I've just seen my Gp who is the only Doctor I see who seems to have any sense and be able to do joined up thinking. He's looked at all the blood tests the Rheumatologist took about 6 weeks ago and put it together with all my other recent symptoms and now believes I have Polycythaemia. The Rheumatologist gave me a follow up appointment for June. I'm pretty fed up that others have dismissed a lot of my symptoms as they make no sense. I get breathless easily yet my heart and lungs are fine, I sweat profusely all the time, mainly my face and head, I'm lightheaded and nauseous, I have an extremely painful burning knee, I have high BP and High haemoglobin. I'm already on Warfarin, and have had 2 strokes, plus I have to take a medication to prevent dysfunctional uterine bleeding which can cause strokes and heart attacks. To me that has always been preferable to bleeding to death due to Hypovolemic shock as I've almost done twice in the past. So now I have a Haematology referral to go with all the others. I've been thinking for a while that maybe my Inr should be higher because of the Norethisterone and it's side effects of clotting but it's a fine line. They tried to take me off it in the past but nothing else worked and Hypovolemic shock can itself cause heart attacks and stroke, not to mention cause problems for months after. Funny no one twigged when I lost 4 pints of blood yet had a Hgb level of 14 afterwards. They wanted to do a hysterectomy to rectify the problem they caused with hrt but quickly changed their mind when I had my second stroke 2 weeks before the hysterectomy was due and at that point I hadn't been diagnosed with Aps. I wasn't diagnosed till a year later and Hysterectomy has never been mentioned again. I was actually pretty symptom free of Aps until earlier this year but have gradually developed more and more symptoms over the past 9 months or so, The high Hgb I think has been present for some time, probably a decade as with all the bleeding I endured through years of Dysfunctional uterine bleeding my Hgb levels were never low.

31 Replies

  • Hi there, thanks for the update, I enclose some papers for you to read: onlinelibrary.wiley.com/doi...


    and this in particular: guysandstthomas.nhs.uk/reso...


  • Thanks Mary that'll keep me busy x

  • The PDF by Prof Hunt will be useful for anybody involved in your care. MaryF

  • My sister Debbie has both APS and polycythemia. She is also on this site. You should compare notes

  • Hi again,

    I have very fast read a little from previous questions here; I wonder if you have seen an APS-Specialist and if you have had positive antibodies also? Ican not find anything about an APS-Specialist which it quite important with this disease. You talk about your GP.

    Best wishes from Kerstin in Stockholm

  • Yes I have tested positive I was diagnosed a year after my second stroke with Aps, first I'd ever heard of it and until the strokes had no symptoms that's not the issue tbh the issue is I have very high Haemoglobin and have had for some time which has gone unnoticed and all the odd symptoms I have that don't really fit APS do fit Polycythemia. I've not seen a specialist as I had no issues at all until fairly recently so didn't want additional medication or frankly to see any more doctors especially as I had no problems. I've seen a neurologist when I had my strokes and discharged, seen a heptologist and discharged, seen haematologist and discharged, seen gynaecologists and discharged, Oncologist and discharged, been attending the falls clinic for over a year for my light headedness and they drive me mad as they refuse to accept it's not my heart no matter how many tests I pass. Last and not least made an appointment with a Rheumatologist about my Aps and he was only interested in my dodgy knee, would not engage about my Aps at all. Ran loads of blood tests which is what the GP picked up on yesterday arranged xrays on my knees and was adamant I had Arthritis. I eventually got the results of the xrays over a month later and there is no sign of any Arthritis but the pain is still there. Been waiting for an ultrasound for about 8 weeks now. Received a follow up appointment from the Rheumatologist 2 days after I saw him for June. So before the xrays were taken and before the blood tests were back. I'd frankly be better off with a vet. Yes I talk about my GP he's taken an active interest and learnt as much as he can about Aps and is the only one who seems to give a toss.

    So until May this year I was pretty symptom free, muscle and joint pain was controlled by exercise My Inr was stable although it recently dipped for no apparent reason. I have my final financial resolution for my divorce on Monday and Tuesday so until that's out of the way can't think about anything else as my Ex is trying to take the house I bought and paid for long before I knew him away from me. This is the man who said he wanted a divorce 6 weeks after my diagnosis as my ill health had ruined his life apparently. He walked out with no discussion on 5 th October 2014 and I've been trying to rid myself of him ever since, which has cost me £12,848 in legal costs so far.

