Fatigue and itching

I have Essential thrombocythemia (ET) and saw a new consultant today. She is saying that fatigue and itching skin are not symptoms of Essential thrombocythemia (ET). I know that a lot of you with Essential thrombocythemia (ET) have written about having these symptoms in the past, so I am a bit worried that this new consultant doesn’t seem to recognise them. I am wondering what your consultant has said about these symptoms. I would like to hear from other Essential thrombocythemia (ET) sufferers. Thanks.

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Hi @Chris1.
I hope others can share their experiences. May be worth giving the support line a call to see if they can help. Keep us updated.

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Thanks. Nichola 75. I hope so too. Not too good with phone calls as I suffer bad tinnitus and that makes it worse. Thanks for the suggestion though.

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My husband suffers with that. Can be awful sometimes. I’ve copied in the @BloodCancerUK_Nurses to see if they can advise. Take care :blush:

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Hello Chris1 - oh dear disheartening appointment for you eh! - as yes you are quite right itching and fatigue are certainly well known symptoms of Essential thrombocythemia (ET) (which I have too, diagnosed 18 years ago). Sounds like your consultant doesn’t specialise in MPNs may be worth speaking to your GP see if you can get referred to one that is? Don’t know if you use Myeloproliferative neoplasms (MPN) Voice at all - but this link is handy as it features what’s called the Myeloproliferative neoplasms (MPN)10 a tracker to record severity of symptoms to share at your appointments - as you will see within the 10 main symptoms mentioned both itching and fatigue are there!

https://www.mpnvoice.org.uk/living-with-mpns/ways-to-feel-better/keeping-track-of-symptoms/

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Hi @Chris1 you can also email the Blood Cancer UK support services on support@bloodcancer.org.uk if that helps

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Hello @Jilly20 . I do belong to the Myeloproliferative neoplasms (MPN) Voice and it is a very good website. I mentioned this to my new consultant and she stood her ground against both the symptoms being anything to do with Essential thrombocythemia (ET). I also told her that she was going against one of the top consultant haematologists at Guy’s hospital (Prof Claire Harrison) . I can’t ask to see another consultant, as I live on an island and there isn’t one. Our ferries are so unreliable especially in the winter, otherwise I would ask to be referred to the university hospital on the mainland where they have Essential thrombocythemia (ET) specialists. I am hoping that our new MP can do something to improve the ferry service then I can get a transfer to another hospital. This new consultant does not fill me with any confidence, and the best doctors never come here, they go to the top hospitals on the mainland. I feel like I am caught between a rock and a hard place.

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@Chris1 you have a dilemma there, lets hope that your new MP improves your ferry service, strike whilst the new MP is keen and look after yourself

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May be print of the page of the Myeloproliferative neoplasms (MPN)10 I posted above so she can see they are standard documented symptoms. It does make it difficult if you are stuck with a local hospital without the specialised departments and consultants. I know I am near the Isle of Wight and have met many patients who travel over to the mainland to go to the University Hospitals in Southampton and Portsmouth that do specialise in MPNs. Maybe as Erica suggested give the helpline a call and see what they can suggest. Hope you get a bit more help.

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Thanks for your replies @Erica . He has announced that he is giving priority to improving the ferry services. He will need them himself to get to Westminster as he lives on the island. They are private profit making companies, so I think the best we can hope for is to get them regulated to provide a reliable service. Then I can have a choice of medical care.

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Thanks @Jilly20 . Are you under Southampton hospital? Do you know who is the best haematology/oncology consultant there for Essential thrombocythemia (ET)? I have looked up the consultants but not sure which one would be best to ask for referral to.

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Hi @Chris1, and everyone else, I can confirm that fatigue and itching are a BIG part of this Essential thrombocythemia (ET) sufferer. I was diagnosed a little over 6 years ago now, some 6 months after my first (so far!) heart attack and the fatigue feels to be a huge burden within my life, and for the last several years. I still manage to work full time (just!) but the fatigue definitely feels more “all encompassing” these days. The itching also feels much worse when the fatigue is at its greatest, sadly, but it is what it is. The different consultants that I see at Leicester Royal Infirmary are aware of my fatigue and itchiness but can offer little comfort for either issue. For the fatigue they suggest doing exercise or going for a walk, which can be overwhelming after a 10-12 hour shift, and for the itching one of the team suggested showering every other day, something not really practical after a days work. I don’t know what the answer to either issue is, sadly.

Take care all, stay safe and look after yourselves.

