***Firstly I would like to thank everyone’s input all much appreciated.
I can confirm that I have an appointment to get bloods done tomorrow at 11:30 and have secured the first appointment available with Dr Drummond MPN specialist on 10th October.
On attendance for bloods I will get to the bottom of making sure I get results either sent to me or be told where I can access them.
A productive morning 👍
Once again thank you, Linda ***
Hi Everyone
I was diagnosed with PV February 2022. My Hg started at 19.1 and HCT 0.609. I immediately started on aspirin and venesection (5 in 2 weeks) After the 5th venesection I was Hg 14.1 and HCT 0.442. I also had a BMB done end March.
My next appointment was a telephone consultation which I had bloods done prior to the call 19th May - Hg 13.9 and HCT 0.456. This appointment was a disappointment to be honest as the consultant said BMB was “fine” and let’s see what bloods do by themselves and have a face to face appointment in August.
I see from other posts that others have lots of information on the blood tests that they have had run but the above numbers are all I have. I phoned the haematology secretary to ask for results but she seemed unsure whether they could be sent out. She is checking and getting back to me.
The question is what should I be receiving in the way of results,
I have a face to face appointment with haematologist 30th August and need to know what to ask as I am totally lost now. I have also requested a private consultation with MPN specialist to which I am awaiting a reply.
Any info greatly appreciated.
Kind regards Linda
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Hocus58
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Hi, Whether it's a consultant or clinic nurse appointment, face to face or by telephone, my blood results/discussion are always sent by letter to my GP and I get a copy of the letter for my records through the post. My results usually include: HCT, HB, platelets, white blood count, neutrophils and ferritin. Plus a section on bone chemistry Tec that just says were in normal limits. I would have thought it was standard practice to issue you with a copy but maybe it depends on individual health authorities.
Thank you for your response Cakeface. I shall give the haematology secretary a ring back on Monday. So I take it from what you say that on any occasion results are sent to your GP ? Did you request that you were copied into all correspondence or was this done as a matter of course. Whichever sounds like your Health Authority is on the ball. Thanks
It wasn't by request, it's been the case since my first appointment after diagnosis. It's information about you and your health, in my opinion you should be privy to it.I'm in Darlington and Durham authority
I. Am Exeter UK area we have an app on mobile that I can get my blood results from however they should send letter but never have & obviously just email GP . My high platelets were left with no attention because I had no idea of the readings. Always told bloods fine. However now I have access I see my platelets started rising in 2016 with observations next to them . But GP never informed me. I discovered that I had ET Jak2 in March 2022 because I pushed for bloods with a slow healing sports injury. But I really mean pushed !! 6 times I asked & got poor response to why I needed bloods done !! My platelets were then 590 sent to Haemotology immediately . I have since read up everything I can find on the MPN websites to increase my ability to question things that I had no idea about before. But I saw Haematology March & now not till August but just a locom stand in ….. on aspirin daily & was HU but reacted badly so nothing currently. Trying to get appointment or email for MPN now who know more . 👍
Hello Linda - soz I’m not PV but ET since 2015 + added lymphoma since 2018 - I’ve always had a bit of a fight + always ask to be sent my full results (though I do get a copy of the letter they send to my GP) - I usually give them ‘the benefit of doubt’ for a week or so then email the haem office requesting a print out of the full pathology report - the benefit of that is that any results out of range are asterisked (if mine are ‘there or thereabouts’ I’m not concerned, but I do want that information to monitor myself) hope you get a good consultation when you see them + get a treatment regime to keep things stable. Very best Anne-Marie x
Thanks for the response Anne-Marie I will need to get to the bottom of who to ask for these results. I am in Scotland and I’m sure the UK as a whole don’t have one system fit all. Probably not even all health boards work the same.
LindaYour quite right to be looking into your treatment and asking advice.