  • Hi There Dobirdogz! I'm Debbie! I have Polycythemia and APS ALSO! I'm amazed to hear this! PV is rare and of course mostly in men over 60! I DX'd myself in 2000 an was made official in 2004! Never felt well tho! Was phlebotomized weekly at first then monthly! How are u dealing with both! Do you have itchy feet and can't take hot baths? I itch all over! I lost my left leg on Jan 7,2015 and hadn't been DX'd with APS til October 2015! We ar in strange position cuz their both thick, "SLUDGY," Blood my nurses nicknamed my PV! I was phlebotomized and on aspirin! I've had APS my whole life and just DX'd with RA! I had JRA as a child and thought I grew out of it, but it came back! How r ur iron store levels? Be well!!!GODSPEED

  • Also my sister came back positive for one of the APS TEST! She will retest in May! Also both blood disorders are caused by JAK 2 gene! I don't have it but know my APS IS GENETIC CUZ OF MY SISTER!

  • I haven't really taken it in as yet, always thought it weird that my Aps symptoms weren't the same as anyone else's but why all the symptoms have surfaced now is a mystery but the stress of the divorce clearly isn't helping. Thing is when I had my stroke they commented on my Hgb being too high but left it at that. I do eat, well juice a lot of Iron rich foods which will be easy to stop. I'm always hot and when I get very hot I itch all over. I've taken to having barely warm showers as I keep going lightheaded and have fallen in the shower once and had a few near misses so now shower in cooler water with the window open to try and stay cool. I kept telling them how badly I sweat all over but especially my head and face. I get out of the shower and can't get dry unless I stand in front of a fan. I'm already on Warfarin but it's been dipping lower than normal lately.

    It's like having a double whammy thick blood + thick blood, great innit x

  • Yes my dear I've always said we have a double whammy! One disease is totally different symptoms, but ironically we have real thick blood due to both conditions! I'm so sorry about the stress of divorce! Stress is just an added complication of all we deal with! I went thru all the same and always felt this full lethargic feeling! You will feel better once they start phlebotomizing you! The only thing other than thick blood that they have in common is the JAK2 Gene! Are you in pain with your APS? R u from UK! I live in USA! My sister just tested positive for one of APS TESTS! Yes we have too much iron stores which r totally different than our iron levels! The stores are there for wen our iron drops! Our stores run way too hi, whereas with APS the iron levels can be low! Therefore they kinda go against each other in some ways! I've been told I'm very complicated and need genetic testing! I lost my left leg due to undiagnosed APS last January 2015! I've had several blood clots starting in my 20's! Been DX'd with everything from MS TO FIBROMYALGIA! I've seen APS specialist and find out I also have Rheumatoid Arthritis! I had JRA as a 6 yr old child and have been sickly most of my life without answers! Being treat dastardly by the Medical Profession! Always in my head! They've nearly killed me several times telling me it was in my head! Flatlined twice cuz it was in my heart, not my head! I just don't show up on the "Normal," tests! Never did never will! Now they tell me how complicated I am and have many disorders that are hereditary! I'm suppose to go to 4 more docs, give them my DNA so they can tell me what other autoimmune diseases I have! No way! I'm done! I just want my INR'S STABELIZED so I don't loose my right leg! I'm done with it all! After 62?years of suffering , I finally got my diagnosises!!! I'm not crazy!!! Yay hurray hurrah! Even my friends and some family use to say I was a hypochondriac! I wish you well and PLEASE PLEASE keep in touch so we can compare notes!!! We r very rare to have both thick blood disorders! I'd love to know if anyone else out there has both and if they're somehow connected! Other than the JAK 2 gene I don't see much of a connection! Plus the thickness of our blood! My prayers are with u always! I totally can relate to you! Godspeed!!!

  • Hi Deb, thanks for your input, I am in the uk, I'm in pain just not sure what with tbh. I'd never been ill in my life until I hit 50, not a good time to be ill as the Gp I had then put everything down to my age and the menopause. Being given Hrt was really the start of my troubles and as we know with Aps hrt should be avoided, except I didn't know about the Aps at the time. Every time I saw that doctor I wanted to hit him, he kept telling me the amount of blood I was loosing was perfectly normal for someone my age, well that's rubbish or no one over 50 would be able to work. I was confined to the house for days, sometimes weeks on end. He eventually refused to see me after I called him a moron and told him if he didn't refer me to a gynaecologist immediately I would report him for negligence. I did get the referral though. My current Gp is brilliant, never treats me like a nuisance and is really trying to get to the bottom of my issues. He says I'm a puzzle but he's determined to solve me. He commented the other day he doesn't know how I've maintained my sense of humour but I can't do miserable, It is what it is and I have to deal with it. I was a bit disturbed to read that PV can lead to acute myeloid leukaemia as that's what my mum died of at 48 but we won't dwell on that.

