Hi, sorry this is a bit of a rant! I am looking for a little advice. I have ET, triple negative. I was diagnosed at 17 so have been living with this for 25 years. I have only ever been on aspirin and watch and wait. My platlets have been rising slowing over the last 5yrs and now sitting around 780 at last result.
Around 4 yrs ago my haem suggested telephone consults and getting my bloods taken at my GP. I was told at the time I would still see the consultant every couple of years. I have been doing this happily but over the last 6 months I have started to get pins and needles in my hands and feet, night sweats, itching skin and worsening fatigue.
I went to the gp and we realised that I hadn’t actually seen a consultant since changing to telephone consults 4 years ago and also that my last few bloods had shown a “deranged” liver function, so the doctor wrote to haematology and requested they see me.
My gp called me in to have a chat today and told me they have refused to see me as they do not believe any of my symptoms are to do with my ET as it would be very rare as I am in a low risk group because of my age and never having a clot. The deranged liver result has happened every second blood test for 3 yrs so they are not worried about that either And they have told the doctor to refer me to neurology and try and rule out any other causes.
I completely understand this but I am really angry about the refusal to see me and refer me themselves, even my GP was angry about the way they have done this. I haven’t been happy with my care (or lack of it) for a long time anyway but I just don’t know what else to do. They have also dropped my blood tests and tel consults to 6 monthly. I am wondering if I should try to get referred to somewhere else or pay for a private consultation? or am I just going to be wasting my time to be told more of the same?
Thank you for any help.
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mac77
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Hi Paul, thanks for your reply, it’s been 4 yrs since my last BMB. (Probably my last actual appointment!) I had them regularly when I was on the PT1 trial. I’m presuming that was the only reason I actually had appointments at my local haematology. As since the trial has ended I haven’t seen anybody. Consultant is not an MPN specialist,
It is a Nurse that phones and talks to me but he is quite dismissive on the phone, just says he will talk to the consultant but never gets back to me.
My WBC has been slightly raised for the last few years but GP didn’t seem worried about.
Doctor didn’t check my spleen but I actually can’t believe I didn’t think to ask her to, I was just too angry I think, I’m back to see her again next week so will mention it, she did do some basic checks and ordered more bloods, also wanting to check vit B12 levels.
I’m shocked by this. I would definitely ask for a referral somewhere else, preferably a haematologist specialising in MPNs.
All of those symptoms that you have mentioned are indicative of the symptom burden experienced by many people with MPNs. These symptoms are also acknowledged by leading MPN experts; I believe it is due to cytokine activity. It may well be that you need to start cytoreductive treatment alongside your aspirin.
As for saying you’re in the ‘low risk group’ because of age and no previous thrombotic episode. I would argue the fact that you may not fit this category due to having had ET for 25 years.
Try to keep smiling and stay as positive as you are able.
It is sad that there are still people out there who simply do not understand what it means to have an MPN, (of any description). Yours, I can only imagine must be quite frustrating as you were diagnosed so young...
However, and all of that said, I'm with Mary's suggestion above. I would definitely be seeking out a referral from your GP, who does sound like they can understand your dilemma.
Not sure where you are located... (?) But perhaps you should try to see someone at St Thomas & Guys etc?
At least there, there are bona-fide MPN specialists, who will treat you and your MPN with greater compassion and understanding...
Thank you Steve, I have always been very positive, I think one of the benefits of being diagnosed young, I didn’t really know any different.
I was under the care of guys and st Thomas for many years when professor Pearson was there and then when Dr Harrison started but 15 yrs ago I moved back to the north of Scotland.
I was part of a clinical trial until about 4/5 yrs ago and I was seen regularly at my local hospital (now thinking this was only at the request of the trial, as my appointments stopped around the same time the trial did) I have another appointment with my gp next week so hopefully I can sort something out. She has been very supportive, when we spoke yesterday she was very honest about not having a clue about MPNs, she is currently going to refer me to neurology as requested by haematology and see where we go from there but I am thinking a referral to another consultant is the way to go.
Hi , I am shocked at the treatment (or lack of) you are experiencing, yes you should look for a referral to a new Haem preferably an MPN specialist if there is one near you , there are not many of them about. A change in symptoms do not in themselves mean a progression in the disease ( I have had a huge increase in fatigue and bone pain over the last 6 months and no real change in bloods) but you should nonetheless have it checked out. Wishing you the very best.
Hi garry, I think my nearest specialist is nearly 5 hrs away by car but it’s looking like the best option.
