Hi there, I recently had some blood tests done and my Haemoglobin results came back as 198 (I'm a 40 yo female). After multiple tests (my dr didn't believe them), they finally tested for Jak-2. I've waited 3.5 weeks and have just had a text from my doctor to say that the blood tests are back but don't give the whole answer (to her at least) and so she's contacted the haemotology consultant to review the results and I'll have to go another week. When I phoned to ask what the results were, they refused to give them to me. I'm slowly losing my mind and would love to hear if anyone has experienced the same?
Thanks, Mel
Written by
mkentish
To view profiles and participate in discussions please or .
I have never experienced a refusal to release the results. That is a violation of patient rights. Those are you results, not the doctor's. Just because the doctor does not know what to make of them is no reason to withhold the results once they are back. The proper thing to do would be to release the results to you with the advisement that there are questions about how to interpret them.
This sort of paternalistic behavior is not acceptable. It also does nothing but make the anxiety worse. Assertive patients receive higher quality care. Passive patients do not. If you want to know the results now, even with the attached uncertainty, then insist that they be released to you. this is your right as a patient.
Thank you so much! I suffer with anxiety as it is and the last time that I spoke to the Dr, she told me not to call her and basically made out that I'm a nuisance (I'd only phoned once to tell her about additional symptoms) and so I find it hard to push back on her but you've given me the oomph to do it! Very grateful!
I would fire the doc and get another if this sort of problem continues. Doctors work for us, not the other way around. I value a collaborative relationship with all my my docs and work to have a positive relationship based on mutual respect. When a doc is not willing/able to treat me with respect, I replace the doc. Always.
Thank you so much! I finally got the results and they show that I am Jak2 Negative but EPO suppressed, so the doctor is baffled. Hopefully the Haemotologist will be able to shed some light.... I hope that you're well
With this profile it is very important for you to see a MPN Specialist, not just a regular hematologist. While is matters for all of us with MPNs, when you have an unusual MPN profile it is really important. While about 95% of people with PV are JAK2 positive, about 5% are not. There is a very small subset of people with PV who are CALR positive. There are other mutations being looked at in research, but are not in clinical practice.
I would imaging you would be doing a bone marrow biopsy next. You may also want to look into doing a MPN Myeloid Panel to look at an entire range of driver and non-driver mutations. Here is an example of that type of panel.
I do hope you can get ready access to a hematologist with the specific expertise you need. It is always desirable to ask the hematologist about their expertise regarding MPNs, including how many MPN cases they have treated, what specific training/expertise they have regarding MPNs. Here is a list of docs with the needed MPN expertise. mpnforum.com/list-hem./ .
Please let us know what you learn as this unfolds. We can all benefit from the knowledge you gain.
Hi Hunter, that’s really interesting re Myeloid Panel. At the moment my blood counts and iron are on the anaemic side of normal and I’m getting a bit concerned because of increased night sweats, gland discomfort in neck, symptoms of Sjögren’s syndrome which remain not proven (I.e. dry mouth, eyes, etc) and spells of low grade temp rises - up to 37.9 max. I’ve also had my spleen checked a while ago as I have intermittent pain under left ribs but nothing abnormal. I still have the fatigue and itchy skin.
I have a GP phone consult next week and I’m starting to wonder if I should ask if I can see a haem again. I was rediagnosed with idiopathic erythrocytosis, rather than PV 2 years ago, have never had a BMB, jk2 and jk Xeon negative. The fact that hematocrit is remaining low, perhaps I should be grateful for but a bit concerned as it is a change in my symptoms for it to stay as low for so long. It’s been 2 years since I’ve had a venesection which is unusual compared with the period from 2012 to 2019.
You are symptomatic so seeing the hematologist again should be a no-brainer. It really needs to be the MPN Specialist. Given you may also have an autoimmune disorder, I would think seeing an Immunologist and/or Rheumatologist would also be in order. Getting the docs to work together might be a bit of a challenge. I find it highly unlikely that these things are unrelated. The JAK-STAT pathway is involved in both hematopoiesis and immune response. You may need to push get a care team that will collaborate. Hopefully they will reevaluate your status at this point. Look at EPO and all of the potential relevant mutations that may explain what is going on.
Regarding the gap in needing venesection, I experienced something similar. I went for 14 months without venesection after I was over-phlebotomized. My iron levels got so low that ferritin could not be measured. My rather KISS explanation is that when you get that low on iron it takes a long time to recover. Our bodies are grabbing all of the available iron to make RBCs, leaving none to store. If you take enough iron then your body will store it, but also make a bunch more RBCs. I hate taking iron supplements, so I did not take them after a couple of weeks. Am actually looking at taking PTG-300 (clinical trial) as an alternative at this point.
Blood wise yes thank you. My red blood cell count appears to be staying down at moment. Joints, bones, etc are a pain but need my exercises in the hydrotherapy pool to help that so will just have to wait!
Keeping myself busy with grandkids, volunteering and working with care experienced youngsters, jigsaws, etc.
Does anyone else ever feel like their veins might explode? My dr won’t even see me in person... but this can’t be normal? I don’t want to be a nuisance but I feel so unwell....
They haven’t tested any vitals. I checked my own at home with a machine and it was really low which I’m presuming is the opposite of what you would expect?
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Newly diagnosed ET Jak 2 pos. 
E.T. JAK 2 at 90 years of age
Jak 2 positive ET
