Posted , 4 users are following.
I have several of the symptoms plus blood tests show:
Haematocrit is 5 - lab range for a female is 0 .37 - 0.44
Lymphocytes 4.8 with range 1-4
I am waiting weeks for a conversation with a GP so, if possible, would like to have an idea before then so I know which questions to ask.
0 likes, 14 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
angela_o..o Tills
Posted
Hello,
Lots of questions need answers before anyone can answer your question. 😃
There are two types of polycythaemia, one which involves a change in your the JAK2 gene in your DNA, which is irreversible, and one which is caused by your lifestyle and which can be altered.
So have you had a JAK2 test to find out if it's genetic? Or have you been referred to a specialist because your doctor thinks that you have a polycythaemia lookalike problem? Or have you been doing some private research in Dr Google's medical texts and convinced yourself that you have polycythaemia?
The main characteristic of polycythaemia is an overabundance of red blood cells. You don't mention those. White blood cells and platelets are sometimes also abnormally high (I am one of the lucky people who won that little lottery of life) but it's usually red blood cells that go into overdrive.
Your haematocrit is high. But that is merely the "thickness" of your blood. It could be caused by other factors. Not drinking enough liquids in hot weather, smoking etc.
If you live in UK and are going to visit a regular GP (not a specialist) then don't be surprised if the GP doesn't have much to tell you. Polycythaemia is not a widely known illness.
Tills angela_o..o
Posted
Thank you Angela for your response.
I haven't had anything other than a routine blood test.
I haven't convinced myself that I have Polycythaemia - in face I sincerely hope I have not. What I do have is Pernicious Anaemia, B12 injections and I understand there could be a connection.
The GP asked her secretary to make an appointment with me for a telephone consultation.
I was talking to my daughter about the blood levels and she queried Polycythaemia because of the Haematocrit level which has increased with each routine blood test plus the spike in Lymphocytes.
It is probably nothing to be concerned about but I want to be able to ask the GP the right questions - especially if they are not well versed in explaining why I have these anomalies and inorganic phosphate and B12 out of range.
RBC is 5.1 and within the range of 3.5 - 5.5.
I know that I am 'jumping-the-gun' and it is possible the GP only wants to talk about B12 but I think I must raise the blood levels noted as abnormal. Or do I ignore them? I don't know.
angela_o..o Tills
Posted
Way back in the 1970s my old dad had pernicious anaemia and B12 deficiency but that was in the days before we patients were allowed to know anything and The Doctor Knew Best, so I don't know any more than that.
I think that a high haematocrit could be caused by many things. But anaemia is quite the opposite of polycythaemia. My red blood count, the last time I had a blood test, was up in the 700s. Quite surprising, even for me. I am a walking black pudding. 😉
I would certainly ask your GP about the haematocrit. You don't want to have "sticky" blood, that's for sure.
Good luck with the phone chat. I hope it is helpful.
Tills angela_o..o
Posted
I have to agree with you, in particular, on two things.
I definitely don't want 'sticky' blood and the scary implications attached to that.
Also having both PC and PA is a medical oxymoron and so rare that I am not seriously considering it as a possibility.
Being ignorant is not an option! I just need to know! 😁
Tills
Posted
This three and a half week wait to speak to a GP about the anomalies in my blood tests is seriously stressing me.
I am assuming the test results are not bad enough to provoke an earlier response but can't quite convince myself!
Has anyone here used Babylon to speak to a GP - just wonder if it is worth the money for some sleep and peace of mind?
justin23294 angela_o..o
Posted
Hello Angela . You are still there ! Nice to see you! For some reason I could not sign in. Glad that I'm back. A lot has happened since the last time we interacted. So. please tell me how things are going. I'm still here. 85 and counting.
angela_o..o justin23294
Posted
Hello Justin, Yes still here. Hanging on by my fingernails, ignoring all the "advice" from our politicians about how to stay alive in these weird times. It seems that our Mr Johnson and his pals think that because about half the population of the UK has now been vaccinated it is safe to go out and hug a stranger. I know of one person who can't have the vaccine for medical reasons, so who has no protection, one person who made no antibodies even after two jabs, so who has no protection, and me who was officially classed as medically vulnerable at the start of this hoo hah and I can't see what's changed to somehow make it all OK now.
Good to hear that you are still around, albeit with no sense of taste. That is a real bummer. At least with my medieval treatment programme of venesections and aspirin I can still taste things. I had my two Astra Zeneca jabs in the spring and am going for a shingles vaccine in a couple of weeks time. No idea why, but if the health service is handing out free vaccines (of any kind) I'm your gal.
Since we last "spoke" you have had a new president installed in the White House (not without some melodrama). And as a result I have been deprived of any new songs by my all time favourite satirical song writer, Roy Zimmerman. He had a deep and rich source of material to mine with Mr Trump and his administration. He's been very quiet since the unmockable Mr Biden arrived. Do you know his work? If not, there's a lovely one relating to the American healthcare system called "Dear Number 1036924053887" - you can watch him sing it on YouTube. He's my hero!