It may sound stupid but I’m not even worrying about progression as such, I’m more annoyed that they won’t see me face to face to carry out a proper examination and explain their reasoning to me. Even my GP was shocked they refused.
Just wanted to also say hi 👋 as we have a similar history - I was also diagnosed with ET at 17 and am triple negative, and have also now been living with ET for almost 17 years. Nice to know there’s more of us! Have been treated with hydroxy and anagrelide in the past when first diagnosed (platelet count 2000+) but been on aspirin only for last 12ish years with platelets stable usually around 400-600 (last year been a little higher than this 700-900 but still on aspirin only) and showing a few more symptoms as I’m getting older (mild erythomelalgia symptoms and few headaches). Although also classed as low risk, I’m seen 6 monthly and BMB’s every 5 years at the moment. Echoing what others have said above, definitely ask for a referral to a different haem department - hopefully this is possible with where you are geographically, or there is an MPN speciallist within a reasonable travel distance.
Hi Claire, I’ve never heard from anyone who was diagnosed as young as me either, It is nice to know!
My Nearest specialist is 5hrs away as I live in the north of Scotland but I’m willing to travel if I have to, I am going to have a chat with the gp next week so hopefully I can sort something out. Thank you for your message.
Hi, I would ask for a second opinion. I was also recently diagnosed as triple negative, aged 35and was basically advised that no treatment was required due to my age and wouldn't be required until I was much older and platelet count had significantly increased.
If a clot or similar happened in the interim they would reconsider.
All that is required going forward is 6 monthly blood tests with to and if I was to have surgery they would consider a course of blood thinning (assume they just mean aspirin) for a few weeks prior to surgery.
If platelet counts reach a certain point they have requested that the GP refers me back.
I would request to see someone else get a second opinion. I am 46 ET calr i get pins and needles currently watch and wait but I see my heamotolgist really regularly. Was every 2 weeks now monthly may be because I was diagnosed only 6 months ago. My GP has told me they.dont understand ET so are taking advise from heamotolgist. I was glad GP was honest with me. The Heamotolgist is hoping eventually that I will only go every 6 months.
Don’t hesitate to ask your GP for a referral for a second opinion. And to an MPN specialist. The fact that you were diagnosed so young and have been living with the disease for so long makes it especially important that you are under the care of someone with a keen interest in, and expert knowledge of, MPNs. Understanding, management and treatment options are moving at an astounding pace. The symptoms you describe absolutely fit an MPN profile and should be explored. Please use all that frustration and anger to positive ends! It sounds like you have your GP on side. Let us know how you get on. Good luck!
My gp is being fantastic, she is very open about the fact she has no idea about MPNs, but she can see how frustrated I am that what the consultant has said doesn’t match up with the information I know about them.
I hadn’t thought about how young I was diagnosed until Mary mentioned it above, it is a great point that I will be bringing up.
OMG what hospital do you go to? Change hospitals now. Find your nearest hospital that specialises in MPN's and tell your GP to refer you as a matter of urgency. I had a similar experience diagnosed in 2008 started on hydroxy, after a few appointments my consultant wanted me to have only telephone appointments with a nurse. I didn't feel this was right, this is a rare blood disorder after all. So I talked with my GP and I changed Hospital (I agreed to going on clinical trials) and I'm now a patient at Guys in London and 10 years on I still get seen every 12 weeks. I have just started my very first clinical trial so For the next 6 months I'm being seen once a month.
I live in the north of Scotland, I currently go to Raigmore hospital in inverness, my nearest specialist is nearly 5 hrs away but it’s looking like the best option!
I originally agreed to the telephone consultations on a purely selfish level, it meant a little less travelling back and fore every few months, but they did say I would still see them every couple of yrs and here I am 4 yrs down the line having not seen them and now them refusing to see me.
Guys are amazing, its one of my only regrets moving so far away, good luck with the trial and thank you for your message.
Im 45 and for the past 8 years my platelets have averaged about 1400 and I take aspirin. I have been happy with this as want to avoid heavy duty drugs for along as possible. However, I have been getting problems in kidneys now and my Haemo thinks I should start treatment.
I would also think you are in a low risk group unless you are very unhealthy and eat a bad diet and dont get any physical activity. However, if you have problems with your liver or anything and its not being addressed to your satisfaction by specialist, then yes, find someone else who will help and take you seriously.
