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British Lung Foundation
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Concerned Update

Hello all. A little while back I posted here about a chronic cough and breathing issues that I was having. Well it’s been nearly 5 months. I’m still waiting to see a specialist. I’ve had three different inhalers none of which work. My temperature is always out of whack in one direction or another, and now I have come to realise that my SATs aren’t very good either.

They seem fine when I am sitting, although even when sitting I now find myself out of breath. When I do anything to exert myself (getting up from a chair, rolling over in bed, eating...) then they drop. I walked upstairs the other night and my SATs hit 69%. They’ve hit the 70s too and at night when I lie down to sleep, they hover around 85-88%. I’ve had to start propping myself up in bed because when I lie down all I can hear and feel is my throat or chest wheezing and crackling which doesn’t help ones sleep much.

I’ve lost my appetite and just feel sick a lot when faced with food; I feel like my entire torso is full to the brim. I’ve lost weight unintentionally (2 stone!). I’ve had two X-rays that were both clear. Blood tests ruled out blood clots but showed high white blood cell counts and constant mild anaemia (even though I take iron tablets) and whacky shaped red blood cells.

I’m 26, and yes I’m obese but one day out of the blue I had a cough and breathlessness. Now it just seems to be getting worse. I’ve seen an asthma nurse who said my results weren’t normal, and I’m seeing them again next week...

I feel like I’m going mad. I’ve read a lot of stuff that causes normal people to worry. I’m just exhausted. I can’t breathe properly. My chest aches and it doesn’t feel muscular. My back aches too.

My parents are more worried than me, but I’ve thought about asking to get a CT done. The specialists may refer me but I don’t see them until December.

I can’t even make a hot drink without wondering where my breath went.

Anything would be helpful. Tips, suggestions, etc. Thank you in advance x

27 Replies
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Ask your GP if he will refer you for a CT scan. Please try not to worry as this will make you anxious which won't help your breathing. Please keep posting so we know how you are. Take care 😊 Bernadette xx

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Thanks so much! X

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Ask for a spirometer and PFT test, then go for the CT scan. Not worrying is hard to do, but you can do it.

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I think I’ve had those tests. (I think) seeing my GP next week, so I’ll ask anyway. Thanks so much.

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Hope you get some help next week from the asthma clinic. Perhaps if you insist they could hurry along an urgent referral to the respiratory physician ?

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They sent an “urgent” referral through last month. I’ll certainly do some talking that’s for sure.

Thanks x

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Good for you be insistent you need some answers. Keep us posted and tasks it easy .

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Hi. You said "whacky shaped red blood cells". I had that and found out that supplementing with folic acid (500mg/day) corrected it. Also may have something to do with your anemia.

webmd.com/a-to-z-guides/fol...

From above link

Any kind of anemia can cause problems like:

Fatigue

Lack of energy

Feeling short of breath

Headaches

Pale skin

Racing heart

Weight loss or not feeling hungry

Ringing in your ears

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Hi. I’ve had anaemia for like 3 years but the cough and breathing issues started randomly 5 months ago. My doctor said they didn’t think that the issue was the anaemia as I am on tablets and it’s only mild. I’ve been on folic acid too. My doctor was all “maybe you’re just one of those people who have anaemia for no reason”... who really knows?

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An x ray will only show fluid or infection, a CT scan is whats needed for a good look at the lungs.

But it may be your lacking certain nutrients, anemia can cause similar to what u describe. So talk to the drs about that they should be pushing for these tests.

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I’ve had anaemia for 3 years or so. The problem with my chest is more recent. Every time I ask what may be causing the anaemia they just say that it could be any number of things but haven’t done any more tests. They say they’ve done all they can at the local GP surgery.

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Hi,

Do you have an infection? What did the doctor say about your high white blood cell count? Also iron isn't the only thing connected to anaemia. There are other co-factors that are required for the iron to work.