Your Hgb and Hct were very high at diagnosis so you are obviously quite prolific, therefore I am nervous that your Haem has said "lets se what the bloods do by themselves" and have a consult in August. For someone who is so prolific (dont worry its very treatable) August is quite a long way off. I have had PV for 12 years and still check my bloods every 3-4 weeks. Also your Hct is still over what it should be at 0.456 in 19th May, men should be under 0.45 and many haems say women should be under 0.43 (although I am not sure that is recognised by the NHS yet). I am concerned about what your Hct is now as its likely risen since 19th May. If you havnt had a blood test recently I would get one asap via your GP or Haem. (remember to try and get it done at the same time of day if poss as it can vary and make sure your sufficiently but not over hydrated as that also affects Hct counts) and if your Hct is over 0.45 definitely as for another venisection. Thrombotic risk rises exponentially once Hct is over 0.45. Its good your getting a consult with a expert MPN Haem , hopefully they can work with your local Haem.
I dont mean to worry you by what I have written but its concerning your Haem doesnt seem to be acting on the very basic rule that Hct should be always kept under 45 or 43. It of course is better to be safe than sorry so I have not sugar coated it.
I get a printout of my full blood count from GP office and keep them all and also keep all the data on a Excel spreadsheet so you can see easily all the results and dates.
Thank you for your response Ainslie, this has made me even more concerned. I don’t have an appointment with the MPN specialist as yet I am still waiting on a response.
I do think it is unacceptable to be told the BMB is “fine” with no other info but at the time of the telephone call I assumed they would go through this with me and didn’t know what questions to ask 😥 maybe my fault.
Is your bloods done as a matter of course every 3-4 weeks is this normal practice ?
Some people go longer than 3-4 weeks for a blood test but at the stage your at 3-4 weeks would be absolute max until your counts are under control and stable, if your venisecting only then they should be 3-4 weeks max, if someone goes on meds and are very stable then some go longer between blood tests.
My experience of NHS haems is that they tend not to give an analysis of the BMB, to be generous to your haem he may have means its standard for someone with PV. However, my advice would be to not get too bogged down in the BMB analysis at this stage and I have to say 12 years on I cant read a BMB correctly, however I do have experts I consult periodically who can explain what they mean. If you are seeing a MPN expert take a copy of the BMB to show him/her and even better at some stage you can ask for a copy of the slides to be sent to the expert as one hospital or haem may have a very different opinion of what the BMB slides show.
But for now the priority should be to check your blood counts and get the Hct down to where it should be and you will probably need regular venisections and maybe one now to get the Hct down. Usually the NHS likes to people on meds when over 60 because they reckon we have increased thrombotic risk after 60 no matter how fit we may be. If you are healthy and fit and no history of thrombotic type issues then there is maybe no great rush. My sister is 67 and currently on venisection only. The NHS like to put people on HU but as Hunter has pointed out there are alternatives although in the UK it is quite hard to get on Rux unless you have failed on the other drugs or have extreme itch. Best not worry about that too much as there is time to consider all that. Your Haem doesnt sound ideal so if you have options that maybe something to consider. Having a good haem and maybe a good haem nurse and access to a expert from time to time for advice on the master plan is very important, the better the team you have the less stressful it is for you.
Absolutely you should have copies of all your results, including BMB report. You’ll probably need to make it clear that you do want to see them as not everyone does.
Is there a CNS (clinical nurse specialist) in the haematology team that you can contact? They are usually very approachable, knowledgeable and also very understanding about their patients’ concerns.
When faced with a new diagnosis it’s overwhelming and also difficult to know where to start if information isn’t forthcoming. Read up what you can from reliable sources (eg: MPN Voice) and that should help you with the questions that are important to you. The August appointment will be a good opportunity for you to clear the air and get answers to those questions.
Having an MPN involves a lot of monitoring so you will be getting to know those treating you. It’s important you are able to trust them too and if you aren’t comfortable with the way it’s working out then it’s possible to change to another team. At the moment you probably have enough in your plate getting to grips with a new diagnosis and understanding how it all works.
Thank you for your response Rem31 much appreciated. I feel as if I am being left to get on with it. So I am going to be more assertive and phone again Monday the haem secretary and get to the bottom of getting results.
I am in Scotland, not sure where you are in UK just wish we had one system in place fir all 👍
The most basic answer to your question is that you have a legal right in the UK to everything in your medical record upon request. I believe that there is a 21 day limit on processing your request. It is quite concerning that any medical practice would not be aware of your legal right to access your own record. patients-association.org.uk...
