Update: Hi, I'm back with a little update I guess? I finally got my referral letter through....but it isn't for a haematologist, but rather an endocrinologist? I'm really confused - I'm already under the care of an endocrinologist for different reasons and they already confirmed that my low WBC and Neutrophils were nothing to do with me being on hormone replacement therapy.
I haven't even been given an appointment, yet, as there's no free slots available, but I was wondering if anyone could give guidance or ideas on why I would have been referred to an endocrinologist, especially when my GP said it would be to a haematologist specialist. Thanks!
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Hi everyone!
Firstly, I’m new here, so hello! I apologise in advance if this isn’t the right place for this question...
I get my bloods monitored very regularly due to other health issues, but last week a GP raised the fact that my white blood cell count and neutrophils are really rather low, and have been consistently for some time. As to be expected, different health services involved in my care all thought another service was dealing with it, but it turns out that wasn’t the case.
Anyway, they phoned me and went over some questions (asking about night sweats, fatigue, weight loss and so on) and have put me in for an urgent haematology referral.
I’ve been careful not to google my symptoms into oblivion, as I’m sure we all know that anything and everything will throw up The Big C, but I am really nervous. Despite having many chronic and, at times, serious health issues all my life, I’ve never been seen by a haematologist. I have no idea what to expect, which is scarier to me than imagining possible diagnoses (at the moment, anyway).
Basically, I was just wondering if anybody might be able to give me some idea of what to expect (I’m in the UK, and would be seen at an NHS hospital if that makes any difference)? I know that every case is different, of course, and I’m not asking if anyone can give a possible diagnoses or anything, but I’d feel much better if I knew what might be involved. Are they likely to make a preliminary diagnosis? Should I prepare anything to take with me?
Sorry if this is a really vague question, I’m just a bit of an anxious mess right now!
Thanks in advance,
EJ
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Welcome to the forum and sorry to read about your issues, Hopefully they can get to the bottom of it.
I can understand you being anxious and think you are right to avoid google.
I would expect before your visit you will be required to have a blood test (or if you had a recent one they might use that).
Its hard to say if they will give a diagnosis of any type, it depends if they have enough information.
I would expect your first visit to be a chat, go over your results, talk about any symptoms you might have. What happens next depends on if they think your counts are ok to be monitored, then they will put you on a monitoring plan, 3,6,12 months etc.
If they feel they are needing more investigation they are likely to have you maybe do additional blood tests to look at specific areas (when we have one they usually test for whatever it says on the blood forms). So for me i was asked to do a further test and return a couple of weeks later for the results.
I would say 'if possible' take someone with you, not sure if in the current climate its possible, your referral may even be a phone consultation. I think having another pair of ears is good though as its easy to look back and think 'what was said'
Welcome to the forum. Glad you found a place to ask some questions.
The first step will be a comprehensive set of blood tests, including a Complete Blood Count, Comprehensive Metabolic Panel, and a variety of other more obscure tests that might explain the leukopenia. The hematologist will review all of the medications you are on to see if any have this particular side effect. Likewise, the doc will review all of your other medical conditions to see if this is a secondary symptom. The hematologist may also recommend Bone Marrow Biopsy if needed.
There can be a number of reasons for the decreased white blood cell counts. It does need to be followed up on, which you are already doing. It will take a bit of work to figure this out, but be confident that your care team will get it sorted out. It is turns out that you do have a MPN, then it is really important to consult with a MPN Specialist as most hematologists do not have the KSAs to provide optimal MPN care. Here is a list just in case you need it.
It is really reassuring to have some idea of what the next steps may entail, and I certainly feel a lot calmer about it all now. Thank you so much for your kindness and help, it's already made a big difference and I feel much more confident going forward. Thank you!
My first appointment was fine, bloods taken earlier in the day to discuss. Initially bloods were sent to a London hospital for diagnosis. My Haematologist was friendly and prescribed medication and follow up there and then. Although I have regular appointments I have always found it just like a GP appointment although be prepared that some around the patients in the area may be on chemotherapy and most of the posters are regarding different organisations and helplines. This may not be so in all hospitals. I went alone and I was fine. Good luck and let us know how you got on.
Thank you so much! That's a really good point, actually - I can picture myself sitting in a waiting room (if my appointment is in person, of course, what with Covid-19) and getting really stressed out/scared by any posters and leaflets. Thank you so much!
If you do get an appointment in person, remember that you may be in a department that deals with all sorts of conditions. My first appointment was in the Macmillan Centre and I just assumed that it was the most suitable place in the hospital for a haematology clinic. I had been led to believe that I had anaemia! So there are unlikely to be any posters that refer to MPNs as they are rare diseases. Remember that if there is a corner that has wigs for sale, it doesn't mean that you will qualify for one!
Gosh, thank you so much! This will certainly help quell any panic, because I can totally see myself getting really scared if I walked into a waiting room/centre like that!
Hi, morning. I was diagnosed this year. Been to haematologist 4 times now. Got an appointment this Friday. The clinic nurse also calls and checks in between as to how things are going and also reviews bloods. I do get a little anxious as to whether platelets have improved but they are all very helpful and reassuring. Hope all goes well. Please let's us know how it goes
Thank you so much! It's really reassuring to hear so many people talk about the high quality of care and support - it gives me a lot more confidence going forward!
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UPDATE: FIRST HAEMO APPOINTMENT. NO PV. 
What happens next?
Hydroxycarbamide. How high were your pplatelets when put on this? 
Retina
