Odd consultant appointment

[Lilliegarden]

I had my consultant appt today, my last was 3 months ago.

Last venesection also around 3 months ago as they were happy with my hematocrit level. Ongoing diagnoses of PV & ET. No one can decide which it is & one told me I have both (not sure if that’s possible)

At my Nov 22 appt I saw a locum & we discussed me starting medication as my platelet levels were around 1000. Consultant gave me the choice of Hydroxy or Pegasus, Suggested I go away & read about both but the opinion was Pegasus would probably be the better choice, hopefully less side effects.

Today I saw a different locum who started the conversation that I was there to start hydroxy.

I had to be quite firm that my choice would be Pegasus after speaking to the consultant at my last appt.

I said I’d prefer to hold off any medication for as long as possible as on the whole I feel quite well at the moment & am concerned about the drugs side effects.

He just stared at me & said what side effects?!

He then went on to ask if I have been bleeding from anywhere, I replied other than the usual scrapes/knocks I get, no. He said my iron levels are very low so I must be bleeding from somewhere!

I asked if my iron levels had been tested in my most recent bloods a week ago & was told no, last tested July 2022 but they wouldn’t have improved since then.

He then said he wanted to refer me to the gastrointestinal team to request a scope of my intestine/bowel to rule out any bleeding there, despite there being no symptoms to suggest this & I don’t feel or look anaemic.

Next appt scheduled for 6 weeks with the intention of starting Pegasus then & his hope that I’d have been seen by the gastro team by then.

I left the appointment today wondering whether he actually knew what he was doing, not something I have ever done before!

Is it standard practise to request gastro scope with no gastro symptoms prior to starting Pegasus?

Or to assume iron levels are the same as they were 6 months ago without testing them?

I am conscious that I might be over thinking/reacting, but today’s appointment was just weird.

I’m in the UK, Herefordshire, under Hereford hospital.

All bar one of the consultant haematologists left last year & there are otherwise only locums providing the service, none MPN specialists.

I find the lack of continuity at this hospital really difficult as have never seen the same doctor twice & clearly today’s hadn’t read any of the notes from my last appointment.

I would consider travelling to Shropshire, Worcestershire or Gloucestershire if anyone  has any good experiences in these areas.

My GP isn’t the source of much help, quite dismissive as he has another patient with an MPN who was diagnosed 10 years ago & is absolutely fine apparently!

I couldn’t get a copy of my blood results today so don’t have figures to share other than remembering my platelets are 1086 & hemacrit under .45

Any thoughts, including those that I might be being dramatic 🤣 would be welcome.

Heather

[hunter5582]

You are most certainly not being dramatic. I would say you are being quite understated given what you just went through. That is truly ridiculous at many levels. Seeing a series of different doctors when managing your MPN care is unacceptable. It is particularly unacceptable when there is an apparent lack of MPN expertise. It is absolutely imperative that you consult with a MPN Specialist about your case. Do whatever it takes to see a MPN Specialist. Here is a list. mpnforum.com/list-hem./

Whilst you wait, suggest increasing your own knowledge base using reliable sources. Here are some reliable sources.

mpnvoice.org.uk/

mpninfo.org/

mpnresearchfoundation.org/

mpnadvocacy.com/

powerfulpatients.org/help-b...

patientpower.info/myeloprol...

Here a a few facts you can learn more about

Diagnosis - ET vs PV. You cannot have both. You have either one or the other. ET = thombocytosis only. PV = erythrocytosis that may also be accompanied by thrombocytosis and/or leukocytosis. It is not always clear which you have. Some people have a Masked PV. When it is truly unclear, the correct diagnosis is MPN-Unclassified.

Venesection - venesection is used to reduce red cell mass as a part of treatment for PV. It is not used for ET. Note that venesections are intended to reduce iron levels to control erythrocytosis. The iron deficiency is intentional as part of the PV treatment.

