Annoyed at my haematologist's attitude

[lynnieb]

My platelets are quite high at 1400. At my last apt, they'd gone down to 1100. I was told they'd never go below 1000. I told my Dr I was feeling rubbish, with headache, spiking pyrexia, (shoots up to 38.1C) exhaustion, pain in toes etc. She looked at me like I was an idiot and told me that as my platelets were falling, that didn't make sense! It is not up to ME to make sense of it, surely?. And they are still fairly high. I was just checking that I didn't need any other medication. Some doctors just shouldn't be in the job. I have other health problems including neurofibromatosis, and I just want to feel a bit better. So frustrating

[vickyturff]

Hi Lynnieb,

It is annoying as I was basically made out to be a hormone ridden menopausal woman.

He told me to see an ophthalmologist regarding blurred vision. This comes and goes and is only in the distance its like Vaseline in your eyes. He couldn't get rid of me quick enough.

I really feel for you it is very frustrating. All we want to do is get on with out lives what ever our situation and if we can be medicated to help with any symptoms then it should be taken seriously.

I really hope you get the help you need.

Lots of love to you.

Vicky x

[Nickthedevil]

Hi Lynnieb did she say why they would never go lower than 1000? This is still more than double the maximum 'normal' range! You shouldn't have to put up with such an unsympathetic attitude. Perhaps you should ask for a referral for a second opinion. I hope you get some help and feel better soon. Karen x

[Nicky57]

Hi,I asked my GP to refer me to Guy's so she did. They are the MPN experts so would be the best people to be looking after you, as long as you can get to London. It's definitely worth it.

All the best

Nicky

[Belgobrit72]

Sounds dreadful when you need someone to reassure you. I had a very blasé, 10 words an appointment consultant for a while but my current one is the loveliest lady and could not recommend her more ( part of the Bristol MDT).

[cwayman11]

Guys hospital is superb

[bordeauxgirl]

Also if you are near Birmingham Queen Elizabeth... Dr.Smith and the whole Haematology

team there are excellent.

[Helpatlast]

Hello Lynnie so sorry you have had a rough time and as others said sounds like time for a referral elsewhere with someone specialising in MPN. Maybe if one local to you come along to a MPN Voice day too as that would help you to talk to others and find some empathy as well from those also facing the effects as you are. Your symptoms certainly go with high platelet levels and yours are high still - I presume you are on Hydrea for treatment? Usually process is to keep adjusting the dosage of treatment until the levels are getting more "normal" and I certainly have never heard of anyone before being told they won't get below 1000 - sounds a little odd. All the best girl get moved and you will soon feel much easier and better under the care of someone with more experience in ET. Keep us posted.

[nodmeister]

The others have said it all I just want to wish you luck and hope you get rid of that Dr. soonest.💋

[beetle]

Don't you just wonder why some doctors are in their jobs? I had a GP tell me that HU was not chemotherapy because my hair hadn't fallen out!! Move to another one as quickly as possible. Our conditions are rare and it's best to go to someone who knows what they are talking about. I am in the fortunate position that my haematologist worked with Claire Harrison before and I have also seen her so they correspond about me. That also saves me travelling to London. I do hope you can get to see someone else who will listen to you and make appropriate suggestions. Best wishes, Jan

[heathermc]

It's not fair the difference in treatments offered. Your platelets sound high. Hope you get it sorted. Good luck.

[Cecilie]

Some doctors are so arrogant, it is just scary. I know that MPNs are rare but still... I'm amazed at the lack of knowledge from GPs and others who can't be bothered to read about the disease when they come across a patient with MPN. Good luck, hope you find a doctor who listens to you.

Best wishes, Cecilie

[Lainy1]

You must be so worried, as everyone has said best to get a second opinion. Have they started you on chemo drug to bring platelets down? My platelets got to 1450 with all the same effects you describe, the burning pain, pins and needles in hands and feet were the worst. Stress is not good for MPN and it sound like your doc is adding to that. Best wishes lainy 🤗

[Hidden]

Its so frustrating when they lack bedside manner and lack empathy - I also just read a book by a lady who is an NLP practitioner who had breast cancer, it was very interesting meeting her and then reading her book especially as the mind is such a powerful tool and yet the medical profession give you so many negative or subliminal messages, is it any wonder that a study done on people who were told they had x time to live died to the day yet without any cancer left in their body. To tell you they will never go below 1000 is so negative and if you believe it then it will be.... I am definitely defying doctors when they tell me things or say I should take a medication (her tip in the book was never to read the side effects but get someone else to otherwise guess what the mind will give you all those side effects, I guess the same goes for what the doctors tell you WILL happen!). My biggest tip at the moment is for everyone to watch on Netflix "What the Health" it will blow your mind. I also got rid of an old haemotologist as he was just awful and rude! Good luck and keep positive and focus on what else you can do to help yourself whether alternative therapies or mind work. x

[socrates_8]

Hey LynnieB...

I hear you loud & clear...

I guess it is a part of our having these various extremely rare conditions. Most GPs that I have seen know zip about the three main MPNs, (ET, PV & MF – & even less about those other even rarer types), in my view...

My current GP, nice English guy, working down in here in Sydney, but readily confesses that he is sure that I am better acquainted w/ this complaint than he may ever be etc... (I do admire his open frankness).

Like you, I am having to ask myself, why is it that I am having to explain to my specialist about all the academic papers that I have read, in order to better inform her concerning my MF condition...? Answer, because at least I can... Not very satisfying nonetheless...

I am Post ET, early MF w/ a grade 2 BM scarring. Now on Ruxolitinib after not being able to tolerate either HU or Interferon for very long. However, there is an ongoing problem for me, because my PLatelets are all over the place and the latest results today saw them bounce right back up (c. 170pts), to 998. And I have not been at that level since a year ago...???

About 5 weeks ago, I asked if we could try to start reducing the dosage from 25mg bd, to 20mg bd... However, I can actually feel when my platelets are starting to rise to those unwanted lofty heights, yet again... And naturally, I do become a tad apprehensive about it all since having had a TIA (minor stroke) in August 2015. That was quite a fascinating experience, and one that I am in no hurry to revisit...

Like you too... My symptoms are usually just below the surface at almost all times, whether my platelets are up... or down: headaches, nausea, extreme fatigue, spiking temp's, cold sweats, burning pain in both my hands & toes, anaemia, bruising, some vertigo and a general weakness, shortness of breath, reduced ability to exercise, and might also occasionally include some mental confusion.

However, I just keep trying to learn as much about my condition as I can, and pass it on to my doctors, in the hope that it might benefit someone (if not myself etc)...

Aside from all of that, I also just keep telling myself which day is the best day of the week... TODAY!

Best wishes Lynnie

Steve

(Sydney)

[francesb]

Hi, this doctor sounds awful. If you contact Maz who runs this site I'm sure she could advise you of MPN specialists nearest to you and then you can ask your GP to refer you. M good luck, I hope you get a sympathetic doctor soon, Frances

[Inca]

Along with every one else,I am horrified at your treatment and hope you soon find an well informed Dr . Very Best to you