Here in the States, I have direct access to all of my labs and reports through the patient portals that each practice maintains. Others from the UK have reported that some but not all practices do have patient portals. Apparently they are not always well advertised. It is worth checking into as that may permanently resolve the issue.
You deserve a very detailed explanation of your BMB results including: driver mutation detected, non-driver mutations present, levels of cellularity and fibrosis, etc. To just say that it is "fine" is unacceptable.
You are not at the target HCT for a female with PV (HCT<42/43%). Standard procedure is to get your HCT to target within a reasonable time frame. At age 63, it is also standard procedure to initiate cytoreduction with one of the interferons (Pegasys, Besremi) or hydroxycarbamide. Jakavi is also used in certain circumstances, You will need to research each of these choices to make a decision that matches your treatment goals and risk tolerance. this is a decision that you will need to make in consultation with your provider.
It is very important to consult with a MPN Specialist. Most hematologists do not have the ability to provide optimal MPN care due to how rare these disorders are. The explanation you have received thus far is quite inadequate. You cannot form a proper treatment plan for the PV without enough information to make a valid decision. I would suggest switching to one of the MPN Specialty providers available to you in the UK.
I agree with you that to say BMB is fine is not acceptable. I did expect them to fully enlighten me about the BMB on the call and didn’t know what to ask, so maybe my fault I didn’t ask 😥 As you say assertive patient’s receive better care.
Thank you for the links regards the UK and getting medical records. This link is for England I live in Scotland which appears to be different, who knew we can’t have one easy access system in the UK.
if you are in Scotland, if you can see Mark Drummond he is very good and will advise wisely. He is NHS Glasgow and consults privately in Edinburgh. He might have awaiting list though. Scotland seems short of good haems currently, I am in Edinburgh and currently I dont have a NHS haem, the last one was temporary and hired in, the previous full time one left 2 years ago and apparently they cant find a replacement. Fortunately I have private ones that I can consult.
Thanks, I have requested a private consultation with Mark Drummond at The Spire in Edinburgh just waiting on them getting back to me. Only completed the online request last week I suppose they are busy and as you say I expect there will be a waiting list.
I will confess that the inconsistencies in UK law are a mystery to me. Expect it is like the difference between the States in the USA.
It is a Universal Truth that assertive patients receive higher quality care. Passive patients do not. I go to all of my appointments with a written agenda. I have a copy to my provider. This is what the template looks like.
Treatment goals:Define for your doctor what your priorities are. Can be very specific at times. Two broad categories are Quality of Life and Length of Life. Which is more important to you? How do you define quality of life? What are you willing to do or tolerate in order to extend your life? These are some examples.
1. Extend quality of life. Samples – what matters to you?
A. Protecting cognitive function
B. Protecting vision, hearing, other senses, and mobility/physical abilities.
C. Philosophically – is it better to get less tx benefit and preserve QOL with any tx
2. Extend length of life Samples – what matters to you?
A. Always extent length of life/preserve life vs only extend life when QOL is acceptable.
B. Do you have an Advanced Directive and Medical POA. Are there circumstances under which you do not wish for life to be preserved? Does someone know your wishes?
Which is number 1 and which is number 2 based on your priorities?
Treatment ApproachDefine what your approach to treatment will be. Make this specific to your treatment preferences. ALWAYs tell your providers all the interventions you use. These are some examples.
1. Combine Western Medicine with alternative/complimentary healing methods. Do you want to include complementary health approaches? Acupuncture, supplements, Qigong, etc.
2. Rely on evidence-based practices.
3. Weigh the benefits and the risks of any treatment option.
a. Don’t make assumptions. If something can help you, it can also hurt you
b. Pay attention to how treatment approaches, medication/supplements interact
4. Look for underlying cause and links between medical issues.
5. Standard tx protocols are not always the correct approach for any specific person. Individualize tx based on individual medical profile.
6. Holistic treatment - Treat the whole person, not just the parts.
7. Use MPN-Expert Consultation to inform MPN tx & on other tx needs (e.g. surgery)
Rare disorders require specialized expertise. Not all doctors have this expertise. Make clear your intention to require collaboration with the experts on your care team.