    Stay well x

  • No don't dwell on that! It can go into leukemia, but then revert back to Polycythemia! I've always had a hi WBC/ white blood count also, which the docs told me had nothing to do with PV! But recently found out it does! How r ur playlets! I'm sorry you r going thru the stress of a divorce! That cudve been the trigger! My trigger was a head on collision with a19 yr old gir driving on wrong side of road! I had a broken hand and a detached Vitrious, that's right near the retina! I've never been the same since the car accident! Then a month later had emergency tummy surgery due to a blockage! I was hit badly in the tummy by the airbag and my vascular doc told me to get checked for a blockage and sure enuf I did, but they did a sonogram and saw a hernia! I calls my tummy doc and told him I'm in severe pain and I have a blockage! He sain no u have a hernia! I begged him for pain meds and he said let's wait til Monday! This was number 6 tummy surgery for me! I went to EMERGENCY ROOM Sunday and was tubbed immediately! Then they told me I had one more day left to live! My intestines were dying! Had emergency surgery and never got reall better! At least now I have a DX and can deal with it all! Loosing my leg was the hardest, but now I can be a big part of controlling my own destiny! Glad u called your previous GO A MORON! You have a great attitude! Keep it up and keep on this site! I pray for your stress levels to go down! You sound strong and tough so keep on fighting! Especially for your life and don't let that mean man get any part of your house!!! GODSPEED

  • My Gp just rang me to find out how the divorce hearing went, don't ask, the judge refused to hear it as neither legal team had supplied the correct documentation and what had been supplied was supplied too late (the day before the hearing) so we have to do it all again in 3 months time.

    What he actually rang me for was to say my blood test results are back and my Haemoglobin is still rising and my Haematocrit is high so the referral to the Haematologist is going to be chased up with a phone call and a letter stating I require urgent attention.

    No doubt I'll get an appointment in the next 6 months lol if the others are anything to go by. Thankfully I have a very proactive gp who won't let it lie.

  • Oh good! I'm sorry about ur divorce! The stress always makes thing worse! Please keep in touch! You shud be phlebotomized with the hi counts and 6 months way too long! Get on their cases! You need Hemotologist to feel better! You have too much blood!!! Good luck and GODSPEED

  • I know Debb and like you I'm only little so the quicker they sort it the better. My Gp has been on the case today and after waiting 8 weeks for an ultrasound on my painful knee I now have an appointment for tomorrow afternoon, hopefully he has the same success with the Haematologist. As long as it's not for Monday morning as I have an Mri on my head on Monday morning at a different hospital.

  • Ok I go to eye doc today to c if I have Sojerns! I am symptomatic, hoping I don't cuz need Plaquinil and need approval from eye doc b4 I go on Plaquinil because I also have macular degeneration in left eye! Good luck my dear!

  • Hope it goes well Debb I think you have more than enough to deal with as it is x

  • Awe thx ur very kind!

  • I'm here now getting lots of test done to my eyes! It's to go on Plaquinil! Plus Sojerns

  • Hi there my Conrad!!! I went to eye doc yesterday and was put thru a battery of tests and will find out if I have Sojerns in 3 weeks maybe! They say its difficult to DX! I want o know how u are doing my friend! I feel very honored to b your friend! I'm here for you if you need me! We understand each other! Please try to get rid of that stress! I with one leg started walking again and wen I walk alone I come back refreshed and just on my walk solved the problems of the world! It's an invigorating experience for me! Also my sister, plus read an article on water! Drink water it has this calming effect on people! Wen I get stressed or upset I drink a glass of water and it cleanses your soul! You're a strong woman and I know you will avoid the stressors in your life! A very concerned friend!!! GODSPEED!!!

  • I'm ok today Debb just been for an ultrasound on my knee to look for the source of the pain as the xrays showed nothing. The tech wasn't very chatty so I'll have to wait for his report to my GP.

    Luckily my eyes have been fine, apart from when suffering from vertigo, a bit strange my eyesight has improved quite markedly according to my optician.

    I'm putting the divorce out of my mind for now, I refuse to stress about things I can't change and tbh life without him is a whole lot happier.

    I think you're the strong one here with all you have to contend with hope you get the result you want and get the treatment you need, it's such a long winded process.

