Frustrating Appointment

[Skyehope]

Good Morning All

I hope you don't mind if I vent here as I know others have experienced the same sort of thing but I just had a very frustrating appointment with my haematology department. I have PV, diagnosed in Jan 2017, been on aspirin for years and interferon for nearly 14 months.

I mostly see the same haematologist nowadays, except now and again, which is absolutely fine, and in general everyone I see is very nice. Todays appt though was with a person I have only seen once before, at diagnosis (age 39), when they told my husband and I that having an MPN was fine, I'd have no problems, and wouldn't need any treatment until I was 60 apart from perhaps some aspirin. They totally dismissed all symptoms which had led me to the diagnosis as unconnected.

I was very upset after that diagnosis appointment because I knew there was far more to the condition than waiting until I was 60 (I had done research as we suspected an MPN) but they did not give any detail or explanation about what an MPN was, potential risks or anything.

Anyway, today, I had psyched myself up to confess about how exhausted I've been lately (even with sleeping about 7.5 hours a night), how I've had headaches and also the bald patch I discovered a couple of months ago (I had the same a few years ago likely triggered by stress). I was hesitant today, given who was in front of me but I thought no, I really need to be honest with my doctors, so I told them.

I was told in no uncertain terms that since my numbers are generally within normal parameters today that it can't possibly be connected to my PV, and as I've been on interferon for over a year, it can't possibly be connected to that either.

I asked about my counts because I like to have the numbers as I track them in a spreadsheet so I can feel more in control. I got a few and when I asked about my RBC count, there was a pause as they said that the RBC count isn't really relevant! (I could be wrong but I'm pretty sure that with PV, a condition mostly causing increased RBC, that the RBC count is important. But even if I'm wrong, I have a right to that information about me). Edited to add, I still got them, sorry that was poorly worded!

So now I'm exhausted and frustrated. It took so much for me to admit to struggling lately and these very real symptoms have been dismissed in a heartbeat and with zero concern or humanity shown.

I have such a mix of emotions right now and just needed to get all that out in a place I knew people would understand. I'm usually very good at advocating for myself but seeing that person and having the same sort of experience has really knocked me at a time when I feel quite delicate anyway.

Hopefully by tomorrow I'll have pulled myself together and will feel more positive as I know I'm in a very fortunate position compared to some.

Thank you for listening if you got this far into my moan and rant! 🫠

[RoundTheWorld]

Hi Skyehope. I'm sorry you've had such a frustrating appointment. Crazy that many of us can feel nervous about sharing symptoms affecting our lives day to day. It's very demoralising if they are then dismissed (they come from somewhere and a chronic disorder seems a logical starting point!).

Interesting to read your comment re. RBCs as my haematologist has said something similar. I was slightly puzzled but assumed it meant other factors such as HCT are more reflective of the risk of thrombosis? Perhaps someone with more experience can help us unpick that; if not I will try to remember to ask my haematologist when we speak again next week.

Last time my Consultant read various results out but seemed a little surprised when I asked about RBCs, saying something along the lines of 'happy to tell you but it's not the most important figure for you' . I knew my HCT was up, and I'd have venesection, so I didn't really think to ask more.

You may be able to get a copy of the blood test results from your GP (here they don't routinely pass them on but will do if asked). If you're struggling with fatigue then could the GP help (or is there a friendly MPN nurse you can speak to about it? I know it can be very frustrating if the advice is all stuff you have already tried yourself though.)

Hope the rest of the day feels better and that next time you see someone more amenable.

[Skyehope in reply to RoundTheWorld]

Thanks RoundTheWorld. I did get the numbers I wanted but the reluctance irritated me as usually I have no problem. Perhaps my symptoms aren't related but yes, you're right, that was a sensible starting point and I think with being tired, I'm also more emotional and sensitive so I was looking for some guidance rather than a flat 'it's not this so lets move on'.