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I’ve had repeated chest infections in the last 5 months which is unusual for me. The doctor said that the high white count wasn’t “that high”. My anaemia was iron related when we first found it, as it was really bad and iron tablets helped a lot.

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Hi,

Hopefully they will find out what is causing the breathing difficulties. You wrote above that you have tried three different inhalers but none of them worked. Which inhalers did they try and how long were you on them?

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This could also be an allergy, so you really need to see a consultant and get further tests done.

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You need to see a respiratory specialist. This has been going on for too long and you should not be left to struggle with it as you are. I see that you are waiting to see the specialist. They will most likely order the ct scan and breathing tests. Find out whose clinic you are booked in to, give them a ring and see if they can fit you in to a cancellation. Most of the secretaries for these consultants are very helpful.

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Hi triple tea you can bet it’s nothing serious because sinister things show up on tests you have had. I remember a post on here where someone had low lung function (that affects your breathing) but after they got down to the weight they should be stopped smoking took supplements for a minor problem built up their fitness level (exercise) they where fine. Good luck and take care xxx

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I get that weight doesn’t help me in this instance. But I’ve been overweight my whole life and only in the last 5 months have I had this problem. And I’ve lost weight but still have the issue. My asthma nurse didn’t see my weight loss as a problem either. “Oh that’s good!”

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Phone up EVERY day asking for a. Ct scan to your doctors if you have no joy there go to hospital yourself and tell them your symptoms you will get a ct in a couple of weeks or maybe even the same day good luck m8

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Please don't worry to much , which definitely won't help ,so for peace of mind ,see your doctor as soon as possible.

Take care .

Best regards Susan 🐘

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I do NOT want to cause you undo concern -- but the SATs you note are not good. Low

saturation levels can cause organ damage -- So my question is -- has it been suggested /or are you on supplemental oxygen??. I am. I know those SAT levels would cause me concern.

I wish you the best.

JCL

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No nobody has said anything about my SATs. I’ve mentioned the low levels but they don’t seem to cause any concern.

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Yes you should probably be getting some oxygen therapy with stats running that low.

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Hi Triple Tea, sorry you’re experiencing all these scary symptoms. I know how awful being breathless is and recurrent chest infections with fatigue is. Due to the complexity of my lung issues that causes recurrent chest infections, my GP now refers me to the respiratory ‘hot clinic’ attached to A&E when I go down with a chest infection. Here I get to see a respiratory consultant, have bloods, lung function tests and X-rays all within a few hours. I am lucky as I only live 20mins from the hospital but they refer from all over the southwest of England. So there may be a hospital ‘near’ you that have a respiratory hot clinic where you can be seen. I have to say a lot of my tests are inconclusive - infections rarely show on my xrays until they are really bad (and I have to be admired) the meds I take confuse the blood results, but the consultants are always great as they see other patients like me (who don’t fit into a convienient box) so I don’t feel like I’m going mad! I really hope you get the help you need x

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Oh my Triple Tea, so sorry to hear all you are going through, but you are with friends here. We all try to support each other, especially when it seems that no one else is listening and life is being so limited by our ill health. We are all so different so it's hard to say what would be best for you. Like many others I'm only able to rest sitting upright to keep the cough away. I find some relief from eucalyptus, iether in hailing over a bowl or even in a sweet, which I can keep in my mouth all night.

Also with coughing you may be fortunate to find something specific is triggering it. This could be pet related or in my case eating any dairy foods will cause serious coughing bouts around an hour or so after digestion. It may be worth seeing if there is a pattern?

Anyway, just thought I'd contact with the above as I was moved by your post. I hope that it improves for you...

Gino

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Sorry to hear you are having such a rough time TripleTea.

I was only referred to the respiratory clinic a few weeks ago and I found the specialist nurse to be brilliant. Sadly g.p’s are just that, they are not lung specialists. Do try not to get anxious as I know for myself that seems to make everything seem worse. Perhaps you could try some breathing exercises. They certainly take your mind off the problem. Good wishes and let us know how you get on.

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C.t

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