  • Yes it is and I'm so glad u put the divorce to the side! Let it be what it will! Some things we have no control over and I had an aunt and she told me once and I never forgot it and have learned to live by it! She said when she doesn't know what to do about something, she gives it to God and he takes care of it! Somehow things eventually work out and it seems at the time it was bad, but wen u look back maybe u can say, ah it wasn't that bad!!! I have calf and knee pain too and they have no idea what it is either!!! What else is new!!! I shall put you on my prayer list!!! Godspeed!!! Please keep me updated cuz I think of u al the time!

  • Just had a phone call from Haematology / Oncology at the hospital and have an appointment for the 23rd of this month. That's quite quick for them so the GP chasing them up seems to have worked.

  • Well I've had my appointment with the Haematologist, he was nice enough but not convinced he was taking on board anything I said. He was obsessed with my BP even though I explained I'd just dashed the entire length of the hospital as it took 45 minutes to get in the car park. He wanted to admit me but was told that wasn't happening so move on. So he's settled for writing a strong letter to my Gp which isn't a problem as my Gp already knows my BP monitor is accurate and I take my BP 3 times a day. Jeez don't doctors ever see past BP and Cholesterol?

    I wanted him to raise my Inr so that when it dips it will still be above 2 rather than the 1.5 1.6 and 1.7 of late. but he was adamant the current level of 2-3 is fine even though I now have two conditions that cause clots, he was more concerned about bleeding. I tried explaining that I don't bruise, don't bleed much if I cut myself etc but bleeding was still his main concern.

    Loads more blood tests to get done but the queue would have taken hours to reach the front of so gave it a miss and will try again later, luckily it's local.

    Apparently the blood tests will take 2 weeks to come back.

  • So they haven't had the blood test results back yet and in the post this morning I received an appointment for 2 months time, seriously how does it work? They send you for urgent tests explaining they'll take a fortnight to get the results because that's how long one of the tests take and before they know the outcome you get booked in for 2 months time regardless of outcome, Madness.

  • Hi Dobiedogz how r you doing!? Have you been phlebotomized yet? Last I heard u had an appointment & I'm hoping all went well! I did test positive for Sojerns about a month or so ago and I'm going to a local Rheumotologist as I can't afford Dr. ERKAN! Or the amount of money it costs for my trip in with parking and all! He costs $625 per visit and my insurance only picked up half of that plus $120 to go into NYC with parking , gas time and co pay! If I add it all up he's $500 on a good day lol... I shall c what happens! I went to this doc about 15-20 yrs ago and he DX'd me with Fibromyalgia! So I'll c how it goes and let you know! I'm interested in how u are though! How is your divorce going! I hope and pray it's over soon so u can alleviate some of the stress! Good luck and Godspeed and Happy Easter!

  • Hi Debb, the divorce is still dragging on we're back in court in july. No I haven't been phlebotomised as yet it wasn't a great appointment tbh all he wanted to talk about was my BP he wouldn't raise my Inr range so I'm stuck with 2-3. I've spoken to the pharmacist who checks my Inr and he's agreed to keep at 3 if possible. He upped my warfarin but that sent my Inr too high 4.1 so lowered it again and it fell to 2.4 so we've upped it again 2 days this week and will see what happens. Ido think I felt better with it higher, as I had no lightheadedness or dizzy spells yet as soon as it fell the lightheadedness came back. Just have to convince the haematologist of that. Back to see him in April.

  • My families doctor at dx saw the stress on my face when he admitted to me that polycythemia is a form of leukemia. He advised me to think of it as high blood pressure and that things should be fine with staying on top of treatments. He is/was pretty much right; it's been 7 years. In the USA the main number they use as a gauge to determine if a phlebotomy is needed is the Hematocrit number. For my wife the magic number is 46.0  It is AKA "HCT". Any idea what your Hematocrit number was in your most recent blood draw Dobiedogz?

  • My last reading was 54 and that was over a month ago

  • Too high. Get in for a phlebotomy as soon as you can. You can always send a fax letter or email that this ones on them if anything happens. I'm sure there is a nicer way to say it. Over the years I've discovered if my wife takes her cod liver lemon flavor fish oil everyday she requires fewer phlebotomies. Seems you should be on baby aspirin at the least and maybe a 325 mg aspirin. Ask your doctor about that please. No med training here.

  • I'm already on Warfarin, I have been since March 2014. Currently having a dispute with the Haematologist as I want my Inr range raised and he refuses to raise it so I'm keeping it at the top of the range.

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