Iron Deficiency - it is very common for people with PV to be iron deficient. PV is in part an iron dysregulation disorder. The body is using the iron to make too many RBCs. Depriving the body of iron further through venesections is intentional. Your iron levels should be very low at this point. Your care team should be routinely monitoring your iron levels as an ongoing part of treatment. You should not assume anything about your iron levels without testing them.

Anemia - Iron deficiency and anemia are not the same thing. Anemia is a deficiency in HGB/RBCs. Iron deficiency is having too little iron. You can be iron deficient without being anemic, particularly when you have PV.

Bleeding - you are at increased risk of hemorrhage with PLT > 1000. You may notice unexplained bruising or excess bleeding with cuts if this issue is present. While GI bleeding is possible, a fecal analyses should show if GI bleeding was present. Internal bleeding can certainly lower iron levels. However, your low iron levels are readily explainable.

Gastroenterology - while it might be a good idea to see a GI doc if you are symptomatic, it is not routine practice for someone with a MPN to undergo endoscopy or colonoscopy in the absence of symptoms. We do these procedures on the same schedule as anyone else our age. Note that due to our increased risk for other neoplasms, we should not ignore the routine screening procedures.

Pegasys vs Hydroxycarbamide - most MPN Specialists would recommend Pegasys over hydroxycarbamide for someone age < 60 due to the risks associated with long-term Hydroxy use. The doc who gave you the choice approached this in the proper way. Your preference for Pegasys is the determining factor at this point in the decision making. Note that Besremi is also an approved first line option, but difficult to access at this point in some places. Note also that both medications can have significant side effects. You have to do the risk/benefit analysis for each medication and make your own decision. Here are a few resources that may help you support your decision.

drugs.com/monograph/hydroxy...

online.epocrates.com/drugs/...

drugs.com/pro/pegasys.html

online.epocrates.com/drugs/...

Labs - you have a fundamental right to have access to your labs upon request. The doctor had to be looking at them on the computer to have seen the results. All the doc had to do was to hit the print button. Most electronic medical records will also print a historic view so you can see the results over time. Most health systems also have patient portals where you can view the labs yourself. I can see all of my labs, including the historic view, in the patient portals I use. I believe this is the link to accessing portals in the NHS. nhs.uk/using-the-nhs/about-....

Other Docs - most doctors have little to no experience with MPNs. It is not reasonable to expect for them to have the perspective you need. That is why consulting with a MPN Specialist is so important. It is also why it is so important to educate yourself so that you can provide other members of your care team with the information they need about your MPN case. It is reasonable to expect doctors to be compassionate and willing to listen and learn. Any doctor that does not meet these attributes should be replaced with a better doctor.

It is a true in all healthcare systems that educated and assertive patients receive higher quality care. Passive patients do not. We have to be our own best advocates. We must select our providers with care, choosing providers who have the knowledge we need and the capacity to provide compassionate care. This is both our right and our responsibility.

Wishing you all the best moving forward.

[Lilliegarden in reply to hunter5582]

Thanks so much, super helpful reply

[AndyT]

Hi Heather - I don’t think you’re being over dramatic. One of the problems we face as MPN patients is lack of knowledge of our conditions as they are so rare.

It definitely sounds like a review/second opinion from an MPN specialist would be sensible.

I can’t suggest anyone in the counties you’ve mentioned but know there are excellent specialists around the UK so look at Hunter’s list and see if there’s a location that would work for you. I get great, expert care in Leicester but appreciate that’s probably a bit too far for you.

Good luck!

[Lilliegarden in reply to AndyT]

Thank you, I will take a look at what’s logistically possible.

Would I need to ask the MPN specialist directly if they can accept me or does my current hospital team/GP have to do that?

[AndyT in reply to Lilliegarden]

I would imagine you’d need a referral from your GP but have to admit I’m not sure of the exact process

[LittleLuna]

Sorry you are being treated like this. Not acceptable and something you should bring to the attention of the management team

The link below provides info on contacting Patient Experience Team who are there to help with this type of issue. I really recommend you follow up with them.

Key is making a link also with your haematology Secretary who would be the one to send you blood reaults. Request that all your results are emailed to you. You have the right.

wyevalley.nhs.uk/contact-us...