Onwards and upwards though (with my attitude, not blood counts 😜).

[hunter5582]

Sorry to hear that you had such a frustrating experience with you appointment. You deserve higher quality care, better explanations, and more knowledgeable care. Know that you also have a legal and moral right to all of the data in your medical records. You can simply ask for a copy of your CBC or any other lab or report. If you are at an appointment, the provider can just hit the print button and give you a copy. Attached is the report my hematologist runs for me at every appointment. I do not even have the ask. He gives it to me every time.

Regarding the numbers to track to monitor your PV status, the convention is to use either HCT, HGB or red cell mass. Note that red cell mass is not the same as the RBC number on your CBC. The most common practice is to use HCT since it is cheap and easy to get. Not that HCT is not the most accurate measure, just the easiest to use.

It is not true that if your blood cell numbers are at target that you cannot be experiencing issues like fatigue. The two things are not directly related. It is also not true that you cannot experience new adverse effects from a medication later in the course of treatment. In fact, some adverse effects take time to show up.

Suggest that not seeing the same hematologist at each appointment is not acceptable. It leads to a lower level and inconsistent care. Moreover, it would be in your best interests to consult with a MPN Specialist rather than a general hematologist. MPNs are rare diseases and most doctors, including hematologists, have little experience with them. Consultation with a MPN-expert provider is needed to ensure optimal care. this is a list of MPN expert doctors. mpnforum.com/tsr-the-list/

Suggest it is time to turn frustration into motivation for change. You deserve high quality MPN care, but must take charge of accessing it.

Wishing you success in accessing the care that you deserve.

CBC CMP Hx provided by hematologist at every appointment

[Skyehope in reply to hunter5582]

Thanks Hunter. One reason I like this forum is because we can feel heard, which I didn't yesterday. I tend to monitor Hct, Hbg, Plt and WBC mostly and MCV and RBC sometimes too. I tend to look at them altogether rather than in isolation but Hct is of most concern to me if raised.

I still am amazed that professionals don't understand that symptoms can still occur with blood counts in normal range. The person I saw yesterday is not an MPN specialist although my usual person has a special interest in MPNs and is very good. My usual person listens to my opinions and discusses rather than dismisses. I do see them most of the time nowadays which is great but I do understand that they'll need holidays and may travel for work too so it must be hard to fit in all patients all the time.

I'm in a better place today to consider it all in perspective. Thanks for helping with that.

[hunter5582 in reply to Skyehope]

I am glad to hear that you have a regular hematologist who works well for you. Some have reported enduring a team approach, where they never see the same provider. That sounds truly awful, precluding forming a healthy doctor-patient relationship.

You are absolutely correct about looking at all of the blood cell numbers. None can be considered in isolation. While we often default to focussing on HCT to monitor PV status, there is much more to PV status than that one number alone.

I remain baffled why providers do not automatically give patients their lab results as my team does. It is so easy to do and informs the discussion between the hematologist and patient. I am not surprised to hear that some providers do not understand the secondary/constitutional symptoms associated with MPNs. That is unfortunately all too common. It is why it is so important to consult with a MPN-expert provider for optimal care.

Wishing you success moving forward.

[EPguy]

Are you still on 135-180mcg/week? Some side effects arising is quite plausible at these higher doses.

Are you still getting phlbs? How are your PLT and WBC? The thought is if WBC and PLT are well in range you could ask Dr about reducing the IFN dose temporarily and make up the HCT rise with new or larger plhlbs if needed. If you start to feel better it would point to the IFN dose.

The value of interest for MPN is the relative volume of RBCs to whole blood volume, while RBC is an absolute number of cells per blood volume. Hence HCT includes the effect of red cell size, this is MCV in our results list. So they don't use RBC alone to track PV, rather it's the volume of RBCs as seen in the image. (HCTs ranges here are for non-PV pts)

Why RBC relative size vs counts matters is likely from empirical observation, studies long ago showed the direct risk of high HCT.

