New to this part of the forum... I've recently met some wonderful helpful people on some of the other forums here at health unlocked though and very glad I found you all.
I'm chasing some major issues I'm having (all in my bio), and I'm narrowing it down all the time, but on review of my blood results I've recently learned of PV.
I've attached a picture of some results from a recent FBC... (Will also drop additional images in replies as I can't seem to add multiple images at once). Do these look like anything I / the GP should be investigating further in regards to PV?
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Entwicklung
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I have been there before where you know something is wrong but there do not seem to be any clear answers. It takes a methodical process of tracking issues and ruling out causes until an answer is found. Patience and persistence are essential.
Some of the symptoms you list in your bio are consistent with PV but are also consistent with a number of other things. Note that anything that induces hypoxia will increase production of RBCs. You could request a MPN Myeloid panel that would test for the three driver mutations, but it seems likely that the results would be negative. If it would relieve your mind to rule it out, it may be worth pursuing.
Something is definitely wrong but as you say l, exactly what it is seems to be quite a puzzle.
I'm working on ruling things out at the moment with some logic behind each decision, but probably driven a bit too much by desperation to be considered methodical.
Again, very much appreciated the honesty, particularly towards the PV. Would the Haemocrit, haemoglobin and white cell counts need to be significantly higher to even suspect PV? In terms of hypoxia, I feel I'm generally a bit low on the O2 saturation compared to others (maybe around 96%), but well within 'acceptable range' as such.
I have very similar symptoms to yourself and were a very similar age (albeit I’m 4yrs older)!
I have ET, Cystinuria (kidney disease - my body likes to make cystine kidney stones) and osteoarthritis. My health has been declining over the past couple of years, with many colds that rapidly turn to chest infections, fatigue which is debilitating at times and certainly not helped by the stress of working 30hrs a week and juggling child needs! I’m n March I also had a seizure (had one 18yrs ago the day my daughter was born- this we now know was likely due to the ET having not been diagnosed). My oxygen levels also dip more so at night, more so when I’m really not good they’re between 83 -90% generally they’re above 93% so fine, a low RBC isn’t helping this at the moment!
I have ridiculously low b12, folate and ferritin too, which certainly isn’t helping, I’ve had b12 loading doses and seem to be reacting to them and anything else that enters by body (insect bites result in infections around the entry site, I also reacted to regulated interferon used to treat ET (again around the injection sites). my Haemotology team saw me this week and are concerned about possible Coeliacs disease. Having done more research it seems that this could well be a possibility and accounts for a number of my symptoms. I was also tested for Lymes disease, I was just wondering either of these options have been explored (I suspect they may have been given the medical teams you have involved.
I’ve recently been listening to Miranda Harts book ‘I haven’t been entirely honest with you’ it’s fascinating and actually helping me think about how I could cope a little better. She’s been struggling for decades with ill health (very similar to ourselves) and was diagnosed with Lymes disease a couple of years ago, caused by a tick bite in her teens. Highly recommend it as an easy book to read and very relatable with some good tips from the research she’s done. I hope you find some answers, our bodies are complex and so unique, if only we came with a manual!
Ah thanks very much for the response Trocken , this is super helpful. Interestingly, your the second person to mention Lyme disease this week and it's something I hadn't ever really heard of. And thanks for the book recommendation too - I'll have a look into this as it sounds useful.
I do hope your symptoms/health issues improve soon and you feel better. Just on the off chance I'll mention this... My breathing was so bad at one point I was on steroid inhalers for some time. I don't like to take meds so it must have been bad for me to use these inhalers. I particularly couldn't sleep at night and needed an inhaler several times a night. Bad. Anyway, fast forward a while and somebody suggested allergies... I doubted it but when you're desperate you try new things so I bought a spray that takes dust, pet dander and allergens out of the air. I also bought levoit air purifier (it was like £90 so a big purchase) in desperation. I used them and within a couple of days I could breath again, even at night; you would not believe the difference! I don't use any inhalers now and I have two of the purifiers, one for the bedroom and one for the living room. They are magic. (For reference the spray and purifiers are on Amazon, let me know if you want further details... I wasn't sure if you could post links on here for items to purchase).
Do update us if you make any breakthroughs with your health and I'll do the same ⭐
hi Entwicklung, I am sorry that you are having health issues, and understand your concern and wanting to have some answers, you should discuss your test results and your concerns with your GP who is best placed to advise you on the next steps. I am sorry, but the members on this forum are unable to advise you on what your test results indicate, this needs to be discussed with a medical professional. Best wishes, Maz
Well, in principle I agree with that statement. But in honesty,everything is discussed with the GP on a regular basis but the response (or lack of) I've had from them is not helping so I'm inclined to disagree with you there. There is a lot to be gained from the wealth of information and personal experience on forums such as this.
Of course, I understand why that needs stating in places like this. It's just a shame that the GPs don't seem to have have the time, energy or inclination for problem solving these days, hence people turning to online sources for ideas/information.
Looking at your bio, you should ask you Dr about a complete check for all plausible autoimmune (A-I) conditions. For example near all of your Sx are a good match for Sjogren's. POTS is one red flag. It's not likely esp as you are a male, but Sjo is vastly under Dx'd and is worth ruling out. The mention of Lyme got my attention since this is often part of some A-I workups.
Hey friend thanks so much for the suggestion, I'll have a look into this. I did have some autoimmune tests a couple of years ago.dring a flare up... ANA rings a bell but I'll need to dig out the records for any certainty. Definitely an avenue worth exploring so thanks once again.
As Mazcd notes we cannot give medical advice as a matter of site policy. But we can suggest questions to ask of a medical professional and/or a path to find a proper one.
But you're also right, finding one who has time and experience for our rare conditions can be hard. I know well, Sjogren's is poorly understood by lay and pros a plenty. So the informed patient has best odds of finding the right professional.
If the term "flare up" has been used for your condition and A-I tests ordered, that suggests Dr suspected something A-I related. Flare is a common term of use for these as opposed to for example MPN where conditions don't usually change that fast. Most Sjo pts have positive ANA and it can be a broad marker for various A-I. SS-a is a more specific test for Sjo, and is worth asking Dr for. But still ~30-40% of Sjo pts are negative SS-a.
For your info on MPN, you can see this 2016 MPN criteria that your Dr should be made aware if not already. It's not the only reference for the Dx but is a standardized one.
Table 1, partial image here, indicates you just meet the 2016 PV criteria for Hb, but would need a biopsy to confirm it by this reference. You could also ask your Dr for the Jak2 test. I hope your GP also will give you a rheumatologist referral.
Hey EPguy, your reply here is so so helpful, thank you!
This is exactly what I need, ideas to discuss with the right medical professionals. The problem being that they naturally aren't as invested in finding a solution as I am.
The guidance there is very useful thank you - I'll discuss this with the GP as soon as I get some results from my current investigations. Even if something shows, I feel this is still worth investigating. I need to do some research to see how my figures for Hb etc could be from a knock on effect of something else. If that makes sense.
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Update and few questions because i have no reliable sources 
Learning to live with ET and PV in California 
Why have I now got anemia?
Free prescriptions ~ expensive. Do I need proof of PV link?
Good news and possible bad news 