You can also call them via number on the link below. Might be quicker option than writing to them.

wyevalley.nhs.uk/contact-us...

[Lilliegarden in reply to LittleLuna]

Thanks so much, I didn’t realise that what the experience team was for.

I can give the haem secretary a call.

I’m tempted to pop into the unit where I had my venesections done & the nurses are amazing.

They’re in a different building but associated, they always printed my results off for me.

They might also test my iron levels if I ask

[LittleLuna in reply to Lilliegarden]

hi. Not sure they will do ad hoc blood test by dropping in but if you have a chat with secretary about how you go about getting blood test when you feel change in symptoms she will know procedure.

I suggest talking over problems with patient experience team and being assertive in your care and your expectations you have. As Hunter says we have to advocate for ourselves and manage our care. Bit more difficult doing this in the NHS as we have limited access and choices of who and when we see clinicians but he who shouts loudest will be heard.

[Susana7]

You can ask your consultant or your GP to refer you to an MPN specialist for a second opinion. But starting on Pegasys seems to be a good way forward. Make sure they do not start you on a very high dose, not higher than 45mcg/week or 90mcg/week. If you don’t like the idea of self-injecting, get EMLA cream over the counter and apply it to the injection site 30 min before and you will feel nothing! I have PV with very high platelets (first diagnosed as ET, but a red cell mass test clarified it was PV), and started on Peg after platelets hit 1.5 million. Was just on aspirin before, with minimal symptoms. I am still on Pegasys 8.5 years later. My consultant also suggested a colonoscopy because of iron levels before I started Peg, but then seemed to forget about it so I did not do it. Good luck!

[Scaredy_cat]

I've been treated for et and then mf by Gloucestershire Royal Hospital, in particular Rebecca Frewin who I can highly recommend

[Hopetohelp]

not had a gastro scope before starting peg. Be firm, which it sounds you are, about going on peg. Gps don’t know enough about our condition normally so you need to be referred to a haematologist . Hope you can get it all sorted

[Transporter]

I thought my consultant appointment yesterday was confusing, but your experience is on a whole different level!

My new consultant wasn't available yesterday, so had to see someone different and left more confused than when I went in. This was after it took four goes at getting a blood sample to test, three with one nurse and then one go with a different one.

[saltmarsh]

Just reading the replies has me thankful for this forum. I'm in the US and don't have the challenges you seem to be having in the UK. I agree with everything that's been posted here having had issues myself with venesections and medication over the last 3 years. Time for you to get a MPN specialist and move forward. You are clearly not being served well and while there are many options for treating these disorders, given your platelet level, it's time to adopt a solid plan and go with it. Best of luck. Let us know how you progress.

[Andrew8]

I was diagnosed with ET in 2016 when a blood test revealed platelet level of 1100K, I was put on Hydroxy, but after 6 months experienced severe fatigue episodes, and later found to have AF - heart rhythm problem, known side effect of Hydroxy, After a BMB re-diagnosed with MF and had various med changes eventually ending up with Jakavi, but still had fatigue, but was complicated by the AF, and had several heart med changes and cardioversions, but all seem to stabilize in August 2021. But some fatigue continued, but improved when taking magnesium malate, as I read that some of these meds can deplete your magnesium. But of course Jakavi seems to reduce your immune system, so went down with Sepsis February 2022, gradually recovering, but a struggle.

But don't forget to thank all your medical team, most of them are doing the best they can, and often do not get appreciation from patients, As a beekeeper I started giving them all a jar of my honey, when I saw them. I have no trouble getting appointments and they all remember me.

I have a blood test every 3 months, and either a face to face or at least a phone follow up, and a written report of results. I have to say that the Aberystwyth hospital teams have saved my life several times, so I try to remember to thank them at every opportunity.

My MF was seemed to have been caused by exposure to Benzene in petroleum products. I am horrified to see that unstable Benzene compounds are used in many cosmetics and foods even Organic. Just look for the letters BENZ.......