Jimbo165

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Hi Chris - ah I am glad I mentioned IOW just had a feeling when you said island, mainland and poor ferries that you were local :grinning::stuck_out_tongue_winking_eye: I have a lot of friends on the island so know from them the challenges re health care and the need to come over here to the mainland to get more specialised help. Yes I am under Southampton General - their haem/oncology are really very good and a few consultants deal with MPNs a number of them aren’t listed on the hospital website. You need to ask to be referred to Andrew Duncombes team (you will find him on the website) he is very experienced in MPNs and Myeloproliferative neoplasms (MPN) research. It’s worth knowing the team are very happy to deal with patients under a telephone clinic so could be very handy for you after some initial appointments in person at the hospital clinic they would be happy to monitor you with appointments over the phone, I do that and I am only down the road from hospital :grinning: They have a lot of patients on the island. I am sure you will find far more effective oversight with his team (I am under one of his team in recent years after some years with him, all of them are excellent) and especially for treatment options. They are good at keeping everything checked with fatigue symptoms too as it’s a huge part of Essential thrombocythemia (ET) but they will check all other things that can add to Myeloproliferative neoplasms (MPN) fatigue too which is helpful. Hope you find that useful.
Oh and in case you have not been to SGH before, it’s worth knowing it’s a VERY BUSY hospital, horrendous parking so from the island you would be way best coming as foot passenger on the ferry or jet and get a taxi (it’s not too far) to the hospital but lots lovely coffee places and shops to keep you going on site !!
Keep us posted how you get on

Oh just read back and see phone not easy for you re tinnitus so you could weigh up re phone clinic being helpful in due course or not - the usual checks are three monthly

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Hi @Jilly20 . Thanks for the information. I have checked Dr Andrew Duncombe and he does seem to have a good knowledge of Myeloproliferative neoplasms (MPN)’s. I have written down his email and phone number. I’m not sure if I need to get a referral to see him, but I will send him an email and ask him. I am so fed up with my local hospital. Since my consultant left in December I have seen a locum once, had appointments cancelled twice and the consultant that I saw yesterday is thinking of staying, but I felt it was a battle with her not acknowledging two of the main Essential thrombocythemia (ET) symptoms. I really want a Dr who is on the same page as me and understands Myeloproliferative neoplasms (MPN)’s and how it affects me. I don’t feel safe with the current situation at my hospital. When I was first diagnosed I had a serious reaction to the hydroxycarbamide and I didn’t get any support or help from my haematology. In fact the consultant at the time got cross with me because I had to get emergency help from the GP. That was in 2022 not long after I was diagnosed, and the level of care has just got worse and worse. Thanks for the information about SGH . I will let you know how I get on.

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Hi @Jilly20 . I have just emailed Dr Andrew Duncombe, so I will await his response. I’m familiar with SGH as I have had several neurological appointments there and neck surgery in 2014. But thanks for the heads up.

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Hello @Jimbo165 . Thanks for your response. It’s good to know that I am not completely mad. I have known all along that both are symptoms of Essential thrombocythemia (ET) but having a consultant that does not acknowledge this is unsettling. I have just checked her out on Google and her specialism is as a breast cancer consultant. No mention of Myeloproliferative neoplasms (MPN)’s. She is a clinical haematologist but I feel that she was fudging her way through the consultation. I’m now looking into getting a referral to a better hospital where they have Myeloproliferative neoplasms (MPN) specialists. I have been fobbed off regarding symptoms for the past two years and I have had enough of it. Just to have a Dr that acknowledges the symptoms would be a step in the right direction. I hope your symptoms are not too bad at the moment. It must be very difficult having to work such long hours and dealing with fatigue as well. At least I am retired now, so I can rest when I need to. Take care and thanks for your input.

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Good afternoon @Chris1, and everyone else, I hope you are all doing well and will have completed any and all chores before settling down to watch one, some or more of today’s sporting extravaganzas, if that is your thing. I’m all shopped out, and in my alter-ego, The Domestic Goddess, my housework is all done, and I am semi-relaxing.

@Chris1 you are more than welcome and, whilst I can’t give you a mental capability diagnosis, I can categorically state that you aren’t completely mad with regard to this matter. I promise myself, pretty much on a daily basis, to not overdo things and to know my what and where my limits are. However I usually (mostly!!) overdo things and then spot my limits in my own personal “rear view mirror”. Such is life.

Now then, on my last two clinical appointments at LRI I have seen a Consultant Pharmacist Haematology lady and I have genuinely felt the most listened to during my 6+ years of dancing (Credit to @clickinhistory!) with my Myeloproliferative neoplasms (MPN).

Remember to be kind to yourself, to carry on smiling, to take care and above all to stay safe.

Jimbo165

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