Anaemia?

[MaggieSylvie]

I have MDS/MPN and was sent for tests initially because the GP who referred me two years ago thought I might be anaemic. Now I have the diagnosis, does anyone think it's ok for my regular GP to keep referring to it as anaemia? Or should I give her some literature?

[Vtr1000]

Hi MaggieSylvie, I think some literature is a good idea to help her understand your diagnosis.

[MaggieSylvie in reply to Vtr1000]

Thanks Vtr1000. When I explained my diagnosis to her soon after I got it, she said she had had lots of patients with MDS! Totally denied any seriousness at all to it when I felt I had just been given a death sentence. I don't feel so much like that now but she doesn't seem to be well engaged.

[Hidden in reply to MaggieSylvie]

Hi MaggieSylvie

I’m so sorry to hear that you’re having a difficult time with your GP. Maz is having a well deserved week of, so I’m helping (I’m part of the Management/Fundraising Team for MPN Voice).

Our MPN Voice Booklets, are just being reprinted at the moment, with lots of new up to date information in them. So we are waiting on stock. So for the moment, please can I refer you to our MPN Voice website at mpnvoice.org.uk

It also has a dedicated page to MPNs and the current Lockdown advice.

I hope this helps. Keep safe and well

Marilyn

[MaggieSylvie in reply to Hidden]

Thank you Marilyn, I'm low risk so I have been wondering whether it matters that my GP is pulling the wool over my eyes. I have my phone appointment with a new consultant in three weeks so we'll see if there's any change. There might be because I have been "going through it" recently and wouldn't be surprised if there's a rise in platelets. I will wait for the new literature to come through as well, and am already on MPN Voice. I will visit it again anyway; I am just shielding, but not being silly about it. Thanks again, Maggie

[Hidden in reply to MaggieSylvie]

Good Luck with your new consultant. I’ve had phone appointments for years (I’ve had ET for 11 years). And have always found them ok. Don’t forget to write down beforehand what you want to say. Best wishes Marilyn

[Skeeter1956 in reply to MaggieSylvie]

Hi Maggie Sylvie . I may be wrong , but I very much doubt your GP has many patients with MDS . It is after all a rare condition . My wife was diagnosed with hypoplastic MDS a couple of years ago and her heamo said he does not see many cases .

On the plus side you probably won't have much interaction with your GP. You will be treated almost exclusively by your haematology team

All the best Skeeter.

[MaggieSylvie in reply to Skeeter1956]

That was my point. At the beginning, I read that a GP during their career might see as many as three, and when you have the crossover and triple negative, I would think even less. I've just been reading about the role of inflammation in MPNs and that needs a lot more research.

[MaggieSylvie in reply to Skeeter1956]

I have extracted this paragraph from the paper I was reading which is relevant to me.

Seventhly, in the context that “triple-negative” (negative for JAK2V617F, CALR, and MPL-mutations) ET patients have a much more favourable prognosis than mutation-positive ET patients, some triple-negative “ET” patients may actually not have a MPNs but instead polyclonal inflammation-driven thrombocythemia. If so, the subset of “triple-negative” “ET” patients may be associated with a heavy comorbidity burden of chronic inflammatory diseases, an issue which deserves to be investigated systematically.

[hunter5582]

The GP definitely needs some education about just how serious MDS/MPN can be. There is more to it than anemia. That is just one symptom. In addition to literature, which is worth giving her but may just be ignored, a consult with the hematologist would be in order. If that has already happened, then not sure what else you can do. Perhaps insist on the use of your proper diagnosis and review of all relevant symptoms and risks. If all else fails - fire the GP and get another. Never forget, you are the one in charge of your medical care. Insist on proper care.

