heartburn

[doglover49]

i was diagnosed in May with E.T just told to take an aspirin a day, had a follow up few months later with haematologist then told see you in 6 months, she asked me if i had any heartburn since starting the aspirin which at that time i didn't, but i am getting it all the time now, is this a problem? i am always dizzy still as well, ringing in my ears, fatigue, but is this the new normal now? no point phoning my G.P any more it feels like a waste of time, i am waiting to hear from ENT regarding ringing in my ears which i have had since march this year, it's more about the heartburn tho can i take nexium control for it does anyone know?

[Jody00]

Hi am 42 years old am not sure about heartburn,but I do suffer from dizziness,ringing in my ears,fatigue, bit of bone pain, pins and needles in feet and hands but most could be due to condition we got has I see my haematology every 3 months at moment am on 75mg aspirin and my platelets are on 745 hope u get your heartburn sorted ,everyone on hear so nice and knows alot about our condition 😊 Xx

[doglover49 in reply to Jody00]

thanks, i just remember them asking if heartburn was a problem, and if it did become one they would maybe have to change the apsirin, i have only had it this week so will see if it goes away soon, i am just never sure what medication you are okay to take if you are taking anything for blood thinners, does your haematologist accept dizziness ringing in ears fatigue are all symptoms of this? the second time i went back to see them i was told these are not symptoms of E.T, i asked her well what are symptoms she told me tingling in the hands and feet which i found very strange, as lots of people on here have these symptoms too, i also told two of my G.P's who both said to me no these are not symptoms of E.T!! and when i said about people on the forum having these symptoms their reply was well if you have a group of people there are likely to be many of them with the same issues??? they are hopeless and just dismiss it

[Jody00 in reply to doglover49]

Yes one of my doctors a while ago said same not related to condition we got,but when I rang clinical care nurse for haematology she said am having thses symptoms because my platelets have roses slightly so my haematology says it is due to our condition think but not sure if something to do when platelets rises,but my doctors thought it was vertigo and tinnitus but the tablets there gave me for vertigo didn't work so then thats when a rang my clinical care nurse and she told me like others do on hear thats it due to our condition a do know u carnt some tablets while on aspirin but am not sure on all of them u could ask someone on hear maybe able to help because there have always give me good answers Xx

[IrishHiker in reply to doglover49]

I have had ear ringing over 40 years. Fatigue has just become a daily visitor for me in the last year and a half. My Haematologist said it definitely is related to my ET (had it over 22 years).

[doglover49 in reply to IrishHiker]

this is what i found strange as well, for her and two of my G.Ps to be saying these things are not related, it's only tingling in the hands and feet that are symptoms of this!! how can it be possible to have a blood cancer and that is all it does to you

[Wyebird in reply to doglover49]

Before I was diagnosed with ET I had to come off clopidogrel ( aspirin alternative) for 10 days ready for an op. As time went on I was increasingly light headed and lead me to believe something was wrong my platelets were about 550. Dizziness must be investigated. Is your heamo an MPN specialist?

[doglover49 in reply to Wyebird]

no, i have had this dizziness for a long time now, i think i will need to find out about the MPN specialist

[Jody00]

My doctors are not too bad when a talk to them on phone there ask to see me in person ever so often has say we not seen u in a while there do do checks ups on when a tell symptoms I have they gurd like that u may need to change doctors with looks of things if there are not doing anything for u or not given u answers u need thats not fair at all Xx

[doglover49]

thankyou its hard eh! i am trying to keep going as normal but had to cut down my work i am just so tired and this dizziness is horrible, i keep telling myself lots of people are a lot worse off but just wish i could be back to normal again, have you had anything for dizziness and ringing in ears? is this just a part of your normal now too? i am waiting to go to ENT but i know it's to do with this and there will be nothing they can do, i might just cancel appointment when i get it x

[Wyebird in reply to doglover49]

Don’t cancel your appointment but as Maz for a list of MPN specialists

[Jody00]

I just learn to Try cope with it which think now am just use to it when ever it comes and goes cos like u say am not the one for bothering with the doctors plus am not a tablet taker has it is had rather just try cope with it all but thats me since its due to condition we have then a say well a may aswell just get on with it but yes I do get dizziness quite alot more like lightheaded and ringing in my ears comes and goes I always get the feel of pins needles in my feet and hands ,bk pain is worse a do get hip pains knees pain well feels sore fatigue aswell but took me a while to get use to the condition we got but think am still getting there and nearly there after my diagnosis last year in March when covid just started Xx

[doglover49]

great isnt it lol, thats it just need to try get on with it as you say, i don't want to take tablets either so will just need to get used to it all as well, thanks for your reply x

[mhos61]

I would consult with an MPN Specialist, even if it’s just for a second opinion. Better still, if travel isn’t an issue you could make a permanent change.