--

Red cell mass (not count) was tracked in the past, and is considered quite accurate. But it's no longer widely used and one chemical normally used for the test (Chromium-51) is no longer easily available. HCT is the current standard for tracking the red cell category. My MPN specialist said Hb is a better criteria but for historic reasons is not used. I think it was that measuring a test tube like the image was easiest option in the old days.

HCT

[Skyehope in reply to EPguy]

Thank you EPguy. Yes I'm on 180mcg per week. All great information. I feel like I have everything more in perspective today and you have all helped with that for me, thank you.

[Amethist]

unacceptable appt. Contact PALS for advice. Your GP should eventually be sent copies of results etc, so you could also try them. At the same time ask to be referred to someone else .

nhs.uk/nhs-services/hospita...

[Skyehope in reply to Amethist]

Thank you Amethist. I should have added that I did get what I was looking for but it was the reluctance (and general attitude) that irritated me. I'm more sensitive and emotional when tired so it just wasn't a good day. I've straightened myself out today and I'll just hope that I don't get that person again!

[lizzziep]

I have difficulty getting my actual results from the hospital, I used to ask for a print off of the results but then the doctor started saying they were “paperless” even though he’d got a printer at his side! It’s like it’s a secret only they are allowed to know about. I now ask to take a photo of the computer screen. Obviously that’s not possible with a phone consultation but it means I get to see the numbers at least occasionally.

[Skyehope in reply to lizzziep]

Thanks Lizziep. My usual person gives them to me no problem because she knows I'm sensible with them and that having them helps me to process everything and feel more in control. I did get what I wanted yesterday (though my original post was poorly worded) but I really didn't like the attitude that came alongside.

Today is a better day and I'm grateful to have been heard here, thanks.

[Spanelmad]

My Gp is getting a copy of the local teams blood results ,so I get a copy that way. But maybe for you it's time for a second opinion

[Skyehope in reply to Spanelmad]

My usual consultant is grand and listens and discusses things with me which makes a big difference. They also have a keen interest in MPNs so are more knowledgeable about them than yesterdays person.

I'm glad of this forum for being heard and I feel like I have more perspective on it today. Thanks.

[Scaredy_cat]

As it seems to be one particular haematologist you are having problems with, ask the department to have a consultation with a different one next time. But as others will say, getting an mpn expert should be a next step

[Skyehope in reply to Scaredy_cat]

Thanks Scaredy-cat. I did wonder about asking the dept if I could not see that person again. The last time was 7 years ago but they left me with the same feelings of dismissal last time too. I am generally a reasonable person and everyone else I've seen over the years has been grand.

[NickyRobinson]

I do hope you’re feeling much better. I understand how frustrating being in that situation can be, especially when you get the impression that the haematologist thinks you are just getting on.

This is totally incorrect and it does take a lot to admit but you’re struggling and need help and not belittled.

Please do not think you are alone we have all been in that situation especially as this is a fairly new blood cancer which needs a lot more research but fingers crossed things will improve.

Have a lovely weekend. X

[Skyehope in reply to NickyRobinson]

Thank you Nicky, I appreciate that. I do feel like I have more perspective today and feeling heard in this group helps a lot. My usual consultant discusses rather than dismisses and it makes all the difference even if the outcome might be the same. Thank you x

[Wesleygrange2a]

Hi

If you are in the UK and have the NHS app you can look up your results.Its very easy to download and use, I have it on my phone.

I usually have my blood test a week before an appointment ( have telephone appointments) and can view my results before the appointment takes place. I then know what to flag up and discuss during the appointment.