[MaggieSylvie in reply to hunter5582]

Thanks Hunter, what do you mean by "consult with the hematologist"? Do you mean that they should get together or that I should be there too? I'm quite sure that hasn't happened. The most that my GP would have received is the usual report/letter on the computer. I am low risk, so not sure I should make a song and dance about it but the reference has happened twice now, on one occasion "oh do you still have anaemia?" I thought she had just caught herself saying something stupid but she continues like that. This latest comes at the same time she told me, when I asked, that I am not my partner's registered carer (after 30 years of saving him from going into diabetic comas). I must say, I find the GP who referred me to the haematologist initially seems much more inclined to be interested and to give his time to me, and he allies himself to me as being in the same age group. I don't feel happy about changing GPs but I must admit I have thought about it.

[hunter5582 in reply to MaggieSylvie]

I did mean for the two docs to just talk, but it would be great if you were in the conversation. It sounds like it is pretty clear that the current GP just does not get it. Based on what you describe, this doc may never get it. You have a right to the best possible care. The doc works for you, not the other way around. If you are not happy with the care you are receiving from the current GP - fire the GP. It sounds like you have already found a better GP. Hire that GP. This is your right as a patient. It is also your responsibility as your own care manager and advocate. It is up to you to ensure you get the quality of care you deserve.

[Trocken in reply to hunter5582]

I have been seen by GP’s (for other issues unrelated to MPN) and on 2 occasions in the past couple of years, they have openly said they don’t know anything about MPN’s and befor prescribing have contacted the on call haematologist for advice ana them said they’ll have a quick read on it! GP’s can’t possibly know everything but the good ones will happily ask the right questions and seek advice. I moved surgeries because I was misdiagnosed and given incorrect medication. We have to be able to trust our GP’s, it’s a partnership. I hope you get somewhere educating them.

[MaggieSylvie in reply to hunter5582]

Thanks Hunter, I am a bit sick of being fobbed off in so many ways. So when the time is right, will do this. But it means having a different GP than my partner has. This may be a good thing - or not.

[hunter5582 in reply to MaggieSylvie]

If it means you get better care, it is a good thing. Your partner will have to decide for himself whether he wants to change GPs. Seems to me like a better doc is a better doc.

[Wyebird]

Literature would be good. Maz at MPNvoice.org.uk will supply you with some fab little booklets and posters.

I took some to the local Oncology clinic only to find that the Sister in charge had no idea of the neoplasm

or the charity.

[MaggieSylvie in reply to Wyebird]

I'll check that I haven't got some in my MDS folder. We don't get face to face now in the surgery so I can't just pass another leaflet over. I know I haven't got much on MPNs -just enough for me to read up - otherwise I use Dr Google. I do think GPs should familiarise themselves with the conditions of their patients, even if the patients appear healthy.

[lizzziep]

There are 2 Gp’s at my surgery, one is always available because nobody wants to see him as he is next to useless, he’s ok for repeat prescriptions but not much else! The other one is much more on the ball and it’s worth waiting to see him and get some sense! Sounds similar at yours. Always ask to see / speak to the knowledgeable one or you can change GP’s if there is another in your area. Do a bit of research first to make sure they will understand your condition. Ask friends/family who they see and what they’re like.

[MaggieSylvie in reply to lizzziep]

There are three GPs at my surgery and I am very much leaning towards the one who has been there the longest. My GP is only there at the end of the week and as I have needed to speak to one several times when she is out of the surgery, I have had quite a bit to do with the more senior one. If I change it would mean that my partner and I have different GPs and at the moment I am struggling to get support with Type 1 diabetes and possible dementia. She's just not as engaged as the one she replaced.

[Tartanlady]

Hi MaggieSylvie,

I also have MDS/MPN and feel exactly the same as you. The GP’S at my practice know nothing about my illness. The senior GP even told me when the shielding letters were being sent out in the beginning that I wouldn’t need one as I didn’t have cancer! Strange...cause my Haematologist says I have 😬 I tried taking posters and leaflets up for them to display in the waiting room along with the others they had but NEVER seen them again. It actually scares me their lack of knowledge but I have to admit they do contact Haematology if they need to.

Are you on any medication?

I’m sure we have spoken before?

