpet and he arranged every test under the sun to establish an underlying cause.
Consequently, having visited my GP so many times for different things, which it now transpires were all related the ET and JAK2+, I have been diagnosed since January 2018. You are not alone in your 'treatment' or lack of. It's because this is rare and as I was told by my haematologist, 'your doctor probably doesn't even know about it!'
One of the GPs at my practice when I was first diagnosed was so dismissive of it that I felt offended. You'd have thought I'd visited to complain about a cold. Incidentally, my platelets have never been over 600 but I have more symptoms than most and reject just about every drug and foodstuff on the planet as a result.
Sounds like ET to me but at your age they don’t usually give any medications. Just monitor and wait. I would ask to be referred again. I’m 71 and have had ET for years. I’m on hydroxycarbamide and aspirin and am quite active. All your symptoms sound like I’ve had for years. It shouldn’t interfere with your life. People with ET live just as long as people without ET. Be positive and stay fit as you can. Eat well and excersise
Hi I have ET and a lots of ur symptoms. I would class my platelets as relative low 460 up to 500 but I was tested for the Jak2 mutation so it may be worth asking about that. On another note you mention vit D low. I get restless leg syndrome every time my vitamin D is low. Don't know why it just happens so now I take over the counter Vit D they are very cheap but may help with your legs. X
I complained of similar symptoms for over a decade before my high platelet count was discovered. Then we pulled old records which found that my count was elevated and gradually increasing for at least 10 years. I was also told it wouldn’t cause my symptoms. My diagnosis took a long time even after referral to a hematologist. I finally switched doctors, got my diagnosis, and treatment based on symptoms. I feel like a new person now. Keep pushing your doctor about it and get that referral.
We can all understand why you would be worried as we have all been there too. I was diagnosed with ET over 30 years ago. It progressed to PV about 7 years ago. Please do know that ET (or PV) is certainly an issue that needs to be dealt with, but you can manage it for a long time. I have had a good life and continue to do so at age 64.
Sorry to hear you are going through the healthcare mill. That is something we all experience too. The real key is that assertive patients receive higher quality healthcare. Passive patients do not.
At this point it sounds like you are hovering at a very low-level of intermittent thrombocytosis, but the etiology is unknown. Standard normal range top for platelets is 450K (varies by lab). It could be primary (Essential) or secondary (related to another health condition). What you are describing does sound like a possible low-grade ET (assuming leukocytes and erythrocytes are WNL). Requiring you to get your iron levels checked actually does make sense since it would be a rule-out for a secondary thrombocytosis as a result of iron deficiency. Do be aware that iron deficiency and anemia are not quite the same thing, though iron deficiency can cause anemia. Anemia = deficiency in red blood cells.
Getting to see the hematologist is really important. Most GPs do not have the expertise to diagnose a MPN nor treat it properly. Do be aware that many hematologists rarely if ever see MPNs too. It really helps to involve a MPN specialist. Here is a list of patient-recommended docs mpnforum.com/list-hem./ .
One of the first things the hematologist will likely do is check for at least one of the three common MPN gene mutations JAK2, CALR, MPL. The JAK2 v617f mutation is the most common (about 50% of people with ET, 95% of people with PV). If it turns out that you have this mutation (BTW - I do have it) then it will certainly aid in diagnosing the MPN. There will be more to learn about this mutation if you do indeed have it. It would also explain some of the other symptoms you describe. There will be many other tests the doc will perform too.
For now, do try not to worry too much. Most of us with ET/PV live a normal to near-normal life span. There can be challenges to managing a MPN, but the challenges can be managed. At this point, there is no way to know for sure what is going on so prompt follow up is really essential. At your age, the treatment would almost certainly be low-dose aspirin-only and monitor. I did that for over 25 years straight with no incidents of thrombosis. I wish you the same kind of success.
Please do stay in touch and let us know how it goes.
Thanks so much for taking the time to write such an in depth response!
I have been tested for anaemia, for low iron, and thyroid issues - all normal. Also normal ESR and no inflammatory markers.
My WBC, RBC, Leukocytes and Erythrocytes are all normal according to the doctor, though as I say I have never seen the results myself (not that I would understand them anyway!) The only thing is the slightly elevated platelets.
I will go back and have it retested and if still high ask for the referral and try to be proactive about it moving forward. I never go to the doctors, last time I had went prior to these symptoms occurring was about 5 years ago, so I am guilty of feeling bothersome. I don’t want to come across as a malingerer!
I didn't have very high platelets, and suffered visual disturbance "migraines" for years. They stopped as soon as I was diagnosed and put on aspirin and hydroxycarbomide - it turned out they weren't migraines at all. They eventually did a blood film, which raised alarm bells - I didn't have lots of platelets but they were enlarged and funny shaped. I think a blood film is quite a cheap test to do, so if you are getting another blood test done at some point, perhaps you could ask for a blood film as well?
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