You have quite a heavy symptom burden. An MPN Specialist will acknowledge your symptoms are MPN related and may ‘suggest’ (your choice) cytoreductive treatment. Your present haematologist is probably seeing you as ‘under 60’ hence aspirin only! Some young patients need cytoreductive treatment too!

The aspirin also needs addressing. Do you take dispersible or enteric coated? It may be you need an additional stomach protector or, a change to clopidogrel.

[Wyebird in reply to mhos61]

Well said

[doglover49]

thanks, i will have a look into the MPN specialists i am in Scotland, i think you are correct as the hematologist basically said i would probably end up on medication when i am older but to just take aspirin just now, its just dispersible aspirin i take, the heartburn is quite bad i was just worried in case you are not meant to take anything for it in case it causes any more problems

[mhos61 in reply to doglover49]

A lot of MPN patients take the enteric coated aspirin, as it’s kinder on the stomach due to it dissolving in the small intestine. You could try that and see if it makes a difference.

I’ve heard a few patients mention an MPN Specialist in Edinburgh.

[hunter5582 in reply to doglover49]

mpnforum.com/list-hem./

[Megabyte in reply to doglover49]

Hi, I’ve made an appointment to see Dr Mark Drummond, (normally based at the Beatson,) at his clinic in Edinburgh - fed up getting messed around by my local haematology clinic so looking for some reassurance/second opinion from Dr Drummond. He has a fantastic reputation. His clinic in Edinburgh is on a Monday evening. I would also talk to my gp about heartburn. I take lansoprazole to guard against this. Good luck.

[hunter5582]

GI problems are a common adverse effect of aspirin. It can take some time to show up. DO not ignore at is can be a sign of something more serious developing like an ulcer. Not to say that is happening, it is more likely just irritation (gastritis), possible due to the aspirin. It is Okay to take Nexium, but work with your docs as Nexium also has side effects. NOTE - I have been taking Nexium for years.

You already know that dizziness, tinnitus, and fatigue are all MPN-related symptoms. Some people do find relief with more aggressive treatment options. AN optimal individualized treatment plan requires consultation with a MPN specialist. If you hematologist is not a MPN Specialist, suggest finding one ASAP.

All the best.

[ciye]

I was prescribed landlords for the heartburn, though the n

[ciye in reply to ciye]

I will try again I was prescribed lansoprazole for the heartburn, no reason you can't take the nexium it does the same job.

[IrishHiker]

You sound just like me! Yes I ended up with daily heartburn and took a proton pump inhibitor (PPI) there are many names for them. I took it for only two weeks. It helps. Two weeks is the recommended amount of time to take a PPI. They actually slow down the production of acid produced but if taken longer term can cause troubles (you can Google all of that).

I also take daily antacids. You can take a PPI on and off periodically to control it and NOT have long term problems. Speak with your doc about it BUT before you do, please do the research yourself so you can have an informed discussion with your GP. Good luck!

[MaggieSylvie in reply to IrishHiker]

I'm angry again. It's what you've said about PPIs causing problems if taken long term. I have been on them long-term and they are probably the reason my TSH dropped so low, but no reason my GP should have diagnosed hypothyroidism on the strength of it without considering what medication I am on that might have caused it. I have stopped taking Omeprazule with no ill effects unless I eat bread, and have stopped taking paracetamol and replaced that with herbal remedies. The next thing I'm likely to stop is the alendronic acid and EvalcalD3 because I don't have osteoporosis and am noteven high risk for it. I'm due to see dentist in three weeks and hoping they can advise me whether I should continue for a while.

I suffer from MDS as well as MPN and have recently started a course of weekly Epoietin injections. I think, as a result, I no longer have that annoying army trudging through snow in my head, which was the first symptom that caused a different GP to send me to Haematology. I always try and get enteric-coated aspirin but pharmacists don't always give them to you. I could get them on prescription but they are so cheap to buy over the counter. We are at the mercy of these people who are supposed to do no harm.

[Oscarsboy]

Hello, I have ET and have all the symptoms you mention, and have had them since about March this year. Mine becomes reflux more than heartburn and I have 20mg Omerprazole which I can take up to twice a day if I need them. I have aspirin also 75mg per day. Do you use the the Gastro-resistant coated tablets which may help more? My main sysmptoms when platelets were at 550 were dizziness, ear ringing, (I still get this too and occasional deafness in one ear), burning soles of the feet, tingling in the fingers and feet, all the tell tale signs of ET. Am not sure why some GP's dismiss these as symptoms of ET, when quite clearly they are prevalent in many patients. I find the Omerprazole do help but they are on prescription only. I am now on Hydroxy so some of the symptoms are not as severe as they were as platelets are dropping. I have a full constultation at Guy's and St Thomas's on Monday so will discuss many of these problems and current meds with them.