Updates/Issues/Questions
1. Write out the symptoms and issues you are having and a list of your questions.
2. Always include a holistic review of what is going on, particularly with specialists.
3. Only give updates/changes to an existing provider. Do focus on what is relevant for this appointment
Treatment
1. Review all treatment options – let the doc know what you are doing now and seek input on what else to do next.
2. Ask about ALL options, not just the one the doc recommends. Ask the doc to explain why the recommended option is better than other choices.
3. Ensure that it is your goals and preferences that drive the decision about your treatment. This includes your own risk tolerance and what risks you prefer to take.
Hope you access all of your records ASAP. this is a fundamental patient right. I doubt that it is any different in Scotland. I also hope you access appropriate MPN expert care. This is also a right whenever that care is available.
One step would be for every patient in Northern Ireland to show up with a clear agenda for every appointment, demanded an appropriate level of care, formally complained when appropriate care was not provided, and held providers and the healtch care system accountable. Accepting inadequate care allows it to continue. It takes everyone working together to make change happen. Changing a system of care is not easy but it can be done when there is a will to do so.
Wishing all of you in Northern Ireland all the best and access to the level of care you deserve.
Held to political ransom here, they want their demands, even the health care of their own people being denied, plus the pandemic period's lack of basic health care being denied during that period, a morbid time for all of Northern Ireland!
There are three blood counts that are basic to MPNs, you have Hb/HCT which is one of these. The others you do not have are platelets (PLT) and white blood cells (WBC) including the types of WBCs. Even if these are ok now, you want to have these results for future reference if they change. You should get better feedback for your MPN specialist including even more blood results that are worth having, for example EPO levels are good to know with PV.
For your BMB as others here have said, "fine" is not fine. My BMB showed results typical for ET. If you have PV yours could have this type of note:
"Hypercellular marrow with panmyelosis (increase in all three lineages, megakaryocytes, granulocyte, and erythrocytes)"
If yours is all normal and there is nothing like this note, that is very good, and also worth knowing in detail. It means your marrow is in good shape; most MPNs have some sort of marrow defect.
Another result you should request is your Jak2 allele burden (AB%) This is roughly what portion of your Jak2 genes are mutated. If you had BMB they likely measured it there, or they got it from your blood test. It will be useful to know for comparison as you begin your treatments. For example interferon, and to a lesser extent, Jakafi, can reduce this AB which is desirable to do.
Hi once again truly great advice, I really appreciate everyone taking their time to respond.
I am requesting on Monday all of my results. This should give them time to get them to me before my consultation in August and allow me to be armed and prepped to ask the pertinent questions.
I cannot express how much everyone’s input has helped.
Hi Hocus,I was diagnosed with PV in 2021...my blood results are lower than yours, and at diagnosis I started 2 weekly venesection, and signed a consent form to commence Hydroycarbamide, which I did a month later...I was 55 at the time. I had had episodes of numbness, and was tested for possible TIA before this...and they decided no TIA, however, the haematologist thought it was likely linked with the PV. I also had multiple symptoms.
I'm pretty sure I was advised to have bloods 2 weekly at that point, pre possible vensection and then monthly when things improved. Then afterwards ...pre possible venesection and pre consultant review.
Your GP surgery should always have access to blood results that the hospital request even though they don't go on to the NHS app. A helpful receptionist is able to print them off for you at the surgery I believe. Also ensure you ring the haematology department and ask for the haematology nurse specialist contact no. They will likely send you your results on request.
I too received suboptimal care initially, but finally after 9 months I am seeing a consultant who appears more knowledgeable, and she is continuing to see me at present for continuity x
If I hadn't pushed for things myself I would have fallen off the review list completely, as when I phoned a follow up hadn't even been put on request.
I would suggest you ring urgently to discuss your concerns with your GP...and ask for a repeat blood test ASAP.
