Hi all, so as of this month I’m no longer seeing a haematologist he’s passing me to my gp with all protocols, my blood levels are stable which is good I’ll have blood tests every 3months and I’m still on Hydroxy, has anyone else had this happen is this the normal procedure? I really don’t think doctors understand our blood condition as on my last visit I was told lots of people have this it’s nothing unusual!! I’m 62 with et jak2 +. I need a bit of reassurance please.
GPs and mpns : Hi all, so as of this month I’m no... - MPN Voice
GPs and mpns
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Jules153
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My opinion: this could be a good thing provided you have a strong relationship with your gp, you both understand the signs of toxicity with hydroxyurea, you learn about your disease and you keep records of your blood work and know how to interpret the numbers. A strong relationship with your physician and knowledge about mpns are paramount.
Sorry I can't offer you much reassurance on this issue. Most doctors know little to nothing about MPNs and their management. In fact, people with MPNs need to be followed by a MPN Specialist, not just a regular hematologist. It is fine for the GP or a regular hematologist to handle routine aspects of ongoing care like doing standard labs, but you always need a MPN Specialist monitoring your case.
The way I do this is that I have a MPN Specialist who I see once or twice a year. I also have a local hematologist who handles my ongoing care. I consult with both doctors whenever I need to get information or make a decision. I also have a wonderful GP and an Integrative Medicine doc as part of my care team. They help to keep on eye on me as a whole person. I insist on holistic care from all providers. On my care team, I am the captain. My wonderful providers consult and make recommendations. I make decisions. This includes who I am going to see for care.
It is great that you are stable and not having issues; however, ET is an evolving disease that can change over time. The JAK2 mutation does more than cause thrombocytosis. The systemic inflammation, risk of other neoplasms, and the other secondary and constitutional symptoms we experience requires ongoing care from a MPN specialist. Most providers do not understand the various ways MPN can manifest. It helps if you are able to educate your providers yourself, but input from the MPN Specialist is always a critical part of care for MPNs.
I would suggest that if this hematologist does not want to see you anymore, then it is time to find a hematologist who is a MPN Specialist who will follow your case. Many of these docs will agree to see you occasionally and consult regarding your care with other members of a treatment team. This is actually a very effective arrangement.
Here is a list of MPN Specialists.
All the best
Hello Hunter, How do you get an Integrative Medicine doctor? I've got other conditions but have to pursue information and help for each one separately.
The latest is thyroid, which may or may not be a problem but in order to "keep an eye on it" I will have to keep paying for private blood tests. It is certain that MDS/MPN affects the results of some of the thyroid tests but probably not the other way round. For instance,high ferritin score. B12 is on the low end of normal but I have no idea whether that is related.
Finding an Integrative Medicine doc varies by where you live and what healthcare system you are in. Some do not cover it. I pay out-of-pocket for my doc.
You may also want to consider a Functional Medicine doc. It is a similar discipline. Some docs do both.
Here are two resources
Integrative Medicine docs - USA only fonconsulting.com/resources...
Functional Medicine docs - worldwide
FYI - while my Integrative Medicine doc is not a MPN expert, she gets it. When I explained about the JAK2 mutation and systemic inflammation, she said - of course this has a lot to do with the symptoms you are having. We need to control the inflammation. She has helped with a number of issues and does a great job monitoring the interface between complimentary health and traditional Western medicine.
Hope you find a doc soon.
Thanks for the link, hunter. I guess having an integrative doctor would be private and therefore paid for. Would what they say carry any sway with the GP?
My GP listens. He is the one who referred me. At some level it would not matter as my doctors do not make the decisions about my treatment. My doctors advise and consult. I decide and let them know what the treatment will be.
I've made a note of some that are either fairly close to me or are on line, and the most amazing coincidence is, that after further searching, I found my chiropractor (and her partner), who has just left the country to return to Norway!
I discovered that some have naturopathic training - a way of life for me but sadly, not for my partner. I'm not sure at the moment whether I want to add yet another practitioner. I will see how I get on with the new GP and what any further blood tests reveal before committing to anything else. But thank you for sending me the information. I have made a note of several doctors. I also have a supplement supplier who is a doctor but not qualified in this country and he is, I would say, more knowledgeable than my GP on many subjects. I often talk to him about tests and diagnoses and we help each other out with our different areas of knowledge. He also knows a lot about ayurvedic medicine and other alternatives. Costs me a lot of money but I don't know what I'd do without him, really.
