Breathless?: Does anyone else get breathless? I... - Behçet's UK

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Breathless?

Denise-- profile image
10 Replies

Does anyone else get breathless? I am writing this on the Behcets forum AND the Thyroid forum because I have Behcets and an underactive thyroid and am trying to figure out why I am so breathless. I cannot eat without feeling breathless even if it is something small. I get breathless talking and have to take a big breath inbetween words. Lets not go into walking up the stairs! Anyone else get this/ And ideas?

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Denise--
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goodlife profile image
goodlife

My mum suffers similarly with under active thyroid

Denise-- profile image
Denise--

Yeah I think it is the thyroid. Getting a lot of people on the thyroid website saying that they have the same symptom. Can't decipher between the symptoms of the Behcets or Underactive thyroid .....hmmmm ! Cheers :)

Badbechets profile image
Badbechets

Hello I have probable bechets and I get breathlessness, I have been told its inflammation in my rib bones where they join so I sometimes get a painful stabbing pain and can't lift my arms, eating walking and talking is a huge pain to, an anti inflammatory called dicloflex has helped me a little with this, so may be worth a try?? Hope it goes for you soon :)

Denise-- profile image
Denise-- in reply to Badbechets

Thanks, I'll mention it to him; have to get bloods done again tomorrow so I'll see what he says ! :)

devonshiredumpling profile image
devonshiredumpling

Late again, sorry! I have Behcet's and one of my abiding problems is shortness of breath. It is a problem that arises again and again with BD, sometimes due to the meds and sometimes due to where is inflamed at that moment in time. I had to jump through hoops to get it even looked at let alone diagnosed. Get it seen to!

Denise-- profile image
Denise-- in reply to devonshiredumpling

HI, I got a chest xray which came back normal...still breathless though so it's frustrating! I have an underactive thyroid and am getting bloods done; waiting on reaults so I think it could be something to do with the thyroid....

It's difficult to know which one is playing up...if not both! :)

devonshiredumpling profile image
devonshiredumpling in reply to Denise--

Yes, it's a problem but take a look at Mrs R's Airlifted to London post to get you even more confused - definitely behcet's linked to lung function eh? I also have Behcet's caused heart failure - which is what my breathlessness was eventually put down to. Well, they put the shortness of breath down to heart failure - it was my specialist who said the heart failure was probably the BD. Tis an absolute sod of a disease

Denise-- profile image
Denise-- in reply to devonshiredumpling

I know, it's crazy. The thing I am freaked out about is the fact that it affects lungs AND heart so the breathlessness might be a sign of a big problem. I used to be very active...always outdoors walking, surfing, swimming but now I feel like I can't because I thought I got extremely unfit one day ..... maybe the breathlessness has gone on for longer than I thought. scary stuff!

Heart failure must have been very scary!

devonshiredumpling profile image
devonshiredumpling in reply to Denise--

Yes, it was scary but not as scary (to me, anyway) as the thought of losing my sight. It can take all I have just so long as it leaves my vision...

Tobygosden profile image
Tobygosden

Hi, I had the same breathlessness as you and like you whilst I was under the care of my GP before I was diagnosed with BD I was sent for various X rays and chest CT scans to find out why I was so breathless and couldn't even walk up stairs. These still didn't provide any answers, neither did a consultation with a respiratory registrar. Once I became an inpatient I then had a CT pulmonary angiogram ( CT scan with contrast) which showed kind of clots in my lungs. Then I had a PET scan which showed the vasculitis in my lungs caused by BD. As soon as I was put on steroids the inflammation in my lungs reduced and although still nowhere near perfect I have better lung function than before. Im not sure if you have vasculitis in your lungs or pulmonary artery but worth thinking about?

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