I was diagnosed with ET triple negative in Dec last year, follow up bloods to confirm in Feb. My consultant wrote to the gp to increase my omeprazole (previous stomach ulcer) and put me on baby aspirin as I'm not yet in a high risk group. I've basically been ill ever since. I'm getting horrific headaches, this last one has lasted 6 days, although it's varied in severity. And now I'm struggling with heartburn, which isn't something I thought I'd get while on a double dose of Omeprazole 😕.
The consultant also asked the gp to refer me to an NHS hematologist dept for on going monitoring as my insurance would only cover the diagnostic stage. This still hasn't happened and, surprise surprise, I have to go and see the gp on Monday about my latest blood test results. I will be mentioning the heartburn and headaches. It's taken over 4 years of tests to get me to this point and I feel worse than I ever have.
I just want to feel well again, does anyone have any tips?
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Dark-Angel
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Sorry to hear that you are struggling right now with some nasty symptoms, and I hope that they clear up for you sooner rather than later...
So... I am a tad unclear about whether or not you are regularly seeing a specialist Haematologist, and if not...? I believe that you should be...
Your condition warrants monitoring at least on a 6-8 week basis. and if you are having to deal with very high platelets, then perhaps even monthly visits would be more appropriate...
If I were you, I believe I would be seeing my specialist a little more often, rather than your GP.
Thank you. I am currently only seeing my gp, I have to wait for them to send a referral off to the specialist and when I checked during my blood test last week nothing had been done regarding the letter from the private consultant dated in February! It's so frustrating, but my normal gp left the practice and no one picked up on the referral request apparently. I will be insisting on the referral when I see the gp on Monday.
I was initially diagnosed with sticky blood 13 years ago, I've only just started taking anything for it this year once I got the ET diagnosis and now I dont think the medication id agreeing with me, I felt so much better before any of my med increases. My platelets aren't massively high, they've been raised for many years though. I'm wondering if there is a more natural way to manage it, without risking a stroke obviously.
Yes, and as Aimee quite rightly said... We are allowed to feel a tad down from time to time... Just don't let it take over is all...
Yes, insist on the referral, and if they don't give it to you... You can easily find another GP who will. Rather than let people dictate too much to you, when you have every right to be concerned, sometimes taking some affirmative action can help too...
Osidge also made a good comment below...
"Is the Aspirin that you are taking 'Enteric-coated'?"
If not, then please change right away... it will make some difference I am certain. I know I also had problems with aspirin at first... but not any more...
Hi Dark-Angel, I think you are entitled to feel sorry for yourself considering how you are feeling. I can’t take aspirin or any other anti inflammatory meds because of irritation of my stomach which includes severe pain and nausea. I was diagnosed originally with PV but have since been diagnosed with idiopathic erythrocytosis, too many red blood cells - cause unknown, due to being double negative to jak2 and jak Xeon 12 mutations.
You still need to be monitored by a haematologist, with blood tests on a regular basis (I’m every 8-12 weeks) to make sure your blood is not too thick. Please insist on this appointment and insist on a remedy for your stomach. My stomach symptoms on aspirin outweighed my risk but this may not be the same for you.
Thinking about you, sending E hugs and keep in touch, you are not alone.
Hi Steve, unfortunately I’ve tried the lot and still end up with a reaction to any anti inflammatory meds, including gels like voltarol. I couldn’t believe it with the gels but I’ve given up with any of these meds now which is a pain with the amount of inflammatory and arthritic issues I have. Hopefully your suggestion will help Dark Angel and I’m just an exception to the coated aspirin.
I am sorry to hear that an enteric coated baby aspirin gives you so many stomach problems as it does not release its contents till it has left the stomach. Perhaps you have some allergy to NSAIDs. Have you tried clopidogrel which is not a NSAID?
Be prepared for your GP to know very little about MPNs . So politely but firmly insist on being referred to a hospital haematology dept for as early an appointment as possible pointing out how much time has already been lost because the consultant's letter was not acted upon. Good luck! You will feel better ….. Sallie
Hi. I’m afraid I don’t have any helpful advice beyond what’s already been said. But I wanted you to know how sorry I am that you’re having to go through all of this. It’s bad enough to have this diagnosis but to have these other problems is a real shame. Please let us know how things turn out & post any time you’re sad, frustrated or angry. Sending you hugs & moral support! Katie
Thank you all for your kind comments and advice. I've been to the gp today and they said that they had contacted the heamatology dept but the response came back that it could be monitored in the community.
There are a few issues with my blood (as I'm sure there probably are for many of you). Firstly my platelet count is 589 (up from 479 in Feb, but it's been up and down like that for years), I know this isn't massively high and that's why I'm in the lower risk group. Secondly my red blood cells are quite small, and I'm intermittently aneamic. The gp wants me to take iron tablets, but that will increase my platelets and I've been told I must not take them by the consultant (heamatology). The gp is also sending me back for another gastroscopy as the aneamia and small blood cells lead them to believe I'm bleeding internally (and now I'm on aspirin and getting indigestion even though I'm taking 2 omeprazole tablets a day). This will be my 3rd gastroscopy in 4 years (as well as an endoscopy, ct of the small bowel and capsule endoscopy) as this internal bleeding thing has been a recurrent thought, so far they haven't found anything but obviously I can't risk it as I've had a stomach ulcer in the past and had to increase the omeprazole if I was to take aspirin. The gastrologist said she wanted me monitored in the community for the aneamia, blood tests every 3 months, I think this is the letter that was sent to the heamatology dept and they rejected the referral. My gp is going to try again after today's visit and will send all the evidence off, but still doesn't think they will see me.
So I'm at a bit of a loss, what do I do now if the heamatology dept won't see me? I cant go back to the original consultant as this was under private medical insurance and they dont cover chronic illnesses, just diagnostics and flare ups.
Sorry for the long post, it's just so frustrating and no one really gets it anywhere but on here 😔
Hi Dark-Angel, I think it’s time to make a fuss and insist on a second opinion from a different haematologist. Where do you live? Perhaps some of the others on the forum can help once they know that. So sorry you’re still struggling and sending you E hugs and hoping for answers for you.
I’m so much more assertive than I used to be due to my condition.
Hi Dark-Angel, ditto to Aime’s post - after ‘issues’ I got a referral from my GP + changed haems, but have to say at least I had that option (what on earth is this ‘monitor in the community’)!! I have seen a link to an MPN specialists list (maybe someone can pass it on to you) - would be worth investigating? Very best wishes. Anne-Marie xxx
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Sorry it has been a while with an update on Ruxolitinib
A bit confused
Still getting PV symptoms...
This is all a bit new to me..
ET was the surprise of my year