Keep well (well, wellish).
justin23294 angela_o..o
Posted
Good morning Angela. Afternoon UK. Thank you for responding .A little bit about the last 3 years. Lost food taste on Hydroxyurea. Switched to Anagrelide 2yeasr ago. Taste improved for a while. 3 weeks ago went back to hydroxyurea. First 2 weeks, taste came back. Now gone again! I give up! In the mean time, last year I needed a pace maker. I feel OK ! In March my wife and I had our Moderna shots. They are free here too. Luckily we have good health insurance. Although the supplements to Medicare are expensive. luckily we can afford it. . We still wear our masks when we go out. We believe in science. We do not take chances. Now for politics. Thank God this lying carnival barker is out of the white House. I can't even utter his name. Thing are running smooth. We finally have a descent human being as President . As for Roy Zimmerman, I'll look him up. Keep well and keep in touch.
justin23294 Tills
Posted
.Hello Tills. Six years ago I had a blood clot on my lungs. 4 days in the hospital. lot of blood thinners i was able to survive! A few months later my blood tests showed my platelets went up to 700. 140 to 450 is the normal range here in the US. After a bone marrow aspiration i was diagnosed with ET. Essential thrumbosthimia. with the jak2 mutating gene. I was put on Hydroxyurea . In a few months, my platelets came down to normal. The problem was that after a few years, I lost my food taste.. Two years ago I ask my Dr. to change my medication from the Hydroxyurea to Anagrelide. My food taste improved some what. But, for the last six months my taste has almost gone. Now I'm back on Hydroxyurea but, my taste is just as bad. This has been horrendous. There is no life enjoyment! But at 85 what more can I ask?
Tills
Posted
Oh Justin,
Your words made me sad. I am so sorry that you feel that there is no enjoyment in life. May I send huge virtual hugs to you - at least they are safe! 😁
I know nothing about these wretched blood problems so can't offer advice to anyone but am grateful to those who are experienced for their advice and contributions.
I still do not have a diagnosis. It is taking forever. I decided to "Save The NHS" (a UK mantra) and go along the private route. I am being bounced between hospitals at the moment and have yet to find a consultant who will accept my doctor's referral. It has been so difficult that I have almost reverted to the NHS and just wait patiently for months.
Words like venesection are being muttered but before I go along that path, surely I need a diagnosis?
Have doctors any idea how stressful it is waiting months for something to happen?
justin23294 Tills
Posted
Hello Tills .Thanks for you reply. I feel for you for not being able to get a referral . Here in the US there is no problem getting a referral If you have good insurance. We over 65 are very lucky to have Medicare. There are two choices .You can choose Medicare that requires no referrals and you can go to any dr. that accepts Medicare. You just call a specialist and make an appointment. The only problem is that Medicare alone has lots of deductibles and you need to buy expensive supplement insurance. Or, you can sign up for a Medicare advantage plan provided by a private insurance company . Some with no premium. (The premium is paid by Medicare.) But, you have to go to Doctors on the network and need referrals with some deductibles. So. you have a choice. I think you need to see a hemothalogist .I have a great hemothalogist. He always answers my Emails! I just see him a couple times a year. Lot of luck to you.
Tills
Posted
Hi Justin,
First, my apologies for the late response. I haven't had a phone line or Internet access due to a fault on the line which, although now connected is not stable. In the village where I live, the mobile phone service is virtually non existent!
I have medical insurance and had approval for a consultation with a Haematologist but I couldn't get an appointment before October. I elected to go with the NHS and will see a consultant next month. Watch this space! 😁
All I hope for is to feel better.
Lynn
nancy86894 Tills
Posted
I am 68 and discovered by chance that I have Polycythaemia last June after a routine blood test. My readings were so high that I had to be admitted to the hospital as an emergency, it was an incredible shock. Since then, it's been confirmed that I have the JAK2 gene, I have been on Aspirin 75mg daily, Atorvastatin , as for some reason my cholesterol had jumped up too and I've had nine venesections. I was also put on a very strict low iron diet, which has been very challenging and I have lost a stone. The good news is that my RBC has dropped a lot and my HB has too but as a result of PV and the numerous venesections , my platelets have shot up to 673. I have had a consultation this week with my consultant who has been quite firm about the fact that I need to start the chemo drug Hydroxycarbamide. I was offered this a couple of months back, but I opted to go down the more conservative route at that time, now I don't really have a choice. I took the first capsule last night, the side effects can be awful and can even make things worse than they are right now. I am feeling pretty low psychologically, I feel as though things are going from bad to worse, and the future feels bleak. I have a wonderful supportive family and six loving grandchildren, and my medical team are great and they have reassured me that this treatment is the right way to go, but who would ever like the idea of filling their body with poisons . Does anyone else with this disease feel this way? I could really do with a bit of input from fellow sufferers right now.
angela_o..o Tills
Edited
Hello Nancy,
Sorry not to have posted a reply sooner but I only just saw your question today. I used to get notifications of new posts, but no longer.
Do you live in UK? If so, I think that your NHS treatment is based on your age. I was diagnosed by accident when I was 65. I'm 70 now. My diagnosis wasn't quite as dramatic as yours but I was pretty ill (without knowing it).
They tried, because of my age, to persuade me to go onto the drug regime with Hydroxycarbamide. I said that I would rather not do that. They offered me aspirin and venesections. I agreed to that.
So far, things have been OK. Not ideal in the sense that my readings are all way over the top. Red blood cells, white blood cells and platelets are all far too high for most of the time, but I feel fine.
I suppose we are all different and react to things differently. If the treatment that you are receiving is making you feel low both mentally and physically, tell them. Ask for a change of plan. I personally can't see the point in living a long life if it's a miserable one, but that's just me.
Good luck.