Good luck with everything moving forward PS I'm now on Pegasys Interferon and feeling better than I did on HU...but different people are better on different medication, it's no one size fits all x
Hi I am also in Scotland and under Mark Drummond an MPN Specialist who is amazing and is based from Beatsons in Glasgow although I see him privately in Edinburgh. Like the others here 100% ask for copies of ur bloods. I get mine taken at the GP a week before my appointments and they send me and Mark the results . Whether it is phone or face to face allows me the chance to analyse them and ask my questions at any appointments . Good luck
I email my haematologist’s secretary after each blood test asking for my results and they email them back without a problem. You are entitled to them. I think they feel some patients will worry if they see something they don’t like but insist and they shouldn’t say no
Hi you must ask for your blood test results. You are entitled to them.You can down load them from the NHS app too. I keep a copy of all my blood tests now.
The advice from Hunter, EPGuy and others is spot on, as usual. Just a couple of additions from my own experience and what I've picked up. I was diagnosed with PV Feb 2020 (I'm male, 70, in England).
1. You have a right to know your blood results. Don't rely on being told what the medics choose to tell you. I always ask for HCT, RBC, WBC, PLT, HGB and MCV but I think what is measured will vary from location to location. Scotland may also take a different view to England. My hospital doesn't bother to routinely measure iron or feritin etc. when I think it should which I'll be raising at my next clinic discussion (recently I was found to have very low iron levels).
2. Whether results are visible via the NHS app or any other means may depend on who initiates the tests. Mine are done by the hospital so very little is fed back to the GP system (they are separate and not linked) which I access via SystmOne, except what is put on the hospital summary letter back to the GP. There is no online access to the hospital results, I have to ask at every clinic discussion.
3. Frequency of blood tests will probably vary depending on where you're at in the management of your situation. Early on I was having a lot of venesections and so lots of blood tests. Now they are every 8-12 weeks depending on the previous results and current dosage of hydroxycarbamide.
4. When you next speak to the haematologist, check out how much they know about MPNs. You do need to speak to someone who has good knowledge of the situation.
5. I've never had a Bone Marrow Biopsy, the view in England seems to be don't do it as a matter of course but that could be different in Scotland and may well vary depending on the medic. To be told the results were "fine" is rather meaningless and why did they do it in the first place? Were they checking for MF? They should explain more, what they were looking for and what they found.
6. Be aware with all this blood test stuff that results can move around for no apparent reason - which the medic in my last clinic discussion finally admitted - so individual test results may not be as significant as trends. You though would do well to keep track of the data so that you can see the trends rather than the medics just react to one set of results. It's also useful early on to monitor other factors such as diet, lifestyle etc. as they may have in impact of blood results. Level of hydration can have a big impact on blood data.
7. As Hunter rightly says, those of us that take an active part in managing our situation tend to get better care than those that just rely on the medics deciding things and only telling us the bare minimum. We have to be better informed to do that so do read up on all the available information including that circulated in HealthUnlocked and maybe look back at the MPN Voice forum recordings available via the MPN Voice website.
8. Finally, you can always ask for a second opinion preferably to one of the people already identified here.
I was diagnosed in January 2022My platlets was 1123 also my white platelets was high I only every had 1 face to face with consultant. I was given a key worker who I can contact anytime.
I am currently on hydroxycarbamide tablets 2 in day 1 the next. Now its 547 my count. Xxx
Certainly not armed conflict!! That would be awful. Northern Ireland has been through way too much of that. The violence targeting innocents was and is despicable. I am sorry if the cartoon gave that impression. I DO NOT advocate violence.
What I do advocate is that no one should ever tolerate inadequate care from a provider or a healthcare system. We also see way too much of that in too many places and in too many systems of care. Our friend Adlon57 and others in Northern Ireland have posted experiences with their healthcare system that reflect deep problems that need to be resolved. The revolution that is needed is reform of a healthcare system that is not responding to the needs of its citizens.
Apologies again if attempting a bit of humor came off wrong. We all need and deserve appropriate and responsive healthcare. We need to hold providers and systems accountable and advocate for change when needed. The revolution that is needed is accountability and reform.
All the best to everyone and wishes for peaceful resolution of our political problems.
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Update from a PV Newbie
Confused about diagnosis
Change HCT behaviour- No clear explanation
PV progression?