[MaggieSylvie in reply to Oscarsboy]

Are your burning feet described as peripheral neuropathy? Most people describe it as a feeling like wearing socks (when you aren't). Doesn't hurt, but is clearly a symptom of something, but I've had it some years before I was diagnosed with ET. My GP gave me amitryptylline for it this year. It didn't help and frankly, I'd rather have the condition than live like a zombie. It's bad enough having fatigue.

[Oscarsboy in reply to MaggieSylvie]

I have never had this diagnosed as anything other than being a symptom of ET. However it is something I am going to raise at Guys on Monday to see if I can throw some light on what the issue actually is. Sometimes it is like they have a constant tingle that spreads up into my lower legs, but sometimes the soles of my feet go bright red and feel like they are burning. I did not have any of these symptoms prior to ET.

[MaggieSylvie in reply to Oscarsboy]

It would be interesting to know what Guy's say. My feet don't change colour or anything but there are lots of dark patches like bruises that are permanent. Some years ago a Chinese doctor said my blood was "stagnant".

[Oscarsboy in reply to MaggieSylvie]

I will try and remember/take notes on what they say. I have a list of questions a foot long!!!! and update asap. What an interesting comment by the Chinese Doctor!

[MaggieSylvie in reply to Oscarsboy]

Yes. I wish I had asked him to explain more but there was a bit of a language barrier. This was years before I had the noisy heartbeat that ended me up having a BMB!

[Uzza]

Hi,

I have had chronic heartburn for a few weeks then recently a large gastric bleed. I have also just had a gastro endoscopy to check for an ulcer or other lesions. None have been found since I have stopped aspirin. Because I am on Pradaxa and have had a duodenal bleed about two years ago, I have been taking aspirin every second day.

Cheers,

Uz

[doglover49 in reply to Uzza]

sorry to hear this, i hope you are okay, that all sounds really scary, i am lucky i have not had anything like this to cope with, i hope everything gets better for you

[Hopetohelp]

My appointments with haematologist are ,and have always been every 3 months. Enteric coated aspirin I found are good. Ringing in the ears normal for me too. Wishing you well with your next meeting

[doglover49 in reply to Hopetohelp]

thanks, iam going to get them today, it's definitely the aspirin, i forgot to take it til night time yesterday and was fine all day but had it nearly straight away after taking it last night

[MDI55]

I have had ET for 15 years and have had all these symptoms. The higher my platelets went the more the symptoms showed up and some showed up after starting Hydrea. I only have one thing that has helped the fatigue and pain part which is exercise. Swimming has been the biggest help ever. 15 minutes of swimming stops almost all the pain and fatigue. It is just hard getting to the pool and starting but after a few laps I can feel the ET Release

[doglover49 in reply to MDI55]

thanks, a few people have said this before, it's something i will have to push myself into, with work family stuff etc, its hard to find time

[Wyebird]

Hi, you don’t say what your age is or platelets level. I believe ringing in ears could be tinnitus and ET related. I would ring your gp about dizziness . Did your heamo know about it? Why 6 months time? Seems a long time if newly diagnosed. Are you on meds? I’m going to read your other replies now.

[doglover49 in reply to Wyebird]

i am 49, i was advised just to take an aspirin a day, i seen the haematologist twice, the first time i went i told her all my symptoms and she said hopefully taking the aspirin daily will help, the second time was 8 weeks after the first time and it was a different doctor, i told her i still had all the same symptoms. dizziness, fatigue, ringing in ears, few other things too and her reply was these symptoms are not related to your E.T go and speak to your G.P who i have already been going to for around 3 year with these symptoms so it's a bit like a merry go round, i asked her what are the symptoms of this and she told me tingling in the hands and feet! i am giving up with it all now, then she said well since everything seems fine we won't be in touch with you for 6 months, i have been back to my G.P who has referred me to ENT about ringing in ears but there is quite a wait (like everything) i think they mentioned platelets around 500/600 which she said to me were not too bad, i feel like i am a hypochondriac now lol

[Wyebird]

Definitely get an MPN specialist- Maz will be able to supply a list. Good luck

[Trinigirl]

Hi. I am 66 years old and was diagnosed with ET in 2017 although my symptoms started since 2008. I suffered greatly for all those years with dizziness, fatigue. blocked ears, sensation in the face and pain in my collar bone, tingling in the fingers and a few others. My platelet was above 800but immediately taking HU then to now, my platelet count is within range. My last count a month ago was 280. I was on aspirin daily but because of bleeding in the mouth (don't know if you ever experienced this) I take it 3 times a week. For the last six months I have been suffering with acid reflux. Never knew it could be the aspirin. I currently take pantecta which is working but long term use, I was told by my GP, can soften the bones. Thanks for the information because I am due to do an upper endoscopy. I hope you get good relief with your treatment and best of luck to you. I am in the Caribbean but will be going to see a MPN specialist in the USA soon. Thanks to this wonderful forum, we can share experiences and situations.