Oh Mac this is so upsetting. Have you asked the doctor to refer you to another hemotologist. You can go any where in the country. My advice would be to ask for the first appointment anywhere. Once you are seen you could then get transferred somewhere else. I’m sure Maz would help. That’s if you are a UK resident. As for private, whilst I was waiting for my test results I thought of going private. The advise I was given as that it could be extremely expensive because of all the texts and drugs you would have to pay for.
Hi, no I haven’t asked outright to see another haematologist yet, I mentioned it in my original appointment with the gp, that was when she wrote to my current consultant and asked for an appointment. I was in yesterday to see her, that was when she told me they refused to see me and suggested referring me to neurology. I think I was a bit shocked yesterday and honestly didn’t think to ask, I left it with her referring me to neurology and the gp as good as said once I’ve been, she can go back to haem and tell them they were wrong. Not sure I want to give them that option now.
I have emailed a private doctor this morning to ask about costs and referrals but I am expecting it to be extortionate, so probably won’t be an option anyway.
Nothing wrong with setting the wheels in motion. Why don’t you get a referral to another heamo. You then attend both. After all you do need to see a heamo at sometime after all. It gives you peace of mind.
Seeing a private consultant for a second opinion isn't that expensive -it's the cost of the tests that boosts the expense. I think you are in Scotland, where I understand that second NHS opinions are hard to get. If someone in Scotland can give you the name of an MPN specialist who sees private patients then it might be worth getting in touch with their secretary and finding out what it would cost just for a consultation, on the basis that you will bring your blood results. You might find it worth while.
Keep in touch . Incidentally, if your GP, or anyone else, wants a good up to date survey of MPNs, try Wikipedia. I recently had a look at the article on myelofibrosis -and it's excellent. Good for GP education, self education, and sending as a link to friends.
Hi Rachel, I got a reply from the office of the doctor I emailed this morning to say the actual consult would be £200 but any tests would be extra, so your probably right that it would bump up the cost.
I am wondering if it’s worth it just for his opinion as he is a specialist, I believe the only one in Scotland.
I think it is difficult to get second opinions here as there are fewer choices, although thinking about it, my gp wasn’t keen when I mentioned referring somewhere else in my original appointment, she wanted to give my current consultant a chance to see me. Even yesterday after he refused she still wanted to go down the route of going with his suggestion of neurology and going back to him to say he was wrong. So maybe there is another reason they don’t like referring for second opinions.
Thank you for the tip about Wikipedia, I don’t normally trust much of what is on it but there is some good quick info on there.
This is obviously a personal choice, but me, I'd think it was worth £200 plus travel costs to see an MPN specialist : take your current and past tests with you , and the history of how you got to where you are. It looks as tho Amie (see below) knows a decent specialist -with any luck its the one you've already found.
I’m in Scotland and I successfully went down this route. My GP did a new set of blood tests (before my appointment) and I had them printed out by my gp (this is dependent on your relationship with your GP). After my private appointment a recommendation was sent to my consultant and he went along with it. We are all different but this is my experience. Good luck.
Amie, a very regular contributer to this forum is in Scotland and she has recently consulted a different consultant with great results. She maybe able to contribute some good advice for you. Hopefully she will she this post or you could PM her.
Where are you located? Maybe your GP could arrange for you to have a second opinion. My GP did this for me, my local hospital is good but I was frustrated myself with the lack of information and I still am. I am now an outpatient at Guy's, my appointments are now happening at 4-monthly intervals. I had some health issues and Prof Harrison told me to see a GP about them because she taught they are not caused by HU.
Sorry I'm late to the discussion but all above advice good. If your LFTS have gone bit deranged GP can easily arrange an ultrasound scan which will be helpful and with the classic MPN symptoms you've outlined I'd definitely push for the haem appt even if you have to pay initially for a private consult. Usually the wait for first NHS neurology appointments is very lengthy(18weeks+) as district general hospitals will only be having visiting consultants based at bigger teaching hospitals, unless you are blessed locally with a rapid service but it is unlikely as referral will be deemed as routine from what you've disclosed. Sounds like your GP is supportive and def get her to have a nosy at some of links outlined above and hopefully she'll agree to arranging the US scan.
If it’s any consolation I too was diagnosed with ET Jak 2 positive at the age of 17 I’m now 52 and still healthy and well. I’ve been very lucky as I was originally under the care of Prof Pearson and then Prof Harrison. I think it’s not acceptable that you are not monitored by a haematologist and I would most certainly insist on getting a referral ASAP.
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