Breathlessness

[Garden987]

I have read several posts about breathlessness with ET and am quite frustrated and would welcome comments from you lovely people. I had a chest infection for most of last year and as a result went to the Chest Clinic. Had CT scan which showed a shadow on my lung resulting from pneumonia 10 years ago and was told I have Bronchtiectasis. A further lung function test was done and I was referred to the Consultant (emphysema was mentioned). In. Recent letter from the consultant he quotes "your CT scan showed no significant abnormality and your lung function tests are good. Apparently, I don't have Bronchtiectasis but he is arranging an ECG as he can find no explanation for my breathlessness. I wonder if he has joined the dots - I.e. - people with ET do get breathless. So frustrated. Had a HIB jab (whatever that means) and am waiting for results. AAAGH!!!! Thanks all. Mary

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[fee13]

I'm too scared to get my lungs checked. ET JAK2+ and get breathless if I have to "talk a lot", do anything physical, taking a bath and when I'm stressed out or in a rush. It is reassuring your tests have come back negative but uncertainty still looms. Best of luck

[Garden987 in reply to fee13]

HI Fe. THanks for replying. Is there anything you do to help it? I have a very steep hill to walk up and it's very hard! GOod wishes. Mary

[fee13 in reply to Garden987]

Sorry I'm at a loss for relieving it. As P-O-T-S mentioned below it's a feeling of not getting enough oxygen. I've tried to slow my breathing down and taking deep breaths but after 2 breaths I've run out of air and gasping for more.

Someone had mentioned they were diagnosed with hyperventilation syndrome but reading an article about this it is caused through panic and anxiety plus has other specific symptoms that most of us don't have, as far as I know.

[Wyebird in reply to fee13]

Hi

I missed this post hence delayed report. It was me with hypovention syndrome. It is NOT anxiety. Hypoventilation syndrome is when 24/7 you breathe incorrectly. When you have an anxiety/ panic attack you just go through a short period of time breathing incorrectly due to panic.

Lung function tests revealed this through exercise. Clinically you can’t induce panic attack.

I had to have physio and learn to use my lungs correctly.

Breathlessness still occurs. I now believe but don’t think consultants realise how debilitating it is it’s my ET. I totally agree with you both. It’s reasuring. that it’s an ET symptom I find I have to rest as soon as it starts and that it’s expenditure of energy related.

[Garden987 in reply to Wyebird]

Hi Wyebird. Saw your earlier post asking for some positivity. So sorry things are. It good for you. I am writing to you now about breathlessness. Same as you, all tests are OK. Left message today for my haemo. Who will hopefully contact the Respiritory consultant.Don' think most of them have a clue and I too have had enough. All I can offer is a hug and hope we start feeling able to deal with this d...n illness. Love Mary

[Wyebird in reply to Garden987]

Thank you for you kind words. Apart from that I’m anaemic. Awaiting ferritin levels now.

I’ve just read there’s 400 types.

Why can’t we be tested for all 400.?

How, even privately can we get tested.

I already take a multi vitamin, chia seeds , and turmeric.

We are all different. As such we all might be deficient in something unique to us.

So so dispondant do to rant.

[Wyebird in reply to Wyebird]

Ok should have said sorry to rant

[Mica11]

I too had an ECG and a chest X-ray for breathlessness. My consultant said on rare occasion Hydroxycarbamide can cause heart and lung problems. Both tests came back clear, so still no nearer an explanation here either. I'm back at the consultant on 22nd, but I don't think they know why these things occur.

[subway]

I suffer from breathlessness. I am on hydroxy + anagrelide. Have had 3 CT scans and lung function tests. They tell me nothing is wrong but will continue to monitor annually. I am actually relieved to see I am not the only one with this issue. I also have a semi-permanent chest infection that comes in waves.

[P-O-T-S]

Hi Mary,

I'm sorry to hear about your problems with breathlessness. I wanted to reply although i'm not sure its relevant as I am still waiting for a full diagnoses from BMB. Still i got quite Ill I have been quite breathless when doing physical work but more importantly to me i have trouble getting what i can only describe as a full breath. This can happen intermittently and is something i have had in the past. when it did i had a breath test which showed that i have strong lungs with no underlying CPD issues or the like. It seemed to clear up after a while from doing more exercise which i haven't done much of for the last few months due to being ill.

When i went for a Gastroscopy they didn't seem surprised about the sympton when i mentioned it knowing that my records showed that i had enlarged varices so maybe its that that's causing it i'm not sure.

Maybe its more of a sympton thing than a treatment reaction.

I am now feeling much better generally but still have the problem so will be bringing it up with the Haem on my next visit in around a weeks time.

Either way i hope you get it an answer soon, the unknowing can sometimes make things more worrying than they may be.

All the best

[MCW22]

I have PV jak2 positive, which only got diagnosed because I went to my GP with breathlessness. After 5 months on Hydroxy it hasn't improved. Had all the tests, CT etc yet no explanation.

[Ebot]

Ah yes, breathlessness! Mine is linked to low iron levels. I could always tell when my iron counts had dropped - couldn’t walk and talk, breathless after doing simple domestic tasks and felt like I was wading through sludge. When I was initially diagnosed with ET I took extra iron. It takes a while to kick in but it definitely made a difference. With the new diagnosis of PV obviously I had to stop the iron supplements. I recently started Hydroxy and my MCV levels at the last count were much improved. The Haem said she’s not that interested in ferritin levels which she expects to be low (by now my Hb levels were better though Ferritin remained low) but the fact that my platelets were larger was of significance. And I think that is the reason I feel a lot better. (I can talk and walk - though anything with a steep incline is challenging!) I don’t have any lung function issues 🤞🏻but maybe my experience will help others. Hope you feel better soon.

[Nicky57]

Interesting. I've been checked as I suffer from breathlessness, particularly walking and talking or walking up inclines, but the lung function and Eco were all ok so no cause determined. Maybe it's the Hydroxycarbamide.

Nicky

[forwardocho]

Morning Mary

I suffered the same when diagnosed. Equally, I found this the most frustrating part of this disease as I was a dancer and would dance 3 hours a night 4 nights a week. Now, I can barely climb a flight of stairs without gasping for breath! I had every test humanly possible, my heart and lungs are very healthy. I was put on Ivabradine, initially just a small dose, which slows the heart down, now I'm on the maximum dose twice daily. I was told that when my platelets are high the breathlessness is worse as the heart is trying so hard to pump the blood around the body. My palpitations have improved slightly, but not to the point where I can power walk or go on a treadmill.

Angela

[Garden987 in reply to forwardocho]

HI Angela. Interesting about high platelets and blood pumping round the body. Hadn't thought of that. Maybe more exercise? Yeah,,right! Mary

[flfair]

Hi Garden

Magnesium deficiency, try some magnesium flakes in a bath.

Peter