Ha Ha Ha Ha

[quanglewangle]

Time and again I see recommendations that one should speak to an MPN specialist or someone else on one's care team - and I have a quiet chuckle and just carry on with my life.

I am Coeliac around 2010 I was diagnosed with Atrial Fibrillation and Essential Thrombocythemia; since then I have progressed to permanent AF with a Pacemaker safety net to keep my Heart Rate up to acceptable levels, Beta Blockers have depressed my Blood Pressure, and following a TIA in 2019 I am on anticoagulants. Included in the effects of Hydroxycarbamide (many but not significant) I am borderline or somewhat anaemic and my GP locum suggested iron supplements but I believe that I have heard that tinkering with iron can cause problems so I tried asking the Haematologist if that was ok? and was promptly referred back to the GP. That is an issue because we do not have a GP as ours all took early retirement and now rake in locum fees for pocket money.

I have not seen the Cardiologist for more than ten years, nor the Haematologist since way before 2019 (PM is also monitored remotely since Covid) and the idea of consulting an MPN specialist to find out what if anything I can or need to do just makes me laugh. (We live in a small town 55 miles from Edinburgh and Glasgow so help is sparse anyway with one GP surgery closed and the other one rudderless )

It would be nice to meet someone doing joined up thinking to confirm what if anything I should do about iron levels. I take many supplements such as Vits A B C D E B12, Zinc, Magnesium, Selenium and Glucosamine in addition to Bisoprolol, Hydroxycarbamide, Edoxaban, Omeprazole, Finasteride, Cetirizine and Nutrizym22.

I tried writing to a listed MPN Specialist in Edinburgh but got no reply and I see that he charges £200 for a consultation anyway...

And what is a care team? Ha Ha!

Please do not think that I am hoping for stupendous revelations - I just felt like a moan and will keep taking the tablets/capsules and carry on enjoying each day

Off to walk the dogs now - Bye!!

[Booagain]

I replied but lost it.Just want to say have waves of empathy for you!

[hunter5582]

Sorry to hear about the challenges accessing adequate healthcare. It is a particular challenge to manage ET without MPN-expert care.

A few things to consider. There is no contraindication for taking iron supplements with ET. There is a contraindication for PV, where it would drive erythrocytosis higher. Hydroxyurea can cause anemia. It is a known adverse effect.

The norm in this situation would be for the hematologist to order an iron panel and possibly other blood work to determine why you appear anemic. Assessing your situation in having ET, being on HU, and presenting with anemia is beyond the scope of practice for a GP. This is in the scope of a hematologist who is knowledgeable about MPNs.

If you are iron deficient, that would also be a matter for consultation between your GP-hematologist-cardiologist. Note the following.

"Anemia and iron deficiency are common conditions in patients with AF. Furthermore, emerging evidence suggests that the presence of anemia may be associated with worse outcome in these patients." bmccardiovascdisord.biomedc...

Hopefully there has already been consultation regarding potential medication interactions between your cardiologist and hematologist.

Monitor/Modify Tx bisoprolol + edoxaban

monitor bleeding s/sx; decr. edoxaban dose to 30 mg/day in DVT/PE pts; no dose adjustment recommended in atrial fibrillation pts: combo may incr. edoxaban levels, risk of bleeding, other adverse effects (P-gp-mediated transport inhibited) online.epocrates.com/intera...

What you have described requires consultation and collaboration between a knowledgeable care team. While we can put together some basic facts like list above, it requires a competent care team to work with you to identify and appropriate plan of care. The lack of access to the care team you describe is deeply concerning. Others in your situation in the Edinburgh/Glasgow area can do a better job describing how they have accessed the care they need, I know others have managed to do so,

If nothing else, I would pay the £200 for a private consultation. I believe the doc in Edinburgh is Dr. Mark Drummond, who has an excellent reputation. It would be well worth the money to receive the care you need.

Assertive patients receive higher quality care. Wishing you all the best and success in accessing the care you need.

[Mostew in reply to hunter5582]

Great advice as always Hunter.

But , just one thing . Easy to forget some people really don’t have £200 spare and are struggling to keep up with basic bills…

Best wishes. To you

Carolyn

[Janis12]

I agree, most of it sounds like 'fantasy land' to me. I do not even know if my GP surgery has any GPs now, my recent visits included a consultation with a paramedic (employed full time at surgery) and then an appointment with a physician associate (look that up, it seems to be a new grade to take the place of a GP they can diagnose but cannot prescribe!). It seems for many of us who are not privy to the whole care team or holistic approach to our condition it's pretty much 'defend your own corner'. Like you I end up popping the pills then head out on my bicycle and try to forget all about it. Keep up the good work as they say.

[KevinJH]

Never ceases to amaze how apparently differently some doctors will go forward with treatment; following a recent blood test I too was found - for the first time in twelve years (with PV) - to be borderline anaemic. When I asked "tablets ?" the response was "nope, tablets won't resolve, you need an iron infusion and we'll monitor" - no mention of referring back to my GP (who'd only be one of a nameless pool....) thank goodness. It really is luck of the draw and I hope that at some point - very soon - you find a satisfactory resolution 😉

[ritaandscooter1]

Boy, I hope you can find the expert care you need but I love your sense of humor trying to deal with all this. I've had PV JAK2 (age 62) for over 20 years. Have done exceptionally well on 2 aspirin a day and venesections every 3-4 months as treatment plan. (Note: no other health problems/low risk) Of course the low iron levels have been a problem all along. When they are really low my HCT plateau's and won't climb. Other symptoms are hair breaking off, more fatigue and more sugar craving. After BMB to rule out progression, it was obvious that low iron levels were causing HCT to stay the same.

Although, I have one of the world's leading MPN specialist out of Mayo and a wonderful Hematologist here in Alaska, I took it upon myself to take a low dose iron supplement 27mg every Sunday. This has brought up iron levels a little without driving up blood levels and HCT started climbing again at a normal pace. My MPN specialist is thrilled with this revelation and is going to incorporate this or share this with his other patients......granted we are all different. Finding an excellent MPN specialist is critical but so is listening to your own body and symptoms then acting accordingly. This iron regimen has worked very well for me. After a venesection I can feel out of it for a few weeks so I'll take an extra iron pill to feel better. There is no hard set rules with treating our PV/ET and we all respond differently. Definitely foremost find an expert doctor and then advocate for yourself!! Be assertive, as even the experts don't have all the answers and are learning from us!

Best to you! Kerry

[quanglewangle]

Hi

Thank you for your helpful and comforting replies (including private ones). Clearly I am not alone and am encouraged to keep looking for the support that could be available.

Good Luck everyone

[RazB]

I love your way of thinking, you are clearly a tough Scot! I don’t know about iron, although I know mine is low I don’t take it as read somewhere a long time ago (maybe same article you read) that it’s not good for us to take. I’m in south Devon and although live very rurally have a good GP although wouldn’t think about discussing MPN stuff with her as have found that GPs just don’t have enough knowledge. I hope you can find an MPN specialist near you (not private), have you tried Edinburgh? I know they have a good team there because when I ran the MPN fundraising dept I went to Edinburgh with Prof Harrison to speak at a conference. Have you contacted Maz on MPNVoice website (or on here as Mazcd). I know she’ll be able to help xx