[MaggieSylvie in reply to Tartanlady]

Yes, I think we have spoken before. I'm only on aspirin prescribed by the haematologist, and I buy it from the supermarket as it is so cheap compared to what the NHS pays for it, though I can get it on prescription if I want to. I don't think I would have got a shielding letter if it were left up to my GP. I know they don't know much about these rare conditions but if they're going to boast that they've had "lots of patients with it" when that can't be true, they should at least do all they can to find out a bit about it. It's not difficult to understand if you are medically trained.

[mark382]

My GP openly admits they don't know much about my PV. They generally look in a thick medical book, which has a few lines in it. They tell me to speak to my haematologist. On one occasion I was anaemic and junior GP thought I was bleeding internally and said I should have cameras to look for bleed and course of iron tablets, BUT she would speak to haematologist first. Luckily she did as haematologist said if I'd had normal course of iron I would have been in the danger zone for heart attack or stroke. My haematologist arranged a venesection as even though I was short of iron as I always feel better after a venesection. Haematologist told me to refuse any iron treatment unless she approves it.

[Mwalimu]

I think you should change your GP to the senior one and explain, when the occasion arises, that you do not feel safe with the current one's attitude and why.

[Superwoman]

Hi Maggie,

Get Maz, to send you some booklets, then give to your GP, I had to do this many years ago now, but I have now changed my GP well the beginning of this year, and fortunately for me the new one understands my ET and are great wish I had done it years ago but took for my old GP to retire, and no other doctor knew what the hell an MPN was.

So as I said get Maz to send you some booklets.

Jean

[Eadaoin]

I was diagnosed with MPN/MDS over 20 years ago. I presume you are under the care of a Haematology Consultant. It is not anaemia though very occasionally my iron level falls and I become anaemic. An iron infusion quickly sorts that out. Perhaps your GP was just referring to that aspect. Give her literature which is available through MPN Voice explaining you have a blood cancer. Understandably GPs cannot be up on the latest research on all subjects especially as modern medical research is developing rapidly.

[MaggieSylvie in reply to Eadaoin]

Dear Eadaoin, I'm sorry you have had the crossover condition for so long. Like you, I am under the care of a Haematology Consultant, only the one I have been with for the last two years seems to have left the hospital since Covid.

I described the sounds like a marching army in my head to the GP I spoke to, and he immediately said. Hmm that could be a sign of anaemia. I'll refer you to a haematologist. After a few tests, I asked a nurse "If I am anaemic, can't I just be given some iron?" and she said "It's not as straightforward as that, and you don't actually need iron. It could be harmful to you". So then after lots of blood tests and a BMB I was finally diagnosed with MDS/MPN. I've only recently discovered that there is no mutated gene involved, which makes my condition the rarerest of the rarest of the rare!

I daren't stress to my regular GP that it is blood/bone marrow cancer because I seem to remember when she said how many patients she had come across with the condition, she wasn't open to anything I had to tell her. Like most doctors, see doesn't like being educated by her patients.

So I am not short of iron, B15 or Vitamin D but the MDS part of it is RARS - refractory anaemia with ring sideroblasts and the MPN is essential thrombocytosis where the platelets are proliferating. I would have thought she would have picked up on the "blasts" as they are immature red blood cells that are the cancer part of it, and as a medic, she should know that word. Given that the addition of iron to my blood might be at least unhealthy for me, I don't understand why she has asked "Are you still anaemic?" She clearly hasn't looked further than her nose.

This isn't the latest research, as the books and leaflets have been "out" for some time. As I am not very ill, perhaps she is focusing on patients who are more sick. If I become sicker, I will have to rely on the haematologist letting her know! However, I think I will switch GPs before that happens. I have a physio appointment coming up, and next month - my blood tests followed by my haem consultation. I am interested in the latest information I read today about MPNs and inflammation, particularly in triple negative patients and perhaps my MRI scan will show some more information. I hope to find out on Monday.

There are so many variations among patients with these blood cancers.