[Skyehope in reply to Wesleygrange2a]

Hi Wesley. Thanks. I'm in Scotland so I don't think we have the same app as England has. It sounds great though! You'll have time to process the results and take time to think of questions 🙂

[Inclement]

You don't mention your iron store result which may be relevant. I saw my MPN consultant this week who noted when I mentioned feeling more tired that I was very low in iron store but of course with PV the last thing I need is more iron as it will just produce more RBC! She has prescribed a few iron tablets, one to be taken if I feel it necessary 3 times a week for 2 weeks followed 2 weeks later by a blood test. Incidentally I always view results on Patient Portals of both hospitals I attend as while GP results go to one, the MPN specialist is at another - about 30 miles apart at most but can't view each others results!

[Skyehope in reply to Inclement]

Thank you Inclement. I did ask about iron as my levels are very rarely in double figures and often sit around 4. The consultant said they didn't check iron this time and that my levels are always low anyway. The last time I took iron tablets on a low dose, my hct and hgb increased a bit much so I'd be reluctant to take iron anyway, but sometimes knowing the cause can help you move on with it.

[RoundTheWorld]

I’ve had that low ferritin high Hb/RBC mix for many years - attributed to fibroids causing heavy bleeds for years but now know there was another factor as the PV was drawing on ferritin too.

[ERei]

So sorry to hear about your experience. My local hematologist is the same way. He keeps reducing my dosage of hydroxyurea because my #s are now mostly in normal range. He says that PV is not causing my symptoms since my #s are normal. I saw my MPN specialist this week who increased my dosage when I told him that on the lower dosage I have symptoms (night sweats & leg/foot cramps) & I felt much better on the higher dosage. Maybe a second opinion for you would be helpful, esp with an MPN specialist. Fatigue can also be caused by many different things so it might also be helpful to see your primary care physician to rule out other causes. Hope you feel better!

[Skyehope in reply to ERei]

Thank you. Care is a bit of a gamble in some places so I hope you get yours sorted out for the best soon too.

[KLCTJC]

I think the thing that would bother me is that if they don’t think it is related then can they help you! Feeling like crap isn’t acceptable. I hate you weren’t take as seriously as you should have been. I also hate you feel bad. I hope you get the help you need and deserve. ❤️. But we really do have to advocate for ourselves. Even as a healthcare provider myself I have to take control of my own healthcare. Wishing you the best. I know how it is to be young and dealing with this. I just now feel like my old self. Been a long 4 years!

[EPguy in reply to KLCTJC]

"Feeling like crap isn’t acceptable."

So true.

[KLCTJC in reply to EPguy]

That is my East Texas verbiage!😆. But so true! Not fair for people to be telling their providers they feel horrible and they ignore it.

[Skyehope in reply to KLCTJC]

Thank you. I'm generally very good at advocating for myself and do a lot of research so that I am fairly well informed but my first appointment with this person years ago has clearly made a bigger impression than I thought and I was just caught very off guard whilst feeling a bit more sensitive than normal. It's all good now though - I've regained my composure and will see my GP if this continues but for now will work on eating for health and exercising even when I don't feel like I have the energy as I know that will help.

I'm pleased you are feeling more like your old self - I try to be extra grateful for the times when I feel okay so that they stick in my mind more and I can use the positivity to boost me along. I've certainly learnt a lot more than a bit of medical knowledge of MPNs on this journey! 🙂

[KLCTJC in reply to Skyehope]

I hope you feel better soon. I know what it is like to feel bad more than you feel good. I would keep asking questions. Make sure others things are in order like your thyroid, b12, etc. We are not just one thing. And all our doctors need to work as a team not just handle one disease. We aren’t “our disease”, we are people. And all healthcare professionals need to remember that. You treat the person not just the disease. That is what my neurologist told me, why I love him so much! Feel better.❤️. We are always here to listen

[Skyehope in reply to KLCTJC]

Well, as a healthcare provider, your patients are very lucky to have someone with such a caring and all-encompassing attitude towards healthcare. Treating the person and not just the disease can really make all the difference which is the opposite of what I experienced the other day.

I think that's why discussion here helps because we all understand what it's like and so we see the people first and the condition second x