I see a functional medicine doctor and an mpn specialist. Whenever my functional medicine doctor suggests a new supplement, she tells me to check with my hematologist to see if it’s okay. This arrangement has worked out perfectly. I’m feeling much better since i started taking supplements and my numbers have improved.
My haematologist likes to know what supplements I'm taking as well as prescribed meds, and the list is long, but I'm taking virtually no medicinal pills now, and am just about to test to see whether I am actually acidic or alkali. I've been trying gluten-free bread recently and I do seem to be a bit better. I believe it is better to find the cause of acid before resorting to proton pump inhibitors. What sort of cost is involved in having a functional medicine doctor? I haven't got an MPN specialist near me at all, but my haematologist arranges all sorts of tests that don't seem connected to my blood condition - like finding the compression fracture by x-ray that my GP had sent me to physiotherapy for. At least something like acidity is something that we can perhaps control with diet. As for the supplements, I have been taking them for years, my medical conditions having been diagnosed more recently, so I don't know how I would have been without them.
I always let all of my providers know what supplements I am taking. Anything that can help you can also hurt you - and interact with things. Supplements can interact with your medications (e.g. Fish oil and Aspirin).
Looking at the issue with excess stomach acid, I believe that the deregulation of the JAK-STAT pathway is involved. The overproduction of inflammatory cytokines can have many wide ranging adverse effects. "Acid Reflux is not uncommon in polycythemia vera and there is a high incidence of Helicobacter pylori infection in these patients."
cancertherapyadvisor.com/ho...
It is clear that controlling systemic inflammation is a key component of treating MPNs. This is an issue that Integrative/Functional medicine docs can be very helpful with.
All the best.
Well, no mutated genes have been found, and no polycythemia. While I have fibromyalgia and osteoarthritis as well as acid (not so much reflux these days, just soreness that goes away on its own), when I had the thyroid blood test on Tuesday it seemed to show inflammation at quite a low level. B12 was at the low end of normal so I'm going to ask one of the haematology team if it can be added to my next blood test. Ferritin was high but I guess that is because my haemaglobin is full of deformed cells with iron rings around them. Although I have anaemia, it is not because of low iron and I am not trying to increase my iron uptake with diet or supplements - in fact I am advised not to do so.
With MPN/MDS overlap deregulation of the JAK-STAT pathway would be expected even in the absence of a known mutation. Note that this does not mean that there is no mutation present, just that it is not known. The research into the underlying cause of the "triple-negative" phenomenon will ultimately identify more driver mutations. Hopefully sooner rather than later.
All the best my friend.
Yes, indeed. All the best to you, too, Hunter.
Well said on all counts 😀
Thankyou hunter I’ve checked the list and found 2 specialists near me now to get a referral wish me luck.
If the docs are in-system, then it should not be a big deal. Many of these docs are private pay only If so, no referral is needed. Hope you get to see a doc soon.
I had the same sort of experience. My GP said she had known LOADS of patients with MDS (I have MDS/MPN but at the time wasn't aware that MPN was important). My haematologist is great. I haven't got a gene mutation and am only taking aspirin and on watch and wait (although I have started on epoietin injections), with appointments every three/four months. But when you've only just been diagnosed with a rare disorder, and are told that your life will be shortened, it's not comforting to have your GP behave like it's of little consequence. I went to a talk by Professor Kutacek and he said we have to educate our doctors as we are the experts with rare conditions that GPs don't have time to understand.
Thankyou.
Since only 1-2 per 100 000 have got MPN, it’s rather unlikely your GP has seen lots of cases. I would feel very uneasy if I didn’t have access to a specialist at all. My experience is that normal GO’s don’t have the knowledge and understanding needed to holistic care and recognising implications. Maybe you could have your routine checks done by a GP, but see a specialist a few times a year? I don’t know how you can arrange this, but there must be a better way than leave you completely in the hands of a GP.
I knew those statistics when my GP said that to me, and I was immediately put off. I have since been further put off sufficiently to change GPs and have face-to-face with my new one on Wednesday. I hope he has time for me!
I remember your last post about this. Passing MPN patients on treatment back to GP care is not normal UK procedure that I’m aware of.
