I had my long waited for follow up visit to my haematologist earlier in the week. I thought I had prepared well for the consultation, in that I prepared a carefully written sheet of current symptoms and concerns, and also some questions that I wanted to ask. I was actually looking forward to the appointment, and hoped that it would give me some reassurance and a sense of the ET condition being well looked after.
My appointment was a fairly early morning one, and I have been struggling with mornings lately, and the Great Day unfortunately coincided with me experiencing fatigue quite badly. My wife kindly accompanied me to the appointment, and supported me throughout the consultation.
Whilst still walking into the room, the haematologist asked me how I was. I replied that I was not feeling as good as I had when I saw her at the previous appointment (3 - 4 months ago). She responded by asking if I thought that was due to my medication.
I was rather "thrown" by this question as she should have known that I was still only on daily aspirin. I responded, whilst taking a seat, that it was not due to medication, as I wasn't on any, but I thought it was due to having rather too many platelets in my blood! After all, they had been climbing steadily in numbers.
I briefly managed to introduce my wife at that point, then I was asked about what symptoms I had.
I responded that I was greatly troubled by fatigue and that I was starting to experience the migraine-like headaches that I had before I started daily aspirin. I added that I had also had a "silent" migraine of the type where only a visual display of coloured lights is experienced, but no pain. I made the comment that aspirin completely made these things go away when my platelet counts were much lower (800 - 900s).
She then told me that you don't get headaches with ET, because platelets are tiny things, and that it is PV people that get headaches, because the red blood cells are much bigger and tend to clog things up. She also said that fatigue is a" very vague thing", and it could be caused by all sorts of things that have nothing to do with ET.
She also (rather patronisingly I thought) said it is normal for platelet counts to vary between 150 - 400, and implied that I shouldn't be so concerned about my ones rising. Mine have climbed steadily over the last couple of years, and have never dropped, I was 1050 at the last count.
I managed to tell her that, "with respect", she was wrong about ET and headaches, that there was a relationship between them, and that my fatigue was now causing me so much trouble that my work (I am self employed as a potter) had almost had to be reduced to the level of a hobby.
We then "progressed" to Hydroxyurea. When HU was mentioned (along the lines of, well you might try it if you really think that your symptoms are caused by ET. We normally wait until you are 60 or the counts are 1500, but you can start it if you like).
I said I had concerns about HU, because I have problems with fair skin that burns very easily and have had many "dubious" moles removed over the years that were thought to be turning cancerous. I also have had chronic mouth ulcers. I asked her if it would be possible to have interferon instead.
She responded with, "I don't know where you have been getting your information from...." I was assured that "heaps of her ET patients take HU without problems", and that it doesn't have a cancer risk, and is given to infants who have sickle cell anaemia. She said that interferon has troubling side effects, needs to be injected 3 times a week, and indicated that she would not be able to administer it anyway without some sort of special authority, due to the costs and funding guidelines. (Ha, we certainly didn't get to discuss the more expensive slow release interferon).
She wrote me out a script for HU, said to take 2 500mg tablets daily, and that I had better have 2 weekly blood tests (after asking me how often my blood tests were currently... I thought she should have known that!). She offered to print me out an information sheet for HU "if I wanted it", but offered no further advice.
I tried to prompt for more information, saying that I understood that it was important to keep well hydrated? Her response was to caution that some people overdo that "by trying to do the right thing", but between 2 - 3 litres per day was sufficient.
And that was it.... I left a copy of the carefully written sheet that I had hoped to discuss on the haematologist's table. I mentioned that I got most of my information and support from MPN Voice, and that there was a link to this good site on the sheet that I left with her. And out the door we wobbled.
I was so thankful to have my wife with me. The appointment had gone very badly, and it was helpful to be able to discuss it with her, and to have had her to confirm my impression of it.
I had not been able to put my point of view at all effectively at the consultation, because of the fatigue, and do realise that this made things harder for the haematologist, but I do know that she was quite wrong with a number of things.
I wish I had the cheek to ask her how many ET patients she had, as I found the description of "heaps of my ET patients" a bit hard to believe. Our city has a population of 100,000.... given that less than 3 people per 100,000 are diagnosed with ET per year, than it is unlikely that our city has much of a "heap", unless there is an unusual ET hotspot here! Unfortunately it is just about possible that she might in fact have a small "heap" as she may well be overworked. We are very, very short of medical specialists in the South of the South Island of New Zealand, and I rather suspect that there will be few haematologists so I probably won't get to choose who I see.
I am very troubled by all this. I have not yet started the HU, but think that I will have to. My GP has prescribed blood pressure and cholesterol medication for me, that I was about to make a start with. I had my first BP pill yesterday, but have had a similar headache to my ET related ones, and am wondering if I would be best to get the platelets down with HU first, and then tackle the BP. One problem with the BP pills is that they have a diuretic effect, which is probably the last thing I need when my brain is clogging up with tiny "non-clogging" platelets!
Thank you for providing a forum where I can get some of this off my chest. I'm sorry it is not a cheerful post. I have huge sympathy for all of you who have suffered from bad experiences with Specialists and GPs. It would be bliss simply to be believed and taken seriously.
Doctor visits/year average with ET?
Hydroxyurea vs interferon for younger patients
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New with ET and this week I completely fell apart