GPs will have areas of particular interest but they are not specialists. They can’t be expected to take on responsibility for monitoring an MPN or prescribing and varying medication with no relevant expertise and professional backup. It’ll be a very rare one who will be able to answer any questions that you may want to ask about your MPN in the future.
I wonder, is your GP happy about this? They already have a huge work load and a news report today says GPs in England are going to be able to do less of their monitoring and health check work in the coming months so they can contribute to the latest push for covid jabs. That move will create even longer backlogs and more corner cutting to come.
I’m sorry I’m being a downer on this but I feel it’s so important to us as patients to know we are in good hands. Asking your GP for a referral to a MPN specialist would be my choice, even if it means a bit of a trek every few months. Either way, I do hope you’ll get the proper level of care and expertise.
I’m waiting to see if the doctor gets in touch now to discuss this with me!! As the haematologist had no interest in my symptoms or me as a patient thankyou for your help
Sounds like you need to be rid of the haematologist anyway. This is your opportunity to research for the best specialist care available to you and tell your GP where you want to be treated, don’t ask. I made the move from a general haematologist to a specialist team. It was an effort at the time but it was the difference between night and day. I wished I’d done it a lot sooner. Good luck!
My Gp didn’t have a clue about my PV & ET jak2+ I would be concerned if my Haematologist suggested this, please seek advice just want you to have the proper care needed, Good Luck!
In a way it’s a good thing. Maybe you are really stable. As long as you are still under your heamo’s care. Should anything out of the ordinary arise I think you need access and the reassurance of an MPN specialist. I’ve been told it’s most unusual some GP’s won’t even do blood tests on behalf of the heamo’s clinics let along prescribe because the funding comes out of the GP and not hospital finance.
Good luck
Hi Jules153 I have a joint care plan with both my GP and Haem. It was set up about 2 years ago.
But, it's mostly just ordering my Hydroxy prescription from my local surgery. My Haem still orders my blood tests - I have my bloods done at a local community hospital, and I still have consultations relating to the results with my Haem.
My GP actually admitted to me many years ago that she only knows the basics about Jak2+ PV.
Thankfully, my GP and Haem communicate well with each other - I had another medical issue a few months ago and had to have yet more (GP requested) blood tests. My GP must have queried them with my Haem as he wrote on my notes... "Re - folic acid – there are no objections from my end, but please note that hydroxycarbamide does cause macrocytosis universally."
This reassured me that they are both working well together - my PV is also stable, and I tolerate hydroxy well with no side effect. But I wouldn't feel comfortable if my Haem passed everything over to my GP.
If you're not happy with the situation, I would definitely request clarification.
I’m not convinced by this proposal. I certainly would be deeply unhappy. We spend all our time on this Forum suggesting people see MPN specialists and not just any old haematologist. So being referred back to your GP for your care seems like a move in the wrong direction! The fact that you’ve been told MPNs are not unusual should be ringing alarm bells! If you’re stable it makes sense to see your haematologist less often or to have your bloods done locally and reviewed remotely by the Haem team but that is it. I’d also be surprised whether your GP would be happy managing the Hydroxy. This might be a case of changing your haematologist
I wouldn't hav thought it normal, no.At UCLH there is a dedicated MPN clinic in the McMillan Cancer Centre - I understand that I am fully under their care for as long as I am in London.
Are you a long way from your hospital? they may think it is easier for blood tests and ongoing prescriptions to be done by GP.
But make sure you get all of your blood test results, stick them on a spreadsheet, and ask for a further referral if you have any major changes.
Thankyou all so much for your helpful comments I will be fighting this and will let you know how it goes.
Following on from some brilliant answers / suggestions, I really cant see this as being a reasonable proposition. Only from the fact that I’ve retained an active Haemotologist from my local hospital (who initially diagnosed my ET) Plus Guys Hospital. Both take a regular and active interest in me. My GP, on the other hand, admits she knows little about the condition & is pleased that I get the assistance from others.
That being the case I can only think that GP care in the case of MPNs is somewhat limited.
In Scotland. From 2018 many patients, who were stable or on HU were sent back to their GP to have their MPN monitored. I’m unsure if this was a Scottish policy or individual trust. I remained under my haematologist as only he can prescribe pegasys.
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